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Disrupted connections: On participation in caring for a mother with dementia

On a sunny, stifling afternoon, my friend, an Ayurvedic doctor, ushers me into a scantily furnished examining room of his clinic in central Kerala, South India. There, a small, stout woman sits on a chair. Her name is Mercy.1 She is wearing a salwar kameez, an outfit comprising of a long shirt, baggy pants and a scarf, rather than a sari, which would be more typical for a woman of her standing, senior and married with children. I try to dissolve the thickness of our impromptu meeting by smiling a lot through the explanation of my research. Finally, she invites me to visit her home. She would cook dinner, Mercy says, and I can meet her mother! I enthusiastically accept.

When I enter, Mercy’s house, I immediately meet Mercy’s mother. A woman in her eighties, she is afflicted with severe dementia, diabetes, and heart problems. She greets me, but doesn’t seem interested in starting a conversation. So Mercy tells me her story in the kitchen, over steaming rice and vegetables, frying in the pan.

Despite having five children, Mercy’s widowed mother has found herself placeless at the dawn of her life. According to the conventional practice of elder care in India, one of her three sons should give her shelter in his home where his wife would cook, feed and bathe her mother-in-law. Yet that is impossible in Mercy’s mother’s case: one son has cut all contact with her due to inheritance conflicts; the second son lives in another part of India; the third son moved to Europe. Mercy’s mother would not re-locate, having spent her whole life in Kerala. Mercy herself lives in the US, so the mother is left with her married daughter Rosa, living not far from the family’s ancestral home. But this arrangement is in disagreement with the common social conventions: in India, parents are not supposed to stay with their daughters, a custom which Rosa’s husband brings to the table day in, day out. Rosa, too, increasingly complains of the exhaustion of having to take care of a mother, suffering from an aggravating mental illness.

For Mercy and her brothers, displaced by migration, caring for their mother at a distance is next to impossible. Mercy’s brother in Europe offered financial help, but Rosa brushed his offer off. Our mother needs somebody to feed her, by spoon, daily, and no amount of money could do that, Rosa reportedly said.

From the US, Mercy used to call her mother daily, but phone calls have become increasingly difficult. How to talk on the phone with someone who has dementia and may not even remember having a daughter, let alone that she lives abroad? Mercy still calls, but ends up mostly talking to Rosa about their mother’s condition.  She also took their mother in her home while visiting Kerala during that winter. In this way, Mercy provided care not only to her mother, but also to Rosa by bringing her some respite from the caring tasks, if only for a short time.

But keeping their mother at home, Mercy’s or Rosa’s, is not a long-term solution. It simply cannot be. The two daughters have no knowledge, skills and particularly patience to take care of somebody with dementia, Mercy asserts. As a nurse, Mercy is well familiar with specialized care facilities and she approves of how elderly people are treated there.

“People are in a group and they teach them how to sit, eat, what to do … It’s good for them!” she says. “The nurses in these homes are trained properly, and they are paid for it so they should pay proper attention to these people.”

So Mercy suggested to her siblings to put the mother in a nursing home. And what was their reaction?

“They would kill me,” Mercy says. “If we put our mother in a nursing home, they said, people would ask, how can this be, there are five children and no-one can take care of her?!”

It has to do with dignity, of them as ‘good children,’ of their whole family as a ‘good family.’ In India, old age homes are thought to be full of the most devastated, poor people, people who come from ‘bad families,’ troubled by disagreements leading to bruised, if not broken relationships. From our conversation, it slowly emerges that Mercy and her siblings indeed have a troubled relationship with their mother, with bitter memories that reach far back into their childhood. It seems as if placing their mother in an old age home would bring these intimate tensions to the surface and make them visible to the whole wide world.

The disagreement about the nursing home remains painful for the siblings. Mercy is refusing Rosa’s and their brothers’ calls because she is so angry with them. She has even declined their invitations to dinner, for fear of not being able to hide her feelings of frustration over this issue.

Despite her siblings’ protests, Mercy plans to visit a local nursing home. “But it’s not only for my mother,” she says. “I want to see it for myself, too.” Her plans for the future are uncertain. What will happen to her once her husband, many years her senior, passes away? She doesn’t want to be a burden for any of her two daughters who are creating their life abroad. And yet, cleaning the dishes from the table, Mercy says quietly, “Maybe, hopefully, one of my daughters will take me in.”

**

When adult children are dispersed throughout countries and continents, what happens with their aging parents? What becomes of care in a transnational context? I have tackled these questions through my fieldwork in Kerala and suggested that digital technologies such as mobile phones and webcams participate, together with children and their parents, in forming ‘transnational care collectives.’ Care is then shaped by who among family and non-family members joins in the practices of care at a distance as well as what types of technologies are involved. When people cannot care by cooking for each other, care becomes about calling each other on the phone or webcam daily.

But I found the transnational care collective in Mercy’s family elusive. There were cracks in their collective, created by the onset of dementia as well as by the decades of family conflicts. The cracks appeared as the inability, unwillingness or denial of participation in the transnational care collective. What kind of a collective can be formed, if at all, if some family members are not able to join it, refuse to participate, or are not allowed by other relatives to do so? Mercy could not care for her mother directly as dementia made it impossible for them to have a conversation on the phone. Mercy’s brother was denied participation as Rosa refused the remittances which he wanted to provide in an act of care. Another brother declined his participation out of old disagreements.

Yet, as Annelieke Driessen (2018) suggests, the possibilities to participate in care are not necessarily a zero sum game. For in Mercy’s family, care was there, with all its imperfections and limits. Mercy may have thought the care that she and her siblings were doing was not ‘good enough,’ but I can notice care in their practices nonetheless. Care was in the daily calls between Mercy and Rosa, which included discussions of their mother’s condition. Care was in Rosa’s daily negotiations with her husband about her mother living with them. Care was in the occasionally refused dinner invitations and in the phone calls not made due to frustration over different ideas of what ‘good care’ for their mother with dementia could be. Care was in visiting nursing homes, even as these visits were accompanied by a lingering fear of Mercy own imminent aging.

Dementia, after all, did not entirely preclude people and technologies to practice care at a distance. Rather, dementia helped to shape their participation in the transnational care collective in specific ways. Instead of the phone connecting Mercy and her mother, it connected Mercy with Rosa in their joint endeavour to organize and discuss care for their mother. Dementia also shaped the relationship between Mercy and her brothers, who responded to the situation in different ways.

So dementia did not prevent the formation of the transnational care collective simply because the mother with dementia was not able to speak with Mercy on the phone. Instead, dementia joined the care collective as a participant of its own. 

Notes

1 All personal names are pseudonyms.

References

Driessen A. Thinking pain. Somatosphere. 2018. Available at: http://somatosphere.net/2018/thinking-pain.html/.

Tanja Ahlin is a PhD candidate at the Amsterdam Institute of Social Science, University of Amsterdam, and a fellow of the Trans Global Health Erasmus Mundus program. In her work, she combines anthropology and science and technology studies (STS) to investigate the participation of information and communication technologies (ICTs) such as mobile phones and webcams in care at a distance. On this topic, she has published the article “Only near is dear? Doing elderly care with everyday ICTs in Indian transnational families”, which appeared in Medical Anthropology Quarterly 32(1) in 2018. Another publication, also based on her thesis, has appeared in Medical Anthropology in 2018, titled “Frequent Callers: ‘Good Care’ with ICTs in Indian Transnational Families”. Tanja tweets on technology, care and academic writing via @TanjaAhlin


One Response to Disrupted connections: On participation in caring for a mother with dementia

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