4.6 Strategies carers use to reconcile work and care for an older individual ...... 60 ...... Illustrator. IT 18. F. 52. Mother. Dementia. H. DoneW. Psychologist. IT 19. F.
Carers@Work
Carers between Work and Care. Conflict or Chance?
Results of Interviews with Working Carers
„The work […] is a refuge. When I work I start to be again a person without all these problems on the shoulders, when I get back home the problems come back on me. [...] Caring satisfies me as daughter [...] if I wouldn‟t care for my mother I would feel much worse [...]. So the work is rather the realisation of the social sphere and caregiving is the fulfilment of the person‟. (IT -19)
Santini S., Lamura G., Principi A. Italian National Research Centre on Ageing (INRCA) June 2011
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1
Introduction ................................................................................................................................... 4
1.1 Aims and design of the whole project ............................................................. 4 1.2 Aims and Research questions of the carers study ........................................... 5 2 Inclusion of the literature review: some findings from the national literature according to the research questions ................................................................................................................................ 7
2.1 A socio-demographic overview ....................................................................... 7 2.1.1 2.1.2 2.1.3 2.1.4
The increased participation of women in the Italian labour market .............................. 7 Decline in birth rate........................................................................................................ 8 Ageing population .......................................................................................................... 8 The increase in divorces and single parent families ...................................................... 8
2.2 Information available in literature in relation to the project‟s research questions .................................................................................................................. 9 2.2.1 Question A: typical conflict-and-stress situations between work and care among the caregivers ..................................................................................................................................... 9 2.2.2 Question B: strategies to reconcile work and care for an elder individual .................. 12 2.2.3 Question C: influence of qualification level on the reconciliation of work and care .. 14 2.2.4 Question D: influence of employment and income situation on the reconciliation of work and care ............................................................................................................................. 15 2.2.5 Question E: the impact of gender on the reconciliation of work and care ................... 16 2.2.6 Question F: most effective supports at the public, company or societal level ............. 17 The matter is discussed hereafter by making a distinction between the societal/public level and the company level. ..................................................................................................................... 17
2.3 Conclusions.................................................................................................... 22 3
Methodology ............................................................................................................................... 23
3.1 Data Collection: Problem centred Interviews according to Witzel ............... 23 3.2 Research questions and Topic-guide ............................................................. 24 3.3 Sampling and recruitment .............................................................................. 26 3.3.1 3.3.2
Sampling strategies ...................................................................................................... 26 Ways of recruitment ..................................................................................................... 27
3.4 Data analysis .................................................................................................. 28
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3.4.1 3.3.1 Theoretical approach for data analysis ................................................................ 28 3.4.2 Transcription of the interviews .................................................................................... 29 3.4.3 Procedure of analysis ................................................................................................... 29 Results ......................................................................................................................................... 30
4.1 Introduction.................................................................................................... 30 4.2 Socio-demographic characteristics of carers and cared-for persons ............. 30 4.2.1 4.2.2
Carers features.............................................................................................................. 30 Cared for persons features............................................................................................ 32
4.3 Description of the Care Situations ................................................................. 34 4.3.1 4.3.2 4.3.3 4.3.4
Main care tasks............................................................................................................. 34 Amount of care............................................................................................................. 37 Reasons for taking care over ........................................................................................ 37 History of care .............................................................................................................. 41
4.4 Description of work situations ....................................................................... 42 4.4.1 4.4.2 4.4.3
Sector of activities ........................................................................................................ 42 Kind and quality of work ............................................................................................. 42 Number of working hours ............................................................................................ 43
4.5 Impact of reconciliation on the life of the working carer .............................. 46 2
4.5.1 4.5.2 4.5.3
Typical conflict and stress situations between work and care among carers ............... 46 Benefits from reconciliation......................................................................................... 55 Summary ...................................................................................................................... 58
4.6 Strategies carers use to reconcile work and care for an older individual ...... 60 4.6.1 Support measures ......................................................................................................... 60 4.6.2 Strategies ...................................................................................................................... 71 4.6.3 Summary: Which kind of support at the public, company or societal level is most efficient for the reconciliation of employment and care for older individuals? ......................... 75
4.7 Working carers recommendations for improvement ..................................... 75 5
Profiles of working carers ........................................................................................................... 79
5.1 Introduction.................................................................................................... 79 5.2 Description of working carers profiles .......................................................... 79 5.3 Conclusions.................................................................................................... 89 6 7
Discussion ................................................................................................................................... 90 Conclusions ................................................................................................................................. 91
7.1 What conflict and stress situations between work and care are typical among the caregivers? ....................................................................................................... 91 7.2 What strategies do carers use to reconcile work and care? ........................... 92 7.3 Influence of the educational level of carers on the work-care reconciliation 93 7.4 Influence of the employment and financial situation of carers households on the reconciliation of work and care ....................................................................... 93 7.4.1 7.4.2
Influence of the household structure on the reconciliation of work and care .............. 93 The influence of the kind of work on the work-care reconciliation............................. 94
7.5 Within the context of the actual parameters of work and family work, what kind of gender inequalities are due to work-care reconciliation? ......................... 94 7.6 Influence of the kind of care need ................................................................. 95 8 9
Literature ..................................................................................................................................... 98 Annexes..................................................................................................................................... 100
9.1 Description of the 60 cases .......................................................................... 100 9.2 Topic-Guide ................................................................................................. 105 9.3 Codes system ............................................................................................... 108
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1 Introduction The reconciliation of work and care for an older relative is highly relevant for future societies undergoing socio-demographic change as it affects the future working environment as much as the future provision of care for older people – both areas facing particularly serious challenges in the future. Moreover, the division of labour and roles within the family will also be affected, thereby impacting on an equal „work-life balance‟ for men and women. Therefore, innovative concepts are needed to exploit the existing capacity of our society. To this end, joint efforts by all societal actors concerned are required. Thereby, family carers and their employers share particular responsibility. Employment and family care are commonly seen as incompatible. The present research wants to show that the reconciliation of employment and family care is possible if accompanied by support measures at enterprise and social policy levels. Thus, a forward-looking and sustainable care provision can be guaranteed in an ageing society, and new productivity potentials in form of highly motivated employees can be made accessible.
1.1
Aims and design of the whole project
The project „Carers@Work‟ aims to identify transferable, innovative solutions that promote the reconciliation of work and care in four EU-member states: -
Germany
-
Italy
-
Poland
-
United Kingdom
Hence, this project compares four different „care regimes‟ regarding typical conflicts and strategies to enable the combination of work and care obligations. The project intends to identify gaps in existing knowledge about successful measures to enable informal carers to combine paid work and care and to analyse the reconciliation problematic at the enterprise level as well as at the carers‟ level. That is the starting point of this research „Carers@Work‟, which considers both the perspective of family carers and that of enterprises. Thus, the project „Carers@Work‟ refers to the central challenges of demographic change, namely „ageing workforces‟ and increasing longevity, which is very likely to result in rising numbers of people in need of long-term care. Furthermore, the research focuses on the „babyboomer‟ generation to which most family carers belong and changing life courses as an increasing female employment, the necessity to reconcile employment and care in several life phases (this is no longer limited to young parents), extension, differentiation and prolongation of old age, as well as receipt of care as a distinct phase in old age. Finally, the „new reconciliation variant‟ has been explored in relation to different family and life forms and the resulting new family contexts of old age. Those living in a „sandwich constellation‟ will still be a small minority – studying them will nevertheless have major implications for the future when their prevalence is likely to increase. The research embraces the following methods: a) International literature review; b) Secondary data analysis of survey data (SHARE and EUROFAMCARE); c) 60 topic-guide interviews with employed family carers in each of the four participating countries regarding individual reconciliation strategies;
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d) Case studies, examples of „good practice‟, and topic-guide expert interviews with representatives of works committees, trade unions and employers associations as well as documentary analyses of collective bargaining and enterprise agreements e) Economic expertise as an assessment of the resulting costs for the companies in Germany.
1.2
Aims and Research questions of the carers study
The reconciliation of paid employment and informal care is not a rare phenomenon among the workforce and becomes of increasing relevance within the next years. Working carers are characterised by typical factors: They are most often married women between 40 and 50 years, from whom about 25% cohabitate with their teenage children. A number of working carers also occupy several roles as spouse, parent and employee. Furthermore, care is mostly provided by daughters to their older mother/ mother-in-law, who is on average 76 years old. On average, working carers spent 4-9 hours/week undertaking elder and care obligations that are primarily related to „general eldercare„. However, nearly 50% of the working carers are also involved in „personal care‟. All in all, most studies show an overall proportion of about 10% prevalence rate of workers with care obligations. Even though increasingly international research addresses the importance of the reconciliation of elder care obligations and employment, most studies focus more on the impact on individuals‟ private lives and the strain of care giving itself. In contrast, there is still a lack of knowledge about how an unsatisfactory reconciliation becomes visible at the working place (e.g., absenteeism, lack of capability, reduced possibilities for career and promotion) and which strategies working carers use to enable the balance between job and care (e.g., working time reduction and re-organisation of work). Some studies also disclose the „respite function‟ of work, which can buffer the carer‟s isolation and depression. The research project „Carers@Work‟ aims to get a deeper look into the specific conflicts, strategies and demands faced by working carers. Therefore, semi-structured interviews with working carers have been conducted in Germany, Italy, Poland and the UK to answer the following research questions:
What conflict- and stress-situations between work and care are typical among the carers?
In many cases working carers experience controversial expectations from the work place and the care situation. Thus, they might indicate high levels of physical and psychological burden, which could be the case when caregiving is externally motivated and/ or if there is no help available accompanied by interpersonal problems between care receiver and carer. Furthermore, the workcare-situation is vulnerable to unforeseen crises, e.g. due to the decreasing health status of the care receiver. In all, an insufficient reconciliation of work and care has an impact on the carer‟s health status and wellbeing. Private life is also affected by the combination of work and care in forms of less time for the family, social contacts, hobbies and phases of regeneration. This research question asks for typical stress-situations which occur from an unbalanced reconciliation of work and care.
What strategies do carers use to reconcile work and care for an older individual?
This research question tries to find out which strategies at the workplace, in private life and regarding care are the most common and most successful. To enable the balance between job and care working carers need various strategies to facilitate this reconciliation, e.g. the re-organisation of the work schedule, working-time reduction and seeking for the help of others, e.g. social services as a substitute or in addition to help from the family.
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What kind of influence does the qualification level of the carers have with regard to the reconciliation of work and care for an older individual?
A high qualification level is associated with flexible working conditions regarding working time and work organization. On the other hand, lower qualified employees might be more likely to be affected by caregiving obligations in their families. This research question aims to highlight the influence different qualification levels have regarding the possibility a) to combine work and care in general and b) to use different workplace related strategies.
What kinds of influence do the employment status and income situation of the caregivers' households have on the reconciliation of work and care?
It can be assumed that a higher economic status promotes the reconciliation of work and care, because theses households might be more likely to purchase professional help from other, e.g. care service. In addition, the employment status – working full-time or part-time – might play an important role as well, when it comes to combine work and care.
Within the context of employment and care, what kinds of gender inequalities are produced by the reconciliation problematic?
Gender is one of the most important factors in determining which family member takes over the role of the main carer and whether an individual alters their working arrangement or gives up employment so as to provide care. Thus, eldercare is still marked by gender inequalities, because male carers are usually the „secondary care person‟ or „the alternative‟ when no female carer is available. However, the rate of male carers increased within the last years. This questions aims to find differences between male and female carers and/ or how sharing of caring tasks are negotiated.
Which kinds of support at public, enterprise or societal level best enable the reconciliation of employment and care for older individuals?
This question puts emphasis on the carers‟ wishes, expectations and demands of society, their employers as well as social policy makers. Furthermore, this question refers to existing measures, instruments and services on all three levels and their effectiveness for a better reconciliation of work and care.
Are there any specific individual conflicts or strategies related to the reconciliation of work and care for an older individual when comparing different countries?
Against the background of different care regimes the last question highlights the cultural differences among the four countries. On the one hand all four countries share also similar conditions, e.g. the core role of the family, but also there are remarkable differences, e.g. female labour force participation rate. To examine to what overall framework conditions in the four countries influence individual conflicts or strategies is the aim of a comparative report and not of this national background report.
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2 Inclusion of the literature review: some findings from the national literature according to the research questions 2.1
A socio-demographic overview
Family members in Italy are often considered the most important and, at times, the only providers of care for older people, filling in the gaps of a welfare system based primarily on money transfers and lacking social and health services (Ranci and Pavolini, in press; Zechner, 2005; Tesauro, 2008; Di Nicola, 2003). Empirical evidence from the Eurofamcare study (Quattrini et al., 2006) shows that in Italy older people living with the family are mostly cared for by women (76% of main caregivers), who are also often employed (43.4% of all Italian carers have paid jobs), working mainly in the public sector (46.8%) as well as in the private sector (31.8%), fulfilling positions as clerks (27.8%) or as professionals (26.1%). Even if the Italian literature shows an increasing participation of men from younger generations in the field of caregiving, the percentage of male carers still remains rather low in Italy today. According to the 2008 annual report by ISTAT (the Italian National Institute of Statistics), approximately three out of ten males living in a couple (with or without children) do not carry out any chores (see also paragraph 2.5 below) in terms of domestic work, defined as the time dedicated to family and domestic needs throughout an average day. Although of course the reconciliation issue is not a responsibility of the female population only (Pandolfi, 2008), considering however that the problems related to the work/family life balance are still affecting mainly women, the following analysis will focus on the economic and social conditions of female caregivers. With regards to this, some relevant socio-economic changes will be underlined, such as the increasing female population in the labour force, the declining birth-rate, the increase in divorces and single parent families, as well as the rising number of ageing individuals in need of care. All these factors play an important role in caregiving, redefining care methods, times and even subjects, changing the traditional family model and the expectations of those upon whom this model is based, in terms of conciliating paid work with the informal caregiving of older people.
2.1.1
The increased participation of women in the Italian labour market
Italy has one of the lowest labour market participation rates in Europe. The activity rate of the population between 15 and 64 years, 62.5%, is lower than not only that recorded in northern European countries, characterized by their different traditions regarding welfare (in Denmark, for example, the rate reaches 79.8%), but also in comparison to southern Europe countries, with which Italy shares similar cultural traditions (in Spain, the value is almost at 70%). Such gap becomes even more significant when taking into account the female component, since the employment rate of Italian women is 45.3%, which is higher only than the one recorded in Malta, whereas values in Denmark and Sweden are above 70% (ISTAT, 2008). An increase in the activity rate (Table 1) can be seen from 1995 to 2005, with a slight rise among men and a rather consistent one among women (from 37% to 45%). Nevertheless, even though the differential between genders is shrinking, it continues to be high compared to the results of other European countries, especially in Southern Italy (ISTAT, 2008).
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Table 1 Number of employed persons aged 15 to 64 years old and employment rate by gender (1995-2005) Number of employed persons in thousands, rates in % of total YEARS 1995 2000 2005
Number of employed persons Males Females Total 12956 7284 20240 13164 8046 21210 13738 8825 22563
Employment rate Males Females 66.2 37.5 67.8 41.8 69.7 45.3
Total 51.8 54.8 57.5
Following this trend, the problem of reconciling work and family tends to interest groups and growing aspects of society in Italy today, also suggesting an urgent need to redefine welfare policies and identify new models of public and private services (Piazza, 2000). 2.1.2 Decline in birth rate The decreasing fertility rate, which has reached extremely low levels in Italy, is possibly a consequence of this heavy burden that has been placed on both family life and the work world, or even a possible strategy to reconcile them better. This is the combined result of the growing number of women who, by choice or out of necessity, have only one or two children, in addition to the later age (today about thirty years old) at which women have their first child (Tomassini and Lamura, 2009). Between 1970 and 2002, there has been a drop from more than 2.7 children per woman to less than 1.2. The percentage of women aged 18 to 24 years old with a child has halved in comparison to the 1970s, shifting from 30% to 15%. Similarly, the percentage of children born to mothers aged 25 to 29 has been declining sharply, but only since the 1990s, while the percentage of children born to women aged 30 to 35 has increased by 15% since then (OECD-Vision, 2006). 2.1.3 Ageing population Related to the above mentioned phenomena, and the fact that people over 65 now make up one-fifth (20%) of the total Italian population (ISTAT, 2009), the already high care demand for aged people continues to grow in Italy. This can also be seen in the increase in the dependency ratio between the active (aged 15-64) and no longer active (over 65) population, which rose from 46% in 1990 to 51.1% in 2006 (INTRAGE, 2009). An even more consistent factor is the sharp increase in the number of people aged over 75 – those requiring most care – who have almost tripled in absolute value (from less than 2.1 million to over 5.7 million), growing from 3.9% to 9.6% of the total population (ISTAT, 1986 and 2009). This evolution does not have any equivalent in the European Union (Giannakouris, 2008), and a further, substantial increase is expected by 2040, when the over 65 will reach 31.3% and the over 75 16.6% of the total population (Istat, 2009). 2.1.4 The
increase
in
divorces
and
single
parent
families
The rise in the number of separations and divorces is a phenomenon occurring in Italy that can adversely affect the availability of family caregiving, even if it still occurs less often compared to other European countries. In 2005, there were 82,291 separations, up by 57.3% compared to 1995, and 47,036 divorces, up by 74% compared to the previous decade (ISTAT, 2008). This trend is relevant since separated or divorced women usually no longer work to „add‟ extra income to the family earnings, but rather work to financially support their own families directly. As a consequence, these women are less able to withdraw from the labour market to meet the possible care needs of older family members who lose their autonomy. 8
2.2 Information available in literature in relation to the project’s research questions 2.2.1 Question A: typical conflict-and-stress situations between work and care among the caregivers
2.2.1.1
General trends
In addition to the demographic trends described above, unpaid care work for older people who are no longer independent has become increasingly complex in Italy, and can include aspects such as housekeeping and consumption; family conflict resolution; maintenance of domestic technologies and the mediation with the institutions and welfare agencies (hospitals, local care services, paid care workers), besides the physical care and psychological support given to the older person. In Italy these multifaceted aspects of care are often worsened by the simultaneous presence of other subjects within the same household, such as children aged 0-3 and adult children forced to live at home because of the unstable labour market, for whom in many regions no professional services are available, thus again loading on their families‟ shoulders the provision of the required support. Italian working women are not always able to properly reconcile the multiple tasks they have to perform on a daily basis, also because of the inadequacy of current social policies and the insufficient changes in gender roles and the division of labour. This becomes clear when we consider that 30.4% of women would like to change their current balance between paid work and caregiving (ISTAT, 2008). In particular, 6.4% of women experience a situation where their role as a caregiver does not allow them to dedicate more time to work, while almost 25% of them experience the opposite situation; their work does not allow them to spend more time to help out dependent individuals. Taking into account employed people aged 45 to 64 years old who regularly take care of dependent older people or adults, 72.3% of men would not change the balance between paid work and caregiving, while 23.9% wish to work less and provide more care, and 4.2% wish to work more and provide less care. Among women of the same age bracket, 73.4% would not change the work/life balance they have achieved, while 21.5% would like to work less and be more involved in the caregiving and 5.1% would like to work more and give less care. People working part-time are generally more satisfied about their balance between work and caregiving (ISTAT, 2008). Caregiving for an old person can be very stressful, and the carer can use up his/her personal emotional resources. Caregivers are more vulnerable to negative emotions if the cared for individual suffers from behavioural disorders. So the stressing aspect is not the quantity of caregiving tasks, but the relationship within which such tasks are carried out. (Paroni P., Rizzi M.C., „Legami di cura. La famiglia e I suoi anziani non autosufficienti, Franco Angeli, 2004). So stress increases if: -
The caregiver hasn‟t got a sufficient support network;
-
The caregiver has a vague knowledge of the symptoms and give them a non-scientific meaning;
For working carers, stress increases as work absorbs the time normally spent for personal needs, so working carers tend to neglect their own health. 9
Pearlin et al., (1990), in accordance with the caregiving stress model, divides stress factors into primary and secondary. The former ones are directly linked to the patient‟s need and are:
Cognitive disturbances of the older person;
Functional deficit in the running out of the daily tasks;
Thinking disorders;
The caregiver‟s perception of the symptoms;
The caregiver‟s grade of relational deprivation.
The primary factors generate the secondary stress factors, which partially derive from the fact that each single person plays more than one role at once:
The conflicts between caregiver and other family members;
Economic worries;
Social and leisure restrictions;
Caregiver‟s somatic and psychological disturbs (insomnia, depression, chronic tiredness).
2.2.1.2
Specific Studies
A study in Milan A research study was conducted in 2002 in the district of Milan on the relationship between the need for reconciliation and stress (Tué, 2002), which involved a sample of 113 women, out of which 45 were employed in management positions in cooperatives (39.8%) and 68 were employed in small owner-operated companies (60.2%). The average age of respondents was 44.5 years old, an age bracket in which care tasks change recipients, moving from children to older parents. 11.5% declared they were assisting other family members, in particular older parents (9.7%) and the disabled (2.7%). In one out of three cases, the cared for person was partially or fully institutionalized. These results show that in urban contexts, family networks and networks based on solidarity are undergoing major changes in size. For one third of the sample, reconciliation is a constant stress factor. The majority of respondents (58.4%) found conciliation to be occasionally stressful, whereas 11.5% did not find it to be particularly stressful (responding with „never‟ or „only seldom‟). Stress due to reconciliation seems to prevail among those who work in cooperatives compared to those who work for a company (only 15.4% of the respondents who did not find reconciliation stressful work in cooperatives, whereas 84.6% work for companies), and among those who live alone or are single parents with children, compared to those living with a spouse. Various problems are emerging for carers regarding the joint management of family and work and need to be addressed, such as the fact they are always in a hurry, they are overloaded with work and they have little time for themselves. Satisfaction and stress, therefore, seem to be two sides of the same coin, when considering them in relation to reconciliation between caregiving and work. The topic leaves room for discussion regarding the 10
costs and professional choices involved. A study of the Lucania area A recent study conducted in Vallo della Lucania (Tesauro, 2008) has shown that family networks in Southern Italy, where families are traditionally supportive of each other, remain tight knit despite the fact that most families are responsible for caring for the dependent older family members. Families, women in particular, who take the „care worker‟ role, behave as expected by family members and work, more or less consciously, according to family network and community expectations. This qualitative survey, carried out in 2006, is part of a wider study aiming to identify the local social policies and uses tools such as semi-structured interviews and focus groups. This part of the study focuses on the caregivers for ageing residents in order to define the process of becoming fragile in relation to the family network and their relations. The results from this study show that caregivers have a more difficult time when they do not have a discrete support network of people who can in some way alleviate the burden of care and their social isolation in particular. Women feel obliged to take over the role as the „main caregiver‟ of their ageing parents as a sense of responsibility and as a gesture of gratitude to them, but also, as previously mentioned, for fear of being criticized by their community. The author argues: „... the loneliness and the absence of a support network capable of alleviating (even occasionally) the burden of care can have a negative impact on the caregiver's wellbeing. In the absence of some form of assistance, such as other family members, the main caregiver has a harder time while carrying out her role. And she, herself, becomes a vulnerable person‟. The research shows cases of women who could not find reconciliation between paid work and caregiving and who now live, as consequence, with a great sense of guilt because they were unable to take care of their ageing parents. These considerations suggest that in some cultural situations, such as in southern Italy, not only caregiving can be a psychological factor of stress, but not being able to provide it can be one, too. 2.2.1.3
A comparative study between Italy and Finland
Stress factors double for women who find themselves as a „dual carer‟, i.e. are responsible for paid work, childcare and care for older parents at the same time. In a comparison between Italy and Finland (Zechner, 2005), Italian women seem to use far less public support than Finnish women. This is due to cultural factors, as well as to lacking network services and social policies. Carers are able to combine paid work and care work with fewer conflicts wherever there are effective welfare policies in place. On the contrary, when welfare systems are inactive, they rely on paid private care or assume the responsibility themselves of taking care of the older family member in need of care, giving up investing in their own professional development (Table 2). Table 2 Comparison between carer conditions in Italy and Finland Aspects of care
In Finland
In Italy
Older people are transferred to Older people with impaired Children keep their elder nursing homes or assisted living state care parents in their homes facilities without architecture barriers Provided by the private sector Support for carers Provided by the government and black market Care costs Sustained by the elder person Sustained by the elder person Strategies to negotiate care Few women work part-time. Most of Women prefer part-time job work them can maintain a full-time job
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2.2.1.4
The Eurofamcare study
The evidence emerged from this study reveals that Italian working carers are often forced to make sacrifices, considering that 13.6% of them have to reduce their working hours as a result of their care work (Quattrini et al., 2006). These hard work restrictions are consequences of taking on the role of carer and can influence non-working carers, too. Among Italian non-working carers, indeed, 9% claim they cannot work at all and 7.4% declare that they have left the labour market because they were not able to combine paid work with care responsibilities. Above all, 5.3% of all carers (working and non-working) declare that they are not able to develop their own career or studies because of their role as a carer, while a further 4.9% are only able to work occasionally. 2.2.1.5
Concluding remarks
The few comparative studies carried out on the topic in Italy suggest that the practice of care in this country is very different and depends on the economic, urban and socio-cultural situation, elements that all contribute to the development of different strategies for work/care reconciliation. Already overloaded with housework because of the frequent presence of adult children in the family, some Italian women leave the labour market early to care for their older parents. Ageing family networks can also cause reconciliation problems to arise, which can be seen not only in newly formed families, but also in maturing women, who need to split their time among cohabiting adult children, grandchildren who need support, and frail older people who may or may not be living with them (Del Boca, 2007).
In conclusion, we can state that in Italy stress factors and conflict situations related to reconciliation are mainly – albeit not only – psychological. This is a result of a continuous effort made mostly by the female members of the family to reconcile work and care schedules, making sure not to disappoint the expectations of both their older family members and the wider community, but end up with exposing themselves to serious psycho-physical consequences. In other words, family networks in Italy help, on one hand, to find appropriate care solutions but, on the other hand, threaten to „trap‟ the caregiver because of their strong cultural constraints, transforming care from an act of love and solidarity into an „obligation‟ without the ability to choose. Caregivers continuously feel trapped in their roles as carers, and feel forced to give up any other aspects of daily life (in terms of career and free time). This is closely related to the mechanisms underpinning the Italian welfare system, which considers families mainly as providers of services and social support, rather than targets. 2.2.2
Question B: strategies to reconcile work and care for an elder individual
As shown above, care of dependent older individuals in Italy is associated with a higher risk of exclusion from the labour market as a result of the limited support policies available for family carers, both at a public and company level (Marenzi and Pagani, 2003). Given this situation, an Italian working carer has to decide whether to give up working earlier than expected, or to try reconciling care and work when faced with the need to provide support to a dependent older relative. In the latter case, there are three main possibilities: working part-time (thus reducing the number of hours worked); sharing responsibilities of care with other individuals from the informal network; hiring a private care assistant to care for the older relative. The following is a summary of the main elements that characterize each of these options. 2.2.2.1
Part-time work
If it is true, as noted above, that in Italy almost one working carer out of seven had to reduce their working hours due to the need to assist older individuals, with no significant differences between 12
men and women (Quattrini et al., 2006), the literature shows that part-time work is often experienced as an obliged choice and leads to a halt or slowdown of the career. In Italy the rate of part-time jobs for women - which are more common than for men, as in all European countries has recently increased, but remains far below the EU average, reaching only one out of four women, compared to three out of four in Holland, and more than two out of five in Belgium, the United Kingdom and Germany. It is interesting to note that women often choose part-time work because of their care responsibilities, while men do it because they cannot find full-time jobs due to their low education (ISTAT, 2008). One of the dilemmas of Italian working carers is whether to choose to continue working full-time to earn more, in order to then give part of this income to hire some professional care services for older family members (see Section 2.2.3 below on this topic), or to opt for a part-time position, to take care personally for their older family members. 2.2.2.2
The family network
Although socio-demographic scenarios are changing, as explained above, family still remains the first resource for reconciling work and family care in Italy. When family ties are close and consist of a wide network of people, they allow the sharing of care responsibilities in an informal network, thus reducing the need for external assistance. One contributing factor ensuring that this happens depends on the still relatively frequent multi-generational cohabitation. Having adult children within the same household facilitates providing daily support to older parents, unlike other Northern Europe countries, where it is more frequent for older individuals to be taken care for in institutions or through different forms of sheltered housing (Zechner, 2005). 2.2.2.3
Professional family carers
Whenever the (lack of) geographical proximity represents a problem, or for any other difficulties that may prevent adequate participation of care, Italian working caregivers (more often than nonworking) are making use of home carer workers at a growing rate. Most of them are of foreign migrants, who take the role as the „main caregiver‟, becoming the „director‟ or „manager‟ of the care responsibilities (Tesauro, 2008). This reconciliation approach has become far more widespread in Italy and in most Mediterranean countries than elsewhere (Bettio and Solinas, 2009; Lamura et al., 2008), because it seems to „work out well‟ for everyone involved: the cost of care is low for the older people and their families, there is less pressure on public services as there is less demand, migrant workers find work and a home at the same time (Da Roit, 2006). For the relevance of this phenomenon within the Italian context, the topic will be discussed below in further detail in Section 2.2.2.4. The role of migrant care workers within the Italian elder care sector An increasing number of Italian families have turned to migrant care workers to provide care for their frail older family members. Although available figures are actually to be considered only as estimates due to the fact that a large number of families employ migrant care workers without a regular contract, the available data (Table 3) still allow us to observe with clarity that, especially after the acceleration occurred in 2002 following a national legalization campaign, foreign migrants now represent the overwhelming majority of home care workers in Italy, whose overall number has increased by almost four times in the last decade. It should be underlined that the extent of the phenomenon has been such, that it reflects a structural change in the perception by the Italian society of who should provide domestic care, now identified mainly in foreign migrants – and no longer family members - in a sort of what we might call „ethnification of elder care‟ (Lamura et al., 2001).
13
Table 3 Home care workers in Italy by nationality (1991-2005) Total 1991 1995 2000 2001 2002 2003 2004 2005 2007
181.096 192.942 256.803 268.730 541.098 542.651 502.547 471.085 774.000*
of whom with foreign nationality 35.740 67.697 136.619 139.505 409.307 411.425 371.830 342.065 700.000*
% 16,5 35,1 53,2 51,9 75,6 75,8 74,0 72,6 90,4*
Sources: up until 2005: INPS (various years); 2007: Pasquinelli & Rusmini 2008
2.2.2.4
Characteristics of migrant care work
Another useful source for capturing the scope of this phenomenon is represented by the EUROFAMCARE study, according to which over 13% of Italian households providing informal care to a dependent aged person are privately employing domestic care workers (Lamura et al., 2006), who - as shown by the data reported in Table 3 above - are mainly represented by foreign migrants. The households who are most likely to resort to this solution are those who are in charge of the most severe care cases, such as those providing assistance to a family member with dementia (over one out of four Italian families facing this challenge employs a migrant care worker) or someone who is severely disabled (over one third of these households opt for the help of a migrant care worker) (Lamura et al., 2008). This seems to suggest that the employment of migrant care workers has become in Italy a systematic solution to tackle heavy long-term care needs, when these cannot be properly met either by traditional home and residential care services, or by family care only. The latter observation seems to be confirmed indirectly by the fact that, in most cases, the employment of a migrant care worker is organized in form of a live-in solution (i.e. implying coresidence of the employed migrant with the person to be cared for), since this is a practical way to reduce costs for both sides (Lamura et al., 2007a). Often this occurs when the older person is living alone (Lamura et al., 2007b), so that we can state that this care solution is de facto starting to change even the traditional landscape of living arrangements characterizing older age in Italy. Finally, in order to understand why this strategy is so appealing for Italian families caring for older people, we can think of the motivations driving them to employ migrant care workers as a list of the top priorities which the Italian long term care system is currently unable to meet: „to ensure constant care‟ (care continuity); „to keep the older family member at home‟ (ageing in place through home care); „to be able to keep on working‟ and „to safeguard one's own family‟ (reconciliation of caregivers‟ paid work and family responsibilities); „lack of appropriate alternatives‟ (to grant an acceptable level of care quality) (Spano, 2006).
2.2.3 Question C: influence of qualification level on the reconciliation of work and care The last decades of Italian history are characterized by a significant increase in the level of 14
education of women, so that today there is a greater number of women possessing a higher education degree than men (ISTAT, 2005). This change, however, has not been enough to ensure that Italy (along with Greece and Spain) leaves its „unfortunate‟ position of having one of the lowest rankings in Europe in terms of female employment, as observed above (ISTAT, 2008). Italy is the European Country with lower percentage of women with Low Qualification Level employed and the third last for women with secondary and university qualification Level employed. The level of qualification is a very important factor (Del Boca D, Rosina A., 2009) as in Italy women with higher qualifications have more chance to start a job and to remain in the labour market. With reference to the research question examined here, this situation seems all the more worrying, as it is known that employed individuals with higher levels of education cover significant professional roles and are generally more successful in addressing reconciliation issue, by making a better use of resources, goods and services offered by the market, while managing to have a satisfying life (Crespo, 2007). Besides, in the more educated couples, partners collaborate more in caregiving, so they become a further resource to reconcile work with care (Del Boca and Rosina, 2009) This is confirmed by the fact that women with low levels of education are the most disadvantaged in the reconciliation of work and care (which is also associated with lower rates of employment and fertility), as evidenced by the fact that 80% of women who declare themselves to be unsatisfied with their reconciliation possess a middle school diploma only (Tuè, 2002). In Italy this population segment is characterized by an increased employment rate and a lower fertility level in comparison to the past years (OECD e Vision, 2006). Moreover, reconciliation of work and care is not usually facilitated today by the fact that traditional male sectors and jobs are opening up to participation of women in medium and high positions and innovative sectors, as a result of the increase in the level of female education. This requires indeed a commitment, which until now has been typical for men, which drives more and more women towards careers that are „incompatible‟ with care responsibilities; the latter, however, continue to be considered Italian women‟s responsibilities, thus defining a real contradiction throughout their careers and lives. 2.2.4 Question D: influence of employment and income situation on the reconciliation of work and care It was noted above how one of the available reconciliation options was to resort to part-time work. It is obvious that such a choice also has economic consequences, since working cares and their families are in this case exposed to a greater risk of poverty due to the decreased revenue (Di Nicola, 2003). The choice to opt for a migrant care worker is also closely linked to the availability of a sufficient amount of financial resources, which might derive not only from the older care recipient‟s income, but also from public cash-for-care benefits (whose provision is positively associated with the employment of migrant care workers, see on this also section 2.6.1 below), as well as from the income of their children. The latter shows indeed that a probability to hire migrant care workers is 6-7 times higher when they belong to the highest income decile than the one recorded by children belonging to the lowest income decile (Lamura et al., 2008). Finally, and crucial to this research question, is the fact that the decision to privately hire a migrant care worker is strongly affected by the position of children and daughters-in-law in the labour market, since employed children/-in-law show a much higher propensity to opt for this solution 15
(Fig. 1).
Fig. 1: Carers employing migrant workers, by relationship and working status Daughter-in-law
Son
Employed Not employed
Daughter
0
Eurofamcare data in Lamura et al. 2007
5
10
15
20
25
%
30
Therefore the availability of a higher income makes it easier for the working carer to adopt better reconciliation strategies, especially out of the private care market. The literature is indeed unanimous in believing that those who belong to higher social classes prefer to invest in their career, rather than abandoning it to dedicate themselves to care, as most often those who belong to lower social classes do. It can therefore be concluded that belonging to an upper social class encourages the reconciliation of work and care (and Ranci and Pavolini, in press). 2.2.5
Question E: the impact of gender on the reconciliation of work and care
In order to integrate what has been already mentioned regarding the association between gender inequality and the reconciliation issue, it is necessary to underline that Italy is rather rigid in terms of gender roles within the family, as household tasks and care work are mainly accomplished by Italian women. These dedicate 5 hours and 20 minutes a day on average to family work, while German women reach 4 hours and 11 minutes, Finnish women 3 hours and 56 minutes and Spanish women 4 hours and 55 minutes. While Italian women spend therefore more time on this work than all other European women, Italian men dedicate instead only 1 hour and 35 minutes to family work (ISTAT, 2008). With regard to the time spent on paid work, the gender ratio is clearly inverted: both Italian and German women dedicate 1hour and 52 minutes (compared to the 2 hours and 33 minutes worked by Finnish women and the just over 2 hours of Spanish ones), while Italian men dedicate on average 4 hours and 15 minutes to paid work. From another point of view, about 3 out of 10 men living in a couple do not do any kind of family task during a normal day, a situation which is experienced by no woman (ISTAT, 2008). This can be partly considered a consequence of the rigidness of the Italian labour market, if we consider that, taking into account employed women only, other European women work generally less compared to Italian women, thanks to a higher ratio of parttime jobs. Under such circumstances, it is not surprising that working Italian women sleep less than their European counterparts, and are ranked in the fourth-last place in terms of time dedicated to leisure as a result of the above-mentioned imbalance (ISTAT, 2008). The above situation is also changing only very slowly, if we consider that between 1989 and 2003 family work performed by Italian women has decreased by only 20 minutes (from 5 hours and 40 minutes to 5 hours and 20 minutes), only partly compensated by an even more modest increase – 17 16
minutes – recorded for men (from 1 hour and 12 minutes to 1 hour 35 minutes) (ISTAT 2008). As a consequence of this „functional specialization‟, Italian women are disadvantaged in the labour market due to the care-work overload and a greater risk of poverty, especially when they have chosen to dedicate themselves completely to family responsibilities, according to the traditional family caregiving model (Di Nicola, 2003). Even the recent mass employment of „migrant care workers‟ is indirectly reaffirming the strength of this paradigm, according to a mechanism which is not changing the gender inequality existing in this field, but simply extending it to female migrant care workers, transferring Italian women‟s care responsibilities over to them (Colombo, 2003). 2.2.6 level
Question F: most effective supports at the public, company or societal
The matter is discussed hereafter by making a distinction between the societal/public level and the company level. 2.2.6.1
Support measures at a public and societal level
Legislation The following laws have been introduced in Italy to promote better reconciliation between paid work and family care: law no. 104 / 1992: workers are entitled to three paid leave days per month, so that they can assist disabled relatives up to the third degree (spouses, children, parents, brothers and sisters, grandfather-grandchild, uncle-nephew). The condition is however that the assistance is continuous and exclusive, also in absence of cohabitation, as specified by the Law March 8 th 2000, n.53 (article 19). law no. 335 / 1995: of the 36 days (3 days per month multiplied by 12 months) of paid leave granted by law 104 / 1992 above (see previous point), 25 are also recognized in terms of social contributions for pension benefits (leaving 11 days are not covered for pension purposes); law no. 53 / 2000, „Disposizioni per il sostegno della maternità e della paternità, per il diritto alla cura e alla formazione e per il coordinamento dei tempi delle città‟: employees are entitled to a three days paid leave per year in case of serious illness occurring to a relative up to the second degree (spouses, children, parents, brothers and sisters, grandparents-grandchildren). Furthermore, both public and private employees may take up to two years of paid care leave (even split into shorter periods) to assist their dependent relatives, this time however not being counted for pension purposes. At the beginning the Law 53/2000 granted paid care leaves at the parents of disabled children only, in a second moment the Law 388/2000 extended this right to the children of disabled elderly parents. The Law 53/2000 introduced also a series of financial incentives to promote the adoption of further measures to promote a better work-care reconciliation at local and company level. The Article 9 of the Law 53/2000 appropriate contributions for firms that intend to realize positive actions directed to the conciliation between professional life and family life with the objective to introduce new organizational and managerial formalities of the times of job or services able to qualify the firm as family friendly. The objective of the financed actions thanks to the Article 9 are to facilitate the conciliation of the times of family and professional life through the concession of contributions for the experimentation and the introduction of particular forms of flexibility of the working performance. The contained list in the original version of the Art. 9 have been enriched by the financial Law for 2007 (Law December 27th 2006, n. 296), following which the possibility has been established to receive financial support also for interventions and actions directed to favour the articulation of the working performance and the training of the working carers of disabled elderly to load and to 17
qualify the firm as place of promotion of forms of reconciliation (www.isfol.it/Dettaglio_Focus/index.scm?codi_focus=432&codi_percorso=50&num_pag=2). The Art. 38 of Law n. 69 of June 18th 2009 modified the Art. 9 of 53/2000 Law, widened, among others, the amount of recipients of the financing. The competent control bodies are currently studying the implementation regulations of the new article n. 9. (www.politichefamiglia.it/documentazione/dossier/conciliazione-l-53/le-politiche-per-laconciliazione.aspx). It has to be underlined that the company projects financed thanks to this article were relatively few, and this is a signal of the scarce interest of the Italian companies in the reconciliation.
Law 388/2000 (art. 80, paragraph 2). Judgement n. 19 of 26th January 2009, the Constitutional Court has extended the right of two years paid leaves also to children caring for co -living parents in case of lack of other people able to care for a person with severe disabilities (initially paid leaves were only for parents of handicapped children). (www.handylex.org/congretribuiti.shtml) Check of the bills: n. 784/2008, n.1405/2008, n.1718/2009 (amendments to the Law of 2009 on increasing the women‟s retirement age) on the work and family life reconciliation under discussion in the Parliament. Law n. 133/2008: women employed at Public Administration, caregiving for an old disable family member, do not have any more the right to a reduced working schedule but have to merely apply for it. The acceptance of the application will depend on the Service manager‟s approval. The European Union has asked Italy to set the same retirement age for men and women. In the public sector the measure will come into force from 2012, when also women will retire at 65. In the private sector, up to now, there is no restriction in this regard. Indeed in this way, the EU intends to foster the gender equality and stop the early retirement of women, who in this way are more at risk of poverty, receiving lower pensions than their male colleagues. In the opposite direction is the bill 2206- „Norms in favour of workers, who caregive for severely disable family members‟, approved by the House of Commons on 19th May 2010 and on the way to be discussed in by the Senate. The text indeed provided for an „anticipated exemption from service‟ for public workers caregiving for a severely handicapped family member as well as the anticipated payment of the pension to private workers. If the law will be approved as it is, it would not support the caregiver in keeping his or her paid work, and above all it will, once again, put exclusively on families‟ shoulders the burden of caregiving for elderly adults (Lancioni, 2010).
Support services They are: - Home care services - Money transfert - Servizi residenziali Home care services To allow old people to age in the same places where they spent most of their life is one of the main objectives of elder care in the western world. However, on the other hand, the investment in home care services has been made with the awareness that such an aim is not attainable for all dependent elderly (Gori and Casanova, 2009). Home care services are made up of the wide range of continuing care services (servizi di assistenza continuative), provided to the dependent older person at home, to improve the quality of life of the older person as well as the one of the caregiver. The main home 18
care services are: - Planned home care service (Assistenza domiciliare programmata, Odp): the set of services provided by the GP at the patient‟s home in agreement with the National Health Service. It falls within the competence of the National Health Service. - Home hospitalisation (Ospedalizzazione domiciliare, Od): care exclusively provided by professionals and with technologies within hospitals. It falls within the competence of Local Health Services and/or Hospitals. - Integrated home care services (Assistenza Domiciliare Integrata, Adi): integration of health and social services. It falls under the competence of Local Health Services and municipalities. - Home care service (Servizio di Assistenza domiciliare, Sad): supports in the daily activities. It falls under the competence of municipalities. In Italy 4.9% of older people are provided with home care services, out of which 3.2% is Adi (integrated home care services) and 1.7% is Sad (Service of home care). Within Europe Italy, together with the other Mediterranean countries, is one of the countries with the lowest percentage of users. Indeed in Italy home care services are mainly focused on particularly fragile old patients, so that the Italian users of this kind of service have a much higher rate of functional and cognitive damage than in almost all other European Countries (Carpenter et al., 2004 in http://kaldi.landspitali.is/lsh_ytri.nsf/2019280b5bf902c70025690e004de3ea/deb793eea2f488a9002 56cec004a44e6/$FILE/ATT53NQY/I58(ADHOC)aging2004_04_02.pdf. From the early 1990s up to 2009, the users of Adi have increased fourfold but the difference in comparison with other European countries is still big. In the mid-2000s, the percentage of older users in northern Europe was 13%, whereas in Southern Europe it was 4% (elaborazione di Gori C e Casanova G. su dati OECD, 2008). Money Transfers There are two types of money transfers: the state care allowance, which is nationally paid out and the care allowance, which is locally paid out. The state care allowance was created in 1980, in favour of disabled civilians. The amount is paid by INPS (the Italian institute of national insurance) at request and an health commission has to previously check on the real total disability of the elderly. In 2009 it amounted to 472, 04 euro per month. The contribution is regardless the user‟s income level and the dependency grade, unlike other countries Germany, France and Spain, where more categories of users are set and so there are more money levels. The state care allowance is by far the most widespread measure to support older people, as on 1 st January 2008, it reached 9.5% of over 65, rising from the 5% of the early ‟90 to 8.9% of the mid2000s. The care allowance came to be in Europe in the ‟80s and became popular in Italy from the early ‟90s. It is paid out by provinces, municipalities and local health services to dependent people or to their family members. It is an aid to families spending a lot on care for their dependent family members. Services specifically addressing the needs of family carers of older people are very rare, and are only present in some of the more advanced regions of the Northern part of the country. The empirical evidence from the Eurofamcare study highlights that four-fifths of Italian carers do not make use of any type of service (Quattrini et al., 2006). Of those who did, the great majority (16.4%) mentioned the general practitioner as the only type of service they used. This clearly shows how dramatic the lack of services designed specifically to support carers is - such as for instance 19
counselling, training, self-help and mutual support groups – which only 1 out of 50 carers benefits from. The already mentioned widespread employment of private home migrant care workers is partly due to the presence of some public incentives. These include the provision of a State Care Allowance of 472 Euros per month for severely disabled persons, whose use is free and therefore easily employed to hire migrant care workers. Furthermore, fiscal incentives (allowing up to 480 Euros of savings per year) are provided in terms of a deduction of 19% of the care costs (such as those deriving from hiring private care staff) borne by the cared-for person‟s family as well as by his/her children‟s family. Many local and regional administrations provide own care allowances, often on top of the State-granted ones. The fact that so many Italian families are relying on monetary care allowances is reflected by the Eurofamcare findings showing that, when Italian caregivers were asked to indicate their preference for support measures to sustain their caregiving activity, the most common request was for economical support (38%), followed by external help outside of the family (21%), a part-time job (17%), a paid leave of absence (15%) or even a not paid one (8%) (Quattrini et al., 2006). Residential services In Italy the proportion of older people in nursing homes is rather low (2%) and stable from 1971 to 2001. These are mostly private, and users are frail and over 80 years old. Compared to Europe, Italy is among the countries with the lowest number of older people in these facilities, in fact the European average is 5.1%. Over the past decade, EU countries have reduced the costs of housing to increase the cost for home care. In Italy, the institutionalization has been muffled by the phenomenon of the family assistant (Pesaresi and Brizioli, 2009) Good practices The following are some examples of good practices that have had a direct impact on the reconciliation patterns through their services or work done to promote care awareness. Award for companies/organizations adopting good practices in promoting reconciliation between work and family. This initiative was established by the municipality of Forlì in cooperation with trade unions and employers‟ organizations with the purpose to raise awareness of the labour market on the caregiving issue. This initiative is connected with the provisions made by law 53/2000, which allocates funds for companies wishing to implement good practices for balancing work and family life, by supporting business projects that provide support to employees with care responsibilities towards their children and other relatives in need of care. In 2006 the award was given to „Formula Services‟, a cooperative specialized in services founded in 1975 by a group of nine women, which has three policies in place: flexible contracts which consider employees' preferences for schedules and work locations; a reorganization of work programs; and the introduction of job sharing for a number of different roles. Work and family life reconciliation actions. A project approved and co-financed by Regione Marche on the reconciliation between family life and work, proposed by the Province of Pesaro and Urbino (Department of Education, Work and Equal Opportunities). This is the first concrete action that came from the „Memorandum of agreement for the promotion of positive action for women‟ signed in 2008 by trade unions, employers‟ associations and the local Province. The project allows starting and developing initiatives to facilitate the lives of women and men engaged in work, who also have to take care of children, ageing and/or disabled individuals, through incentives for conciliation in the workplaces. The following are currently being experimented: flexibility in start 20
and finish times at work; counselling services for personal and family problems; a „time bank‟ (see more below on this issue); flexible schedules that can be self-managed; part-time positions and job sharing in companies and cooperatives. Furthermore, vouchers up to 250 Euros per month (for a maximum of ten months) are being granted to assist women - who are employed or unemployed, or are in training or on a work/study scholarship – in reconciling their time dedicated to the care of frail, dependent or disabled ageing individuals (Regione Marche e Provincia di Pesaro-Urbino, 2007). ‘The town network’. The Municipality of Forlì organized this project thanks to funding by the European Social Fund from 2001-2003, and implemented it in partnership with EFESO (Board of Education and Social Economy), trade unions, the company Electrolux Zanussi and the Emilia Romagna region. One of their targets is to develop a collaborative approach for the government and the development of territorial conciliation policies, testing actions aimed to satisfy the needs of working women with family responsibilities (children and older individuals to care for). The undertaken actions were the following: a) the establishment of a conciliation board coordinated by the Municipality of Forlì, and composed of professional associations, unions, and project consultants; b) a survey on the conciliation needs of Electrolux Zanussi employees; c) experiments on the home educational service „Il Portagioie‟, managed by the cooperative „Acquarello‟ with the distribution of vouchers; d) the possibility of developing and opening a „Work-family Help Desk‟ within the company to provide information about the contents of law 53/2000; e) experiments on tele-working in five cooperatives of a local „Consortium for Solidarity‟. Alpha Project - Work and family harmony. This project is an example of collaboration between the public and private sectors to implement good practices. It is a pilot project funded by Sicily‟s Regional Office of Professional Training at the Department of Labour, thanks to the support of national funds and under the coordination of „Italia Lavoro Sicilia‟. The purpose of this project is to diffuse vouchers to reconcile work and family life, as a useful tool of active labour policy to facilitate the achievement of more equal opportunities. ‘Knowledge, dissemination and application of the law 53/2000’. The Office of Social and Youth Affairs and Equal Opportunities of the Province of Arezzo organized this project in 2003-2004 with the aim to bring awareness to care responsibility sharing to overcome the imbalance within the family of the two genders. The objectives were to educate young people about the issue and promote a new kind of care culture, starting with children and students of middle schools and secondary schools to start building a „new kind of social pact‟ between genders and generations. Time Banks. Time banks came into existence in Italy in the mid-1990s and there are by now more than 300 across the country. Formally recognized also by law 53/2000, a „time bank‟ is a „credit institution‟ in which time is deposited instead of money, and according to the rule that every single hour provided is always worth the same, regardless of the service that has been offered and of who is providing it. The time bank helps to connect people looking for services and those delivering them, and considers reciprocity as a kind of aid between equal individuals, a sort of cooperation which is different from volunteer work. It has indeed multiple purposes: developing a social relationship system; highlighting individuals and their skills; helping individuals work out daily life problems; fostering good working relations within the community which has almost been forgotten in town life (Amorevole.- ECAP Emilia Romagna). 2.2.6.2
Support measures at a company level
Policies at a company level: empirical evidence As previously observed, during the mid-age period of life around 50 years old (the so-called 21
„sandwich generation‟) many women and some men are compelled to leave their jobs in order to take care of an ageing parent (ISTAT, 2008; Marenzi and Pagani, 2003). The loss of these employees means for the company, losing knowledge and capability and facing expenses to substitute employees and train these substitutes. Giving carers the opportunity to reconcile their caregiving tasks with work allows them to reduce consequently absenteeism (Starr et al., 2008). The above mentioned study carried out in the province of Milan shows that only 57.3% of companies offer their employees flexibility promoting reconciliation between caregiving and work. The most common forms of flexibility concern start and finish times (41.6% of cases) and part-time jobs (36.3%). Other opportunities are barely used such as reduced hours on Friday evening and telework. Almost 70% of the interviewed women declared to be making use of these forms of flexibility: in 68% of cases they take advantage of flexible start and finish time, 29.4% work part time and there is only one case of tele-work. The study also underlines that self-entrepreneurship could possibly facilitate reconciliation (Tué, 2000). Company Policies: examples of good practice Very few examples of good practices at the company level could be identified in Italy (Magistro, 2006), probably also because the information on some of them is not widely disseminated. Bracco Italia is a company providing support services to family care through the presence of a social worker in the firm and home care services for ageing individuals. Whirpool Varese is a company which, by means of integrative labour union agreements, has implemented a part-time system that has been increased to 36 hours weekly, and has created a 31.5 hour work week, with shifts from 7pm to 1am. Luxottica is a large company which has signed an agreement with the trade unions to create a system of domestic welfare, which supports their 7.800 employees whenever the public welfare services do not arrive. The aid provided is not in money but in facilities for the purchase of primary goods and also for medical and care services at health centres, including paediatric services. Their philosophy is to create a system to serve the family, including support measures to foster care for ageing and disabled individuals.
2.3
Conclusions
As the above reported findings show, in Italy we can observe a still widespread tendency to care for older people to be carried out by the family, with an impact which is mainly affecting women as they bear this responsibility more frequently and extensively. On the other hand, because of current socio-economic and demographic transformations, the scenario is evolving as care is increasingly shifting from the family to privately paid migrant care workers, thus deeply changing the traditional Italian family care model, mainly characterized by daughters assisting older parents in an exclusive way, giving up – or sometimes not even starting – paid work. This change has been accompanied by a growing female participation in the labour market, the observed mass employment of migrant care workers and by an increasing availability of both state and local care allowances. The financial amount made available by the latter seems however too low not only to ensure adequate support to meet the needs of dependent older people, but also to represent an incentive for Italian women to leave (or not search for) paid work, differently from what might have been observed in other countries, where higher economic supports to carers might end up „trapping‟ them out of the labour market (Lundsggard, 2005). 22
All trends summarized above contribute to make today‟s Italian care regime more similar to the American model, consisting of „low cost‟ access to care based on migrant workers willing to endure disadvantaged conditions of work, as long as they can more or less gradually gain some citizenship rights (Roit, 2007). Precisely this aspect of paid care workers characterized by considerable irregularity can be interpreted as an adaptation „from the bottom‟ of the traditional system of family care, and not driven from – almost inexistent – normative or political intervention. Under such circumstances, the main strategy for reconciling care and profession is based on the employment of a paid home care worker, using institutionalization as a last resort. Over the last two decades, indeed, the number of older people in nursing homes has been steadily decreasing in relation to the total older population. Some very recent data1 confirm the above picture, with some variations (Ranci and Pavolini, in press). These findings show that, among older people receiving the State care allowance, 39% live with other relatives (almost exclusively children), 16% live with a spouse and 17% live alone. The latter, however, have children who live nearby and support them in almost all cases, thus confirming that geographical proximity is an important factor in defining the Italian model of care. Indeed, 93% of older people receive help from other relatives to carry out daily activities, and 44% can count on the help of several persons. What is peculiar for Italy, however, – differentiating it from most Central and Eastern European countries – is the relatively high number of older people living with a private paid care worker only (as high as 18%), to which we should add a further 9% living with their children and a paid caregiver. Therefore, the image of the Italian middle aged woman trapped in their informal elder care work should be updated, in order to take into account the increasing support Italian families receive from migrant care workers. This „strategy‟ does not seem however to be sufficient to solve the reconciliation problem in all cases, since the study from Ranci and Pavolini reports that still 16% of informal carers have to give up working because of their care duties. Another Italian peculiarity concerns the non-professional status of many older adult women, who are in many cases housewives and retirees. The relatively low retirement age in Italy (in 2005, the average age of withdrawal from the labour market was 58.8, with a median age of 57.2 – EUROSTAT, 2007) allows indeed that many Italian women start caring because they can retire at a relatively low age, thus are in a sense partly „exempted‟ from the reconciliation problem. It is therefore possible to conclude that the Italian carers‟ decision to quit working depends not so much upon the possibility of receiving public support, but rather of relying on private care work (and on the necessary economic resources to pay for it) as well as on a good network of informal support.
3
Methodology 3.1 Data Collection: Problem centred Interviews according to Witzel
The interviews followed the model of „problem-centred interviewing‟ as outlined by Witzel (2001). This approach offered a means of reconciling deductive and inductive research methods as researchers using this method are receptive to the narrative presented by the interviewee yet at the same time are aware of the existing empirical data on the topic which provides the focus for the interviews. Scheibelhofer (2005) argues the approach allows the interviewer to utilise a number of interviewing techniques within one interview in that they begin with a narrative approach, then a thematic interview and finish with the collection of „socio-statistical information‟ at the end. In terms of the disadvantages of this approach, it places significant demands upon the interviewer in terms of their ability to employ three styles of interviewing in one session. 1
These data could be included only at this stage of the report since they are still in press.
23
A problem-centred interview begins with a preformulated introductory question not unlike the biographical narrative approach. This initial question should be broad and is then followed up with general exploration to draw out more details of particular aspects of the interviewee‟s narrative. As a result, it is key that the interviewer takes field notes to allow them to return to important issues once the interviewee has completed their narrative. The second type of question included in Witzel‟s approach are ad-hoc questions. Scheibelhofer (2005) argues their name is a misnomer in that they should actually be prepared in the form of an aide memoir to ensure all topics related to the research question are covered, and to assist with the comparability of results (as a consequence, they are in fact „supplementary questions‟ or prompts). These specific explorations utilise knowledge from the literature to produce additional questions on areas that may not have been included in the narrative, but should avoid reverting to the „question-and-answer game‟ style of interviewing. Finally, there are questions for understanding whereby the interviewer seeks clarification on earlier statements in the interview. Scheibelhofer argues the interview should finish with a questionnaire related to socio-economic characteristics of the interviewee. For Scheibelhofer, this should be presented at the end of the interview so as to „keep the more unstructured part of the interview as unrestricted as possible‟ (Scheibelhofer, 2005: 23). In terms of the interviewers‟ conduct during the interviews, Scheibelhofer argues the preformulated introductory question „should stipulate a narration without intervention by the interviewer…the interviewer should encourage the interviewees to dwell in their own ideas without making any substantive contribution such as asking additional questions, proposing varying possibilities to answer, etc.‟ (Scheibelhofer, 2005: 23). The ad hoc/ supplementary questions in the topic guide should provide prompts, as opposed to a rigid structure. Indeed, the interviewer should endeavour to follow the narrative presented by the interviewee when asking these ad hoc/supplementary questions. In the final stages of the interview, the interviewer should summarise the main points of the narrative to allow the interviewee to elaborate or clarify any points made. Witzel also advocates the use of a questionnaire to gather data on the interviewee‟s characteristics. Therefore, in line with Witzel‟s assertions, for each interview the researcher had: - A short questionnaire to gather data on the social characteristics of the interviewee; -
Guidelines or „a supportive device to reinforce the interviewer's memory on the topics of research and provide a framework of orientation to ensure comparability of interviews‟ (Witzel, 2000: 4);
-
Tape recorder;
-
Post-scripts to accompany tape recording.
3.2
Research questions and Topic-guide
Based on the aforementioned method, the topic guide contained three elements: - the pre-formulated introductory questions: these were designed to encourage the interviewee to provide a narrative; -
the supplementary questions: these followed on from the pre-formulated introductory questions, and should be asked if the interviewee has not already included the answers in their narrative; and finally
-
the questionnaire: this was presented to the interviewee after the interview as a means of collecting data on their social characteristics without interrupting the flow of their narrative.
The idea is not to revert to a „survey‟ format during the interviews, but to encourage the interviewee 24
to provide expansive answers through the pre-formulated introductory questions with the supplementary questions providing prompts if these areas are not covered by the participant‟s narrative. In the project proposal we promised to answer the following research questions in our study, which were proven by literature to be the most relevant ones within our context. A What conflict- and stress-situations between work and care are typical among the caregivers? B What strategies do carers use to reconcile work and care for an older individual? C What kind of influence does the qualification level of the carers have with regard to the reconciliation of work and care for an older individual? D What kind of influence do the employment- and income situation of the caregivers' households have on the reconciliation of work and care? E Within the context of the actual parameters of employment and family-work, what kind of gender inequalities are the results of the reconciliation problematic? F Which kind of support at the public, company or societal level is most efficient for the reconciliation of employment and care for older individuals? G Are there any specific individual conflicts or strategies related to the reconciliation of work and care for an older individual when comparing different countries? Question A-F should be answered in each national report. Question G has to be left to the comparison report. By deciding to use the problem centred interview according to Witzel as the method of collecting data we had to operationalize the research questions into questions usable in the topic guide. Therefore we transmitted the research question into six main questions in the topic guide, which however, did not simply resemble them. The six questions had to be asked in exactly this way in each interview in all four countries and were meant to give interviewed carers a stimulation to narrate their situation. Each of the main pre-formulated questions was connected with a series of supplementary which should help the interviewer to ask more deeply when the conversation got stuck or answers were not satisfying and make sure that all relevant issues were touched by the interviewed person. The supplementary questions act as prompts for the interviewer to ask the interviewee should they not be addressed organically in their narrative. Thus the topic guide was structured around the pre-formulated questions which allowed the interviewee to provide a narrative. Once the interviewee has answered a particular pre-formulated question, the interviewer could then address the areas that were not been included in the narrative. As a result, the interview did not revert to a „question-and-answer‟ game, or necessarily proceed in a linear fashion through the supplementary questions. The idea was not to produce an overly structured interview, yet at the same time we have to collect data relevant to the research questions. Thus the supplementary questions act as an „insurance policy‟, in case the interviewee did not include details of these areas in their answers. As a warm up question which also should enable the interviewer to get a first impression of the care situation and be able to adequately interpret the later mentioned costs and conflicts we asked about care history and care situation. (1) Care History: Can you tell me something about your role providing care- how did this come about? / Care Situation: Can you tell me something about your actual care situation- how did this come about? In this context we also directly asked about motivation to care and the reasons for this care arrangement. Usually by asking this question we got already a first insight into costs and conflicts. The second block of questions concerned the work and work history, where carers described their actual work situation and gave a short inside into their working career and their educational background as well as a short insight into their partner‟s situation, if available. (2) Work and work history: Can you tell me about your current work situation? 25
With the third package of questions we reached the first core of our research, about impact of combining work and care which mainly provided us with information on research question A, about costs, conflicts and benefits. (3) Costs, conflicts and care: Could you describe the impact of combining work and care on your life? This was followed by questions about services carers use and support they receive at home and at their work place. With additional sub-questions we tried to find out strategies carers use. (4) Strategies: What support/services do you use to overcome these problems (or at least attempt to) and reconcile work and care? This was followed by questions concerning further improvements of reconciliation: (5) What could make reconciling work and care easier? Both questions helped to answer research question B and F. The last block of questions was a wrapping up phase and enabled us to make carers to sharpen and summarize some thoughts developed during the interview, and then slowly fade out of the interview situation (6) Wrapping up What is the most difficult aspect of combining work and care for you? What is the most positive aspect of combining work and care? If you look back, what would you have done differently? In the light of your experience, if you met someone combining work and care, what advice would you give them? What do you do to unwind/ take timeout? What are your wishes for the future? In a year‟s time? To be able to answer the questions C, D and E we had to do some cross cutting analysis. To receive all relevant information we added some sub-questions to our main topic guide questions. By preparing the topic guide we had to make some slight changes in our phrasing concerning the research questions: The first amendment relates to the question about the „level of qualification‟. The operationalisation of high and low level of qualification was decided to be done with support of the ISCED scale. This scale is very helpful but uses education instead qualification as a measure. Correspondingly we decided to analyse the level of education and not the level of qualification in our study, which may be a difference in several countries. The second amendment relates to the income situation of carer‟s household. Already during discussing the research questions with our advisory board it became clear that firstly most carers would not be willing to unveil their income to strangers and secondly not only income matters, but also fortune, property and pension. Accordingly it was decided to not ask about the income situation, but more generally about the influence of the care situation on the financial situation of carer and carer‟s household. Correspondingly the research question has to be changed here
3.3
Sampling and recruitment
3.3.1 Sampling strategies All the six „cells‟ coming from the chosen sampling criteria were filled in as planned originally (Tab.4), except for the one matching „Couple, one working‟ with „High qualification level‟, for which could not be possible to find enough cases (Tab.5). The difficulty in recruiting people with such a profile is probably due to the Italian families‟ socio-economic characteristics and cultural values, since in a family in which only one member is working and earning (almost always the husband), the non-working member, i.e. the wife, is the one who usually provide care to older family members. This usually happens when the working member has a high education level, more responsibilities and prolonged working shifts. The three reported cases are indeed referring to 26
women with a retired partner who is not directly involved in the caregiving activities. The seven missing cases have been moved to other cells: one in the „couple both working/high qualification level‟ and six in the „couple both working/low qualification level‟.
Table 4 Level of qualification and Family/Income structure Couple, both working
Couple, one working
Single
Total
Higher level of qualification (ISCED 4-6)
10
10
10
30
Lower level of qualification (ISCED 1-3)
10
10
10
30
Total
20
20
20
60
Table 5 Real sample distribution Couple, both working
Couple, one working
Single
Total
Higher level of qualification (ISCED 4-6)
11/10
3/10
10/10
24
Lower level of qualification (ISCED 1-3)
16/10
10/10
10/10
36
27
13
20
60
Total
3.3.2 Ways of recruitment As far as the recruitment method, out of 60 interviewed caregivers, almost half (29) were selected through a „word of mouth‟ process among researchers, three through the specially provided flyer, 13 through the snowballing technique and 15 suggested by NGOs, care and other voluntary associations for older people
Table 6 Ways of recruitment
27
Ways of recruitment
Number of Interviewee/Carer
Chamber of crafts/Unions
15
Private contacts/ Colleagues
29
Snowballing
13
Flyer
3
Total
60
3.4
Data analysis 3.4.1
3.4.1.1
3.3.1 Theoretical approach for data analysis
Qualitative Content Analysis according to Mayring
To evaluate the collected interview material we needed a method which enables us on the one hand to cope with a huge amount of text (transcribed interviews contain more than 1200 pages) within a very limited time, and on the other hand make sure that partners in all of the four participating countries would be able to use a strategy of analysis as comparable as possible. Therefore we decided to evaluate our interviews with the method of qualitative content analysis according to Mayring (Mayring, 2000; Mayring, 2008). Qualitative content analysis is defined “as an approach of empirical, methodological controlled analysis of texts within their context of communication, following content analytical rules and step by step models without rash quantification” (Mayring 2000) For our purpose the most interesting procedure offered by Mayring is the method of “structuring with regard to content”, which aim it is to “filtering specific topics, contents and aspects out of the material and to summarize it. Which content it is that should be extracted, will be named by categories, (and as far as necessary) sub categories, which were developed theory driven” (Mayring, 2000: 89 - own translation). In the centre of the qualitative content analysis are categories, which can be gained either inductively or deductively. According to the approach of “structuring with regard to content” it made sense to use the deductive category application: “Deductive category application works with prior formulated, theoretical derived aspects of analysis, bringing them in connection with the text. The qualitative step of analysis consists in a methodological controlled assignment of the category to a passage of text” (Mayring, 2000: 4). 3.4.1.2
Typology building
According to Mayring (2000), we developed categories of Code-System through an inductive model. Following this criterion, the material was worked through and categories were deduced step by step and reduced to main categories with different level of abstraction. Now we have three level of abstraction, and the third contains national specificities (2000). The categories of Code System are the basis to focus variables and attributes to define different groups and then “empirically grounded types”. Every type is a sub-group of the group of working carers and a 28
combination of their attributes. According to the theoretical approach of Kluge, we constructed the following profile of working carers. Each group has internal homogeneity and presents aspects of heterogeneity towards other groups (Kluge, 2000). The factor that allows a working carer to work and care for the dependent elder person, are supports and their combination so, in the creation of the working carers‟ types it was necessary to identify which factors influence different choices and strategies. These factors have been identified in two variables: the care burden and the commitment on the work front. We combined care and work levels of burden and four types of working carers came out according to the level of work and care. The amount of work was determined by the number of working hours. We decided to create a threshold of 30 weekly working hours to define the concept of high and low level of work, „low‟ up to 30 hours and „high‟ from 31 hours up. The level of care came out combining the caring hours, namely the daily care need even if not wholly provided by the interviewed main carer, with the kind of impairment described by working carers. 3.4.2 Transcription of the interviews The recorded interviews were faithfully transcribed, reproducing what the interviewed person said. The punctuation was used so to reproduce the breaks and uncertainties of the spoken language, for example by using ellipsis. In the transcriptions also some dialectal forms were inserted, as well as the syntactic errors, the incomplete phrases, as those aspects of the spoken language, made the interview more communicative, providing useful information on the person‟s cultural level, grade of gained confidence with the interviewer, the awareness of what the person is experiencing and the grade of personal emotive working-through of the experience. Many pauses and uncertainties can signal the interviewed one is currently revising some aspects of his/her life. During the text, in brackets, it was underlined the tune of the voice and the emotional content of some expressions with the aid of the interviewer‟s brief comments. 3.4.3 Procedure of analysis To develop categories according to the deductive category approach, we used the theory driven topic guide (see above) as a first structure to establish a system of categories and develop a first draft with main categories the same in all countries. Afterwards two further levels with subcategories were built, which seemed to be relevant in all countries, from the third level on, countries made own decisions. As advocated by Mayring (2008), the definition of the units of analysis were made, and the code unit (smallest component of the material - a word), the context unit (the biggest component of the material -the whole interview and the evaluation unit (order of evaluation - case by case) was decided. Although the agreements were that quotations belonging to a category should be always as short as possible, but as long as necessary. In all countries several pilots were conducted and evaluated with the aid of the theory driven developed system of categories. In doing so not only was the topic guide tested, but also the usefulness and appropriateness of the category systems was proved. After this first passage through the interviews several feedback loop with the whole group were conducted and necessary amendments at the category system were made: „The aspects of text interpretation, following the research questions, are putted into categories, which were carefully founded and revised within the process of analysis (feedback loops)‟ (Mayring 2000:3). To not lose track on our data, we used two strategies. Firstly we put a headline over each interview which consisted of the most remarkable sentence of the interview. It should be a sentence which 29
immediately would bring the picture of the interviewed carer back to the interviewers / researchers mind. Secondly we decided to prepare small vignettes on each case as recommended by Witzel, were we describe briefly the main contents of the case, like care situation, work situation, central conflicts and benefits, support services and strategies. The evaluation of such an amount of interview material in such limited time was only possible because of computer assisted evaluation methods. In all countries the programme MAXQDA was used. It does not do any evaluation but is of great help in classifying, connecting and combining data. The function of setting up memos, allowed it to prepare the key sentences and the short vignettes. The results from our post questionnaire could be set up in an additional list of variables which can be combined with texts and codes as well as exported to SPSS. Especially this list of variables was of great help by developing the different types of carers (see down below).
4
Results 4.1
Introduction
This chapter summarises the data emerging from the interviews, starting from the sociodemographic characteristics of the sample, going through the description of the caring and working situations and focusing on the impact of the work-care reconciliation on different aspects of the daily lives of the interviewed caregivers. Afterwards there is an insight into the strategies adopted by working carers in order to better reconcile family responsibilities with professional ones. A section on suggestions provided by respondents to improve the working carers‟ quality of life is presented at the end of the chapter.
4.2 Socio-demographic characteristics of carers and caredfor persons
4.2.1
Carers features
From the demographic point of view, the sample was mainly made of women; as for marital status of the respondents, there was a significant predominance of married subjects or with a stable relationship. Two thirds of the sample cared for their mothers and their care-need was mainly due to their cognitive problems. About the working situation, the majority of respondents worked more than 31 hours per week and were employed in the Public Administration. The common feature of all the interviewees was the importance given to work, which is also considered a way to escape from caring responsibilities. Reconciliation had a negative impact especially on caregivers‟ emotional and affective spheres. However caring for an old family member had also some positive effects. Combining work and care is a daily challenge, a race against time that working carers face by adopting different strategies and supports according to their work commitments and their polder relatives‟ care needs. In Italy the data collection was mostly carried out in urban areas and, in some cases, in little towns placed in the south or north of Ancona, which is the regional capital. 30
The marital status of the sample is described in Tab.7. More than two thirds of the interviewed caregivers were married or had a stable relationship; 28 out of 42 subjects are women. Thirteen were single; two people are widowed, whereas three were separated/ divorced.
Table 7 Marital status of carer Female
Male
Married /partnership Widowed Divorced Single Separated Total
Total
28
14
42
1
1
2
1
1
2
10
3
13
1
0
1
41
19
60
As shown in Table 8, more than half of the interviewed caregivers had no children (31) and, among those with children, only 14 had children under-16. There are two subjects who cared for their infant children (aged under six years) together with their older family members; moreover this activity had to be combined with paid work. In addition to this there were cases of adult children living with a working carer, who helped their parents to care for their older family members sometimes.
Table 8 Number of caregivers with children Female
Male
Total
Without children
22
9
31
Children > 16
13
4
17
Children < 16
8
6
14
21
10
62*
Total
Il totale supera il numero degli intervistati poiché alcuni caregivers hanno un figlio < 16 ed uno >16.
Table 9 summarises some of the interviewed caregivers‟ personal data, such as age, gender and living situation and compares them with hours spent caregiving or working, in order to have an overall view of the sample. Firstly we notice the great predominance of women (41 on 60), mainly aged between 50 and 59: these data confirm the carer profile described in the literature: they were mostly women, belonging to the „sandwich generation‟ (De Rose and Racioppi, 2011), usually squeezed between work and care for children and older family members. On the other hand, the longevity of the older people in need of care is confirmed by data of the last section, the majority of the cared for persons being aged between 80 and 100.
Table 9 Socio-demographics Gender Age
F M 20 - 29 30 - 39
41 19
1 5 31
Living situation
40 - 49 50 - 59 60 - 69 70 - 79 Single Single and Cared-for Person
11 39 5
Partner (or other relative like sister of carer) Partner and Children Partner and Cared-for Person
8
Partner, Children, Cared-for Person
1
Cared for Person and Migrant Care Worker
2
0 7 2
TOTAL
29 1
60
As to the living arrangements (Tab. 10) the carer tended to preserve the independence of the own family, from the older parent, even if there is always a preference to be very close to the cared for person: almost all lived at less than 5 km away from the cared for person, and only one lived 80 km away from her old mother and provided care on the weekends. Three carers lived with their own family and the older person (with night and day migrant care worker) in two connected flats within the same little villa. In only one case the carer lived alonedespite a close relationship both parents were in a rest home. Six caregivers lived alone with the cared for person and when they are at work a migrant care worker looks after the elder person. Table 10 Relationship to the person in need and gender of carer Female
Male
Total
Mother
32
8
40
Father
5
10
15
Mother-in-law
1
0
1
Father-in-law
0
0
0
Spouse
0
0
0
Grandparents
2
1
3
Aunt/Uncle
1
0
1
41
19
60
Total
4.2.2
Cared for persons features
Feelings of working carers are partially related to the reasons of the care need, which within our sample, in more than two thirds of the cases (23) concerned cognitive impairments.
Table 11 Causes of care need and number of persons in need
32
Reasons for Care Cognitive Impairment (including other diseases) Old Age-Multiple reasons (walk deficiencies, blindness, deafness, Apoplexydiabetes) / Myocardial Infarction (stroke-Ischemia) Cancer Falls Psychological problems (anorexia, depression) Others (Diabetes), SLA (amyotrophic lateral sclerosis)
Person in Need of Care 24 15 13 2 2 2 2
Total
60
In two cases out of 60, the care need started with a fall (IT1 and IT5) followed by an older person‟s sudden downfall, regarding other aspects. For the interviewed caregivers it was hard to clearly establish if the fall was the consequence of a previous cognitive damage or if it was the hospitalisation, due to a psychological trauma, which caused the cognitive decline. Psychological illnesses appear progressively and for family members it is difficult to realise that something medical is wrong (IT10 e IT12). The depressed older person cannot be left alone and needs lots of attention. To look after him/her means to face his/her permanent sadness whilst trying not to be overwhelmed by it. In two cases out of 20 the older person was suffering of cancer (IT6 and IT11) which made it difficult to manage the old family member, above all from a psychological point of view. Chronic diseases such as diabetes (1) and the cardiovascular ones (22) have often suddenly started with heavy consequences on the daily management of patients, due to the frequent blood tests and the pharmacologic therapies (IT12 e IT14). Among older ones suffering from cardiovascular pathologies, the care need of eight cases started because of a stroke, making the cared for individual motor and cognitively disabled. „[...] Physically she walks really badly even if she is one, who does her best „. (IT-13) „[...] Sometimes she has some moments of confusion. For example, her left memory is a bit more relating to the past whereas she does sometimes have some difficulties with the present‟. (IT-42)
The table below shows that, out of the sample, 3 caregivers had been looking after the old person for more than 12 years: of the interviewed, n. 13 cared for the mother who had suffered a stroke for 19 years; the interviewee n. 46 had being caring for her diabetic, depressed mother for nearly 20 years (we estimate this caregiver is aged around 35); and the interviewee n. 50 had started 20 years ago to provide care for her mother, when diagnosed a brain cancer. From that moment she had been with her mother through all phases of this disease, which due the most recent operations, had later developed into a form of dementia. There were 13 interviewed persons who became caregivers 5 years ago and 6 who became caregivers ten years ago. We notice that, generally speaking, long term care is very prevalent.
33
Table 12 Duration of care in years Duration of Care in Years
Number of Carers
Until 1 year
5
2-5 years
27
6-9 years
9
> 10 years
9
Total
60
Table 13 Number of people cared-for and their relationship to carer Frequency
38 12 3 1 1
1 Person
Frequency 2 People
6
Person 1 Mother Father Grand Mother Aunt Mother in Law Person 1 Mother
Person 2 Father
In the Italian sample, most caregivers looked after one single person, who very often was the mother (38), or father (12). In three cases, the cared for individual was the grandmother or a very old, widowed aunt without children. In only one case the interviewed person was caregiving for their mother-in-law. The six cases, reported in Table n. 10, the interviewees were caring for two persons at once, i.e. old married couples with one spouse in worst physical and/or cognitive conditions in comparison to the other, who was in good health. Whereas the first spouse needed constant care for the daily instrumental activities of daily living (IADL), the second one needed organizational and psychological support.
4.3
Description of the Care Situations
4.3.1 Main care tasks We identified four kinds of care tasks: related to the area of instrumental activities of daily living (IADL), such as personal hygiene and change of pads in cases of urinary or faecal incontinence; bureaucracy regarding MCWs‟ regulation or the receipt of the state care allowance; Management of drugs and hospital care; Company and psychological support. Two factors have an impact on the nature and the frequency of the tasks carried out by the main carer: the kind of impairment and needs of the cared for person; being or not an only child and/or have a family network to share the care responsibilities with. Chronic diseases make the older person particularly fragile. When the older person suffered 34
from cardiovascular diseases, such as a heart attack, cardiac decompensation, or diabetes, the main carer‟s tasks focused on taking the cared for one to frequent medical specialist examinations and to day-hospitals, to manage the medication over the day and to check the level of INR (International Normalised Ratio) and glycaemia by means of specific machines or home blood tests. This kind of situation is managed by the main carer and by the family network, or if there is not one, by a privately paid worker replacing the main carer, when this individual is at work. Providing company, encouragement and the psychological support are other tasks carried out by all other people around the older person, but in particular by the main carer. Severe disability. In case a stroke or brain haemorrhage (or illnesses such as ALS- Amyotrophic Lateral Sclerosis) with disabling consequences, the cared for person needed help to carry out all, or the greatest part of, the essential activities to survive, such as personal hygiene, eating, getting dressed, moving from the bed to the chair. To manage such a situation, alone or with only family help, was very hard for a working carer. Out of 60 interviews indeed, there was just one case in which the old severe disabled woman was cared for half a day by her daughter and half a day by her retired husband (IT-24). In Italy, the most popular way to face such situations was to hire a co-living MCW, who carried out all activities related to the personal hygiene, the preparation of meals and the feeding of the older person, the house management, and the movements of the ill person. Very often the main carer was the daughter or the son, who also provided company to the older individual or provided psychological support and managed the caring activities. If there is also a brother or sister, they were appointed to manage the bureaucratic issues (the MCW‟s contract, achievement of the state care allowance). Cognitive impairment. This kind of illness required a constant monitoring of the elderly, who can be never left alone. If the old person suffering from Dementia, Parkinson or Alzheimer had a living, healthy spouse, this individual became the main carer and the children were a fundamental support to the healthy parent, who was sometimes helped by a MCW for half a day. If, on the other hand, the ill person did not have a spouse anymore, the children chose to hire a „night-and-day‟ MCW and they managed the bureaucratic issues and kept their parent company. Also in these cases, the presence of more family members helped the main carer to preserve a relative serenity in order to work and spend some time with the other family members (children and grandchildren). Psychological diseases. Older persons suffering from depression and/or anorexia lived in a state of fragility and required the constant presence of the main carer and often of a MCW to support their loved ones in the daily activities. The main carer was required to be sympathetic and warming, able to listen to and share the unease the older person was communicating. Such tasks were surely not easy, mostly for those trying to reconcile work with care who were often looking at their watch and trying to be efficient on more aspects, constantly placing their own needs aside. 4.3.1.1 care
Area of (Instrumental) activities of daily living, medical
The majority of working carers delegated these duties to the Migrant Care Worker, who moved the cared for ones from the bed to the chair, washed them, changed the incontinence pads, helped them with eating and/or spoon fed them. If the MCW was hired for half-day, the main carer once home after work carried out all these activities. In case of a „night and day‟ MCW, the main carer psychologically supported the cared for individual, and carried out different tasks such as shopping, the prescription and purchasing of medicines or arranging the specialist medical examinations. When family members are the only carers, such activities as hygiene, moving, meals were shared among sisters (and more rarely between sisters and brothers), and spouses, if one of them does not work (1 only case) and they asked for a professional aid operator from the domiciliary integrated care (DIC) once a week. „Everything, to wash her, change the pads, everything. The only thing is that on Saturdays
35
the regional health system sends me a girl to bath her even if she is lying in bed: the DIC. Then whoever is there does what is needed! I do less as I cannot physically make it, but he is strong. At first it was hard because we had no bed. We had a double bed: to move her from there hurts our backs a lot. Then we must also move her to one side, sometimes she had a strong groan and I had to move her, I also have the bottle for oxygen there. I‟ve learned to do everything: I place the gastric feeding tube, but to change it I go to the hospital‟. (IT-24)
4.3.1.2
Supervision
The supervision of the older person represented the carers‟ principal task, especially in case where there were problems with the cared for one‟s behaviour and depression. Indeed, in such cases, the involvement of a night-and-day MCW became necessary, supported by the main working carer, who spent every free moment from work with the loved person. To have to look after an older individual 24 hours a day caused enormous stress to the main working carer, who lived in a constant anxious state by being always available for possible emergencies. „But let‟s say that above all as the disease is evolving, I personally help mom a great deal in dressing her, just maybe to focus on what to wear, let‟s say, a general guide as perhaps, of course the disease takes away a bit of these reference points and of real cognition, so, for now she eats by herself but she needs some help and she should not be left alone because she starts confusing something. So let‟s say, when she goes to the toilet, for example for washing up, and this kind of things, some help is however necessary. Even if one tries to make her do things even autonomously, someone is absolutely necessary, who however looks after and monitors that she carries out such things properly‟. (IT-17) „It‟s something continuous, we cannot ever leave her alone, I or my husband or my dad, there's always someone with her, she is absolutely never alone as however, the disease does not allow her because when such blocks attack her she cannot even open the door and sometimes she even forgets to take her medicine „. (IT-25)
4.3.1.3
Hospital / doctors/medical care
A lot of the interviewed working carers were caring for older people suffering from cardiocirculatory chronic diseases (Tab. 8) and thus needed to attend frequent hospitalisations and dayhospitals. The periods of hospitalisation were very difficult for the main caregivers, who assist the older individual at night and must go to work in the morning. Besides, during the hospitalisation caregivers cannot benefit from the paid leaves according to the 104 Law. (www.handylex.org/schede/permessiaventi.shtml). The communication with the GP was not simple, because the surgery opening hours overlapped with the main carers‟ working time. „When I was at work my mother and father came often by, for example my mother did the shopping during the day and when I could not as I could not get any leaves from work, if some medical examinations were to be arranged, my mother did it: most of the time I was the one spending time with my grandmother, that is in the evening, when I came home from work to provide dinner, controlling the diet, wash dishes and to monitor her blood glucose level every night‟. (IT-49)
4.3.1.4
Management and bureaucracy
The care management i.e. the coordination of all people involved in supporting the older individual 36
was the most common task among main working carers aided by a Migrant Care Worker. Administrative matters were one of the most difficult aspects of the work-care reconciliation due to different reasons: the long times spent filling in applications and documents, the rigid and inflexible opening times of the administration offices, the clerks‟ incapacity to give the right help to the user and the lack of communication among administrative services. Many of our working carers suggested simplifying the bureaucratic procedures. Some of them, especially men, decided to dedicate only to this aspect of caregiving, delegating the care for the old family member to their sisters or to people outside the family, although also the management of regularisation procedures of the MCW is very binding and could become a real „third job.‟ 4.3.1.5
Normal visits
Few working carers went to the see the older individual just for a pleasant visit; many of them went to provide practical and psychological support and spent many hours with the loved one. During the afternoon spent with the elder person, they dealt with his/her personal hygiene, cleaning the house, the supervision of the MCW, the cooking and anything else they felt necessary. 4.3.1.6
Summary of main care tasks
More than half of the caregivers in the sample (37) are helped by a female MCW, who carried out all tasks concerning (I)ADL: working carers were mainly busy with management, visits and bureaucracy. Those managing the older individual together with other family members adjusted themselves to do everything that was needed: prepare meals and feed the older individual, change incontinence pads, transfers in the house, specialist medical examinations, and bureaucracy. 4.3.2 Amount of care The amount of weekly caring hours was quantified by the caregiver. This operation was not easy for those living together and for those caring for a close related person (same house and joined apartments) and played an important role in inducing the interviewed caring person to have an emotionally, somewhat distorted, perception of the reality. In particular, we refer to a main carer who reported to care 60 hours a week. Of the sample, 44 working carers cared between 10 and 20 hours per week, 3 working carers between 21 and 30 hours a week, 10 working carers reported to care for between 31 and 40, and 2 working carers between 41 and 50 hours a week (Tab.14). Table 14 Weekly hours of care Number of hours 10-20 21-30 31-40 41-50 Around the clock Total
Number of carers 44 3 10 2 1 60
4.3.3 Reasons for taking care over Both „care motivating‟ feelings as well as feelings „deriving from caregiving‟ were explored. The first ones are love, sense of duty, sense of returning the love received from parents in the previous life periods back and lastly feeling inclined and prone to caregiving. Feelings deriving from 37
caregiving are often negative: mingled feelings of pity and anger; inappropriateness and unease in managing the illness and disability; the feeling of being burdened; the mental and emotional stress more so than the physical unease. There are also positive feelings, even if they are less frequent, such as feeling good to return the received love back, to have been taught a more or less bitter lesson from being close to a suffering person, the satisfaction to have gained a real own ability and to say „I can do it‟, „I succeeded in doing it‟. The motivation to provide care and the deriving feelings are obviously strictly linked. There are two different kinds of motivations: the first are emotional ones (and almost always the affection is linked to the sense of duty), the second are practical ones: such as living close to the old person or having compatible work shifts. When the caregivers provided care for love and because they are able to combine quite easily work and care commitments, they assumed the role of carer without a significant negative effect on their wellbeing. When these two kinds of reasons proceeded in the same direction the caregiver appeared more serene: the strength to provide care has an emotional character and, at the same time, the caregiver can organise him/herself to care for the older person. It seems that a good re-conciliation was due to a good balance between the emotional and the practical sphere. When caregiving is done for affection. To the first kind belong sentences such as: „Because it is Mom. Not just for a sense of duty but for love as it is mother „.(IT-4) „... I love her a lot and then also for sense of responsibility, of duty‟. (IT-5) „... .. as however it is a mother, that is it is not only a duty because you say -it is my mother-, no! [...] It is the love felt for a parent „.(IT-7) „I did it with pleasure (for the father and now for the mother suffering from both Alzheimer) and if it was needed I would do it again for another 3 or 4 parents.‟.(IT- 9 ; „ Firstly, I started to caregive because he is my father „.(IT -10) „By now it is so much natural!‟. (IT-11)
In this situation was is also a gender stereotype. We also found the sense of giving to the parent something back, as shown by the following answers. „I do it because it is necessary, because I can, it does not bother me. The fact that I speak about it, it is not to brag but to convey a value that was unfortunately lost. [...] It 's to return sacrifices which my parents did for me and for all (my brother) „. (IT-13) „And well! It‟s my mother (she laughs). I think my mother has done so much for me „. (IT15) „I caregive for her as it is my desire. My mother has spoon fed me and I do it with her „. (IT18)
Sometimes caregiving was due to practical reasons. The main carer‟s role within the family could be forced in the case of only children or it could be more or less consciously agreed among family members. In this last case the main carer‟s role was set according to three requirements: the available time, the physical closeness and the social-health abilities. To work in shifts made it easy 38
to care for an older parent as in the interviews n. 3 and n. 14. To live close or with the parents is another criteria to identify the main carer: „I manage to reconcile quite well even because the shift-work, makes it easier to me‟. (IT-3) „[...] Where I work it is possible to change shifts and, in this sense, we have never had difficulties and then working on shifts, morning, afternoon and night, it may happen I don‟t work in the morning „. (IT-14)
For those with exploitable abilities in caregiving for a family member, it was natural to look after the own old parent: „[...] Since I am a physiotherapist and as my father suffers from Parkinson, who better than me can follow the caregiving and even the bureaucratic part? So I'll do it ... „.(IT-10)
In this case the main carer‟s brothers or sisters were a support from the practical, emotional and decision making point of view. The question „how does caregiving make you feel?‟ was meant to highlight the feelings related to caregiving. During the analysis such feelings were divided into two categories: negative and positive one. Negative feelings. Caregiving for an old family member provoked problematic feelings and emotions, which the interviewees identified with frustration, as this kind of caregiving does not imply the recovery but it implies only walking together with the old person to an ending, sometimes full of suffering. „It makes me feel very frustrated because I realize that I serve no useful purpose at all! While other times when she was ill my action had a meaning as I did try to make her feel good, unfortunately now the only motivation is to try to make the final outcome, that we all know, less painful as possible. [...] I can no longer talk to her, to tell, she does no longer recognize my children „. (IT-5)
A similar consideration was made by the interviewed n. 14: „With an elderly person, unfortunately, it is moving towards a conclusion ... let's say it is to try to make them feel good as much as possible but it is something that inevitably ends, and this can sometimes leave a bitter taste in the mouth‟. (IT- 14)
Sometimes the frustration became a feeling of losing part of the own personal existence. The expression used by the interviewed caregiver n. 11 is emblematic of how can caregiving be experienced: „… However it is heavy, nonetheless it takes away a part of your life [...] it is heavy and sad because you see a person who is not the same one anymore, you do not any longer recognise such a person‟. Sadness can drive to dangerous depressive conditions: „I just feel overwhelmed! The right word is to feel overwhelmed by this thing that is bigger than me!‟ The same person goes on saying: „I am very distraught ...‟ „Physically I'm fine apart from the psychological health… on this aspect I think I have moments of depression, frequent moments of despair, because the situation is hard‟. (IT- 19)
Sometimes a caregiver reported feeling inappropriate: 39
„Sometimes I feel unsuitable especially in terms of emotional support rather than practical [...]‟ .(IT-6)
Some interviewees also responded that they felt ill at ease at having to be the „parent‟ of the own parent, when one would like to keep being a child: „Discomfort, because that is not my role, it is the daughter who must be the parent: it is an ambiguous role and I'm still working on it but when I do not go I miss it ... I realise he is no longer the father I used to know‟ (IT-51)
Sense of privation, a sort of disorientation, as when the figure of their own father or mother fades away, and it not anymore possible to find anything familiar in them, even the own roots are lost and the own personal story slows down. „Little by little I'm losing him: he loses his memory, when you've a father, a parent, you have some roots as you have the memory of everything that has happened, of what have you been, where do you come from, he has always told me about his parents, about when he was little, the experience as a partisan who did .... now he is not him, the proper and dignified person who taught me how to live „. (IT-53)
Some caregivers underlined the emotional fatigue of caregiving: „You feel emotionally taken by that thing, clearly it is a great fatigue‟. (IT-8)
A sense of isolation and closing down: „It‟s hard in the sense that you're a bit withdrawn and your personal life is affected a lot by it‟. (IT-12)
Positive feelings. Cargiving also generated satisfaction, psychological and emotional wellbeing. „It makes me feel good, as however I don‟t feel guilty‟. (IT- 4)
„It‟s something that I do not absolutely mind ... .. sometimes I do for sense of duty. In principle, it is something I like very much „.(IT-3) „.... (it‟s a matter) even a little selfish as this thing makes me feel good!‟. (IT-9) „I'm happy to do so, it is not a burden‟.(IT-16) „ […] If I do not go two days to my mother I'm sorry and that I know she is waiting for me, I know I‟m important to her so there's an emotional tie‟. (IT-18)
However the affection did not detract from sometimes contradictory feelings: „In three and a half years I went through every stage: I wanted her to die [...], I desire her to live as long as possible because I know I will miss her. I'm sorry she will have to suffer. I had moments of great anger, now I have to say I'm more resigned […]‟. (IT-18)
40
The positive effect of the reconciliation on some caregivers‟ self-esteem is interesting, for the ability to manage, despite the different difficulties, such two complex spheres: „There is the awareness that you are able to ....... that I have acquired a competency‟. (IT-55) „It good that however you do what you like, the work that you've chosen outside and you manage to even cope with what happened to you out of the blue, then in the end you say to yourself „how good I am!‟. (IT-56 )
4.3.4 History of care The first question in the topic-guide asked the interviewee provide their own account of the care situation. This dip into the memory did often touch the interviewed working carers, as it reminded them of their feelings during the early stages of their care experience: dismay, fear, helplessness, etc. The care need may have arisen suddenly, as in the case of a fall, a heart attack or stroke or gradually, when the disease shows faint signs, such as forgetfulness or unusual gestures, which are sometimes not paid enough attention to. When older people carried out actions harming or affecting their own and others‟ safety, their children took them to undergo neurological examinations. So the care need was marked by either the diagnosis or by the hospitalisation due to an infarction or to a stroke. The beginning of the disease was also the most difficult moment for the caregiver, who had to work out what is happening, accept the new condition of the cared for person and organise the day differently from what previously used to be. „Well, surely there was a time when I was a bit out of my head, especially at the beginning… At first yes, then afterwards I fortunately had some very understanding colleagues and therefore my principals as well, who were certainly understanding, and therefore I slightly calmed down. I had a period of crisis of panic when my father was discharged from the hospital in December of 2006, yes. And this made me to remain a little outside the work environment as suggested by my doctor, since there could be a risk of a nervous breakdown, as it was a period of such a great stress. Every day I went to Porto Potenza, so back and forth, back and forth, then however again the stress to see a parent ... however, at the beginning it was not like now because the brain little by little has awakened a bit, at the beginning it was really a disaster, he could not even speak properly ... So yes, I had a period that led me to stay home, on sick leave for about a month and a half. Then after I thought it was right to start again as however to stay home was almost worse for me, and after that I went back to work, then slowly everything settled..‟. (IT- 42) „When she got sick and they sent her back home to me in these conditions, I did not know how to get on. I said to myself but how can I at home manage to keep such a person?! I‟ll try it at home then maybe I'll look for a long stay. I started to have her home and did not see anything!‟. (IT-24)
Despite the daily toil, the first starting period of care need was followed by another phase of stability in which the main carer found a new equilibrium. At this point the length of care becomes a particularly important aspect, with a great impact on caregivers‟ quality of life. Most working carers had been caring for less than 10 years, and a great part of them for 5 years, whereas 3 people had been caring for longer than 12 years. Those caring for older people suffering from Alzheimer‟s, Parkinson‟s and dementia, have been caring for longer periods as their remaining physical functions are in good condition. The same can be said about those cared for ones who are chronically ill or have survived to strokes or heart attacks. For details on the duration of treatment refer to Table 13. Caregivers who had cared for many years are very well organized in terms of management, but were also the most emotionally fragile, as they had gone through critical stages, relapses, 41
hospitalisations, the mediations, the daily conflicts in cases of dementia and, last but not least, social isolation. The daily care took up energy and whether these caregivers, as often happens, had the opportunity to buck up, they risk of running out of physical and mental resources necessary to carry out their double commitment of care and work. Not surprisingly, some interviewed caregivers wished their parent‟s death, not to see him or her suffering anymore. „I'm resigned that my mother got worse. I do not feel much as a pain, how can I explain, I do not feel it anymore. Before I felt it so much but now she seems to me as dead as she is always sleeping and when she opens his eyes she is always steering at a one point; I insisted a few times but she does not communicate, it happens once every month. I wait for her to die, on the one hand it is better for her to always sleep instead of staying like that. So I‟m feeling strong, not as tears were coming down, I do not feel anything‟. (IT-59)
4.4
Description of work situations
4.4.1 Sector of activities More than one third (25) of the interviewed working carers were employed in the public sector: 8 in the education sector and 17 in the administrative. In the private sector there were 22 working carers interviewed with various tasks. Lastly 13 were employed in the social and health sector (doctors, physiotherapists, social and health operators, aide assistants, psychologists and social workers, employees within the NHS [Tab.15]). Table 16 Number of carers working in different types of enterprises Type of enterprise Public Institutions (Schools, Information and Assistance Centres, Trade Union) Enterprises (free economy)
Number of carers
Family enterprises (Trade and handicraft) Practitioners, Therapists, Pharmacists, etc Welfare Organisations and Church In vocational training/students
Without job Total
4.4.2
25 22 0 13 0 0 0 60
Kind and quality of work
The most frequent type of job in the sample according to the International Standard classification of Occupation for the European Union were within the category of clerical workers (28), in particular within the administration and accounting sectors. They are classified as „professionals‟ working carers belonging to the health and social sector (15), as psychologists, doctors and health workers, while „Technicians and associated professionals‟ are physical therapists, educators, community assistants and also designers (7). Working carers employed in the commercial sector, in particular, two brokers, a seller on appointment and a visual display unit operator are „ Service workers and shop and market sales workers „ (4). Two working carers belonged to the category „Craft and related trades workers‟. Finally, managers within the public or private sector are in the category „Legislators, Senior Officials and Managers‟ (4). Table 17 Type of employment 42
Type of occupation Legislators, senior officials and managers Professionals Technicians and associate professionals Clerks Service workers and shop and market sales workers Skilled agricultural and fishery workers Craft and related trades workers Plant and machine operators and assemblers Unknown
Number of carers 4 15 7 28 4 0 2 0 0
Total
60
For almost all interviewees, a good relationship with colleagues was very important to enjoy a cooperative atmosphere at the workplace. Many of them reported being supported, both morally and practically, especially at the beginning of the disease by some colleagues who were willing to change shifts or to carry out the carer‟s uncompleted work. Nonetheless, at the same time, after the emergency phase (usually coinciding with the start of the disease) working caregivers tended not to talk to colleagues about their caring activity, but rather to keep it within their private sphere. On the other hand some respondents complained about a climate of indifference at the workplace and an outright hostility towards those working carers who benefit from paid leaves in order to care for the dependent family member. Within the public sector the use of paid leaves was widespread, but this use may sometimes lead to some problems with colleagues (since they may judge working carers as “shirkers”). In the private sector workers did not to take advantage of these permits, eliminating in advance the risk of criticism and repercussions at the workplace. As we see from Table 17, more than half of respondents worked in the public sector (33) with a large majority of women and the rest (25) operated in the private sector and here there is a gender distinction; men employed in the private market do prevail. The two cases belonging to the „Unemployed‟ category respectively refer to the interviewee number 57, who went into early retirement and number 42 unemployed at the time of the interview.
Table 18 Status of employment Female 24 7 0 0 2
Civil servant Employee Self employed Student Unemployed
4.4.3
Male
Total 9 18 0 0 0
33 25 0 0 2
Number of working hours
The respondents who worked less than 30 hours per week (part-time) are teachers, part-time civil servants, including a manager, a bank clerk, a seller and other caregivers carrying out administrative tasks in private firms. The carers included in this first group (Int. 4,5,6) managed to reconcile work and care rather well, since they had private support who was always close to the elderly, allowing carers to go peacefully to work. Carers working between 31 and 40 hours reported the constant lack of time and that they had to do everything with their eye on the time. The interviewee who worked 38 hours per week declared: 43
„I have less time so all I have to do I must do it quickly, I‟m more dismissive ..[...] and this also happens in the relationships with the beloved ones‟. (IT-11)
Three carers worked more than 40 hours per week due to their positions of responsibility and leadership: they were able to spend time with the older person they cared for only at the end of the day and hired a Migrant Worker Care. As shown in the below table, to work part-time is very uncommon among the working carers in our sample and the four cases are women. In this light, it seems interesting the case of the interviewee number 43, who, having a leadership role in the public administration, has managed to get part-time to care for the older mother. „I've changed for part-time even when things were going well. Then my mother started to do absurd things, when my father went to the toilet she used to escape and we were all looking for her throughout the boulevard, and then she used to go to the hairdresser with no money or anything, she did make a complete fool of herself! But they knew her... so no I changed to parttime and obviously if there is any training or meetings in the afternoon, I can even remain for a little time, so, here it is, I‟m not readily available with the timetable. [...] I was part-time for 7 years. I choose the part-time with an economic damage, let‟s say, however, I had this opportunity, as before there wasn‟t this possibility for managers. I was the first who made the way for many others and so I worked it out, in the sense that I was more mentally relaxed „. (IT-43)
Table 19 Working hours of carers Female
Male
Total
36 4 1
Full-time Part-time Occasional employment Hours worked per week noted with ‘0’
19 0 0
55 4 1 60
Only two female working carers had quit or changed their job due to caregiving. The first one reduced to a part of the pension and the second to a manager role. Two others simply reduced their working hours, as shown in Table 20. Table 20 Changes of the work situation because of care Female Reduction of working hours because of care Changed position because of care Quit job because of care Lost job because of care Self employment because of care No change
Male
Total
2
0
2
1
0
1
1
0
1
0
0
0
0
0
0
37
19
56
44
The question „Have you ever considered giving up work or the care activities?‟, asked to analyse the caring and work burden in each single case has showed that working hours do not interfere so much on the stress level. Caregivers indeed know very well that such hours have to be organised in order to have someone else caring for the elderly. The main stress derived from the reduced free and family time. Work is an outlet, a place of self-realisation and, in some cases, it offers the possibility for sharing the care experience and testing the colleagues‟ solidarity. Alone the working hours did not interfere with the working carers‟ private life, but they did interfere in addition to the care hours. Those who despite the sad and demanding experience of caring for a not self-sufficient family member, kept working as they have no alternative due to economic reasons or to be highly motivated and to believe in the work value as personal growth. All of the interviewed caregivers had considered giving up work. However applying for leave appeared to be the most feasible solution in case of the worsening of the elderly person‟s condition. And moreover: „I must be honest, you complain, say you cannot stand it anymore but actually work distracts you, it gives you also some peace of mind, it is not just a problem. From the psychological point of view, I would not leave it, from the practical one, it is another matter. I would not stop caregiving because I don‟t do if for strangers but for Mum‟. (IT-11)
This is one of our caregivers‟ ideas, summarising very well many interviewed persons‟ opinion: „The work neither (I would leave) because for me it is a refuge. When I work I start to be again a person without all these problems on the shoulders, when I get back home the problems come back on me. [...] Caregiving satisfies me as daughter [...] if I wouldn‟t caregive for her I would feel much worse [...]. So the work is rather the realisation of the social sphere and caregiving is the fulfilment of the person‟. (IT -19)
Work allowed the personal professional and social self-fulfilment, whereas caregiving allows the relational and emotional realization. Only one interviewed lady would consider the rest home in case of a worsening of her mother‟s conditions. Generally speaking caregivers wanted to keep caring their elderly within their own house with a MCW‟s help. „No, definitely not the work! Caregiving until I manage I do it myself. Again, even the biggest part of the work is done by the migrant careworker, if I had to do it, I wouldn‟t manage‟.(IT- 8)
The possibility of giving up work or care was not taken into consideration by the interviewed caregivers, because, on one hand those who worked did so mainly due to necessity and on the other, those who care did so due to emotional bonds. Combining the two efforts, although difficult, seemed also to balance the lives of such people, who, in this way can manage to join two frontsthe relational and the professional one. Frustration and fatigue were due to the lack of proper supports, the feeling of loneliness and isolation. To confirm what was previously stated, those who gave up a work they loved and in which they believed was a difficult and painful decision and they were aware they had renounced something enriching and balancing their own lives: „The work has not suffered from it, because when I closed the door and I had the students in front of me, I had those eyes looking at me and go, and it was a pretty nice thing, as in any case, in those
45
moments, those hours, my mind went where it had to go toward creativity, toward teaching, to the needs of the school and during those hours I was master of my time. It‟s logical that at home it had become more frenetic‟. (IT-57)
The touching enthusiasm of our caregiver does not generally remind to work but to „those eyes‟, making clear the caregiver‟s passion for her work. Besides during the interview she revealed her present („bitter‟) mood, as for some months she has been only caring. Because of the prevalent caregiving she cannot anymore autonomously manage her time and lost her life balance.
4.5 Impact of reconciliation on the life of the working carer 4.5.1 Typical conflict and stress situations between work and care among carers Stress situations arising from reconciliation affect both work and care tasks, but even others spheres of life. At the work place, the interviewees cited the major difficulty as the lack of concentration and the fear that something bad could happen at home to the older person they care for. For this reason, often working carers are not able to respect the working schedule. On the other side of caregiving, working carers did not interact with the older person as much as they would want. Working carers sacrificed the part of life they dedicated to themselves before the beginning of illness: free time, personal interests and interpersonal relationships. The constant lack of time for daily life tasks is source of anxiety and dissatisfaction.
4.5.1.1
Daily Work
Consequences on paid work are different according to the type of work performed. On the one hand, some working carers in socio-educational fields (for example interviewed psychologist n.18; interviewed drug addicted educators n. 3 and n. 14; interviewed physiotherapist n. 10; interviewed tutors n. 7 and n. 13) experienced some positive effects on their work as thanks to caregiving they gained a better understanding of their clients. On the other hand, some caregivers working in the same field suffered from emotional overload as they are constantly paying attention to and managing a difficult relationship, as in the case of the social worker of a paediatric hospital. In this case, the consequences at work could be a lack of emotional resources as well as a reduced willingness in welcoming users. Organizing the reconciliation was easier for shift workers and workers by appointment (Interview n. 9). Carers working in the administrative sector complained about a decrease in concentration, the impossibility to attend training courses (Interviews n. 1 and n. 2) due to their care duties as well as about their willingness to remain at work after their working shift (Interview 11): „If maybe before an appointment in Rimini, wasn‟t a problem for me, for example at 11, I could easily come back at 3, now I always try to return home at lunch because the meals are very complicated and I can not leave mom alone, tidy up, clean up, then she does not manage by herself, so during mealtimes she needs me, if I can I always try to be there. And also my colleagues, I mostly work with one, that poor guy for a while took additional work upon himself. Then he also got married ... well it happens to everyone‟. (IT-11)
Working carers felt anxious and nervous at the working place due to the lack of concentration and the fear that older person they cared for may fall ill. 46
„Oh, sure, why then ... The concentration is no longer at 100% as, even as an organization, especially during these last times that Dad had to be hospitalised: so call the manager 2-3 times a day because she was not even in her office, she was in other rooms and then try again, eh ... and then there's always the thought of them, eh, then, well ... I „m always looking forward to go out, although I like the work as I‟m not serene, do you understand, above all until he is in those conditions‟. (IT-20)
Caring for an elder also can have an affect on the working carer‟s career. „Definitely, yes, because unfortunately I cannot be available how much I would like to, this yes. Also because I was more than once asked to do other things but I had to say no. For example, now if I will have to apply for the 104 Law I'll have to…it is normal if one is granted the 104 Law paid leaves it makes 5 days per month (as 3 belong to INPS plus 2 days) and then there are 3 days given by the Bank where I work according to a trade union agreement. So I would not work for 5 days a month and my career would consequently fade into the background‟. (IT-25)
Sometimes it was necessary to leave work or to change it when it is too mentally demanding because the caregiver‟s brain was already focused on caregiving. Managing the two activities becomes stressful and the caregiver feels inadequate at one of them. The interviewed woman n. 29 had two part-time jobs: in the morning as herbalist-shop assistant, in the afternoon as marketing manager of a private enterprise. This is what she argued: „I left one of two jobs just to provide care for my mother. The afternoon work where I was marketing responsible, clearly, in short, we were on a completely different world, then surely I should have been very careful with what I was doing, what I was saying as then however telephone contacts were the majority, and it is not easy to explain which the services are, in this regard. I left work exactly also for this reason: that is, I have always been very clear even with my employers, so I acquainted them with the situation and I explained that I would have left because anyhow I realized that I could not bring the results that I could have reached‟. (IT-29)
Lots of interviewed working carers said they were indeed more mentally stressed since they began to provide care for the elderly, with consequences also on their working lives. Working carers became real experts in creative time management, as they need to flexibly organize more parallel tasks, thus reducing spare and relaxing times.It was indeed often the case that after the morning work, in order to care for the older family member in the afternoon, the working carer had to do the rest of work at home at nights or during the weekends, as this teacher stated: „Sure, then the hours have changed, if I have to be up here (at the cared for person‟s home) I cannot stay at home working and so if I cannot work in the afternoon, I work at night, if I cannot work during the week, I work on week-ends; in short, you must manage the working time in a different way‟.(IT-26)
One of our interviewees (IT-57) decided to retire early: she was an enthusiastic High School teacher. At a certain point her 90 year-old mother‟s and sister‟s health conditions got worst. Her sister, for few years, was severely depressed. For this reason for a while she did try to care-work, helped only by an external carer for three hours in the morning and asking a teaching time table which could suit the carer duties. In the school she had been teaching for many years her colleagues where supportive, the headmaster fully trusted her and did not refuse her any leave. In the last year she had to move to another school where the headmaster and colleagues are suspicious, and not so supportive and sympathetic,. As a result, she decided to retire early. „It was hell in the sense that I went to school with a knot in the stomach, although at the beginning of the school year, on my knees, I went to ask for a timetable that could somehow match with the presence of this lady (the careworker), and when this lady, on Fridays, was not there, to start
47
teaching at school in the second or in the third hour, otherwise during the winter the lady came at 8 to my place and there was no problem. But the problems become those of preparing lunch, so I got up at 5.30 to prepare lunch and leave at 7.30 so that everything was ready when I came back [...] when the condition of my mother summed up with the most difficult moments of my sister, I used to go to school and I could not wait to go back home: I did retire because I could not reconcile anymore, even because the school is not only the morning commitment, but in the afternoon there are the parent-teacher class committees, the teachers committee, this and that and then the school means also to give refresher courses, i.e. it means many things‟. (IT-57)
In this case, the working change and the economic impossibility to afford a permanent Migrant Care Worker (MCW) or a resting home, forced the caregiver to give her work up as well as any other social activity, which could be a relaxing or cultural opportunity (conferences, films, artexhibitions). A MCW can ease the reconciliation a lot: those who could afford one worked more efficiently and with less stress, as they received a physical, practical as well as an emotional support, feeling their family member was in good hands. For such working carers their work was an irreducible part of their life and they deeply concentrated on it as an escape as well as a personal opportunity for growth. „No, no, thank God we're in good hands. I trust these migrant careworkers who care for them, they are good guys, so loyal, you can count on them... in November dad got suddenly ill, they called me at school……… ... I'm calm‟. (IT- 30)
As far as the professional career is concerned, caregiving did not have a negative impact if the kind of work did not imply promotions or when the caring task occurs once the work path had already been settled or at its end on the approach to retirement. A caregiver answered: „Definitely yes, because I could not and I cannot leave, once in May 2004 I think, before she felt, I was out three days but this implies ... And then afterwards I could not do it anymore because my husband, it is true he helps me but it is also true that some things I do it myself, I do take her to the toilet, it is normal, I would never make him doing it, and then well, also my mother would feel uncomfortable. And furthermore: „Let‟s say that by that time I had already made the path of my career and I did not have many more motivations, but surely if it would have happened at the beginning it would have been very limiting. If there was any meeting I had to inform them...it did definitely limited me in many things, now I'm attending some local refresher courses, organized by the company, in spite of everything they absorb my time in the same way as I have to call the migrant care worker till 7 p.m. because I have the course, so‟.(IT-1)
In most cases the working environment is considered sympathetic, with supportive and willing colleagues and superiors. Only one interviewed working caregiver had been criticised by colleagues because she was taking benefit from the 104 Law (IT-10). This aspect will be studied in depth in one of the next sections. Among caregivers there was a generalised trend to definitely divide the working sphere from the caring one, in order not to be considered in any way a burden in the working environment. A MCW is functional to keep such a separation: illness is a private matter, to be kept aside as much as possible from factors, as work, belonging to the public sphere. Nevertheless this attitude had a cost in terms of financial, physical and psychological health as it forced caregivers to reduce sleeping hours, to manage more anxiety (Interview 4) and also to use holiday breaks for caring in spite of relaxing „I have to take some leaves, I often arrange holidays according to my mother‟.(IT-15)
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To support this theory it has to be pointed out that only 23 interviewed caregivers out of 60 have applied for taking advantage of the 104 Law, which entitles carers to 3 days of paid leave per month. 4.5.1.2
Care
The reconciliation did not affect the caring tasks of half of the interviewed caregivers. Those are the same people who did not activate a large help network but combined all or a great number of following supports: night and day migrant care workers, paid leaves according to the 104 Law, domiciliary integrated care, state care allowance and the family network. The increase of the activated services and supports makes it easier to peacefully reconcile work with care. Caregivers living with their parents and supported by some private paid help suffered from tension only when were at their working place. Thus, when coming back from work they were completely absorbed by caring without any spare moment for themselves. „I have a person who helps me but when I'm home I help in everything. All that the migrant careworker did not do, I‟ll do it‟. (IT-12)
Many caregivers argued they are less patient, less tolerant of their parent‟s unusual attitudes due to the difficult carrying out their tasks and to the constant looking at their watch to manage everything for the cared for person and their own family. „…But many times I see things ... I go up and see such things that make me angry ... then I get angry... I say .. „ I come back at 8.30‟ if I arrive at 8:40 he could have waited ...‟ because your father wanted to eat‟....we are wrong because those ones now have a way of life ... they lost their order ...‟. (IT-52). „There is tension....then older people are stubborn ... maybe they were not feeling good and I find my father who has lifted a weight that he could not ... „you're nervous,‟ ... because I raised the voice a little.... But let‟s say that when there is an emergency I‟m only for them and nothing else, it is the primary thing ...‟. (IT-50
4.5.1.3
Family Live
Family relationships were damaged by the work and care reconciliation: working and caring times are both fixed and unavoidable so that the beloved ones‟ sphere is the only one from which some time can be taken from to be spent on one of the other two activities. Conflicts arose in four directions and in particular between care-giver and: sons or/and daughters; spouses; sisters or brothers; and grandchildren. No conflict situation was found between caregiver and cared for person. 1. In the first case caregivers were not able to spend enough time with their children, which meant they felt guilty and unsatisfied in particular if the children were teenagers or going through delicate growing phases, as the passage from study to work or the family home leaving. One caregiver living with her old parents and caring for her mother suffering from dementia found it hard to make her little children peacefully live with their old grandmother: „Definitely a situation of illness in the family moves a number of equilibrium. This disease, which is [...] amazing [...] in the relationship with children, also having to make them responsible, making them ready to face something that could have some special moments ...‟. (IT-17) „I'm spending very little time with my family, they have had to bear the consequences of my absence. For three years do not go out with my husband and sometimes he gets mad because I'm staying
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longer there in the evening […]‟. (IT-18)
2. The second case was the most common one: the marital life is turned upside-down by the caring activities. Some common aspects among the interviewed caregivers have arisen: the lack of time to spend together, the lost intimacy due to the co-living with the cared for person, the constant anxiety affecting the couple, more nervousness which explodes only in the private sphere to safeguard the working relationships. „It may have affected the relationship with my husband, certainly it did as caring for absorbs so much of my time...The time I spend with my family is more than halved, that is I spend so very little time with it, as now during my free hours I am with mom, so both the relationship with the children was affected by it, who are more nervous, more irritable, more whining, as well as the one with my husband, although he is an understanding person, available [...] but I perceive it‟. (IT-17) „Sometimes yes. You get home and you are nervous…now even my husband has to care for his dad. But my husband is a good person and understands... however many times... also I, and so sometimes we do argue, sometimes I arrive home more thoughtful, sometimes I am absentminded, sometimes I try to throw everything behind the back, but it is not always easy. With the daughters also, for the same problem and reason. Now I could not wait to go home to be with my daughter (the other is at university): you get there, chat ... but no, the first step to mom, I'll definitely have to go for a drive, she will tell me all her troubles, that she does not see, not hear, that I do not understand her and I don‟t t know how much she is suffering… then from there I should go home and start over because my husband and daughters are not responsible for anything but is not easy, that‟s all‟. (IT-23)
Interviewed caregivers complained either about the amount of time they cannot spend with other family members and also about the quality of such time, too much often spoilt by tiredness, nervousness and worries: „Surely I am more irritable even in the relationship to my father [...] more nervous then this relationship becomes more conflictual at times‟. (IT-19)
When the spouses spent too much apart, the couple was affected by a rift too big to be healed. One interviewed caregiver says the separation from his wife was caused by his caring task: „…The management of this person (the mother) has cracked the marital relationship ... a mess‟. „I have less time for myself and my family, but I am pleased to spend it with my mother‟. (IT-8)
Male caregivers found it particularly difficult to reconcile their caring task with their family ties, whereas for women it was more difficult to reconcile the different times of their tasks. Very often indeed the male caregiver experienced conflict between his different roles of son, husband and father. He had to play one of them according to the priorities of that particular moment, knowing the other part of the relationship will always be unsatisfied for having being necessarily neglected: „In the family life instead there are some problems because there are the children‟s needs: school, sports. One of the children is getting his driving licence and then there are big difficulties with the spouse. [...] It happens to neglect the family and there are often misunderstanding…….despite it all I should say that, in particular my wife, partly understands and partly collaborates even if she does not approve many other situations that occurred and encumber the family situation‟. (IT-28)
Sometimes the roles were four: not only, husband and son but also MCW work director and MCW‟s substitute. This was the case of the interviewed caregiver n. 55, who is into a triangle with three females, each of them with her needs: mother, wife (and sons) and MCW. Each one expects the caregiver to meet their personal needs: the first one asks for some attention, the second one for love and the last one for some free time from work. After a while from the start of the interview, the 50
caregiver described himself as someone walking along two parallel streets trying to find a balance and not to fall. „On the psychological level: life is already full! Moreover when you have to face these problems you feel doomed, there is little to nothing of your own, the children have priority, the work don‟t even mention it, the wife if you‟re not next to her you loose her, and so these components are..... I am the only reference point to her ....it is a psychological burden to me, I feel uncomfortable, it wears me out. Sharing free time with a person rather than another, as my mother if I do not show up, she points it out. If I spend too much with my mom the other party (the wife) complains about it and then also the caregiver needs to be replaced, to know that I come ... You must be able to walk across all without falling. On the other hand there is the awareness that you are able to .......that I have acquired a skill‟. (IT-55)
3. As for the third case, in families with one or two sons or daughters, there is always a brother, and more often a sister, caring more for the older family member, as they do live together or closer. Generally brothers and sisters do share their tasks: sons care for the MCW enrolment procedure as well as for administrative issues, for the management of the parent‟s resources whereas daughters keep company with the older cared for one, care about the hygiene, the house and the possible MCW management. When there are only sons, parents are cared for by a night and day MCW and the sons do mostly alternate in keeping company with the ill parent. Even in this case one son can be more present than another one and the older cared for one‟s daughter in law plays a fundamental role. One of them said: „Added to this, the other child is unwell and besides he did not have a wife supporting him in this kind of things, because when she was at my place during those 8 months, when the situation was heavy, I told her: „surely if each of us would do a little bit, it would not be so heavy, everything on one side‟. However on this front, there wasn‟t any help, basically they completely disinterested. Their solution is to put her in an assisted living‟. (IT-56)
Sometimes brothers disagreed a little on the best therapy, on the financial management or on the shifts to be covered, however they succeeded in overcoming such disagreements without problems. Bigger conflicts occurred when one of the brothers refused to care for the older parent, leaving it totally to the other brother or to the sister. We did not encounter many situations similar to this, but caregivers who had experienced this kind of situation are extremely embittered. 4. As seen in the first part, in our sample the middle generation is predominant, so that caring for an older person often took time from caring for grandchildren: „I can not stay with my grandchildren anymore and this it a big burden for me …‟. (IT-20)
4.5.1.4
Social Life
Working carers often gave up their social activities in order not to leave the person they cared for but also because in the evening they were too tired to go out. Sometimes caring activities absorbed much time from relationships and even from friendships. This fact increased the caregiver‟s unease and isolation and especially young carers found this situation stressful, in particular if before the illness they used to have a busy social live and lots of interests, as for this 35 year-old female caregiver: „In the last year she set my social life at zero, among other things I have always been a dynamic person, I have lots of friends and acquaintances even because I like it, I get bored easily of both people and things, so normally I carry out different activities, such as the Spanish course, the course for home made pasta [...] there was just nothing ... so I missed seeing people and doing
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what I would like to a lot, it was the heaviest thing for me..‟. (IT-11)
There are also people able to maintain plenty of interests and social relationships: „We are dance fans and then we keep on dancing, we go three times a week ….I really need it‟. (IT-4)
Lastly some caregivers did not experience important changes in their social life, due to the work and care combination, because even before caring, they did not enjoy a busy social life: „She set it at zero, if before my social life was little now there isn‟t any at all‟. (IT-6)
Sharing caregiving with closer friends created a real solidarity network around the caregiver, who, in this way, did not feel alone and isolated. The cared for person‟s home, where sometimes also the caregiver lived, became a meeting point on weekends as well as on working days. „Let's just say that many people love us and they all come here! At Christmas I struggled as a black man because they all came here „I don‟t not leave you alone, I do not leave you alone‟ but I did work ... it is also a pleasure for us. I do not mind having stopped to go out‟. (IT-24)
The role swapping experienced when a very young person has to care for a severely disabled parent at a period of life in which one could still expect to rely on the own parents, could be very painful. The neo-caregiver has an initial shock from which they recovered only after finding a new life balance, emotional as well as material, working and eventually even social. The disability, mostly if it is sudden, had a devastating impact on all these spheres and, in particular the relationships were turned upside-down so that the caregiver loses social contacts, energy and light-heartedness, i.e. the necessary condition for leisure activity. The following 29-year old daughter has recently started to care for her totally paralysed father, who is affected with a stroke: „A little perhaps, yes, a little yes...because however, it took me away a little bit also the will to …The fatigue, then I settle myself down, the desire to go out, do something. Then well, fortunately I do not have many friends, but the ones I have are very sympathetic. They have also similar situations, so let's say they have been very close to me. Many times if I cannot leave to be with my father, they do come to me. But he has certainly taken me a little energy away, what I had before, perhaps also the fact that I have grown up. At 20 I was a kind of person, I would follow certain things, however I just cared of having fun, I was a little bit more light-hearted: now I am surely no longer like that. I am a little bit more scary: I fear that something could happen to me, and then that how would my mother manage, that is a kind of such a so status ... this does not prevent me from going out, but it did definitely took me a little bit of carelessness away, that definitely‟. (IT-42)
The interviewed caregiver did not only refer to the frequency of social occasions but also to their quality as her sad mood and daily worries spoilt any kind of enjoyments. Communication barriers were overcome through the new technologies. There were caregivers who kept in touch with people via mobile or e-mail. Social occasions were lost but at least relationships were preserved: „Fortunately, there are mobile phones and text messages, there are e-mails, but surely all the previous activities: go to a conference somewhere, etc., doe no longer exist. Of this I complain to a certain extend as I see it more as „I‟m no longer master of my time‟ rather than „it has slowed my social relations down‟ because those were, because through the phone or when I go out shopping, I always meet someone‟. (IT-57)
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4.5.1.5
Wellbeing and health
The most cited consequences were psychological or psychosomatic ones: from sleep lack to high pressure, permanent anxiety state and migraine: „I realise stress, the lump in the throat which sometimes occurs …the voice gets lower …‟. (IT-4)
and also: „Caregiving is something hard, perhaps more emotionally than physically‟. (IT- 5) „(Physically she feels good) ... except for the first period of emotional impact when I had troubles sleeping‟. (IT-6)
Caregivers appear to live in a permanent anxiety state: „Of course sleep is lighter ... for the fear not too hear her. I must be careful to hear when she gets up because if she falls it's worst! I do so with pleasure, but if I consider it I would never wish my daughter did what I'm doing to my mother‟. (IT-1) „No, no trouble sleeping, but then I suffer from migraines and it got worse. The doctor told me it is probably some stress, so from that point of view, yes, and probably the fact that I have started to accumulate too much and then headaches start again and sometimes ...even because I used to play tennis before and so I gave vent to, not now, I keep everything inside me and therefore I am very contracted, even when driving. It is a state, how can I tell, not of lasting anxiety but of little peace‟. (IT-11)
The physical and emotional stress reaches its highest point during hospitalised periods, which are frequent for some old people suffering from chronic cardio circulatory diseases. Some working carers were forced to take time off, as they cannot use the 104 Law allowances when the relative is hospitalised. When holidays were over, they had to spend the night in hospital and go to work the following morning. Interviewee n. 42 was so anxious and suffered from panic attacks so had to remain some weeks home on sick leave. Once the father got home from the hospital, she wanted to go back to work before her GP‟s prescribed deadline, as staying home with her suffering parent made her anxious. Work was a sort of distraction for her. Instead, from the physical point of view, there was certain well-being maybe due to the fact that almost half of the interviewed caregivers were supported by a migrant care worker, in charge of the heaviest activities. If the caregiver, despite the MCW, had to transport the old person, besides psycho-emotive consequences there were also physical ones, such as backache: „The physical health has suffered so much: I have often sore shoulders and arms as I raise my mother and to change her is physically very heavy. On the psychological level, as far as mood ...Yes!‟. (IT-18)
Another consequence of the caregiver‟s psychological situation was the bitterness due to the dissatisfaction, the feeling of being trapped, without control on the own life, which is mainly absorbed by caregiving: „This is the heaviest psychological aspect, no longer be master of my time. And that makes me live in a bitter way, even to go shopping, one is logically bound to the presence of another person, or there is my sister or there is a lady, we kept hiring in the morning as she allows us, like Cinderella, to have 3 hours free, 3 days a week from 9 am to 12 am‟. (IT-57)
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4.5.1.6
Financial Situation
Reconciliation had direct and indirect consequences on the families‟ economic situation. Direct ones are, for example, when the caregiver was forced to use their own salary to pay the MCW. This situation has been defined as „dramatic‟ by some caregivers: „ „Dramatic in the sense that there are supports, however, if you need help they do not manage to cover 24 hours every day, it is not humanly possible, so before a woman, than another one every now and then, someone‟s help is needed, but it means money so it makes it hard. Then maybe once I could work overtime, now I cannot and thus more money are spent and fewer are coming in. Let‟s say that financially it is a sound beating! „. (IT-11)
Sometimes the caregiver was forced to add an amount of money to the parent‟s pension, when this was not enough to cover the MCW salary. „My mother is a housewife and so she benefits from my father‟s reduced pension, but she gets the state care allowance and to this amount, I'll add my 200 euros a month and I can bear the costs‟. (IT-55)
Another case of direct consequence was the need of unpaid leaves from work: „Well yes for leaves, the leaves I take outside the holiday are not paid, so yes something‟. (IT-15)
There were indirect consequences when caregivers pay the private services with the old parent‟s savings and depriving themselves of an inheritance. When the older person had more than one child the additional and extraordinary care expenses were shared out among sons and daughters. „Sometimes, for my father ... for a couple of examinations I spent 200 euro. The salary is not high… next month my father will see the cardiologist and in that case it will be 150 euro. When such things happen let‟s say I feel it! [...] My dad receives the minimum pension, and my mother the social pension and even in this it‟s a question of collaboration with my brother because he had also paid mother's cardiologist out of his pocket my. Again there are not simple implications. Although it may be a sacrifice, I realize that there is a sense of responsibility that compels me ... if I did do it I would live it badly. As my economic situation is not brilliant though, with a lot of sacrifice but I do it…they could even pay for it ... maybe we do it for an emotional reason.‟. (IT-14)
In most of the analysed cases, the MCW was paid for with the pension and the state care allowance. If this was not enough the caregiver was forced to use the cared for person‟s savings, renouncing a part of heritage: „Yes! (Reconciliation affects my finances) because my mother's pension plus the state care allowance are scarcely enough to pay the migrant care workers, as I do pay her (the MCW), I give her also food and pay contributions. All matters concerning bills, shared flat running expenses, drugs etc…I have to add other money. I must say that my parents had saved a bit of money and I'm using them. They could have been mine as inheritance but ...I‟m not directly affected by it: they are the money they had put away for their old age‟. (IT-18)
In each family the economic management of the older member‟s care was a delicate matter. The expenses for the MCW (in particular if enrolled) are very high and caregivers had to save on extra expenses: as winter heating or private specialist consultations.
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4.5.2
Benefits from reconciliation
Some positive aspects of reconciliation were the possibility to be close to the family member, to keep a relationship with the cared for as well as the personal growth which, in some cases, becomes a know-how applicable to the working place. This is the case of psychologists, educators and tutors. „That I can still do it. That still….this caregiving for my mother is a burden to me. I don‟t want to give the impression of being a heroin, but the thing that weighs on me the most is that it is a rather pointless thing, that it addresses to caregiving and so after all the fact that I can still manage it…and „. (IT-5) „The good thing … a paradox! That this story helps me in my work, if you knew how many people I understand better: it is enrichment for me: also people with parents suffering from Alzheimer‟s came to me so I could give them human advices and sharing human sufferings, intimately understanding certain things. This has enriched me, let‟s say‟. (IT-18) „I think it has even bettered, as, however to look after an old person is different from caring for any other person, and I realized it because having been working with drug addicts for many years, they are a difficult class, complicated people, people who sometimes wear out…difficult. To stay with my grandmother has also made me look at them with different eyes as I can almost still get in relationship with them in the sense that my grandmother is, from about a year, a bit difficult to handle and so I‟ve almost put on the same line the two things. It 's always caring for a person as before the older one there is a person and before the drug addict there is a person „. (IT-3)
In some cases older people were considered as the family keepers, as they are its origins and historic memory. They are considered a resource. A family gathered together two „grandmothers‟ in a flat located in the same building of their interviewed granddaughter. „The good thing is that however my grandmothers are still two outstanding people in fact even in the family, let‟s say that when even such holidays as Christmas will be lacking, as my grandmothers like rituals very much, the Christmas lunch, the dinners, or Easter, birthdays, anniversaries – and we realise that when one of the two will no longer be there…because in these meals the whole family, even the enlarged one, gathers together: we are always 10-15 people and it is a beautiful thing. In fact, when the entire family meetings will be missing, even if they can sometimes be a bit heavy, because on Sundays mom has to cook for all -and she is not the kind of woman who is keen on cooking – it is another burden but it is also a pleasure‟. (IT-45)
4.5.2.1
Recognition
None of the interviewed persons were interested in recognition by the society or by the state for their caring activities. Caring for a parent or other older relatives is a spontaneous gesture of gratitude to return what they had previously done. This was particularly the case of the interviewed women: they seemed unaware of their social role and of importance of what they are doing, because of the general mentality that Italian women are naturally inclined to provide care for relatives. A woman who was particularly psychologically suffering, due to her controversial relationship with her mother suffering from Alzheimer‟s and its associate strange behaviours, made the following consideration. „I do not know as I have always been counting on myself. Maybe something official is missing there is no recognition [...] It‟s like if each of us is experiencing this situation indoors, perhaps it should be more shared since it is so heavy. If a day I don‟t go to school it is not because I do not want to but because I have a need. A collaborative space. To be able to relate with other people, who are experiencing this thing as well. I feel this.. a lot! Because those who don‟t experience such
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situations do not understand!‟. (IT-19)
Working carers have feelings of intergenerational reciprocity. „It is returning sacrifices my parents did for me and for all‟. (IT-13) „I caregive for her because it is my desire: my mother did spoon-fed me and I do it with her. It 's my duty as daughter but it is also a desire. If I do not go two days to my mother I'm sorry because I know she is waiting for me, I know I‟m important to her so there is an emotional bond‟. (IT-18)
4.5.2.2
Support offers
The offers of help, in case of a dependent old person, came mainly from the closer family members, children or brothers and sisters of the cared for person. Cases of a concrete help from neighbours were very rare. Employers and colleagues seemed to be very understanding but just in the short term, the former in tolerating delays and emergencies, the latter being available to take on the work of the caregiving colleagues and to possibly change a few shifts. When the commitment of caregiving lasts for a long time, the main caregiver organised the work-care reconciliation in such a way as not to be a burden for the colleagues and to avoid negative comments by superiors. Working caregivers in fact tended to consider the caring task an exclusively private matter, which should not interfere with work. 4.5.2.3
Good relation to the cared-for
Sometimes caregivers aged around 50 noticed a reduced distance between them and their parents: their needs were almost similar and a new phase of their relationship starts, lots of misunderstandings disappeared and there was a new chance to solve clear or potential intergenerational conflicts and to create a relationship made of similar moments, repeated phrases, frequent questions but most of the times irritation is overcome by comprehension. „It‟s something that ten years ago would have been a bigger burden to me even it is even now, as all afternoon spent playing cards... but it is rewarding because I have become old too. It‟s rediscovering the relation with the parent ... This one (the father) is ignorant, he is a little fascist! The relationship I find out is different: it is not a burden because I am ageing as well‟. (IT-40)
During the interview the man who made this consideration was very tough, cold and detached: a not very talkative, cynical person. As he spoke about it, he became moved, his eyes turned watery and his voice broke for a while. This view was confirmed by another caregiver, who felt closer to his father because they are now united by the fact that they are both on the down slope of their lives and therefore the distances are shortened. „It must be said that a few years ago I would have maybe felt more trapped, not now because as once one goes on through the years becomes aware that life is a parable, there are the rise, summit and downturn. My parents are on their downturn but I have passed the peak. I'm also downturning so I can understand the needs of older people, whereas a few years ago I would not have even thought of it. In short I do not mind it that much‟. (IT- 33)
Many caregivers said they rediscovered the relationship with their parent and, in some cases, to enjoy their presence more than they used to in the past. Daughters, who for years had suffered from the cold and ineffective attitude of their mothers, were are not relating to mothers, who were waiting for their return and express affection and gratitude as they and their daughters could finally 56
let themselves express loving gestures which in the past would not have been accepted and understood. Children, when faced with the fragility of their parents, decided to provide care for them, forgetting misunderstandings and generational conflicts. „[...]Then as a mother and daughter we rediscovered ourselves again, in short, to tell the truth, I was pretty satisfied. Even now, when I go up to her, who is not whining, I‟m pleased to prepare her something to eat, to give her a little caress, a little kiss because I see she is happy ... something which she has never been before, no way. I‟ll tell you something, my mother did not even kissed me when I married, she is a cold character and now she has freed herself a lot, not to recognize her anymore in comparison to what she used to be. I liked this aspect a lot‟. (IT-58)
Despite these positive experiences, the relationships with the family older member were often conflictual and full of ambivalences, because the older person, especially if suffering, poured out on the caregiver all own bitterness and anguishes. „It‟s a bit difficult in the sense that I think that I am not by nature a very caring person: I do things with a great sense of duty, I am sincere, so I thought I had to do it but it was a heavy thing for me also because I left home very early, I was 20 years old or so, so I do not even have such a physical intimacy, having distanced himself quite soon, but at the same time I have a sense of duty, I know I have to do it anyway because however, they gave birth to me and if she is in need I must do it, however, it is heavy, I must admit it, yes!‟. (IT-37)
4.5.2.4
Improvement of family relations
In section 4.5.1.3 we examined the negative consequences of reconciliation on the family system. On the other hand, there are also good examples of family union, in which to face the elderly disability, the other adult and the younger family members came together in a common effort to provide care. All of them contributed as they can: the older person‟s sons, daughters, grandchildren, daughters- and sons- in law. If the burden was divided in such a way, it was less heavy for everyone and the caregivers felt more united than before. Everything was understood and quietly welcomed: „That yes (to have less time for both of us) but we are closer. That yes because I neither sleep with him anymore, I sleep with her! I do not leave her! I don‟t do anything special for her but I will not leave her, I do not feel like being in another room‟. (IT-24)
A daughter under 30 years old was constantly caring for her maternal and paternal grandmothers, who were living in the flat under the one she lived in with her parents. While her parents worked full-time, she could care for her two grandmothers as she worked part-time. A 35 years woman cared for her grandmother living close to her when her mother, i.e. the elderly daughter, was shift-working. „I'll do it mostly…..almost just me because my mother (the cared for one‟s daughter), is almost always working ... I‟m facilitated by my shift-work and perhaps by my big love to my grandmother and I could not think of someone else caring for her‟. (IT-3)
An under 30 year old man chose to live with his grandmother to ensure she would be with a family member in the evening and at night. During the day the daughter, i.e. the boy‟ s mother, cared for the older mother, supported by a MCW and sometimes by other family members, when the interviewee needs some spare time. „[...]When I was at work my mother and father went often by, for example my mother went shopping, during the day, and logically when I could not as I could not take permissions from work,
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if there were medical visits to be arranged my mother took care of them, but most of the time I was the one spending time with my grandmother, that is in the evening when I came home from work to provide dinner, check her diet, do the dishes and monitor her blood glucose level every night‟. (IT49)
The three described solutions do in particular show an enduring generational solidarity confirming the creative aspect of caregiving of lots of families, who find solutions such as for example, making two grandmothers live together and get on well in order to keep working and, at the same time, staying with their older family. 4.5.3
Summary
Among negative aspects, the most frequent answer to this question is „the lack of time‟ which emerged in 30 out of 60 interviews, ranging from not having time for oneself, to times to be respected, rushing to manage emergencies, reconciling the constant lack of time with personal needs, absorbing time which should be dedicated to other family members (sons, daughters and grandchildren). So, in this question there are different shades. „The most difficult, the practical times, for example, this morning I feel really trapped‟. (IT-4) „I would say the flexibility to arrange the care-need timing with my working shifts‟. (IT-6) „Well, Time! As when you work 8 hours daily. As one spends a lot of hours at work, there is little left time for caring. Here you are! Time. Even for the family itself you have no time because if you consider that you work all life and perhaps in the end spend most of it at work than with your own wife, as when you come home at 5 or 5.30 p.m., even if you're at home, at half past ten, eleven you go to sleep. So by the end of the day you were more in the office than with your family. Eh, so the time I would say‟. (IT-35)
It was hard to plan working with public service opening times for the MCW‟s enrolling or the state care allowance application. It was even impossible to reconcile such times with the GP‟s or the dayhospital ones. Often it was very complicated to match the caregiver free time with the MCW‟s free time: working carers spent an afternoon per week and the whole Sunday caring for the own older family member in order to give the MCW a break. In a situation characterised by „fittings in‟ and reciprocal substitutions every unexpected event is a real problem and a great stress. Other answers focused on the emotional side: the most difficult aspect in caring was the emotional involvement and the sorrow to see a family member suffering, the frustration of not being able to help the painful situation: „Caregiving is something heavy... perhaps more emotionally than physically heavy. More than anything else it is to see a very intelligent person, who used to be master of every minute, of every second of the own life, who used really to decide what to do and why do it in each moment and so on, deteriorating in this way, a little bit due to the disease and a bit after a fall‟. (IT-5)
When the cared for person had a possessive attitude and is particularly demanding, managing the relationship becomes one of the main problems in the re-conciliation. „Sometimes ... it prevents you from everything, you are not free! I got married but the fact is that you fell as imprisoned... this weighs on me. If I could leave three or four days... I could do it, that girl is agrees ... but however each time it's a battle... it takes you the willingness away‟. (IT-35)
We asked to the interviewed persons: „Thinking about the past, what would you do differently? „ Most caregivers have no regrets as they fell to have carried out every possible activity for the elderly: 58
„I have no regrets and neither even remorses‟. (IT- 4)
In some cases there is the desire to live with the old parents in order, at least to spare on transport and transfer times: „In the most critical moments I wish I could take my parents home with me because it would be easier, instead of running back and forth at any time, day or night. So in the past, when I discovered my father had this problem, I was moving house and it was more difficult. They do not live too far away but sometimes the quarter of an hour makes a difference. For example, this summer they have been here a week, the children were not there, they were on holiday with their father, and I did forcibly take them because my parents did not want to come, I have been a week here and I was more calm, it was even more beautiful because I was with them more closely‟. (IT-10)
Living closer the old cared for person is one of the strategies to better reconcile work and care. Some caring children regretted not to be able to spend more time with their parents due to their work, to which one cannot and must not renounce. However the love relationship creates guilt feelings. Others believe to have noticed too late the signs that the person they cared for was ill and regretted not to have started the necessary therapies on time. Only three interviewees complained not to have received the other family members‟ help and are sorry not to have convinced them to do it. Another question asked was: „Which advice would you give to those starting now to be working carers for an old parent?‟ In answering this question caregivers considered the care aspect more than the working one. In fact they suggested looking for any kind of support, either a paid or unpaid one, to share the care burden. Any form of help, either psychological or practical, is welcomed. Only the interviewed caregiver n. 9 had a working point of view as she gave up a manager position to care for her parents. Her advice was to organise work by appointments if possible. For a female caregiver with a big care burden, a resting home for her parent was without doubt the only way to keep peacefully living. „A complete care within an institution should be supported by the government because it is not sure that the access is granted. I think it is the only good thing for the old cared for one and for the caring family. The institute should not be seen as an abandonment‟. (IT-57)
Half of interviewed caregivers do not wish their parent‟s worsening: „That things do not get worse at least‟. (IT -8)
Whereas 2 would like the parent to die not to see her suffering anymore: „The most important desire is that one morning I found her dead. Peacefully dead‟. (IT 19)
Others wish to find some kind of peacefulness. In general only two interviewed persons‟ desires were not related to the care; this was a sign that almost all of them were in depth their care roles and they were not able to think about their future without caring: their expectations, fears, projects were all crystallised in caring. Some caregivers desired to escape, travelling or doing trips to go away from the daily tedium. „Ah , for me many trips! If I reach the 25 years of marriage I go?‟. (IT-50)
Due to the frailty and the constant worsening risk of the cared for individual, caregivers have learned to avoid long-term plans. For them „being here now‟ becomes a real live style. 59
„I got the schedule at the end of the shift „. (IT-51)
4.6 Strategies carers use to reconcile work and care for an older individual 4.6.1
Support measures
The interviewed working carers made use of both formal and informal supports. Formal supports are public and free of charge services from: Health System (Domiciliary integrated care), State (State care allowance and Paid leave-Law 104) and from Local Social Services (Relief month, Daily Centre, Care allowance). They receive supports also from the private care market: the Migrant Care Worker and Rest Home. Informal supports were considered the family network, volunteering and neighbourhood. Among the interviewed persons the support of the voluntary sector and neighbourhood was not very popular, but on the contrary, they asked the family network for help, as it is considered the best support. 4.6.1.1
Family
The family network was important to all carers, either together with private paid carers or without them. Brothers or sisters could let the caregiver enjoy a more peaceful reconciliation, as it was possible to share both the practical activities, as well as the caring emotional fatigue, worries and decisions. Only sons and daughters wished to have a family member of the same age to share their caring experience with, and they are more easily suffering from anxiety states. „Yes, because I am an only child. Without an aid is ... unless one has brothers and sisters, relatives who can give a hand ...It is not easy without help. The advice is to get help from someone. I found it by paying, those who do not have the opportunity have to ask those around. I did not even have any relatives around‟. (IT-19) „The help of the family means a lot, a lot. Then, look, beside the personal experience, when a person is depressed, if there were volunteers keeping company to a person, well, this would be nice, especially for depressed people. Also because you notice the person changing… for example, mom is anorexic, then there is us, then you hear her saying: „eh, I got hungry ...‟. Maybe a little, but she eats‟. (IT-7)
The family support was considered the most important one by caregivers without any other external help (i.e. MCW), as the lady interviewed in the case n. 20. „My brother‟s. Absolutely. Because there is a vent to each other. The moment my moral goes down, there is him to give me strength and vice versa. Because my brother, despite he is a male, is flexible in doing, as he is also living alone, so he fits into any situation. So, to say even in these months in which I was immobile in bed he did everything, from shopping, ... because before I also did shopping, I used to go to the doctor, I bathed first my mom then dad ... Then later after the incident, all these things he had never done, he began making them and how lucky he was there…! And we, I say, even before, when I came down from Osimo, I called him and gave him an account of what it was like up there, that is ...He goes up, he returns and calls me and tells me what the situation is like. My brother is the most important person, yes‟. (IT-20)
According to the family composition and its gender distribution, there were concrete differences in the older people management as well as in the tasks distribution. This study highlighted that sons 60
tend to delegate to their sisters the older parents‟ care. In the best cases sons took responsibility for legal and bureaucratic aspects, reflecting a known and common trend in the Italian socio-family organisation. Sometimes this task sharing depended on real working duties, on the sons‟ physical distance and also on the old mothers‟ shame, who understandably preferred daughters to carry out some tasks linked to their personal hygiene. „He takes care of medicines and condominium, bills.... the administrative side and then for the rest, when he has time he goes also to his home and does the same things. I have much less time for myself. For example, my mother never says to my brother, she needs to go to the toilet, she is waiting for me for these things ... his plays an indispensable role, I would have difficulties following the admistirative part as well‟. (IT-5)
Other times, instead the sons chose to deal with the „cold‟ part of the care, avoiding dealing with hygiene of the cared for person and providing company to him or her. Interviewed female caregivers justified their brothers‟ attitude with a per gender task sharing: the woman cares for the beloved one, the man for economic matters. „I regret that my brother is no longer here, I understand he has his own family but you just cannot leave them (the old parents)‟. (IT-53) „My brother ... doesn‟t give a damn….first he used to come up when the migrant care worker had the day off and I was paying him ... My brother lives alone... firstly he started by saying „ I have enough, I do not come anymore on Sundays‟ and now in November he went crazy and he no longer comes‟. (IT-31) „There's a brother. I reckon sons are always increasingly less available, I mean if there is not his wife, who somehow helps him in doing what needs to be done, the son gives little help. In short this is my situation‟. (IT-56) „Are my mother and I those who mostly caregive for my father as my brother is 4 years younger and he says not to be suited, then I think he is just denying the situation ... now slowly he is becoming a little bit more available, it may happens that we go out together, we go shopping and leave them together on the couch, so they are together, they talk. However caregiving really, to take him to the toilet, my brother doesn‟t do such things and, let‟s say it, I can live with it peacefully. I'm sorry because it is a limit of him, but I think we suffer already enough so I'm not rageing against. I think he feels bad about this limit of him, so I will not criticize him or be against him. We are different‟. (IT-42)
However the only child sons used plenty of practical and emotional resources overcoming all gender restrictions and showing that care competences were not linked to the gender but to the willingness and the emotional motivation. „Personal hygiene if necessary and bureaucratic matters, the migrant careworker does the shopping, but sometimes I see something that she might need and I‟ll buy it. She is always on my mind, there's not a moment…the fact that I‟m busy working, with my family, with the migrant care worker sometimes makes me feel the little time dedicated to her is skimpy, so I also feel guilty. [...] „. On Sundays she is with me, I'll pick her up in the morning and bring her home in the evening after dinner with the family as she would like it to be all week long, but it happens only on Sundays. This is a period when I do not sample (note: the main caregiver works in the commerce sector), and so I caregive for her a lot even daily, things change from period to period. When my father died and my mother was alone, I was in the most productive period of the year and, due to a traffic offence, I was also without a license, I was helped by a person who was driving for me. If I managed to overcome that time, everything can be overcome‟. (IT-55)
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Only in one case a male caregiver, with two sisters, was caring more than they did for their parents as he was living closer whereas the sisters lived outside the town. „...I'm close and then my two sisters live far away, in San Biagio di Osimo ... I shift-work and this allows me to arrange better than they who have a classic work schedule‟. (IT-8)
In families with more sons, there was always someone more involved, but the others were always providing additional support. Large families with more than three children were the most supportive. Sons and daughters, even when paying someone to formally and constantly assist the older individual, created a permanent physical and material network around the parents so as to be closer to them in particular from an emotional point of view. „Yes, we are six normally (brothers and sisters )[...]. If during my mother‟s hospitalisations she needs to be cared for, for a long time and the migrant care worker is not available, they are the ones coming if she does not need anything else ... until we have the person ... instead before the situation was more stressful. I have a good relationship with my brothers ... we have always managed it quite well by paying people ... [...]. Usually on Sundays they are all at our place‟. (IT-41)
The working carer‟s spouse was a rather marginal figure within the caring activities and if he/she had retired, he/she was involved only in case of extreme need. Most of the time he/she provided the main carer with moral and affective support, more so than practical help. The retired spouse was indeed involved in the duties concerning the medical prescriptions and the relationships with the public administrations for issues related to the pension, the state care allowance, and the regulation of the Migrant Care Worker (MCW), but not in the old person‟s management. Partners gave mainly psychological and emotional support to the working carers. „I am supported by my boyfriend, both practically and emotionally. We organise everything together and he listens to me, I can vent and talk to him. [...]. Emotionally the support of my boyfriend is the most important help, more than anything‟. (IT-46)
Out of 60 interviewed caregivers, only one female caregiver‟s retired husband was in charge of changing the incontinence pads and of the hygiene of the severely disabled older person, thus becoming the most important support (Int. 24). „In the morning he (the husband of the caregiver) is there, then there's me in the afternoon except Tuesdays and Fridays when I have to go back to work in the afternoon, otherwise I‟m always there [...]‟ . (IT-24)
In this case, the care burden was really divided and shared by the couple, who took turns in shifts to assist the severely disabled older person. As we will see later, sometimes the grandchildren of the cared for individuals became main carers. The children of the older individuals in fact belong to the generation who have earned a permanent job, often in the public administration in contrast to the previous generations, particularly to those aged around 30, who are part-time or short-term workers because of the difficult conditions of the labour market. In light of this situation, young people were called on to provide care to facilitate their parents so they can earn a secure income, otherwise would have to rely on paid caregivers or on unpaid leaves and holidays, reducing the total household income. „[...]I can leave her in the morning as my son is at home‟. (IT-16)
Friends were considered important by working carers in emotional terms, but not as much in practical ones. In fact, they preferred to ask family members for help rather than friends and keep 62
once more the disease and weakness within the private and intimate sphere, to be managed exclusively by the family. The paid support of a migrant care worker was preferred for the surveillance of the elderly for short periods, rather than asking friends or neighbours, and this is a sign of the loss of the sense of solidarity, reciprocity and generosity among families. The needs of an older person created a compelling force within the family, in the face of a growing breakdown of relationships outside the single families and then among families. The loss of friendships as a result of the older person‟s disease was rather common among respondents. It depended on the actual tasks related to care and on the patient‟s health, but more often on the depressed and worried attitude of the main caregiver, who feels they are not understood by those around them. „I'm in crisis, even with friends. I feel lonely, a wound, a laceration, something that disturbs me. Now we are at New Year ... maybe it's my fault because I am demanding. The usual friends meet at the home of other friends and I can not go because of mom. [...]. So it's not that they completely excluded me. But I feel excluded or I do exclude myself and then there's also someone who tells me „why do not you put in a residential home?!‟. I do not want to hear such things. I do not know how much did the friends put me on the side or if I‟m the withdrawing one: I don‟t want to be judged. And then maybe these are not real friends, they are acquaintances. I have true friends I can talk to‟.(IT-19)
Other relatives supporting the main caregivers were children, that is the grandchildren of the cared for individuals, especially if over-18 and living with the main caregiver most of the time. The support of other family members, such as brothers or sisters, of the older person was less frequent: we found only one case. „[...]Then I‟m supported by my mother‟s sister and by my two daughters‟. (IT-24)
The partners of the cared for people could be a mild support to the caregiving son or daughter when the parents were in good health despite their advanced age. Sometimes they were merely „supervisors‟ of their spouse. „Unless she (the mother suffering from Alzheimer‟s) has big problems, my father covers all night hours and also during the day he is certainly my mother‟s main caregiver and then the fact that we are here at home and I work at home, makes it easier for me to interact with dad‟. (IT-17)
Other times, they were real caregivers, but with considerable consequences on their already fragile health due to their advanced age. „There is my mother .... my father will come home and we will have to care for my mother because she stretched a muscle lifting my father up ... my mother is 81 years and she is bearing up..... yesterday I saw her down even if we organize ourselves: once my mother goes, another one I or my sister or my brother –in- law do. In turn we do help each other‟. (IT-52)
Only children, as we it was already mentioned, were only supported by the Migrant Care Workers 4.6.1.2
Workplace
The interviewed caregivers considered „The Employer‟ either a practical support, as well as psychological one. Company agreements. Employers (mostly if private) were not expected to give a concrete help in 63
terms of paid leaves or daily family supportive policies, but were appreciated if they avoid criticism or worst, threats due to the caregivers‟ possible absences from work. This was a symptomatic reaction of the fact that caregivers tend to divide, in a very drastic way, the private sphere from the public and working one. As previously said, they always tried not to let private problems interfere with their work. „They know I caregive for my mother, it may even happen that I am late or that I have to leave before. They are enough understanding after all. At work I tried not to make feel too much my mother's presence and the issues relating to caregiving‟. (IT-1)
In the analysed interview content, there are frequent sentences such as: „I‟ve always tried not to ask for anything‟ or „I try to manage by myself‟. „My employers know, however it is a burden I hold inside, if I need a leave I rather go on holiday. I do not need to take advantage of laws. I also benefit from the 104 Law but being a small company, we are five, I‟ve never addressed the issue of being absent even if it is a right granted by the Law because it would be a problem. ... I do not know maybe I will. ... I didn‟t have the courage to do so, it is a problem, it is a company in which it is fine if you are there, otherwise one risks ...Do you know what I mean? To speak about a problem everyone is good and dear ... but so far I've made it with the only help of the migrant care worker, I did not want this thing to have an impact on work. I‟ve tried to avoid it as much as possible‟. (IT-12)
These strategies had a price in terms of stress, as later on the same person says: „I'm taking pills for high blood pressure. I took the antidepressants…‟. (IT-12)
Attitudes of Line managers. On the other hand, the reconciliation quality was sensibly bettered by some superiors‟ forms of understanding such as practical solutions like time flexibility: „Yes my manager did help me a lot. At the beginning allowing me to be off work for a long period without notice and even without a return date and now as it allows me both to switch the working afternoons within the week as well as to move them from one week to another. In addition to 104 Law paid leaves, there are permits at our disposal for own family needs. [...]. Definitely, let‟s say that if I would grow apart from my working reality, which I insist is a very unusual reality both in terms of size as well of the personal availability I‟ve been grated, more flexibility with the shifts would be needed, especially in emergency situations‟. (IT-6)
Attitudes of Colleagues. Moreover lots of caregivers have received support, humanity and availability in switching swifts by their colleagues. For some of them these experiences represent the most positive aspect in reconciling work with care: „Yes, my colleagues are all very human, they ask me how things go, then I also know that maybe the day I will leave they might say rumours behind my shoulders, but not all of them [...]. There would be problems if my manager would not be such a nice and human person. He is from the Romagna Region (a central Italian Region known for its very nice, productive and open minded population) in the sense that he thinks there is no point of staying in the office 8 hours daily if you manage to do your work properly in 6 hours that day, then maybe the next you will be there for 10 yours‟ and besides „My case made me discover the humanity of so many people I work with‟. (IT-11)
However there are also those who do not receive any form of comprehension in the working place and are criticised for taking benefit from paid leaves: „Let‟s say that at work they don‟t really understand the need for the 104 Law, for example, today I‟m not at work, then tomorrow I go back and on Friday I‟m absent again because we have a commitment with my father and at the end I‟m regarded as the one often missing from work. It is not
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perceived that I miss because I have a problem, I am just missing! Full stop! ... Someone has often said to me: „you miss because you have your things.‟ So yes, for this reason I feel a little penalized even if, at the end, I say to myself, no matter, I take advantage of the leaves as I need to because I have to go to my parents. Even my colleagues, who did it before me, experienced the same situation, this thing is a bit 'held against‟. (IT-10)
Out of 60 interviews, there was only one case of a „family friendly‟ company policy: it was a bank that has entered into an agreement with trade unions through which working caregivers could enjoy two paid leaves per month in addition to the three provided by the 104/92 Law, so in total there are five paid leaves at disposal. In conclusion, beyond this exception, no other forms of agreements at company level were found to favour working carers, but neither these last ones show a need to benefit from them. 4.6.1.3
Support Services
State care allowance It is an economic support (400, 00 Euro a month more or less) for people who are recognized a disability condition. It is a universal support: it does not depend on the elderly person‟s income, but it is equally granted to all income levels. Moreover the public government does not require a report on the use of the received money. Families mostly use this amount to pay the elderly private care, the migrant care worker or the rest home. From our results, 23 cases out of 59 used this allowance to pay the MCW. Of the remaining cases only one caregiver (IT-9) hired a MCW without the state care allowance (hoping to obtain it in one month‟s time) and the others relied on the family network as the elderly person suffered from a minor disability level.
Paid leaves according to the 104 Law The 104/1992 Law article n. 33 provides three working day leaves a month to parents with disabled children, as well as to spouses, relatives and kin within the third degrees, who constantly and exclusively care for the severely disabled person, even if not living together (http://www.delfo.forlicesena.it/irisversari/segreteria_approfondimenti_legge_104.asp). Generally both employers as well as colleagues have many biases against this measure. Indeed, in some work places, working caregivers applying for paid leaves were criticized by colleagues, considered lazy by their seniors and often downgraded. However despite the colleagues‟ criticisms, for some caregivers the paid leaves were real „breathing moments‟: „[...]The 104 Law which I completely take advantage from until its last minute even because if there is nothing to be done, apart that there is always to go to chemistry or other things, I‟ll take it easy, I need it to breathe. Instead managers say you should not use the 104 Law if there is no need ... .. and the strain of it all? I even need a morning during which I don‟t do anything ... I go shopping for mom of course ... and after I go for a nice walk! At least I reassure myself! I do take advantage of everything‟. (IT-31)
On the contrary, other caregivers, who felt already at risk in their career, preferred not to apply for the three monthly day leaves to avoid being further penalized: „However, there is the 104 Law which I could take advantage from, however it would damage me very much, given my present working position, it would be risky to use the 104 Law that is .. I would be regarded as the black sheep of the group because maybe I can not give to work what I potentially could. They might possibly even transfer me from the office where I am, and I would be sorry because I like the work I do. So since my husband has retired, so far I have preferred not to draw on the 104 Law for this reason but now I think it is necessary, especially after my dad‟s worsening. So I‟ll have to sacrifice myself in some way within my work‟.(IT-56 )
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As mentioned in the paragraph „Consequences of the work- care reconciliation on work‟, only 23 carers out of 60 applied for the three monthly paid leaves. Out of these 23, 21 asked for this right in order to use it and 2 just to be protected. Generally this kind of paid leaves are mostly asked by civil public services employees, whereas private sector workers are less willing to apply even if they have a right to. „I benefit from the 104 Law that would allow me to stay at home three days a month, I‟ve always tried not to take too much advantage of it, that is I use it, if it is necessary, or if I have to spend an afternoon working for the Parkinson Association or for the doctor. when I did not take advantage of the 104 Law I had to ask for holidays‟. (IT-2)
Those who have managerial or executive tasks prefer not to use the 104 Law allowance: „[…] By choice, I have never taken advantage of the 104 Law, as Directive manager I did not reckon it appropriate‟. (IT-60)
Only for one interviewed lady the 104 Law was the most important support and played an even bigger role than the half a day employed migrant care worker: „I find the 104 Law very good as however it is useful because it is not only to go to medical examinations or to do blood tests, but sometimes it is really for the daily management, even to take my father for a walk, as other times working 2 afternoons a week and on Saturdays it may be hard for me to find the time. So if one week we do not have big work commitments ... I take it off and devote myself to stay with them even doing nothing, even only to keep them company, as I think that also these patients‟ psychological aspect is very important‟. (IT-10)
Domiciliary Integrated Caregivers Only two caregivers took advantage from the DIC because they found it useful. However they used it too sporadically to be considered important and reliable support in the caregivers‟ daily management. In fact, it was used in the presence of a nurse for one hour a week to provide personal hygiene or medical care. „[...]the regional health system sends me a girl to bathe her even if she is lying in bed: the domiciliary integrated care: DIC‟. (IT-24) Migrant Care Workers Out of 60 interviewed caregivers, not less than 35 reconciled work and care thanks to a privately paid person, a Migrant Care Worker, who can be employed to cover three-hour shifts according to the cared for person‟s disability level and to the carergiver‟s working hours: half-day (almost always the morning), morning and afternoon, day and night (living with the elderly). In case of a severe disability, a migrant care worker lives night and day with the elderly: this is the most adopted strategy by caregivers of severely disabled older people in order to work. Relived from more heavy physical duties as the personal hygiene, nutrition and transport, caregivers dedicate themselves to providing company, to psychologically and emotionally supporting the elderly person and to the „care management‟, which involves organising everything concerning medical examinations and administrative matters to obtain different forms of help. Out of these 35 MCW, 22 were employed night and day; 9 for half a day; 2 morning and afternoon and 2 were hired on an hour-base as needed. For all caregivers choosing this care and work reconciliation strategy the migrant care worker was the most important and irreplaceable support, especially if there was no supporting 66
family network, i.e. when the caregiver is an only child, as in the case of the interviewed caregiver n. 4: „The help of Alina, I can not rely on the family. If Alina is missing, I'm finished‟. (IT-4)
or of the interviewed caregiver n. 19: „ With regard to the strategies the only right one was to find a person, who is there day and night in the sense that I can relax also at night, whereas before I used to close the gate .... The only strategy, being able to pay, is to find someone who helps and you can trust. It is the only strategy!‟. (IT-19)
The interviewed carer n. 8 shares the same opinion „The migrant careworker is the most important support) as if she is not there we are in trouble. In other words we are forced to go on holidays. Holidays, paid leaves, shift changes. Inside the house there should always be someone‟.(IT-8) „I must say we found a good balance with these migrant care workers: and now clearly if they were not there it would have been impossible to reconcile work and care‟. (IT-60)
In many cases, the satisfaction with reconciliation depended on the MCW‟s presence and on the quality of care. Due to the wide supply of labour, the family members can test different MCWs until they find one they fully trust. „At the moment I have great complications at work, that is ... thank God I have the support of a person not belonging to the family, i.e., the migrant careworker: really without her I was in a serious trouble here, lucky there is this lady because she covers the logistics for sure‟.(IT-48)
When the caregiver is under physical and mental strain and seeks support, the easiest solution is a MCW, or to intensify the work one who is already hired, employing her for more daily hours or even night and day. This strategy was really effective due to its positive effects on the caregiver. „Earlier this summer we hired a permanent migrant careworker. Before I had a part-time girl and after it was not enough anymore, I got sick due to stress and then we had to decide in this way. „... At the end I had to take anti-stress drops. At night sometimes mom needs to be changed, and in the morning for me to go to work the migrant care worker had become necessary ... I thought a lot about it, in a few months I have spent so much money for the paid private care by the hour in order to avoid having a permanent stranger person at home but it was not enough, it was only my brain which was always working ... that's way after a number of things broke out, agitation, anxiety, heart pounding ... I did the heart check-ups but in the end it was just stress and anxiety [...]. I went to a neurologist and I am having a treatment and now I‟m feeling good ... before at night I was shaking and could not sleep then during the day of course… I was already tired when getting out of bed. Now it's better‟.(IT-41).
If the older person‟s mental and physical conditions are compromised, the family hired a MCW to live together with the cared for person. Families with better economic conditions could also afford a substitute to the main MCW when they are on sick leaves or holiday. The study has found three co-habiting ways between MCW and individual requiring care: Female MCW from Eastern Europe (and eventual substitute), mainly from Ukraine, co living with the cared for older person. Female MCW from Eastern Europe and her family made of husband and under three years old little children, living with the older cared for person. Male MCW from South America living 5 days a week with the older cared for person and 67
the other two days he‟s replaced by his mother or by his brother/cousin, so he can relax or study as very often they are university students. The first case was a common and consolidated solution in which there was a frequent migrant care workers turnover as they want to briefly earn a lot and the short geographical distance allowed them to easily go home often. Obviously all this has heavy consequences on the care and caregivers are further stressed by the periodical re-planning of caregiving activities. „My mother lives with two migrant care workers. But they are not always the same persons as those migrant care workers are playing with others‟ misfortunes and so we have to face also these situations!‟. (IT-28)
Sometimes there are such severe misunderstandings between the MCW and the caregiver-employer that the help of a lawyer and trade unions are required. In case of burglaries at the older person‟s domicile the caregiver often attributed them to the MCW. „I have found them through word of mouth. Some, I do not know which of the many, has emptied the cupboard of all the linen. One showed me a dispute because at first they do not want to be regularly recorded as worker in Italy because they work two months to two months. Then you pay them for the time they stay. Then I checked: they are not extra European, they are from Eastern Europe. ...so at the responsible tax office I was told not to do the paperwork to regularise them as once everything is ready those careworkers leave and another comes. They come to earn fast for two or three months, then return home for a while and come back here [...]. One of them started a dispute against me, she suddenly left because she had to go home. So I asked her to give me the time to find another person, and I found one, and… it‟s better not to tell about this one!. She used to ring my bell at 11 at night to say if I could care for Mom because she had a time out for a week, she was nice though! ... but my God! .then I said to the other one she could leave and she got angry as she said I was leaving her in the middle of a street ...‟. (IT-31)
In the second case, even if MCWs were from the same geographical area their objectives and the duration of their stay were different. Female migrant care workers arrive in Italy with their husbands, often with their children as well, and having to live together with the older person, they need to gather their family together so gradually they do ask the employer family to live in the same house of the person they care for. In this way both parties experienced a benefit: the caregiver was assured that the older family member was never alone and it was not necessary to look for another trustworthy MCW. The MCW could live together with her husband and children, sharing sometimes the caregiving tasks with her spouse. She also had time for her children and for herself, without renting a flat. In short, it has reproduced an ancient model of patriarchal family made of three generations, which is becoming rarer in Italy. For the older person‟s family members, the presence of third generation children was a further boost: as the natural grandchildren are often „far away‟, the older persons got some „adoptive‟ grandchildren. A stable and serene affective environment and the possibility for the careworkers to have some breaks fostered the stability of the migrant job and avoids the turnover that many caregivers complained about. „So the migrant care worker remained with Mom, because she has a husband ... so now she is 31 years old, at the time she was a child, her husband has the same age as her. She said to me: „Can my husband come to live here as well? It will mean that the time I went out with my husband, I will go out only half a day because he will be here with me, the same can be arranged in the evening or in the half day off „. For me, time is precious, and then why do keep her separated from her husband?‟. (IT-18) „The migrant care worker started to sleep there. Initially, the migrant care worker could irregularly get free during the day, having already a two year old child at the time and clearly being an irregular situation it was dangerous and unpleasant. Even if after two months I did ask for, she said
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„I have this little child I have to stay with because she is young‟. So, at first she started to sleep there, then she started to take her little girl with her and I considered this essential as the migrant care worker was 28 and to have this baby at home, being myself a father, I know how the presence of a child can keep you active and alert and I thought the relationship could not be only between migrant carer and cared for one but that my mother could also become a sort of grandmother‟. (IT55)
Such solutions were not without conflicts, due to privacy and discretion factors, especially in the beginning, it could be difficult for the older cared for person to accept another person in addition to the caregiver in the house, especially if of the opposite gender. „It‟s been the biggest stumbling block because my mother refused, so he, the migrant careworker, went away and was travelling back and forth for a couple of months living with his relatives ... Albanians ... He did everything, he was working at a sorting centre for personnel ... in the end he came to my mother's house and found this balance, although it was not what my mother was dreaming of ... she rejected him because he was a man, who she did consider as a useful person, due to her modesty because she has to make everything done to her ...then the fact that sometimes she was alone with him when his wife went out and my mother was scared: „who knows what he is going to make to me „ . (IT-55)
The main caregiver delegated all tasks to the MCW‟s except for bathing her mother: „Once a week I go to bathe mom because they are males and my mother is ashamed, so as she is a little heavy and I have back problems‟. (IT-30)
In the third case the MCW‟s gender, not female but male, as well as their origins, i.e. South America was different. This was a long-term migration due to the distance from the home country. In this case, the physically and mentally stressed caregivers, used also their family network to preserve a good quality of life, to study and to be close to the beloved ones. „We have a south American 29 years old migrant care worker (Luigi, a student) then on Sundays there is Luigi‟s mother to care for‟. (IT-40)
In one case there were two careworkers as the two older persons to care for were spouses; the husband suffering from Parkinson‟s, the wife with mobility problems: „I have two Bolivian boys: one stays during the day and the other at night because he needs to be changed overnight and then for safe reasons because these guys are at home looking after dad but also after mom. Whatever they have my phone number and that of my brother and call. It happened that my mother fall while getting up at night to go to the bathroom, she has never hurt herself badly but having someone home ... [...] thank God we are in good hands. I trust these two careworkers, they are good guys, so loyal, you can count on them ... in November dad got ill, they called me at the school where I work ... I'm calm. They are young, one is 26 years old and studies economics. He is married with a little son. The other is younger. And then there is to say that these guys are all a little bit related to each other and when one cannot come, they inform their brother, their cousin, a friend, and so mom is never left alone...’. (IT-30)
The interviewed n. 38 spoke about a „family of migrant careworkers‟, but did not elaborate on the topic. „So there is a real family of migrant carer workers, who do care in turns: in short, mother and daughter, mother and father‟. (IT-38)
Whereas in the previous situation, immigrants created a family network around the cared for older person, in this situation the network was made around the caregiver: in the first the co-residence 69
allowed integration of the various actors, in the second it fostered a permeability of the relationships between older person-main MCW or older person-MCW‟s mother (cousin-brother). The replaceable main MCW guaranteed the necessary stability so that the older cared for person‟s children can be sure the older person is well cared for, without unexpected events complicating their working life. The concept of paid care was extended beyond a female MCW to a „Family MCW‟. It was an evolutionary and adaptive process as also the paid caregiving could be easily undertaken with a networking approach, i.e. together. All MCWs were hired under a regular contract. Most working caregivers complained about the economic effects of the immigration legitimating decree because it caused very high costs for hiring migrant labour. For some interviewees, the only way to reduce such costs was to declare to the authorities that the migrant did housework and not carework and therefore was not a careworker but a housemaid. Residential home Only two caregivers made use of the residential home for their seriously dependent parents. They spoke with regret about this solution as the only possibility given their situation. They went to visit their loved ones in the hospital on a daily basis. Here are the words of one interviewed woman who within a year hospitalised both her mother and father, both suffering from the Parkinson‟s disease. She and her brother decided however, to closely care for their own elder parents. The interviewed caregiver describes a very painful and tiring experience. „So, on the 2nd July 2008 mom was hospitalised. In the meanwhile also my father was... However in my mother‟s case you cannot say, „Okay, she was admitted in the hospital, this is done as well....‟. To drive up every day, especially at the beginning, it is like introducing the children in kindergarten. Even there, she was trying to escape, she refused to eat, in other words [...]. So after much effort, 15 days ago my father entered the hospital as well but he does not accept it at all. The first 2-3 nights it was a nightmare as they had also to call the 118 first aid number and the emergency doctor to give him a shot because he was screaming and beating on the walls with this stick. And my brother! Let‟s drive up with him to Osimo, in the evening ... And now, every day, one day I, one day he, we go to Osimo. Firstly morning and afternoon, then I had also to ask for holidays, we organised it this way: one in the morning, one in the afternoon. Now we do not go up in the morning anymore, we go in the afternoon. In fact even today I came back at 7.45 pm and I was there from 3.00 p.m. Then I put him in bed with us, do you understand? It makes him calm down. But this is something! It has been already 2 weeks ... that every day, I am there, and this situation is not going to stop for now ... I hope that things will calm down as soon as possible, that he can fell this environment as his house and then ... you know ... Everything is a question mark!. We live day by day, always with the mobile phone on, because they can call you at any time, night and day and you have to go up. So it has become a hell, hell ... In fact, just today when he saw me he asked: „when do we go home?...Instead he (the father), in his moments of lucidity when he tells you he wants to go home because we were bad, that we have locked up him in there because we want his home, his money ... Even if you know that he is saying such things because he is ill, to a child such words are always hurting‟. (IT-20)
The decision to entrust the elder person at a residential home was not always free of conflicts, difficulties and suffering. Respite Month Only respondent number 4 used this kind of support, which consisted of the hospitalisation of the elder person in a residential home only for a month so that the caregiver can enjoy a moment of total detachment from the burden of care.
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4.6.1.4
Time out
Among interviewed caregivers, 3 were members of some cultural or volunteering associations, 1 practiced yoga, 2 surfed on the internet, 5 preferred to read books or watch movies, 3 did not do anything to have a break and relax, 1 attended training courses and 5 practiced some sports. For all of them, it was important to have a moment for themselves, as for this carer: „All in all ... being it the internet, a little sports ... the sea ... there were so many times we didn‟t go to the sea often. However, I listen to music, surf on the internet ... all things I do in my spare time ... it's hard ... but I'll try, otherwise one goes crazy. To tell it sprightly… at some point you realise that even caregivers risk…they are too pressed by their work and concerned about the disease: to organize things, call this and that, arrange a visit here and there ... in short, everything which needs to be done‟. (IT-8)
Many interviewed caregivers do not have any free time for themselves and during the interview realize that for a long time they have not had any hobbies. Some of them would even be happy relaxing a bit once in a while. The free moment was always much longed for and appeared too short. Caregivers impatiently waited for their substitutes to have some time for themselves and simple things were enough to recover: a chat with a friend, shopping in the market, a walk. „I‟m waiting for the lady as in the poem „Saturday of the village‟ of Leopardi (note: a famous Italian poem about longed for week-ends and expectations). When the lady arrives I have those hours that, although they involve more work than anything else because you have to run like little hares, but the sun, wind, rain, snow, hail, I do not care but I'm out. It is just a joy. Not only that, but also to go to the market, when you enter from above and look below, it is a splendour of colours, nature, simple life, just life as it should be, to go to the market for me is a very pleasant task‟. (IT-57) „Long walks and a chat with friends‟. (IT-46)
Those who tried to maintain their hobbies sometimes realized they did not to have enough energy. „After I carve out myself spaces, I attend a theatre course ...even there it has become a burden, to go to the probes in the evening after dinner, yesterday I came home at one o'clock at night. Everything has become a burden, everything now in the last year is hard‟. (IT-30)
4.6.2
Strategies
4.6.2.1
Strategies as combination of supports
Each support affected the caregiver‟s life in different ways, i.e. a support could allow time to go to work or to have some free time. Strategies came out from the combination of different supports. When supports allowed a practical and concrete reconciliation, strategies were used to combine and organise such supports in order to help the carer in a particular aspect of their lives. The study carried out so far had revealed that generally speaking, Migrant Care Workers let the caregiver go to work but not to enjoy some daily private spaces or a busy social life. In some cases the fact that the Migrant Care Worker lived together with the elderly and the caregiver limited further this latter‟s freedom: „I think that going back, I would have preferred to leave my mother at her place supported by myself and a migrant careworker and this is the advice I would give to those who should be in the same situation as mine.... I found it very difficult having to share the spaces, times have become tighter and I had to give up part of my social and personal life‟. (IT-1)
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On the other side, the presence of one or more family members who shared the caring duties and worries made it easier for the caregivers to have some free time and a social life. It was even better if in addition to the Migrant Care Worker and the family network, the caregiver could rely on paid leaves to follow the bureaucratic matters or health aspects, either for themself or the elderly, according to the public services opening hours. Reconciliation indeed became a sort of time harmonising game. If times were not flexible, the care and work reconciliation was very hard and stressful. Scheme n. 1 demonstrates the working carer situation: in most cases the working time was fixed and not flexible at all. Also the support times often were often inflexible, i.e. the MCW had to be present for a fixed number of hours according to the employing contract. Services, office and market times followed their own rules, so that the time left to the working carer for the older person was affected by the working and supports times. Thus the caregiver‟s time remained the only changeable element, squeezed and greatly compressed by all others. Within this time many different needs have to be fulfilled: physiological (rest, nutrition, and health), affective and social. The caregivers‟ strategies to reduce as much as possible this compression were many and differ according to the need, to the family structure and to the economic availability. 4.6.2.2
Strategies used by the interviewed working-caregivers
Out of 60 interviewed caregivers, 6 said they exclusively received support from the family; 2 said they received family help and benefited from the paid leaves according to the 104 Law; 1 caregiver was supported by the family, the 104 Law and by the state care allowance. 9 caregivers hired a MCW for half a day and they personally cared for the older family member for the rest of the day in turns with other family members, who in two cases took advantage of the 104 Law. 27 caregivers hired a night-and-day MCW and out of these 8 took advantage from the 104 Law as well. 3 caregivers hired a MCW over the day but not at night. 4 caregivers hired paid helpers for some hours during the day according to the need: most of the times they were people in charge of cleaning the older carer for ones‟ houses and who occasionally carried out the caregiving tasks as well. In terms of the state care allowance, 35 older people took advantage of it and this monetary transfer was mostly used to pay the MCW. The cases in which the family hired a MCW without the state care allowance were only a few: just five. There were also 2 older persons in Rest Homes. The most popular strategy was to hire a Migrant Care Worker according to three different schedules: half day, all day long or night-and-day (co-living with the older person), supported by the main carer and other family members, almost always the main carer‟s brothers or sisters. Strategy A1: MCW in the morning +family support. MCW in the morning and family support. They were not completely dependent old persons and/or who still had a healthy spouse. The working carer spent the morning at work and, thanks to the presence of the MCW, went to the cared for one in the afternoon, in turns with other family members (often the carer‟s sisters). When at the cared for individual‟s residence, the working carer carried out all tasks: carefully monitor, maintained hygiene, prepared meals. During the night the 72
older one could ask his spouse for help, in case of need. Strategy A2: MCW all day long+ family support. They were alone dependent old persons or with spouses, who could not be supported in the daily tasks, such as cooking and caring for their ill partner‟s hygiene and the house cleaning. The working carer spent their entire spare time from work with the beloved one (2 or 3 afternoons per week) in turns with other family members, replacing the MCW during her days off. The cared for ones did not need help during the night. Very often this strategy was chosen by main carers, who lived very close to the cared for person and could quickly attend in case of need. Strategy A3: MCW night and day+ family support. They were completely dependent older persons, who needed constant care. The main-carer went to the cared for person in their free time from work and in particular to replace the MCW during her days off, in turns with other family members, sharing tasks and responsibilities with them. Strategy A4: MCW (half day, all day long or night and day)+paid leaves. To differentiate the duration of the daily MCW‟s presence within this category would have requested too many subcategories. A MCW was placed in the care of their beloved one by the working carers, who visited the cared for person more than once a week, keeping him/her company. Besides, thanks to the paid leaves (104 Law) they looked after the bureaucratic and practical issues. As they were often only children, they are fully in charge of caregiving. Strategy A5: MCW (half day, all day long or night and day)+ family network + paid leaves. These working carers activated more supports in order to work and to assure the night-and-day constant care for the older person. Strategy A6: MCW+paid leaves+other public health serivces Strategy A7: MCW. The MCW was the fundamental support. Working carers who chose this strategy were always only children, who provided care during each free moment from work (when they have to replace the MCW) and always managed the general care (bureaucracy, MCW‟s contract and more). Such working carers had the exclusive responsibility of the old cared for one, who was almost always in poor health and totally dependent. There were other working carers who could rely on the family network supported by short, occasional and informal helpers or by paid leaves, granted to those who exclusively provide care for dependent parents. Strategy B: only family network (+ occasional support by hour, or only some days of the week, informal help from colleagues). Such working carers relied exclusively on the family network. They were not the only reference figure for the cared for person, but the most important one as they were spending more time with him/her and they managed the beloved one‟s emotional wellbeing. The other family members were not just a support and were fundamental in caregiving when the main carer was at work. Sometimes this last one was helped by a retired spouse or by the cared for person‟s spouse, brothers and sisters and children. However such main carers did not take advantage from the paid leave as the older one was not 100% disabled and he/she was not severely dependent (except for the interview n. 24). Strategy C: family network + paid leaves (104 Law). Working carers who chose this strategy, unlike the previous ones, took advantage from all paid leaves and could therefore better manage the family issues.
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Strategy D: Rest home. The two working carers, who chose the rest home were responsible for severely disabled parents and visited them almost daily in free afternoons from work, and were close and physiologically supportive to them. Strategy E: Use of Integrated Home Care (ADI). Working Carers took advantage from the Local Health Services mainly for transfers in an ambulance. The state care allowance is the only state support, which was almost always used to pay the MCW although it was however functional to pay other supports. For this reason is not considered by itself as there are no cases in which the state care allowance is the only activated aid. At the moment of the interview, the care allowance, granted by the Local Social Services of the municipality of residence, was not used by anyone. However two working carers had applied to it and were waiting for an answer. Table 21 Kind of strategies
Kind of strategy
Number of interviewed persons
Number/strategy
A1 (MCW in the morning 1,6,10,13,33,36 +family network)
6
A2 (MCW all day long+ family support)
4
9,43,54,60
A3 (MCW night and day+ 2,5,8,21,23,26,30,32,38,39,41,45,58. family support)
13
A4 (MCW (half day, all day long or night and day)+paid leaves/parttime)
40,51
2
A5 (MCW+ family network + paid leaves/part-time work)
11,21,42
3
A6 (MCW + paid leaves +other public health services)
4,46
2
A7 (MCW)
12,18,19, 28, 29, 31, 34,47,48,55,56,57
12
B (only family network+ some occasional private paid support)
3,7,14,15,16,17,22,24,25,27,35,37,44,49,50 15
C (family network + paid leaves -Law 104 or informal support from colleagues)
52
1
D (Residential Home)
20,59
2
E (only home care services)
53
1
Total
60
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4.6.3 Summary: Which kind of support at the public, company or societal level is most efficient for the reconciliation of employment and care for older individuals? A hypothetical classification of most appreciated supports would be certainly similar to the following: - MCW - Family - State care allowance - 104 Law As already pointed out in the section about the MCW, our study shows that this support was largely considered the most important. At the same time managing such arrangements is not always easy both from the legal as well as from the relational point of view. The family was the second most important support and caregivers with the total care responsibility suffer more of panic attacks were are more stressed by the work-care reconciliation. However, considering the several internal contradictions about the preference of caregivers between MCW and family, we need to discriminate two kind of caregivers‟ point of view: mental and practical. When interviewed, people considered that the emotional and psychological support was very important and they thought it could be provided only by family members and reported the family as most efficient support. On the other side, if the caregivers thought the practical support was the most important for coping with reconciliation problems, they reported the MCW was the most efficient support. The most efficient strategies among Italian working carers were the combination of Migrant Care Worker, Family and Paid Leaves. The state care allowance was considered important to pay the MCW, whereas the 104 Law was largely appreciated even if for only 5 interviewed caregivers it was the most important support. The isolated support was not so important as the combination of different types of aids.
4.7
Working carers recommendations for improvement
The interviewed main working carers were asked their opinion on any possible measures that would facilitate the reconciliation of work and care. Their resulting suggestions are distributed in five topic areas:
support from the Government (Social Policies) help from the working place help from MCW and private carers help from the Health National System help from the Third Sector
Within the Government area (20 respondents), we identified five areas of interest: 11 respondents say that reconciliation could be helped by an increase of the State economic aid, through monetary transfers to old disabled, that the family could then use to buy more appropriate services. „If there was a possibility of saving a little on these migrant care workers or to get a subsidy or a
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person to replace one of the two. It would certainly be a significant cost savings but it should be a person that I trust because safety and tranquillity are important‟. (IT-30)
Four respondents‟ suggestions regarded in general Social Policies to support the family and four others the use of Day Centres to allow carers to go to work. Only according to one interviewee more information on carers' rights and on the available services could facilitate reconciliation. Five respondents reckon the simplified paperwork would be helpful to help reconcile work and care. „It would be nice if, I don‟t know, bureaucracy was streamlined and lighter in the sense that I have noticed that there are so many things, even relating to the pension. The many letters send to the home of older people regarding the National Social Security Institute, bills. If my aunt would not have been supported by a neighbour of 40 years, who is however within this issue, it is however a difficult job, because I always think that if my aunt would have been without me, reading alone the post coming home, it would have been really difficult!‟. (IT-34)
It is interesting that the suggestions mainly concerned the economic and monetary aspects, rather than the provision of social and health services: users addressed resources to suit their needs, but were also showing to mistrust the public services, as expressed by the interviewed person n.11: „The Economic support, I know it may sounds bad but the economic factor reflects itself in everything else because everyone comes to terms with what one has: if I had an higher disposable income…! I‟m the one living with the sick person so I know what this one needs, it is useless to me to have 3000 various instruments I cannot use. A silly example, I knew that when my grandmother suffered from Alzheimer there were some leisure centres, which were wonderful to keep these people, but not all people are comfortable in such places. If my grandmother was in such a place, where she didn‟t know someone or the outside of her home, she would have gone crazy. So it is a laudable initiative for many but not for all. It would have been useful to me to have more money to hire a private careworker, always the same one, who my mother/grandmother could get to know. So, according to me the economic aspect as it allows to come to terms with the reality of each one. Unfortunately today money can repay the availability of time, space, of a supporting solution at home. Unless you do not put the cared for people in centres, facilities…. however, then who does care of what they do, as they are, how they feel ..? to someone I love I would not do it, she is already unlucky because she is ill, to lock her up would be too much‟. (IT-11)
According to some respondents, the network of public aids in particular of the health ones, is too narrow and incomplete: long waiting lists in the hospitals for routine examinations, little attention paid to the disabled, poor organisation of the services, too long delivery times due to the many bureaucracy procedures. The following is the comment of one of the respondents: „Yes, yes, the network of public support, this one is a small network because there is no barber, podiatrist … when you are in and start to ask for support most probably, by the time you get it, you don‟t even need it anymore „cause the crucial moment of the problem is over, perhaps you are already death, that‟s it! It is a too long procedure! Recently, my brother was caring for the „scourge‟ of my father. My brother lives here, we went to the dermatologist who just advised us for some specific ointments and nothing else. I‟ll tell you this as well: My father had a cardio-circulatory attack so preventively and continually he has to check-up through electrocardiogram, ultrasound etc...to do these things there is a facility here in Osimo but they do such examinations only on Wednesdays, which means that you go there and receive a number 3 or 4, but nothing starts before 11 a.m.: you lose half a day. But it is not a question of the half-day, my father in his current conditions – he has never been keen on waiting and maybe this aspect has never abandoned him even unconsciously - when he goes there it is a disaster, we even made him driven by the ambulance because he could not do the stairs. They don‟t consider there is someone under certain conditions. It is not that he has to pass in front of the others, but somehow there should be a preferential path for those you are not like everyone else. The last time we were there we got there at 9.45 a.m. as I was told: „come before that perhaps we do make it‟. We arrived back home at 14 p.m.! So even there we did dribble. My doctor is in
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Montefano (note: a nearby village in the same province) and carries out ultrasounds and electrocardiograms in surgery as well, I did call him, and soon I got my date without waiting, I paid 40 euro and everything was over!. In this case my mother pays 40 euro, I drive her and we are back home within one hour. Otherwise here I have to loose four hours, my working day is wasted, my father arrives home very angry, it's inconvenient for everyone ... you tell me if it's worth! I’ll rather pay’. (IT-33)
Also the assessment on social services is very strict: they were perceived as distant, inappropriate to the problems experienced by older dependent people and not sufficient to improve the reconciliation: they are „drops of water in the sea‟: „The social aspect is lacking because maybe in the city of Ancona the problem is less perceived, but here, in Osimo the „Club for older people‟ was organised, a gathering, aggregation, place. For heaven's sake I will not penalize it! It is certainly something valid, but those who can not move, who have other problems like my father, don‟t need the „Club of older people‟. Different services are needed. The town has activated the social services, which sends a support person 2 hours per week but such things are palliatives, are drops of water into the sea. Here in Osimo the thing is latent, perhaps in the city there is more organisation, I do not know. It is unbelievable, we live in the world of IT, telecommunications, and then for issues regarding health, which is a citizens‟ primary right, one has to face such long waiting lists, which are even scary‟. (IT-33)
Out of those who argued that a better conciliation should start at the workplace, seven people would like a greater flexibility in terms of working hours. „From my perspective I would say a possible flexibility in working hours if you need an hour to go to your parents and can not get away it is a problem‟. (IT-53) „Practically it would be useful to have a more flexible working schedule „.(IT-27)
Others would like the possibility to tele-work from home, three would like more paid leaves in comparison to those the 104 Law is currently allowing, two people said many of the issues regarding reconciliation could be solved by higher wages and two respondents were of the opinion that working carers could better reconcile if at the workplace their colleagues were more supportive and sympathetic. „The tele-work. As mine is a work I could and can do even from home, tele-work would have been ideal as I don‟t take work off the company, in the sense that I do work according to my working schedule, I can follow projects via PC so, it would be ideal, because I am at home and so if needed I am there. According to me tele-work it's something that, if properly applied, it is indeed a lot used abroad for example, I mean if properly applied, well it‟s a „geniality‟ because it saves on transports, on the time to go to work, especially if it is distant, and more or less you are home, however in Italy it is an idea which does not take off because the boss always wants to see the worker‟. (IT- 49)
The reflection which emerges from the data analysis concerns the total absence of suggestions from working carers for formal company policies in favour of workers who care for elderly family members and the lack of awareness on the potential of such measures. They would rather think about an informal support from colleagues. In the mindset of workers (and even of the working carers) the company is not regarded as a possible interlocutor in the dialogue on social policies in favour of the family. As already stated in the course of this contribution, care remains within the people‟s intimate and domestic sphere. Four working carers suggested a greater use of private carers and MCW who, in most cases should be paid with a State contribution „A physical help from someone or a money aid, perhaps money ... I have no other ideas‟. (IT-36) 77
„For me, if there was always this girl, every during the day, but now it is not economically possible, it would become too expensive‟. (IT-37) Only five working carers suggested a greater commitment of the National Health System for the work-care reconciliation. In fact, they turned their attention to the cared for ones‟ health problems and so their answers are unbalanced on one aspect of the reconciliation, even if it reflects also in the working sphere. Suggestions regard a greater involvement of general practitioners and specialists (such as Nutritionists and other professional actors) and one in particular seems important: the creation of patient integrated hospital discharge pathways (i.e. the Italian pathway to follow patients after hospital discharge through integrated local health and social services). Working carers expressed the need for a professional support like a nurse joining the family during the first days after the hospital discharge. Some of them spoke a lot about the difficulties faced when their beloved one was back home and no longer self-sufficient: the organisation of the care practical aspects such as the provision of drugs, the management of incontinence, which add themselves to the personal reworking of the psychological trauma due to the personal disappointment of seeing a family member suffering. „Certainly, in my opinion, a support, I mean not a nurse, but still a certain kind of care at least in the first period as the situation is somehow reversed, precisely a situation in which you are really disoriented, because however finding yourself in an entirely new world, with the illness of a dependent person, one does not even know where to start from if we want to put it in this way. So initially, I think that a support would be very helpful but not just in the aspects of the everyday life ...so… that kind of assistance in explaining that the drugs should be taken in a certain way, this aspect should be followed, as at the beginning, at least in our case, we did it very wrongly, because it was clearly a new situation for us and we were not sure, then maybe to receive information and assistance, I‟m not saying half a day, but well, in the first place a support, I think would be important‟. (IT-29)
The last considered area was by the respondents is the Third Sector. In particular, they suggested a greater involvement of voluntary organisations in caring for elder family members and the creation of solidarity networks among the caring families of older people living in the same neighbourhood. „As I said before there might be a better organization at the local level to assist families who have an old member to care for, a financial aid or even only a voluntary help to keep company to the elder ones and keep them in some way alive, active and present‟. (IT-45)
Many respondents had the same desire to share their experience with other caregivers and two of them explicitly suggested self-help groups to improve the reconciliation. In this case the possibility to recognise their own story in several other similar and different ones would help caregivers to achieve the needed serenity to better organise their care and work duties. „Maybe something official is missing, there is no recognition, because if you don‟t benefit from the 104 Law if you ask even for a day-off is at the discretion of the manager to grant it or not: Instead I didn‟t apply for the 104 Law. I do not know why I do not want to apply, however, I‟m close to do it ... I think that only those who are experiencing a situation similar to this can really understand what it means. Maybe something ... It's like if everyone lived this experience indoors, perhaps it should be shared since it is so heavy. If one day I don‟t go to school it is not because I don‟t want to but because I have a need. A collaborative space. To be able to relate with other people, who live this thing. I feel this…. Greatly! Because those who do not live certain experiences, do not understand! Some people can travel, but there is always the presence of someone else, instead I'm alone, I'm alone!‟. (IT-19)
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5 Profiles of working carers 5.1 Introduction Each care situation was different from others as well as the work commitment but all the situations had a common feature: the level of work and of care need affected always the strategies the caregivers used to achieve the work-care balance. For this reason we matched different care and work levels of burden to picture four types of working carers. The amount of work was determined by the number of working hours. We decided to create a threshold of 30 weekly working hours to define the concept of high and low level of work, „low‟ up to 30 hours and „high‟ from 31 hours up. The level of care came out combining the caring hours, namely the daily care need even if not wholly provided by the interviewed main carer, with the kind of impairment described by working carers. Using this approach four types of working carers come out: 1. High level of work/Low level of care need (H/L) 2. Low level of work/low level of care need (L/L) 3. High level of work/high level of care need (H/H) 4. Low level of work/high level of care need (L/H) These „Ideal Types‟ are not static but the experiences of the caregivers change following the progress of the disease of the old person and the efforts that are required on the work front. Thus when the care need or/and the work tasks arise, the support need grows up as well. The caregivers are used to change their strategies to adapt themselves to the flux of the events.
5.2 Description of working carers profiles At the beginning, the socio-demographic features of each typology were analysed (Tab. 22). From this analysis it was found that the Educational Level was an equally distributed factor within the four categories, as well as the Household structure. With regard to gender, women significantly prevail in all types, as they are the majority of the whole sample, but we notice a lower gap between men and women in the High type work /high care type. Perhaps this is due to the fact that in cases of very bad health conditions of the cared for parent, if no daughters are available even male children decide to provide some support to their parents. Only three women changed work due to the care tasks. Table 22 Description of typologies
Number of carers
High hours of work low care level 15
Low hours of work low care level 3
High hours of work - high care level
32
Low hours of work - high care level
10
79
Carers main strategy 7 Family network 7 MCW 1 none
11 LEL 4 HEL 5 SW 5 C1W 5 DW 9 females 6 males 2
2 females 1 males 0
10 HEL 22 LEL 11 SW 6 C1W 15 DW 19 females 13 males 13
IT9 (ex-manager, now works on appointment) IT29 (She quit off one of two parttime jobs) IT57 (Pre retirement) 6 HEL 4 LEL 5 SW 3 C1W 2 DW 9 females 1 male 2
3
0
16
4
5 5
1 1
18 13
6 5
6
1
10
4
Level of education
Impact on work (lack of concentration stop of the career) Impact on family relationships Impact on social life Impact on wellbeing and health Impact on financial conditions
5 MCW only 4 MCW+ Family network 1 MCW+ informal support from managers and colleagues
0
0
Gender
13 MCW+Family network 5 MCW only 9 Large family network 3 Family network only or +Paid Leaves 2 Rest Home NB. Paid Leaves are useful for those who have family support, but very important for those carers who have the MCW support only. 0
Change of work situation because of care
Household structure
2 MCW 1 Few family network
The Table below (Tab.23) shows the strategies used by each group of working carers. We realised that supports are used with different intensity and the number of the involved persons in caregiving varies as well as the amount of hours. We called carers with a „strong family network‟ those supported from sister(s), partners and other family members, and carers with a „weak family network‟ those supported by only brothers dealing exclusively with bureaucratic tasks. On the other side, we defined as „strong‟ the MCW living with elderly night-and-day or all-day-long, and „low MCW‟ the one spending with the older person only a few hours a day. The following are the typologies of working carers: 1. 2. 3. 4.
„Work oriented‟: high work/low care „Under control‟: low work/low care „Balancing work and care‟: high work/high care „Care oriented‟: low work/high care 80
Table 23 Strategy used by each typology of working carer
Hours of work Low care need (cared for person is not able to do some of IADL alone. He/She needs help due to physical impairment) High TYPOLOGY: Work oriented >31 working carers 31
