A state of caring : an ethnography of (in)formal care in a Dutch locality

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A State of Caring

An ethnography of (in)formal care in a Dutch locality

Master Thesis Master’s Cultural and Social Anthropology Graduate School of Social Sciences Zerline Henning/10011625 - zerlinehenning@gmail.com Academic supervisor: mw. prof. mr. dr. B.A.M. (Anne-Mei) The Second reader: dhr. dr. prof. R. C. (Robert) Pool Third reader: dhr. dr. L. G. H. (Laurens) Bakker Client supervisor: Esther Sarphatie August 2015, Amsterdam

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Abstract

In the Netherlands, prospective and past health care reformations have led to public anxiety about the quality and availability of care for the elderly. Among others, the elderly are encouraged to stay at home longer before making the transition to a nursing home. These policy shifts are accompanied by an appeal by the government on family and others who are close to the elderly to take care of them. These informal caregivers are called mantelzorgers, a term coined in the 1970s, and now widely used in Dutch governmental health care discourse, as well as by informal caregivers themselves. Simultaneously, many care responsibilities are being transferred from the national government to individual municipalities. This leaves municipalities in charge to create their own informal caregivers support policy. One of the towns struggling with the question of how to do this, is Hilversum, where the fieldwork for this research was conducted.

For the study, support workshops and lectures for informal dementia caregivers were attended, and participants and Hilversum municipality officials were interviewed to explore the experience of Hilversum informal dementia caregivers. Key to this experience are radically shifting relationships, and the threat of autonomy that especially caregiver partners seem to experience. Combined with a state discourse of self-control and refamilialization, the loss of control and independence becomes even more problematic for informal dementia caregivers. In practice, the increased pressure on citizen’s own social networks to provide care, is targeting women most heavily. Informal caregiver support policies should therefore be gender sensitive, and take into account the enhanced friction that arises when people cannot live up to the high self-control standards enforced by the eigen kracht ideal.

Keywords: familialization, neoliberalism, informal care, dementia, autonomy, self-control, gender and care, participation society.

Title page image: http://www.q4q.nl/wp-content/uploads/2014/10/workshop-10-oktober-6.jpg accessed 03-07-2015

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Plagiarism statement

Declaration: I have read and understood the University of Amsterdam plagiarism policy [published on http://www.student.uva.nl/fraude-plagiaat/voorkomen.cfm]. I declare that this assignment is entirely my own work, all sources have been properly acknowledged, and that I have not previously submitted this work, or any version of it, for assessment in any other paper.

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Introduction

1.1 Long-term care, the changing role of the state, and informal dementia

caregiver experience

“Right now she’s going to the daytime activity center three times a week, but I don’t know if that will still be possible next year. (…) It’s getting harder and harder to get her out in a good mood three times a week, so I’ve been thinking about switching to two times a week and see how that goes. But I

don’t dare to do that now, because what if I can’t switch back when soon they’ve changed everything? You’ve got what you have, and then you’ll just have to see if you can get something

more.” Henny1

In the Netherlands, prospective health care reformations that include cuts in budget and formal home care hours, have led to public anxiety about the quality and availability of care for the elderly. Simultaneously, the elderly are encouraged to stay at home longer before making the transition to a nursing home.2_{These policy shifts are accompanied by an appeal by the government to family and} others close to the elderly to take care of them.3_{These informal caregivers are called}

mantelzorgers4_{, a term coined by prof. dr. Joop Hattinga Verschure in the 1970s (Hattinga}

Verschure, 1977), and now widely used in Dutch governmental care discourse.5

Care reformations are accompanied by the government-promoted idea that new care policies are the result of mere adjustment to shifts taking place in society already. “Society is changing. Care changes along” is the slogan legitimizing care reformation, which could be heard on Dutch radio stations by the end of 2014. As Duyvendak commented at the 2015 Amsterdam Long-Term Care Partnership Congress, this slogan suggests the image of a goofy government which is trying its best

1_{Based on an interview with Henny, one of my interlocutors, in October 2014. Translation by me.}

2_{NOS 23-04-2014}_{http://nos.nl/artikel/639344-minder-thuishulp-toch-goede-zorg.html}_{accessed 23-11-2014}

Dé Weekkrant De Gooi & Vechtstreek 19-11-2014

http://www.lexisnexis.com/uk/nexis/results/docview/docview.do?docLinkInd=true&risb=21_T21002438453&f ormat=GNBFI&sort=BOOLEAN&startDocNo=1&resultsUrlKey=29_T21002438457&cisb=22_T21002438456&tre eMax=true&treeWidth=0&csi=418653&docNo=7 accessed 23-11-2014 Eindhovens Dagblad 10-11-2014 http://www.lexisnexis.com/uk/nexis/results/docview/docview.do?docLinkInd=true&risb=21_T21002465988&f ormat=GNBFI&sort=BOOLEAN&startDocNo=1&resultsUrlKey=29_T21002465992&cisb=22_T21002465991&tre eMax=true&treeWidth=0&csi=149020&docNo=1 accessed 23-11-2014 3_{http://www.rijksoverheid.nl/onderwerpen/hervorming-langdurige-zorg/veranderingen-in-de-langdurige-zorg} accessed 23-11-2014

4_{The singular noun mantelzorger literally translates into ‘cloak caregiver.’}

5_{http://www.rijksoverheid.nl/onderwerpen/mantelzorg/vraag-en-antwoord/wat-is-mantelzorg.html}_accessed

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to catch up with ever-changing society. But if new laws such as the Wlz, Zvw and Wmo 20156_are merely adjustments to changes already occurring, why are Dutch citizens constantly told that they should care more for their neighbors? According to Duyvendak, they are actually dealing with a paternalistic government that enforces the ideals of autonomy and self-control. This supposed paternalism is indeed one of the concepts that will be further explored within this thesis.

At the same time, the task of composing care that is still being provided, is being transferred from the national government to individual municipalities. This leaves municipalities with the question of how to support the so-called mantelzorgers in the best way possible, in the absence of part of the support that used to be provided. One of the municipalities struggling with this question is Hilversum, the biggest town in the Gooi and Vecht area in the province of North Holland, with a relatively large group of elderly residents7_{. The most important changes in the care system are} taking place in 2015, the year in which the research for this thesis was conducted. One question of budget allocation that the municipality has, is if a certain series of workshops should be funded as part of the informal caregiver support system. These workshops were the initiative of Ernst Buning, a trained psychologist who lost his wife to dementia. During the process of her illness he took care of her, and on the basis of what he has learned from this period, he started organizing workshops for other informal dementia caregivers to learn how to improve communication with their care receivers. The 2014 pilot, which was funded by nongovernmental welfare organization Vivium, started out with Ernst and ergotherapist Annemarie Bolder as trainers. While sessions continued in the spring of 2015, local Gooi & Vechstreek municipalities were contemplating if they should fund them, and incorporate the workshops in the municipal support system.

Initial participation for the workshops by informal caregivers was low, and both trainers and municipalities are asking themselves what prevents people to look for support within the

municipality, and to take part in the workshops in particular. They are aiming to create a situation in which the way to help is facilitated, in this case specifically for dementia patient’s mantelzorgers. In a separate report based on this research I will, therefore, advise the Hilversum municipality on how to best provide support for informal dementia caregivers. This thesis is an ethnography of informal care, and deals with the outcome of the fieldwork in a more academic manner, although I do not refrain from giving some rudimentary advice based on the conclusions of my analysis. Here, I will delve into the concepts of, among others, autonomy and neoliberalism, which I have seen to be fundamental for understanding the particularities in the field I studied for three months. Although the starting point for this thesis is informal dementia caregiver experience, attention will be given to care policy, too. I will do this with the aim to lay bare assumptions underlying governmental

language, to show its possible effects, and to enable the thinking up of alternatives. In the words of

6_{Wet langdurige zorg (Long-Term Care Law), Zorgverzekeringswet (Health Care Insurance Law) and Wet}

Maatschappelijke Ondersteuning 2015 (Social Support Law 2015) respectively.

7_{There are 29,6 elderly people to every 100 20-64 year-olds in Hilversum, compared to 21,2 in North Holland}

and a national average of 22,1. http://www.cbs.nl/NR/rdonlyres/DE3BB72E-92BC-4B2B-B005-C2FFBD312CF4/0/Hilversum.pdf accessed 19-10-2014

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Duyvendak8_{: “Care policy has strong ideological grounds. Research doesn’t have to temper this} enthusiasm, but can enable a conversation about the ‘shadow side.’”

I will be looking at Hilversum informal dementia caregivers, and every so often at their relation to more formal forms of support, from three different levels, and finally, from a perspective that includes all three. In the first chapter, Shifting relationships, I will start from a micro-level, zooming in on the often intimate relationship between caregivers and care receivers. I will discuss how caregivers experience these relationships as rapidly changing, often restricting their autonomy, and rendering them lonely even though most caregivers and -receivers are together for a big part of their time. In the following chapter, Women and the family, I zoom out a little to the network around the caregiver, and look at the differences I found between caregiving partners and caregiving children, while relations of both to their care receivers were shifting as well. In a society where the pursuit of personal interests is crucial to the highly valued development of the individual, ‘even’ partner caregivers’ capacity to care is strained, and care arrangements like the safety net of the case manager prove to be vital to the quality of care for the person with dementia, as well as the well-being of the caregiver himself. However, constructions like these might become threatened by familialization policies that coerce informal caregivers to take on increasingly intensities of care by themselves. Social inequalities are likely to increase in the face of a sex-neutral approach to informal care by the national government as well as Hilversum municipality, when women are implicitly still the caretakers of Dutch society. In macro-level chapter three, Eigen regie, the self-control norm that I see to be partially linked to neoliberalist tendencies in Dutch society, is explored, and shown to problematize informal caregiver’s struggle for autonomy (even) further. The emergence of two types of neo-paternalisms is discussed within the Hilversum context, and the self-control norm is further elaborated on in the case of the informal caregiver workshops. Finally, Intersections deals with the intersections between various things that were of relevance in the field, for example the friction between a neoliberal logic of choice, and the dawn of a new social paradigm of care that various stakeholders were invested in creating. Ultimately, the conclusion will entail some further reflection on the outcomes of this research. Based on this, I will conclude with some advice for policy makers involved in informal care. For instance, I advise to look at the Netherlands’ northern neighbors for an example of highly progressed care marketization, privatization and familialization, that can serve as both a warning and a source of inspiration.

Naturally, the distinction between three levels that I make in my chapters consist of ideal types, crafted to enable myself and my readers to make some sort of distinction which I found helpful to gain a grasp over the field. Yet of course, no such levels ‘really’ exist, and even in their ideal forms as presented here, they are overlapping. For instance, I see caregiver’s struggle for autonomy within their specific contexts as intrinsically linked to the self-control norm endorsed by Dutch

‘participation society,’ but for the sake of building an argument, I separated the two in the process of writing.

I have conducted this research in a time in which the erosion of the welfare state and the struggle of the elderly to become of old age in a dignified manner are hotly debated topics. Simultaneously, The (2014) argues that dementia in our society is a condition with which people have to find out by

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themselves how to deal with it. She calls it a tragedy behind the front door. It is my aim to contribute to a nuanced understanding of what it means to be an informal dementia caregiver, and to the (medical) anthropology of care as well as the studying up enterprise, by zooming in on the case of informal caregiving in the central Dutch locality of Hilversum.

1.2 Research questions

The question that the municipality of Hilversum has asked me to answer, is:

How do mantelzorgers in the Gooi and Vecht area look for support, and are the workshops currently organized to improve communication between mantelzorgers and the people they care for in line with this or not?

The academic question that I have formulated from this, and that I will aim to answer in this research, is:

How can the experiences of Hilversum informal dementia caregivers, and the way they do or do not intersect with government (discourses on) care, be understood to best arrange municipal support? The main question of this research is divided into the following sub-questions:

1. What are informal caregivers’ experiences of taking care of the care receivers? 2. What are informal caregivers’ discourses of taking care of the care receivers? 3. In what way does the Hilversum municipality (not) connect with informal caregivers’

experiences?

1.3 Setting

A fairly large part of the Dutch population provides help of some sort to friends or family who are temporarily or chronically ill. The nature of this help varies greatly, from a weekly walk through the park to full-time home care. The number of people who say they provide help for ill friends or family, is rising because of changes in government policy that emphasize personal responsibility and restrict nursing home admission, of which the 2015 reformation will be a continuation (Oudijk et al. 2010). The number of people who feel heavily or overloaded by this care has risen by 50% between 2001 and 2008, while the total amount of informal caregivers who provide care for more than eight hours a week and for more than three months, has ‘only’ risen by 8%.9

Part of the province of Noord-Holland, the Gooi and Vecht area is made up of the nine municipalities of Blaricum, Bussum, Hilversum, Huizen, Laren, Muiden, Naarden, Weesp and Wijdemeren. From the 17th_{century up until the present day, the area has been popular with the rich and famous of the} Netherlands. Since the Dutch golden age, rich traders from Amsterdam would build their vacation homes in the area. Later, many wealthy citizens working in Hilversum, the Dutch ‘media capital’10_, resided in the area. This resulted in a relatively wealthy population spread out across the area, with four municipalities making the top ten of municipalities with the highest average income in the

9_{Calculations based on data by Oudijk et al. (2010).}

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Netherlands.11_{Hilversum as the largest municipality however, like many other cities, has more} people on benefit than the national average.12_{Divergence from the rich stereotype of the area can} also be seen in data from the national statistical office on distribution of income in the Hilversum. Instead of a majority of inhabitants finding themselves in the last groups of the ten equally proportioned income groups, distribution among the groups is more or less equal here.13

The Gooi and Vecht area, and thus Hilversum, is situated in the Randstad, a conurbation of the four largest Dutch cities and the surrounding areas. In 1020, it had a population of slightly more than 245.000. A fairly large part of this population is aging, with a large excess mortality. There are relatively few young adults and a little more elderly than the Dutch average (Provincie Noord-Holland 2014).

Figure 1. The Gooi and Vecht area in the Netherlands and its twelve provinces. Adaptation of http://nl.wikipedia.org/wiki/Bestand:NederlandseProvinciesLarge.png accessed 27-11-2014 and

http://www.vsvverkenner.nl/archief/english/regions/20/gooi-en-vechtstreek accessed 27-11-2015 11 http://www.cbs.nl/nl-NL/menu/themas/inkomen-bestedingen/publicaties/artikelen/archief/2010/2010-3244-wm.htm accessed 27-10-2014. 12_{http://www.cbs.nl/nl-NL/menu/themas/arbeid-sociale-zekerheid/cijfers/extra/personen-uitkering.htm} accessed 18-12-2014

13_{Distribution of income of all households with income per region: Hilversum.}

http://statline.cbs.nl/Statweb/publication/?VW=T&DM=SLNL&PA=80592NED&D1=a&D2=a&D3=286&D4=l&H D=141219-1344&HDR=G3%2cT&STB=G2%2cG1 accessed 19-12-2014.

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Figure 2. Map of the current administrative division of the Gooi and Vecht region. http://www.noord-holland.nl/web/bestuur/Gemeenten-1/Bestuurskracht/Regio-Gooi-en-Vechtstreek.htm 27-11-2014

The province of North-Holland has the second-most highest number of informal caregivers of the twelve Dutch provinces. According to a 2008 survey census, the number was 569.000, with 184.000 people providing care for more than eight hours a week and more than three months. Strongly urbanized municipalities count the most informal caregivers, of which the Gooi and Vecht area has five - out of its nine municipalities (Oudijk et al. 2010, appendix). According to demographic data on the area, 80% of the inhabitants live in an ‘urban center’ (Provincie Noord-Holland 2014). In this light, it is also good to note that by 2025, a quarter of the area’s population will be 65 years or older, and most informal caregivers take care of their parents (in law). The Noord-Holland Demographic Report furthermore recommends an expansion of care facilities on the basis of the growth of the elderly part of the population with a demand for care (Provincie Noord-Holland 2014).

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Figure 3. Population composition Gooi and Vecht area compared to the Netherlands, 2010. The blue bars represent the male part of the population, pink stands for female. The outlines represent the Dutch average

amounts, the non-delineated bars stand for the Gooid and Vecht amounts. Source: Noord-Holland Demographic Development Report.

http://www.noord-holland.nl/web/Actueel/Dossiers/Dossier/Demografie-1.htm 27-11-2014

Figure 4. Number of people that provides long and/or intensive help and amount of heavily or overloaded

mantelzorgers in 2001 and 2008 (in absolute numbers x 1000). Source: SCP (Mantelzorg 2001); CBS (ih’08) SCP-adaptation. http://www.scp.nl/Publicaties/Alle_publicaties/Publicaties_2010/Mantelzorg_uit_de_doeken

accessed 27-11-2014.

Moreover, Oudijk et al. (2010) have found that most informal caregivers fall within the 45-54 age category, with a significant rise to almost the same amount in the 55-64 category. 71% of informal caregivers has a paid job, working one hour a week or more. This is divided into 80% for men, and 66% for women. Most people (40%) provide informal care for their parents (in law), the other categories of partner, (step- or foster) child, other family member, and friends, acquaintances, neighbors and colleagues, have a more or less equal spread.

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1.4 Methods

The data collected for this thesis include:

• Interviews: 18 real-life, 3 e-mail, and a series of mini video-interviews made by Ernst • Approximately 120 pages of field notes

• 10 (grey) policy documents

All informal caregivers, except for those who explicitly did not wish to remain anonymous, were given fictional names for the purpose of anonymity.

Semi-structured interviewing and participant observation

The main research method utilized for the fieldwork of this thesis, was semi-structured interviewing of informal dementia caregivers. Common anthropological knowledge includes that the methods which the researcher choses to answer his question with, depend on the type of question he is asking. Although participant observation was definitely part of my activities in the field too, interviewing revealed itself to be most important because I felt letting informal caregivers give testimony of their experience, was the best way of getting an understanding of this experience. While I for example participated in the workshops some of my interlocutors were attending too, I found that during the interviews in my interlocutor’s living rooms, their experience became clearer to me, when their expression would be less molded by the language employed in the workshops. Participation in the workshops served mainly as a triangulation method. Here I could check if I saw discrepancies between the workshop space, and what people were telling me in often a one-on-one setting.

During workshops, I also made detailed expressions of how actors were involved with objects, for instance. In the end, not much of these more tangible accounts made it into this thesis, because issues that were at the core of this research often were not often solidified in my interlocutors’ surroundings. Yes, one of their mailboxes could become the representation of the threat to their independence that care for the care receiver imposed, because the care receiver was unable to open the mailbox any longer. However, this type of sensory or symbolic analysis, that one sees more often in for example ethnographies of food or clothing, did not fit the kind of answer I envisioned myself to be giving to the municipality of Hilversum in the end. Would policy makers and implementators not be more helped with a presentation of the constructedness of the self-control norm, than by the meaning of a mailbox to one particular interlocutor? Thus, interviewing suited the type of

knowledge that I wanted to generate. On the other hand, part of my client’s question was about informal caregiver experience of the workshops. I will therefore delve into this a little more deeply in the report I will provide the municipality with; in the end, so many issues arose from my

interpretation of the data I gathered, and called for my attention, that I found I had little room left to really delve into workshops specifics within this thesis.

I interviewed most of my interlocutors at their homes, with the interviews typically lasting from one to two hours. I interviewed on the basis of an interview guide from which I frequently deviated, or of which I sometimes mixed up the question order or added questions as I saw fit during the interview. On the basis of previous interviews, I made slight adjustments or additions to this guide during fieldwork. This style of semi-structured interviewing allowed me to keep track of the conversation: were we going in the ‘right’ direction, did I need to steer the interlocutor back to the subject, or was

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the conversation derailing into an unexpected but relevant direction? I looked at my interviews as interlocutors trying to deal with some form of anxiety, and having the opportunity to speak to someone who would get word out to policy makers. Anxieties I paid attention to were, for instance, possible feelings of shame or inadequacy, and things that could be too painful to express, such as a need for more support by one’s children.

Furthermore, time management necessitated the use of e-mail interviewing. Data from this type of interviewing rarely made it into this thesis, however, since I found that e-mail interview answers were often not as elaborate or profound as real-life interviews, during which I was able to probe to come to the core more easily. In addition, the extensive use of e-mail interviewing would have necessitated a whole new methodological strategy, which I found to be too time-consuming in the small amount of time that was available anyway.

Next to participant observation at the workshops, I employed a similar technique at the Alzheimer Cafés I visited. Alzheimer Cafés are a bimonthly informal meeting place featuring interviews and lectures about relevant topics for people with dementia, their loved ones, care professionals, and those interested. I visited these to find out what occupied informal dementia caregivers: how did they respond to the lectures, what questions did they ask, what comments did they make? I also made use of these meetings to come into contact with interlocutors who did not participate in the workshops.

Studying up and document analysis

I have conducted my research partly in a municipal government setting, aiming to assess municipal discourses on health care and the way this affects (new) policy and the accessibility of support for informal caregivers. This meant that I was engaging in the enterprise of studying up, which is a relatively new approach within anthropology that studies organizations that have often perfected the art of ‘’bureaucratic impenetrability” (Hancock in Sridhar 2008: 92). Literature on organization anthropology provided useful tools for studying up-fieldwork, as there were considerable parallels between organization anthropology specific challenges and my own research. Devi Sridhar (2008), for example, who has researched the World Bank’s nutrition politics and policy in Tamil Nadu, elaborates on these challenges in her book on organization anthropology. She quickly realized that researching a big institution made up of elusive layers of secretive staff required a different

fieldwork approach than the traditional anthropological method of participant observation.

Similarly, within Hilversum city hall, it was rather impossible to do participant observation, as I could directly partake in the professional activities of municipality officials. Therefore, it was necessary to rely on other methods such as interviewing and (grey) document14_{analysis. Also, during fieldwork it} became clear that some form of participant observation was still possible. Hanging around an official’s desk and asking questions all day was impossible, but in fact I did attend some meetings in which informal caregiver support was discussed. I furthermore had access to the city hall employee flex-office, so during fieldwork I made sure to be there once a week more or less, typing out transcriptions, observing employee interactions that would sometimes provide me with data to ‘decipher’ the ‘municipal mind-set,’ and being included every now and then in a constant stream of work floor jokes.

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Sridhar furthermore refers to Mary Douglas, who has written about organization solidarity, which was helpful in making sense of the tension between individual and organization, and the extent to which organization –or in this case municipality- ideology can be directly extrapolated to individual staff members. The theory of the shared symbolic universe of staff members which results in group solidarity and channels employee’s perceptions (Douglas in Sridhar 2008: 98) was useful in my own research to conceptualize relations within the municipality. By viewing these relations and

employee’s words and acts through this lens, officials do not remain individuals solely motivated by internal psychological processes, neither do they become powerless puppets of an inescapable state discourse on care.

Furthermore, Shore & Wright’s studying up approach appeared valuable for the interpretation of care policy, as it “examines policy as ethnographic data and examines how policy

discourses work to control political agendas as well as the complex ways in which policies construct their subjects as objects of power” (Shore & Wright in Sridhar 2008: 101). These were all useful angles from which to look into municipal discourses on care, and how the politics of which it is part shape policies.

Language and documentation

“Although Dutch is my mother tongue, and therefore it seems there should be no trouble with language during my research, I am currently in the process of acquiring bureaucratic and legislation language. This started in the pre-fieldwork phase when I became acquainted with different laws such

as Wlz and AWBZ, but the more I read up on municipal and governmental care policy, the more abbreviations come flying at me, and the more assumed-to-be-understood-terms like hulpvraag and

randvoorwaarden I begin to gain an understanding (or at least a guess of what they might mean) of.”

Field notes, 04-03-2015

Next to the translation from for example bureaucratic language into anthropological language, this issue contains two other different languages as well. Because all of my interlocutors spoke Dutch, I had to translate all their quotes into English. As nuances and meanings tend to be altered or get lost by translation, and thus to ensure maximum accountability and transparency, I provided all citations with their original Dutch counterpart either next to them, or in a footnote below.

During fieldwork and after, I organized data, transcribed, coded, and analyzed with the help of qualitative data analysis software ATLAS.ti. Organizing my field notes, interviews, grey documents, etc. this way had advantages and disadvantages. Advantages included being able to easily compare codes and have all data collected in one place where I could easily find back what I needed.

Disadvantages included limited access to software due to university IT issues, and

over-enthusiastically making use of ATLAS’s features by creating too many codes and including more documents than I had the time to analyze.

Places and people

To provide an overview, the most important places that I spent time in for my research, consisted of: • Hilversum city hall: Team Society’s flex-office

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Figure 5. Hilversum ‘city office’: the building containing the flex-offices on the upper floors. In the background the old city hall can be seen. http://www.hevo.nl/nl/projecten/projecten.aspx?itemID=27 accessed

02-07-2015 • People’s homes

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Figure 6. Kerkelanden, one of Hilversum’s aging neighborhoods where some of my interlocutors lived.

http://fotovanhilversum.punt.nl/content/2009/02/kolossale-flatgebouwen-kunst-in-kerkelanden accessed 02-07-2015

• Workshop spaces: two nursing homes and one district services centre

Figure 7. Disctrict services centre Lopes Dias in North-Hilversum, where evening sessions of the spring 2015 workshops took place. https://www.jrs.nl/projects/details/44 accessed 02-07-2015

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Figure 8. Wijkcentrum De Koepel, a neighborhood meeting centre in Kerkelanden where the Alzheimer Cafés were held.http://www.gooieneemlander.nl/regionaal/gooivechtstreek/article19956223.ece accessed

02-07-2015

The most important people I interacted with in the field, are: • My supervisor at the municipality: Esther Sarphatie • Other relevant municipality employees

• Workshop trainers: Esther Buning and Annemarie Bolder, later accompanied by Josephine Lambregts

• Workshop participants

• Informal dementia caregivers who are not participating in the workshops: mainly Alzheimer Café visitors

• Care receivers

1.5 Reflection

“I spent most of January freaking out over how little I knew of government and (health) care structures. Finally, at the end of January, I set up an ATLAS.ti project and felt that I had made some

progress in understanding what I was dealing with. What was left to do now was look at the data and preliminary analysis I had so far, and see how I should continue. I felt that I needed to figure out

more structure stuff first before I could understand what my interlocutors were dealing with.” Field notes 02-03-2015

During fieldwork, time was constantly my enemy. There were multiple factors contributing to this, including an initially too extensive research plan, and late access. Due to bureaucratic errors, I only gained access to the flex-office when I was already more than two months into fieldwork. 2015 workshop sessions only started in March, too. These influences considerably slowed down the research process.

While interviewing and observing, I had some ethical concerns about coming to write down and record informal caregivers’ misery, and then leaving again. I was afraid of ‘using’ my interlocutors for the personal gain of writing a thesis. In part, I cannot deny that I was absorbing their hardships to pour it into a Word document that would advance my education. Yet I also maintained the hope that through writing a report for the municipality on the basis of this thesis, I would be able to make

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some sort of impact at the municipality, where my work would be read by at the very least my client supervisor.

Furthermore, there were certain ways in which I was alike to my informants, and similarly, there were ways in which I was not alike. While all of them informing my position in the field, I will

mention a few of them here. Firstly, I conducted my fieldwork ‘at home,’ my setting being part of the conurbation of which the city I live(d) in is part as well. This means that I shared some cultural capital with my informants, who I were almost all white (born) Dutch, both having grown up in the

Netherlands as whites, and being socialized in similar manners through the media and institutions like the medical and education system. There was be cultural knowledge that we shared, like knowing what are polite things to say and do, and what things are not. Simultaneously, the category ‘Dutch’ is a rather large one, encompassing all sorts of subcategories which me and my informants were bound to fit into differently. For example, while I am originally from the south of the

Netherlands, a historically quite subordinate area in relation to the wealthy and culturally dominant north, my research population inhabited the non-southern Gooi and Vecht area, often considered to be the richest area in the country.

Another aspect of my identity that did not match that my informants, was age. While I am in my early twenties, and was facing problems such as study loan cutbacks and ensuring affordable living space amidst severe (student) housing shortage, many of my interlocutors were part of the baby-boom generation that is currently occupied with retirement deferment and the anxiety of wishing to come of age in a pleasant manner while the aging population is weighing heavily on a decreasing workforce. It was my concern that some of my informants would not take me seriously, either because I could not understand their age-related struggles, or could not sympathize with them. One of the difficulties of this research was having an applied client, which made for a rather fixed research question. Although the exact question changed many times during the course of the

research process, there was relatively little room to change the whole setup according to some other of my academic interests that I encountered in the field.

My supervisor at the municipality is a municipal employee in the social policy implementation domain, who had formulated the initial question for this research in collaboration with founding workshop trainer Ernst. Perhaps because she has completed a degree in anthropology as well, communication with my supervisor in the field has been easy, and cooperation good. As a municipality official, I included her in my research, but I also gained access to others within the municipality through her. Since in a certain way, my supervisor was my employer, there was a certain ‘professional’ aspect to our relationship. At the same time, however, I was a research intern who was still studying in university, which may have made for unbalanced power within our

relationship again.

During my fieldwork I have presented myself as student conducting applied research for the municipality. As I have ‘studied up’ in part, I expected there to be a power difference because of which I would be somewhat subordinate. I had this expectation since I would be seeking information and access of which others within the municipality had the power to deny me, and that would otherwise be hard to obtain. At the same time, we were all working for the same ‘employer,’ which I expected to perhaps level the difference a little. Indeed, the latter expectation held more true, and I never felt a great power difference between me and the people in the city office.

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19

The founding workshop trainer, who formulated the initial research question in cooperation with the municipality supervisor, has a background in psychology. I presumed the difference in ‘language’ that may result from our different academic backgrounds to create a challenge to translate anthropological insights and methods to him. As a researcher probing his workshop, I held some power of judgment over him. But simultaneously, his expertise of and closeness to the subject (having lost his wife to Alzheimer’s disease), and resulting animation with which he was involved in the workshops, returned to him the power to judge me as a researcher as well. Indeed, during my fieldwork I felt constantly judged, and whether this was simply due to an added mismatch of our personalities, or if there was another explanation, this made me extremely self-conscious during participant observation at the workshop sessions, and limited my interaction with him as well as with participants.

I ‘wasted’ part of the start-up process by creating a leaflet in which I introduced myself and my research in simple terms, and in which I asked people to contact me if they are an informal dementia caregiver, or know someone who is. I intended to spread this leaflet in areas where many elderly lived, so as to gain access to people who do not participate in the workshops too. As one of my interlocutors remarked, many elderly do not use the internet, so I also wanted to mostly rely on offline communication in the search for interlocutors. An additional option I was contemplating was to ask for coverage of my research in the Gooi & Eemlander, a local newspaper. I furthermore wanted to gain access through the case managers’ clients, and kept thinking of other ways to gain more interlocutors. All these strategies and accompanying half-carried out implementations,

however, never reached their full form. The simple fact was that I was already so busy with research activities which sprung forth from my ‘base plan,’ that I could not find the time to pursue these other strategies. Moreover, during a large part of my fieldwork, I was plagued by the fear of never having (relevant) enough data, and so was convinced that I always needed more. As my research progressed, however, I began to question this insecurity, and realize that as the analysis of this thesis is based on a qualitative approach, I had no need of hundreds of interviews.

Lastly, I have thought long and hard about how to denominate the people informal caregivers cared for. Initially, I considered the term ‘loved one,’ but I almost immediately discarded this term because of the implicit assumption that the person informal caregivers care for is always a loved one. I considered it very possible that not all caregivers have love as a main motivation to perform caring tasks; perhaps the relationship was troubled, but someone still performed these tasks out of a felt obligation that holding a certain position in kinship formations brings along. I then thought a solution could be to employ an illness or disability related term. This did not satisfy either, however, because it felt like equating a person to his illness or disability did not convey the message that these people are more than ‘just’ people with dementia, and did not promote social and political recognition of them. After tossing away a few more concepts in my mental recycle bin, I came to the conclusion that if someone who performs caring acts is a caregiver, the person receiving this care must simply be a care receiver. Even though, as I have stated before, people can give and receive care at the same time, this definition is based upon the assumption that there is no total balance, and that the person with dementia is the one who receives more care. In practice, it was easy to avoid the term patient since I would just call the care receivers by their name to the caregivers, or simply refer to them by for example ‘your father’ or ‘your wife’.

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1 Shifting relationships

Informal care on a micro-level

Rapid change

No human relationship is static. One of the principles of present-day anthropology, is the

understanding of human connection as situational and dynamic. This way of thinking about identity and its relation to others was already present in for example the classic work of Evans-Pritchard on the Nuer of South-Sudan (Evans-Pritchard 1940). However, compared to the rather dramatic shift that takes place in the Hilversum informal dementia caregiver – care receiver relationship,

relationships unaffected by dementia may suddenly seem quite fixed. As an elderly lady who took part in the workshops proclaimed more than once: “ik heb een hele andere man gekregen,” meaning “I’ve gotten a completely different husband.” Not only is there a perceived change in personality in the person suffering from dementia, the relationship informal caregivers had with the care receivers has often also altered relatively radically.

Lies, informal dementia caregiver for her husband. Z stands for me, the interviewer.

There are different ways in which the relationship between caregiver and receiver can change, of course also depending on the way things were ‘before.’ One of the ways in which many caregivers, especially those who took care of their partners, saw their relationship change, is the shift from conversation partners to one-sided care. Where the partner usually once was the person to discuss all kinds of things with, he or she gradually loses the ability to fulfill this role. The partner ceases to be the confidant to vent to, to talk with about what’s really going on, or to consciously share experiences with.

L Ik vind het alleen maar zielig. Als

je ziet wat een man het geweest is en dan ’s morgens eh nou dan moet ik zeggen: “o je hebt je slaapsokken nog aan,” of eh “hoe moe’k dat dan

doen?” Nou en en en dat, dat…

Z Ja, het maakt u verdrietig om te

zien hoe hij –

L Ja, het is een verdrietige ziekte. Z Ja, ik snap het. En u zegt: “geen

weerwoord meer,” kunt u daar wat meer over zeggen, wat bedoelt u

daarmee?

L Nou je hebt geen – kijk, als ik nou

met jou praat, dan zeg je: “nee, dat is niet zo.” Dat was – maar – wij konden over politiek praten. Dat

kan niet meer.

L I only just think it’s sad. When you

see what a man he has been and then in the morning eh well then I have to say: “oh you’re still wearing

your night socks,” or eh “how do I do this?” Well and and and that,

that…

Z Yes, it makes you sad to see how

he -

L Yes, it’s a sad disease. Z Yes, I understand. And you say:

“no rebuttal anymore,” can you say a bit more about that, what do you

mean by this?

L Well you don’t have – look,when I

talk to you now, you say: “no, that’s not right.” It used to – but – we could talk about politics. That’s not

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21

Lies

Lies is losing her companion; he still comes with her to the museum she so wished to visit, but the same evening, he has no recollection of having been there. Even though her husband was with her, it becomes a lonely experience for Lies when she cannot share it with him. This kind of loss often becomes even more painful when friends start to die, and chances to meet likeminded people, or old friends who are still alive, are slim. Even seeing family can become a hassle. Lies’ family goes to a bungalow every year, with all grandparents, children and grandchildren present. Lies’ husband Stefan however, can hardly bear to be away from home nowadays, in a restless environment. The family wants to try one more time, in another way. Their plan is to have Lies and Stefan stay in a hotel close to the bungalow, so that everyone can eat together and Stefan can withdraw himself at night. “That’s what we want to try once more now,” says Lies. “And if that doesn’t work, it’s over.” Contact outside of the family is also difficult for Lies.

Lies

Although children who take care of their parents often have others (as well) to connect with and share thoughts and experiences with, for them a similar shift takes place, too. Esther, a woman with two teenage children and a husband, lives close to her mother, who was diagnosed with dementia a year ago, and her father, who is beginning to show signs of forgetfulness too. She used to discuss what was going on in her life with her parents, but now she shields them off from her worries.

L Wij doen veel samen, we hebben

altijd alles samen gedaan. […] Woensdag zijn we nog naar Utrecht

geweest, ik wilde zo graag naar dat eh, Universiteitsmuseum. […] Nou, dan gaat ‘ie toch mee en dat vindt ‘ie ook leuk nog en, maar ik hoef

niet ’s avonds te zeggen: “joh Stefan, dat was een leuk eh, onderwerp,” dan weet ‘ie het niet. Dus en dat dat dat is het ergste van

eh, van die Alzheimer.

L We do a lot together, we have

always done everything togetger. [...] Wednesday we went to Utrecht,

I really wanted to go to the eh, University Museum. [...] Well, he still goes along and he still thinks it's

nice and, but I don't have to say at night: "hey Stefan, that was a nice eh, subject," then he doesn't know.

So and that that that is the worst thing about eh, about this

Alzheimer's.

L Nou ik zou wel eens iemand willen

hebben, maar ja ik wil, maar ja ik ben wat dat betreft ook een heel individueel mens, ik heb niet zo zin

om eh om bij vrouwen die de hele dag over de was praten. Dus dat dat, ik zou wel eens iemand willen hebben dat dat ‘t met Stefan klikt,

[...] en eh, dat je zoiets eh van gelijkgestemden maar ja dat heb je

haast niet. Dat zou ik w dat zou ik wel eens willen.

L Well I would like to have, but yes I

want, but yes in that respect I'm also a very individual person, I don't

really feel like eh to with women who talk about laundry the entire

day. So that that, I would like to have someone that that it clicks with Stefan, [...] something like that

eh of likeminded people but yes you hardly have that. I would like t I

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Esther, talking about her mother

Thus, Esther is experiencing a reversal within the parent-child relationship. Also, where relationships were more or less equal, an often unwanted hierarchy sneaks in when the caregiver starts to make decisions for the care receiver, or cannot take her seriously anymore.

Willy, caregiver for her mother

This happens too when the caregiver feels himself forced to tell a white lie. Simon, an eighty-five year old man whose wife is now living in a nursing home, says:

E Nou ik merk nu wel dat als er

problemen zijn – ik heb met mijn dochter een medisch circuitje

achter de rug de afgelopen maanden […] – dat vertel ik niet. Ik

vertel haar wel over, nouja, dat de tuin er mooi bij staat, […] maar niet

dat ik problemen op mijn werk heb of - anders gaat ze zich misschien zorgen maken, en ze kan me toch niet meer ondersteunen. Dat kan je

ook niet meer van ze verwachten. Dus je merkt dat de rollen zich om

gaan draaien.

E Well I do notice now that when

there are problems - there was a medical issue with my daughter the

previous months [...] - I don't tell this. I tell her about, well, that the

garden is doing well, [...] but not about my problems at work or - otherwise she might get worried, and she can't support me anymore

anyway. You can't expect that of them anymore either. So you notice

the roles are reversing.

W Het lastige voor ons vind ik dan

voor mij ook, in de communicatie van ehm, zij denkt dat ze alles gewoon goed op de rij heeft. En ik weet dat daar geen moér van klopt, en ja 't moment dat je gewoon gaat besluiten om daar maar niet meer op te reageren. Dat komt een kaar dat moment, dat dat heb ik dus nu.

Dat is best wel raar. Zo ga je niet mensen om. Maar, ja. Het beste is maar gewoon om het haar te laten

vertellen.

W The hard thing for us is then also

for me, in the communication of ehm, she thinks that she has it all together. And I know that absolutly everything's wrong about that, and yeah the moment that you're just going to decide to not react to this anymore. That moment will come, that that's where I'm at now. That's pretty weird. You don't treat people that way. But, well. It's best to just

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Simon

These white lies can cause internal conflict with caregivers. Okke had trouble being with his wife around friends, because she would say things that were clearly not true. If he and his friends would go along with it, Okke said, he would feel like they would exclude her from the truth by playing along, as if they were making fun of her. He was having a hard time finding the right way to behave in this situation. Problems like this are not easily tackled, as caregivers found their situation

constantly changing. If one would apply van Gennep’s (1960) and Turner’s (1967) theories of liminality to the dementia process for the informal caregiver, the first two phases can be identified:

1. Pre-liminal phase: the caregiver-to-be begins to notice the first signs of forgetfulness and/or disorientation in the care receiver-to-be. Often there is doubt and denial from both parties about the latter’s condition. The metaphorical death (van Gennep 1960) comes when it becomes clear to the caregiver-to-be that there really is something wrong, and that she has to leave behind the old status quo of relative health of the care receiver-to-be.

2. Liminal phase: diagnosis by the caregiver-to-be or by a medical professional, introduction to the formal support system, and often a search for information on how to deal with

(someone with) the disease.

As for the post-liminal phase, it may be that for many caregivers, this phase is never actually fully reached. Re-incorporation into society (van Gennep 1960) is hard, since circumstances keep on changing, and there is hardly any opportunity to establish oneself comfortably in a new state of being, as people do too after having gone through a moral breakdown (Zigon 2007). Also, as Badiou (2003) argues, people may try to return to the way it was before. In Badiou’s argument I recognize the caregiver’s denial of the situation, phases of denial which many testified to have gone through.

S Het eh, heeft geen zin om tegen

te spreken. Je kan beter meegaan, uh, ‘k heb ook geleerd: een leugentje om bestwil, dat mag. Dat

heb ik ook moeilijk gevonden. Eh, om mijn vrouw dingen te vertellen

die eígenlijk niet waar waren, niet kloppen. Ehm, eh als ik eh, gisteren

was ik dus in Breda bij mijn oudste dochter en zij zegt: “de groeten aan

mama.” Nou, dan zeg ik tegen mijn vrouw: “ik heb Joke aan de telefoon

gehad.” Ik moet niet zeggen dat ik bij Joke ben geweest, want dan

wordt ze boos dat ze niet mee mocht. Dus: “ik heb Joke aan de

telefoon gehad, je krijgt de hartelijke groeten, ’t gaat goed met Joke, ze heeft een lezing-” dat kan ik d’r wel vertellen, ‘k zeg niet dat ik

erbij ben geweest, maar zeg: “ze heeft een lezing gehouden over een

onderwerp,” dat vindt ze wel leuk om te horen, maar ik moet dus, ja toch, gewoon simpelweg: “ze heeft

me opgebeld.”

S It eh, is no use to argue. It's better

to go along, uh, I've also learned: a white lie, that's allowed. I have found this difficult too. Eh, to tell my wife tings that actually weren't

true, not right. Ehm, eh if I eh, so yesterday I was in Breda at my eldest daughter's and she says: "say

hello to Mum." Well, then I say to my wife: "I had Joke on the phone."

I mustn't say I was at Joke's, because then she'll get mad that she wasn't allowed to come along.

So: "I had Joke on the phone, she held a lecture," - I can tell her that, I

don't tell her I was there, but say: "she held a lecture about a subject,"

she does like to hear that, but so I have to, yeah I do, just simply: "she

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So, as the person with dementia progresses in her illness, her own memory, truth, lifeworld and behavior changes from day to day, and she faces the caregiver with the challenge to continuously adapt to the new situation. What might work for Okke on one day with regard to his wife and social situations, might backfire the other day. Thus, the strongly fluctuating character of the shifting relationships makes for an uneasy liminality in which many informal dementia caregivers find themselves.

The struggle for autonomy

“The dementia process slowly crept in. And in the beginning also denied by us. And definitely by herself.”15

Jolijn, a fifty-six-year-old informal caregiver for her mother

A common reaction to the anxiety that stems from the disorientation and forgetfulness, is denial. Care receivers try to cover up that they can’t find the bathroom anymore16_{, or that they need care at} all17_.

Henny, an informal caregiver taking care of Han, talking about the daytime activity centre Han visits three times a week.

15_{Text from an e-mail interview in Dutch: “}_{Het dementie proces is er langzaam ingeslopen. En in t begin ook wel}

ontkend door ons. En zeker door haar zelf.”

16_{Says Neeltje, an elderly lady who takes care of her husband.} 17_{Says Simon.}

H Drie keer in de week is het voor

mij gewoon stress, van hoe moet ik d’r nu weer een beetje in ’n redelijk

leuke stemming wegkrijgen he. Nouja dat dat lukt dus negen van de tien keer ook niet maar dan neem ik d’r mee naar beneden en dan komt

het busje voorrijden, en dan is er niks meer aan de hand. Want een ander mag dat natuurlijk niet weten he. Dus he dat heb ze altijd heel erg gehad, ze is heel erg uh je hangt de vuile was niet buiten. Ik ben heel anders, ik donder alles over tafel, maar zij dus helemaal niet. Dus ze,

ja, nu heb ze dat niet meer maar vroeger zei ze ook altijd: [sarcastisch] ‘nou ken je lekker over

me praten’ weet je wel weet je dat dat vindt ze dus heel erg.

H Three times a week it’s just stress

for me, like how do I get her out now in a fairly good mood again huh. Well this this also fails nine out

of ten times but then I take her downstairs and then the van comes,

and then nothing’s wrong anymore. Because another person can’t know of course. So huh she has always

has this a lot, she’s very uh you don’t tell other people what’s going

wrong. I’m very different, I spill everything, but she doesn’t at all. So

she, yeah, now she’s not like that anymore but she also always used to say: [sarcastically] ‘well you can go and have a nice chat about me’ you know so she finds that really

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Han does not want anyone to know about her decreasing mental capabilities, and is still able to cover up a lot for other people. This makes Henny the only person who knows what is ‘really’ going on, something which makes for a lonely position.

Henny

Henny could not clean the house while Han was at home, because then Han would scold her for doing so. Henny thinks Han does not want her to clean, because this would mean that she has to accept that she cannot do so herself anymore. This is why Henny primarily cleans when Han is at the daytime activity centre, a time when she should be having much needed time for herself. She knows that when she proposes to Han to hire a cleaner or to ask a friend to keep her company while Henny is away, Han would object because she does not accept the situation as it is. While Han is struggling to protect her own independence, in respecting this struggle, Henny’s own independence becomes threatened. In Hilversum, I saw many informal caregivers occupied with avoiding explicit

dependency (Schmidt 2014: 28) in similar ways, a dependency which becomes dangerously clear when care receivers cannot do the things they used to do anymore. “Explicit dependency is the main threat to experiencing autonomy in situations of long-term care” (ibid.).

Avoiding taking away autonomy from care receivers was sometimes referred to by caregivers as ‘iemand in zijn waarde laten,’which literally means to leave someone in their worth. Although there is no direct translation, the phrase can be interpreted as ‘to respect someone.’ The worth, or value, that has to be left intact here, is autonomy. For example, Esther takes care of the administration tasks of her parents, together with her siblings. However, when a letter arrives at her parents’ place, they still open it. “And rightly so,” says Esther, “because the letters are theirs. But they start to worry about things that are nothing in our eyes.” Letters, bills, and other documents remain at her parent’s

H En er zijn ook zat mensen die

zeggen van, valt wel mee. Want ze is verbaal is ze gigantisch sterk en ze

heeft, ja, Amsterdamse humor heeft ze. En dat zit er nog steeds in,

en af en toe komt ze ook uit de hoek nou ja daar sta ik zelf helemaal

van ‘he, zeg jij dat?’ Weet je dus ’n buitenstaander die dus nouja zeg vijf minuten met d’r praat, die heeft

dat niet, nee die merkt dat niet. Want ja, het klopt allemaal niet, maarja dat weten zij niet, weet je. Dus, en dat is ook wel moeilijk want

ja dan kijken ze jou beetje aan van ja god eh van drie keer per week eh

doet ze d’r weg weet je wel. Op die toer een beetje. Maar eh nee, ze

kan het niet accepteren.

H And there are also a lot of people

who say like, it’s not that bad. Because she is verbally she is enormously strong and she has, yeah, she has an Amsterdam sense of humour. And she’s still got that,

and sometimes she also says something witty well yeah I myself am totally like: ‘huh, are you saying this?’ You know so an outsider who talks with her well say five minutes,

isn’t like that, no that person doesn’t notice. Because yeah, it’s all not right, but yeah they don’t know, you know. So, and that’s also quite hard because yeah then they look at

you a bit like yeah god eh like she gets rid of her three times a week you know. A bit like that. But eh no,

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26

place, so they can inspect them if desired. Also, Esther accompanies her mother to the GP, but is not in charge there: “you have to leave them in their worth.”18

Lies also thinks she has to leave Stefan in his worth. When he forgets how to say what he means, she says: “ah well, you’ll remember soon enough.”19

Lies

Care receivers as well as caregivers attempt to “work the interactions around care practices” (Schmidt 2014: 34), so that dependency becomes less explicit. Esther leaves the administration documents at her parents’ place to give them a sense of autonomy, and Lies tries not to show impatience or frustration to Stefan’s lack of communication capability. However, by avoiding painful explicit dependency, as shown by Henny’s example, the caregiver’s own autonomy is threatened when a lot of effort has to be taken to secure the care receiver’s sense of independence. It can be very hard for informal caregivers to ‘defend’ their own autonomy, as they often have an intimate relationship with the care receiver, and suffer from seeing the other’s autonomy, and thus worth, decline. The formal caregiver arguably has less difficulty with the appearance of explicit dependency, as she has a less intimate relationship with the care receiver. Professional caregivers can of course be trained to respect care receiver’s sense of autonomy, but will be less inclined to go beyond their own limits and give in too much of their own autonomy, since it remains a job. Or, as an informal caregiver workshop participant put it: “when you take care of someone professionally, you leave again. They can call you twenty times, but at some point you put down the phone.”20

The caregiver, then, often tries to avoid situations of explicit dependency. However, sometimes circumstances make it practically almost impossible to avoid going beyond the caregiver’s own limits in terms of autonomy. This is frequently the case when the caregiver is the partner of the care receiver, and they live together. Neeltje’s husband was going to a ‘care farm’ as a daytime activity, until he was involved in a quarrel and was advised to stay at home if he did not want to take

medicines to counter aggression. Neeltje did not want her husband to take these medicines, because according to her, he would become even more of a zombie if he would do so. For a moment, it seemed as if her husband would be staying home every day.

18_{Original transcripts in Dutch: “En terecht, want het zijn hun brieven. Maar dan maken ze zich druk om wat in} onze ogen niks is.” “Je moet ze wel in hun waarde laten.”

19_{Original transcript in Dutch: “ah joh, direct schiet het je wel te binnen.”}

20_{Original transcript in Dutch: “als je iemand professioneel verzorgt, ga je weer weg. Ze kunnen je twintig keer} bellen, maar op een gegeven moment leg je de hoorn erop.”

L Nou het schiet hem natuurlijk nooit

te binnen, maar ik bedoel maar s- zo moet je, of zo leven wij. Zo leef ik.

L Well of course he never

remembers, but I just mean t- that's how you have to, or that's how we

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27

Neeltje

Lies, who lives with her husband too, finds it difficult to claim her own space as well.

Lies

Together alone

You hear my words, but you don’t understand me you look at me, but you don’t see me

your lips are shaking, as if you want to say something say: I love you

But a silence remains around you

You’re slipping away from me, further and further away from me Hold me close, one more time

like only you can, only you could hold me close, because you’re slipping away,

you’re slipping away from me

N En ja dat zeg ik dan heel stoer,

maar ik denk dat dat toch heel, heel

belastend zou zijn geweest. [...] Hij

loopt me constant als een hondje achterna.”

N And yeah I say that very tough, but

I do think that it would have been very, very burdensome. [...] He's constantly tailing me like a little dog.

L Dat vind ik wel eens jammer. Z Wat vindt u jammer? L Nou, dat ik niet alleen boven kan

zitten. Vroeger dan was er niks aan de hand, Stefan die deed wel wat anders, die ging wat anders zitten rommelen, dan kon ik m’n eigen,

m’n eigen ding, dat heb ik niet meer.

[...]

Z Ja, dus u bent eigenlijk dag en

nacht met hem bezig.

L Ja, ja in je gedachten wel. Hè,

want dan zeggen ze: “ja die dag dat ‘ie weg is, dat heb je dus helemaal voor jezelf,” maar ja dan ga, dan ga

ik effe boodschappen doen, dan denk ik dan morgen dan hoeven we dat weer niet te doen, en ehm, ga ‘k de postbus de post halen dat kan

die ook niet meer, hij kan het sleuteltje der niet meer in krijgen.

L Sometimes I regret that. Z What do you regret? L Well, that I can't sit alone upstairs.

Before then there was nothing wrong, Stefan would do something

else, he would busy himself with something else, then I could do my

own, my own thing, I don't have that anymore.

[...]

Z Yeah, so actually you're occupied

with him day and night.

L Yes, yes in my mind I am. Huh,

because then they say: "yeah so the day he's gone, you've got that completely for yourself," but yeah

then I go, then I go do grocery shopping quickly, then I think then tomorrow we don't have to do that

anymore, and ehm, I go to the mailbox to get the mail he can't do

that anymore either, he can't get the key in anymore.

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28

I hear your sounds, but I don’t understand you I search for your eyes, but I don’t find you my lips are shaking, when I want to say to you

I love you But I remain silent

I’m slipping away from you, further and further away from you Hold me close, one more time

like only you can, only you could hold me close, because I’m slipping away,

I’m slipping away from you

Translated lyrics to “Hou me vast”/”Hold me close” by Ernst Buning, the workshop trainer who lost his own wife to dementia.21

The struggle for autonomy by the care receiver, arguably in part cued by this shifting relationship, often results in a threat to the caregiver’s own autonomy. This is part of a struggle that in turn could be viewed as partly responsible for the (already) decreasing occurrence of opportunities of

meaningful contact. Hanneke is an elderly lady who lives together with her husband in a flat in Kerkelanden, a neighborhood where many of Hilversum’s ’65-plussers22_{’ live. When at home}

together, her husband turns on the television, turns up the volume, and turns off his hearing device. As a consequence, they are together, but alone.23_{It is difficult to say why Hanneke’s husband avoids} contact; perhaps he does not do it consciously, or he does so to cover up his own inability to

communicate ‘properly.’ It therefore remains somewhat speculative too if the need for autonomy really is an obstacle to meaningful contact, but the fact remains that many informal caregivers experience loneliness - even if they live together with the care receiver.

Moreover, it is not only contact with the care receiver him- or herself that gets tougher.

Opportunities to have heart-to-heart conversations grow thin, as not only care receivers claim time and energy, but especially in the case of the elderly, friends, family and acquaintances start to fall ill or pass away, and not many are left who understand and/or can handle with the situation the caregiver is in. Often, mutual friends do not know how to behave themselves around the care receiver, and so contact with the caregiver becomes less, too. One of the signs that told Lies something was wrong, was that Stefan began to talk less. Now, if someone comes to visit, he does not offer them anything to drink anymore, but remains seated where he was. Lies notices her family begins to talk less to Stefan, too. Having her grandchildren come over becomes more difficult, because Stefan cannot play games with them anymore, or go walking with them in the woods.24 Henny’s neighbors suddenly started coming over only on days when her partner, Han, would be at the daytime activity centre. She could sense Han felt uneasy around company, too, because she does

21_{http://www.ernstbuning.com/hou-me-vast/}_{accessed 29-06-2015.} 22_{People of and over the age of sixty-five.}

23_{Based on workshop field notes, 10-03-2015.} 24_{Based on interview with Lies, 27-01-2015.}

A state of caring : an ethnography of (in)formal care in a Dutch locality

A State of Caring

An ethnography of (in)formal care in a Dutch locality

Abstract

Plagiarism statement

Table of contents

Table of contents

Introduction

1. Shifting relationships

2. Women and the family

3. Eigen regie

4. Intersections

Conclusion

Introduction

1.1 Long-term care, the changing role of the state, and informal dementia

caregiver experience

1.2 Research questions

1.3 Setting

1.4 Methods

Semi-structured interviewing and participant observation

Studying up and document analysis

Language and documentation

Places and people

1.5 Reflection

1 Shifting relationships

Informal care on a micro-level

Rapid change

The struggle for autonomy

Together alone