Josien de Klerk, Ph.D.

The changing position of older people in families due to HIV/AIDS in Tanzania[1]: growing responsibilities, declining strength and an insecure future.

Core message

As a result of HIV/AIDS older men and women in NorthWest Tanzania bear a growing responsibility within families; caring at length for dying patients or patients on ARV medicine, as well as raising orphaned children. These caregiving tasks increase at a time when physical strength is declining and family care for older men and women is disintegrating as result of migration, declining economic capacity and HIV/AIDS, processes which lead to a growing nuclearization of the family. In this paper I show that there should be more attention for the ageing process of older caregivers and their future security.

Introduction

“If I did not believe in God, I would have thought I was bewitched… So many problems. First my daughter dying, the illness of my father. And now my cows all died…. [silence]. Let’s forget about those who died”.

I am talking to my 66-year old neighbour in Tanzania’s Kagera Region, a slender muscular man, grey hair and a big smile. It is 10 in the morning and he passed my house on his way back from the fields where he has been cultivating since early morning. We have known each other for a while and I know he lost many family members to HIV/AIDS. Recently his daughter died, leaving her youngest son, aged 9 in the care of my neighbour, another burden on his shoulder. His daughter was ill off and on for a year. Her death followed the death of his 3-year-old grandson from AIDS, for whom he was solely responsible as other family members did not want to waste energy and resources to a child that was dying. It was the child of his eldest son who died a year earlier from HIV together with his wife. And these are just deaths within his nuclear family of two wives and sixteen children. Moreover, his elderly father of 93 is paralysed and his mother is almost blind. Both need fulltime care which is provided by Ta Stephen, his brother and an adult granddaughter.  As a clan elder he is responsible for advising clan families who care, financing caregiving for relatives suffering from AIDS and decisions on what to do with orphans. Ta Stephen is a devout Catholic as is his second wife. Each morning at 5 am he prays the Rosary with a group of his friends and neighbours and each Sunday he is in Church. Faith provides support, strength and a sense of explanation. It is his wife Sophia who states how she views the epidemic: “God sent Gharika [Noah’s flood], to punish us for our sins, but now it seems as if he has sent Gharika again”.

I purposely selected the above story out of many. The story shows how there are different definitions of “family”, that transcend the Dutch word for family “gezin” (translated in this article as nuclear family) because there are different definitions of what constitutes “relatives” and hence care obligations. The story also hints at different coping strategies older people employ; ranging from practical solutions such as selling off livestock and taking loans to spiritual explanations; witchcraft and Noah’s flood. In this presentation I examine first how roles of older people within families change as a result of the HIV/AIDS epidemic. I then focus specifically on older people’s roles in caring for patients and orphaned grandchildren and lastly discuss how older people use and can use their family and other resources to draw support from. The insights in the article are based on 1,5 years of anthropological fieldwork in the Kagera Region of Northwest Tanzania, where HIV/AIDS has been present from the early 1980s, following families from 2002 until 2008 as well as a thorough review of literature, providing a broader view on the role of older people in families affected by HIV/AIDS.

Growing responsibilities for older men and women in the era of HIV/AIDS

The growing responsibilities of older men and women in northwest Tanzania are not just related to AIDS. Men in their sixties, as long as they are healthy and strong are often spiders in webs of family obligations; towards spouses, teenage and adult children, grandchildren, but also towards their parents and siblings. Older women have responsibilities towards their children, grandchildren and households, in-laws and also to living parents in their natal homes. Growing responsibilities for older men and women comprise financially, physically and emotionally caring for patients who come home to die and caring for those who remain; orphaned children.

In Northwest Tanzania AIDS and its consequences have been present since the early 1980s and the older men and women[2] of today have grown old with repeated losses of relatives; partners, siblings, children, and grandchildren to AIDS. Debates on the impact of AIDS on older people have often looked at the challenges of the increased caregiving role for older people, (Knodel and Saengtienchai 2005, Knodel et.al 2006, Bohman 2007), and mention stress and material consequences of care giving as causes for the disruptions in broader family caregiving arrangements (Ankrah 1993) The studies which focus directly on AIDS and older people’s bodies show how care giving for dying patients and grandchildren has adverse effects on the health of older people (Dayton and Ainsworth 2001), and mention anxiety for future health and wellbeing as a major concern of older people (Ssengozi 2007).

In these debates, the ability of the ageing body is seen as a central part of well-being; older people attempt to stay active for as long as possible (Bohman 2007). Yet, growing old comes with a natural decline of strength. Bodies age and tire easily, backs start to hurt, limbs become stiffer, eyes and ears deteriorate and some old people experience chronic diseases. As old men and women are confronted with long term care for patients dying from AIDS, with the responsibility of raising grandchildren, strength and physical capacity become a primary asset. Only recently did attention for this essential experience of ageing, the physical body, and how family care arrangements for older people change as a consequence of AIDS rise in  discussions on the impact of AIDS on older people (Ssengozi 2007:341, Seeley et.al 2008:4).

In northwest Tanzania social relations are guided and formed by the kibanja [land] system, the system of landinheritance. The kibanja system regulates gender relations, the lineage, material conditions and agricultural produce (Weiss 1996: 198-201, Setel 1999:30, Kaijage 1989). Through the patriliny rights and obligations are prescribed, in particular who has access to economic assets and land, but also who bears social responsibility in relation to care for widows and orphans. Power in the patriliny is exercised along gender and generational lines (Kaijage 1997:341-2), fathers exercise authority over their sons byendowing them with clanland, whereas the position of an older woman is more uncertain in her marital home, as she can exercise power mainly through her adult sons and daughter-in-law, but has no formal access to clan land. The clan will in many cases decide conflicts around inheritance, or support of widows, and orphans, who belong to the clan. The growing focus on money has, according to older people shifted generational power, the roles of older people are changing, into more responsibility and less authority.

  The role of old men in the extended family is usually one of advise and decisionmaking on clan and inheritance issues. Older women often advise in terms of marital conflicts. It is normal to live with grandchildren, often grandchildren are sent to live with a grandparent for company and assistance in daily chores. The relationship is usually warm and loving, a so-called “joking relationship”, other than the relationship between parents and children in which authority and provision play an important role. In the normal ageing process in the current era of commoditization, urbanisation, migration, older people live and work independently as long as possible, but when they are dependent, move in with their sons and daughter-in-law. Yet family care for older people in Africa is changing due to social transformations, such as labour participation (Shaibu 2000:15), and the increasing incorporation of money in care relations (van der Geest 1997, 2002). This is often described as a growing nuclearization of the family (Ankrah 1993), young adults have trouble to provide for their immediate families and are less focused on the extended family. Though families care and assist eachother, there are heavy demands on economic resources and fostering capacity (Bor and Elford 1994). In the next section I zoom in on the experiences of older men and women in caregiving and argue that the repeated demands of care in combination with the natural ageing process exhaust older men and women.

Giving care

Caring comprises both material and emotional elements and is often a matter of families, close friends and the afflicted individuals (Kleinman & van der Geest 2009: 159, 161). Though family care arrangements are informal  there are very clear expectations. One of these expectations is those of close relations, especially a mother. “If your mother is gone, there is nothing left”, is what villagers say. Neighbours can offer support, visit, bring some food, but if the family does not sit with a patient in the hospital, does not feed a patient at home, or does not buy clothes for orphans, no one will.

Taking care of patients

Older people who provide care do not only provide care to adult children, but also to members of the wider extended family; siblings, partners, and grandchildren (de Klerk 2009).The table below shows that older men take care of siblings more often than older women, which can be explained by their position in the patrilinial family and by the history of commercial sex work in the area, which killed many divorced women in the 1980s who returned to their natal homes (and brothers) to die.

Care for relatives with AIDS (according to old person)  amongst 21 older people above 60*

The social organization of care for patients is structured by gender, both in terms of work division and in terms of what is “good” care. Older women are expected to provide the physical care for patients whereas men are expected to provide financial and practical support. When a widow is caring for a dying relative she either sells assets, works where possible as a casual labourer, or receives assistance from the male relatives, sons, or brothers. For old women good care involves intimacy and closeness; showing love to a patient. To show love is hard work, in particular in the terminal phase. Patients often have severe symptoms; continuous diarrhoea, open sores, and are physically unable to walk. As toilets in the houses are outside and patients are usually cared for on a mattress on the grass floor, these symptoms require the older person to use an enormous amount of physical effort. To cook the food a patient needs, older women need to collect firewood, buy eggs or milk, and sometimes work on the land to buy necessities. And then there is the strain of living with a terminally ill patient who may die at any time. It involves sitting up at night, spoon feeding a patient. As a woman of 65 said about the care for her daughter:

“It is hard. You know where you are sitting now (on the sofa, with a cup of tea in front of me), if the patient is terminal she cannot even reach for that cup of tea. You have to place it in her hands. And then the patient wants an egg so you go to the neighbours and buy an egg and send a child to collect firewood and light the stove and cook the egg, and then she says, no, I am sorry I am not hungry, maybe some milk, so you go to the neighbours to buy milk. It is very tiring[…]and sometimes you get angry but you excuse the patient as she is ill.

The position of older men in families is often forgotten as the visible daily care tasks fall to older women. Old men like Ta Stephen are, at an age of 66, responsible for upward generations (as a son he needs to provide for his elderly parents) and downwards generations (as a father he needs to provide his children with the means to build a life. For Ta Stephen caregiving is a repeated affair; he cared for his son, his son’s child and his daughter within the time span of five years. Caregiving for him as a man involves paying for hospital bills, organizing transport to the hospital, travelling with his relatives to different hospitals, working to raise money to provide all the care and organizing his family to provide care

“When I saw that she was ill, I prevented her from returning to the city…I sat down the family and explained exactly what the problem was and what we would have to do”.

Older men and women need to engage in activities which generate income to manage the demands of caregiving. Casual labour groups prefer young strong women and older women often worked as individuals with for example wealthier older neighbours. In this sense ageing bodies have trouble managing the demands of care and consequences of death within a context in which money increasingly plays a role, and kinship relations also become monetized. Sometimes assets such as land are sold, or loans are taken against high interest (for example with the land or next years harvest as a guarantee), compromising food security. Caregiving thus involves physically demanding tasks in income generating activities.

Taking care of orphans

Orphaned children also move amongst kin. When an adult dies the family gathers to decide where grandchildren should stay. Important considerations are the financial status of the foster family. As Chepgneno shows, families who provide much care and foster orphans are often financially more secure (Chepgneno 2008). In some cases a family decides that siblings are the best foster parents, in other cases it is the paternal grandparents. When children have no father it is often the maternal grandmother who fosters the children. Nyambedha shows for Kenya that 1 in 5 caretakers for orphans were older than 55 years (2003: 33)

Fostering orphans is a commitment for years. Often orphans are fostered when they are small infants and are raised into adolescence and adulthood. Each of these stages requires a different energy and demands something of the ageing body. An infant wakes up several times a night and needs milk and porridge, expensive foods. An infant also needs carrying on the back. Moreover older women cannot leave toddlers at home alone, which confines them to the house, and deprives them of socializing with friends, visiting children or friends in other villages or simply going to the market or work as a casual labourer. Though there are always family members who can temporarily stay with the children, these are elements often forgotten in childcare. At the same time small children often start helping the grandmother with daily chores and many grandmothers describe the relationship as very close and comforting, the children are extensions of their deceased children and care is not a one-way street (Madoerin personal communication 2008) . When children reach adolescence a core problem also quoted in other literature is the lack of authority grandmothers have over their children (Ice et.al 2006)  “Grandchildren turn to pee in your mouth”, is what a bitter grandmother mentioned, indicating the lack of control she feels. Often a sibling of the deceased father or an uncle is asked to discipline the children.

Care for orphans is not just a lengthy commitment at one time, when a grandmother looses several children, it may happen that she fosters young children at a time when other grandchildren are just growing up. One grandmother who had been caring and raising orphans for 14 years was confronted with three more grandchildren, the youngest six years old at an age of 74. “I will raise children until I die” she said. When I came back a few years later, she had temporarily left the children with her son and went to the city for 8 months to regain strength in her adult granddaughters’ house. In this sense families tend to assist the grandmother with active care. Grandfathers have a less active role in the physical tasks of raising grandchildren but are often financially responsible putting grandchildren through school and have a key role in securing inheritance.   

Responsibilities of grandparents also relate to securing the future of their grandchildren. In this area children belong to the clan of their father and girls move to their husband’s home when they marry. When a  widow has children she can remain on the land of her husband, to safeguard it for her children. Orphans are therefore preferably fostered by the brother’s or parents of their father, in order to grant them access to their father’s land (land is the basis of wealth). As Nyambedha shows for Kenya, many grandchildren grow up within their matrilineal families, thereby challenging their access to land and inheritance (Nyambedha 2003).  In northwest Tanzania there are many court cases as a result of land grabbing, stealing land that orphans are entitled to. NGOs in the district stimulate the writing of wills in order to prevent this problem and assist in court cases.

Loosing care

“The worst thing of growing old is losing your strength. You say I look youthful but I am not. Look at that man tending my garden [coffee plantation]. My son had to hire him to do the work. If he had not had been able to pay for the man, who would have cut my banana trees? And did you remember that old neighbour? She said if she would lose her strength, she would just sit there and die ….It is bad”.

Strength in daily life is a core asset. The increased responsibilities as a result of HIV/AIDS has become a continuous practice forcing older people to remain strong. The new demands on older people’s bodies have consequences for their health as several authors show. Literature about older people’s health during care giving showed that the BMI of older people decreased during care (Ainsworth 2001). But another consequence is a more psychological one. Older people attributed many severe physical problems, such as strokes and heart problems, high blood pressure, to the worries and the sleepless nights that resulted from these increased care demands. Months after a death of a patient older people would lack sleep at night. To deal with this problems the core strategy of old men and women was pushing thoughts away and telling each other not to think about loss. The word for “putting up with”, kwegumisirisa, in Kihaya stems from the word Kuguma, which means to be hard, but also to be healthy. Declining strength as a result of ageing in combination with mental and physical strains from the extra responsibilities make life insecure.

Everyday care for older people, such as household chores, food assistance, income for basic needs, including remittances, but also less visible care practices such as greeting and checking on an older person, is primarily organized in households and strongly influenced by gender. Older men usually have younger wives who is their primary caregiver. Older women do not have that security. In my study, there were only 2 married women above 60 years old, and of the 30 older women who were unmarried 20 were widowed and 10 divorced. In advanced old age older women will live with their son’s family or with an adult grandchild, or in some cases move to their natal home, to stay with siblings. Yet care in the natal home is often insecure too.

In 2003 a local NGO, Kwa Wazee, started with cash transfers to households of primarily older grandmothers and orphaned grandchildren and with psychosocial support groups for 800 grandparents and their grandchildren. This security provides some peace of mind and grandmothers seem to plan more ahead (Hoffman et.al 2008). Recently a health insurance scheme was set up and the organisation is looking into providing this insurance for  the group of grandparents. Moreover older people are organised in community groups following the death of an old woman because of lack of care, to respond to the insecurity of care in old age. Though cash transfers provide some financial stability and the psychosocial support groups provide a space to discuss grief, there are only limited solutions to provide end of life care for older people.

Conclusion: Giving care - losing care

The position of old men and women in the era of AIDS has shifted to a situation of increased responsibility and a loss of security. The caretaking process for both patients and orphaned children often seems to be a lengthy vicious cycle, raising orphans to adulthood, fostering young orphans again. A central element in caregiving is strength. Strength is needed to perform the physical tasks of caregiving but also the physical tasks of raising grandchildren; lifting small children, exercising authority over adolescent grandchildren. Strength is also needed to work in order to generate income. The care roles of older people in families are sometimes a strain on family relations as demand is high and capacity of young adults to assist is limited. For older people caregiving for both patients and grandchildren is physically and emotionally straining and the health of older people is declining as a result of a natural ageing process. This combination as well as the limited capacity of remaining adult children to provide care for old men and women makes their future insecure, the future of old women more so than man because of their position in the patrilineal family. Older people attempt to stay healthy for as long as possible by actively pushing away thoughts about loss, and usually engage in short term solutions to provide grandchildren and patients care, such as selling land, or taking loans. Care for older women themselves is insecure due to the increased demands on family relations. One way forward is to provide older men and women with a regular cash income, but this does not solve the problem of the demands on older people’s ageing bodies, nor does it solve problems of end-of-life care for older caregivers themselves.

Endnotes:

[1] The research on which this paper is based was funded by the Amsterdam School for Social Science Research

[2] I used the cut-off line of 60 years to define older. This is the pensionable age in Tanzania and the age in which older people are becoming more dependent. In my sample of 50 old men and women 13 were older than 80 years.

References:

Ainsworth, M., Dayton, J. (2001) “The impact of the AIDS epidemic on the health of rural elderly in Tanzania”. World Bank Working paper

Ankrah, M.(1993). “The impact of HIV/AIDS on the family and other significant relationships. The

Bohman, D., Vasuthevan, S., Wyk, N., van., Ekman, S.(2007) “We Clean Our Houses, Prepare for

Weddings and Go to Funerals”: Daily Lives of Elderly Africans in Majaneng, South Africa”.

Journal of Cross-Cultural Gerontology. 22:323-337

African clan revisited”. AIDS care. 5: 5-22

Chepgneno, G., Falkingham, J., Madise, N., Evandrou, M.(2008). “Socio-economic differential between HIV/AIDS caregivers and non-caregivers: a case study of older people in Nairobi City’s slums”. Conference paper: older people and HIV/AIDS in Asia and Africa. University of Michigan, USA. October 2008

Dayton, J., Ainsworth, M. (2002) “ The elderly and AIDS: Coping strategies and Health in rural Tanzania”. Social Science and Medicine 59:2161-2172

Geest, S.van der (1997). “Money and respect: the changing value of old age in rural Ghana”. In Africa 67 (4).

Geest, S. van der (1998). “The social and cultural basis of home care to elderly people in rural Ghana”.

Diseases, Culture and society. Genova: Erga Edizioni

Hoffman, S. Heslop, M., Clacherty, G., Kessy, F. (2008) Salt, Shoes and Soap for School. The impact of Social Pensions on the lives of older people and grandchildren in the KwaWazee Project,

Muleba District, Kagera Region, Tanzania. Report of Evaluation.

King, S., Owino, E., Anastasia, P. (2008). “Caregiving in the context of HIV/AIDS: perceptions of Kenyan Grandparents of orphans. Conference paper: older people and HIV/AIDS in Asia and Africa.

University of Michigan, USA. October 2008

Kaijage, F. (1997)  “Social exclusion and the social history of disease: the impact of HIV/AIDS and the changing concept of the family in Northwestern Tanzania”. In Rethinking African History.

University of Edinburgh: Centre of African studies. (331-  356)

Kleinman, A., Geest, S. van der (2009).  “Care in Health care, remaking the moral world of medicine”. Medische Antropologie 21 (1)

Klerk, J. de (2008) `The compassion of concealment. Silence in the caregiving relation between old parents and their dying adult children in the AIDS era Northwest Tanzania”. Conference paper

AIDS and secrecy conference, University of Amsterdam July 2008

Knodel.J, Zimmer, Z., Kim,K., Puch,S. (2006). “the impact of AIDS on Older-Aged Parents in

Cambodia. Population Studies Center. Research Report 06-594

Knodel, J., Saengtienchai, C. (2005). “Older-Aged Parents: The final Safety Net for Adult

Sons and Daughters with AIDS in Thailand.” Journal of Family Issues. 26(5)665-698.

Kwesigabo, G. (2001) Trends of HIV infection in the Kagera region of Tanzania 1987-2000.PhD-thesis University of Umeå.

Madoerin (2008). Personal communication during visit to the Kwa Wazee Project

Nyambedha, E., Wandibba, S., Aagaard-Hansen, J. (2003). “Retirement lost –the new role of the elderly as caretakers for orphans in western Kenya”. Journal of cross-cultural Gerontology 18 (33-52)

Seeley, J., Kabunga, E., Tumwekwase, G., Wolff, B., Grosskurth, H. (2008) “The impact of the AIDS

Epidemic on the Lives of Older People in Rural Uganda”. DEV Working Paper 4.  

Shaibu, S. (2000): “Caregiving on the edge: the situation of family caregivers to older persons in

Botswana”. Southern African Journal of Gerontology. 9(1): 15-19

Shaibu, S., Wallhagen, M. (2002). “Family caregiving of the elderly in Botswana: Boundaries of

culturally acceptable options and resources”. Journal of Cross-Cultural Gerontology. 17(2):139-154

Ssengozi, R. (2007) “The plight of Older persons as Caregivers to People infected/affected by

HIV/AIIDS: Evidence from Uganda”. Journal of Cross-Cultural Gerontology 22:339-353. Weiss, B.(1996). “The Making and Unmaking of the Haya Lived World. Consumption,

Commoditization, and Everyday Practice. Duke University Press: Durham and London.

Weiss, B. (1997). “Northwestern Tanzania on a single shilling: sociality, embodiment, Valuation”. Cultural anthropology. 12(3):335-361