For someone in her mid-30s, I have a fairly large experience of being someone’s caregiver. In high school, ‘I began working in a nearby nursing home. I can’t remember quite what drove me to seek that work out – it was not the kind of work that most teenagers I knew did. I think what intrigued me about it was its importance – as a teenager seeking meaning, caring for people at the end of their lives seemed urgent. It was only later that I came to realize that taking care of the elderly and disabled was, in our society, viewed as not onlyl not urgent, but not integral or important. Even as a teenager I couldn’t understand why it was treated as unskilled labor, when it seemed to require such a complex measure of compassion, kindness, physical strength and humor. Why weren’t my fellow caregivers, most of whom were supporting families, better paid? I never did come to fully understand it, in years I spent working in nursing homes and hospices.
Later, as an adult, my husband and I chose to care for his grandparents in their last years. This was by no means easy, and devoured a large portion of our existence, at a time when we also had very small children and infants. It was exhausting, stressful and sometimes very sad. It was also wonderful in many ways – a gift to my children to know their great-grandparents intimately, a gift to us to know them so well, a gift to us to understand that what we were doing is part of a cycle that they had done for their parents. Acknowledging that something can be a gift does not mean it is always easy or pleasant or joyous, but i have no regrets and would do the same again in a heartbeat, because it needed to be done.
Parenting is not caregiving – one gives care to one’s children, but within expected parameters as they grow and increase in strength and ability. But my oldest son’s increases do not work the way most children’s do, and one of the measures of his development is how we gently approach the day in which I will shift from the ordinary work of parenting to the less typical (but still very common) work of caregiving to my adult child, who will probably never live fully independently. This comes with some sorrows and ambivalences, of course – and of course comes with the recognition that someday, this responsibility will have to pass to someone else, when Eric and I can no longer care for Eli. This is a scary thing. But on the whole, caring for Eli too is a gift and a delight – even when it is messy, tiring and stressful job. I know it will be my work for the whole of my life in one way or another, and that does not frighten or horrify me – although it occasionally seems exhausting since my son is rather like a two year old – but with the physical abilities of a very large 10 year old, and will only get bigger. Still, the rewards and return of loving Eli is enough and we try to frame our future as the project of making a life that includes our child and meets our needs as well. It is an art project, this life we make.
There may be more caregiving roles in our future. My husband is an only child – and it is he who will face the responsibility of any care his parents need (G-d willing little and long from now, for their sakes). Eric and I have agreed to act as guardians for a child in our extended family – this little girl has serious disabilities, like Eli, and a mother who is a full generation older than we are. Again, hopefully long from now, but someday we will be responsible for her care and helping her navigate her life. I cannot say we look at each of these future obligations with delight, but we wish to live in the kind of family, the kind of world where families make a place for people who are not able bodied, who are not fully able to reciprocate, and in order to live in that world someday when I need care, I must begin to make it with my own hands.
One of the questions that comes up more than any other in our adapting-in-place class is what to do about aging and retirement, how to avoid being a burden on another person, particularly if they cannot count on their retirement savings cushioning their esxperience. And I don’t have good answers to this question. But the ones I can come up with are these. First, it is not necessarily inherently burdensome to need help – that is merely a responsibility, and if it can be lived gracefully and handled gracefully, responsibilities are not crushing.
Moreover, in the course of our lives, every one of us will be dependent upon someone else – perhaps for only a few moments, perhaps for many years. Many of us will be disabled, elderly, ill, fragile, injured. It is an illusion to think that by saving money and hiring people, we can avoid “being a burden” – instead, what we can do is shift our dependencies onto professionals. If those professionals are fairly paid and enjoy their work, they may not find you to be a burden. I can say, however, that sometimes they do. Money doesn’t make you less burdensome, in merely makes people less free to tell you that they find you burdensome.
I point this out because I think we misframe the relationship when we speak of this as a choice between “money to pay for assistance, no money to pay for assistance and thus a burden.” I think that’s the wrong way to frame this. Instead, I think it is important to remember that dependencies are mutual – and that the relationships on which are burdensome or not based on reciprocities and acknowledgements. That is, it was not a burden to care for Eric’s grandparents because even though I had not the experience of being raised and cared for by them, my husband had that experience, and I had the experience of being welcomed, included and loved by them. It was also less of a weight because I knew they understood what the experience was like – they had done the same for Inge’s parents, and they could see this from my perspective. And in talking to them, and listening to them, I could see a small view of my future, and how I would want to be treated and cared for myself. Doing this for them was a way of doing it for myself, in anticipation.
I was thinking of this when I read Arthur Kleinman’s moving and fine article on giving care – on the medical interpretations of this act, and the way that our medical system doesn’t really have a language for the ordinary acts of giving care to one another, and the hard realities of caring for his wife with Alzheimers. He writes:
Joan can’t, on her own, find her way out of the bedroom. Yet, once safely in my hands or those of our trusted home health aide, she can walk effectively. A China scholar who translated and interpreted ancient texts, she can no longer read. A wife and mother whose fierce commitment to the family was its moral backbone, she now struggles to be part of family functions and can sometimes seem impassive and cut off from us. Formerly the primary caregiver for her husband and children, she is now the care-receiver. She may no longer be who she was even seven years ago, but her subjectivity has not so much disappeared–there is much of her personality that is still present–as altered. And that alteration has affected what had been for four decades an all-consuming relationship–our identity and orientation. I still cannot accept to treat her as if she can no longer share the sensibility and narrative we have created, and yet, more and more frequently, she can’t. She is happy much of the time. It is I, the caregiver, who, more often, am sad and despairing.
She is a source of great concern to each of us, her family members, about how to best manage her condition. We grieve what we have lost and fear what we know lies ahead. We have each of us gone through feelings of loss, anger, and frustration. We have been marked by a special kind of pain. But we have also experienced a deepening sense of responsibility, gratitude for all that we had lived through together, love, solidarity, and a shared sensibility that we have resisted what is beyond our control and are, individually and collectively, more for it. This is not meant as a self-satisfying summing up–there is no final summary yet and the proper genre is tragedy, as millions who are engaged in these everyday practices know.
Economists configure caregiving as “burden.” Psychologists talk about “coping,” health-services researchers describe social resources and healthcare costs, and physicians conceive it as a clinical skill. Each of these perspectives represents part of the picture. For the medical humanities and interpretive social sciences, caregiving is a foundational component of moral experience. By this I mean that we envision caregiving as an existential quality of what it is to be a human being. We give care as part of the flow of everyday lived values and emotions that make up moral experience. Here collective values and social emotions are as influential as individual ones. Within these local moral worlds–family, network, institution, community–caregiving is one of those things that really matters, but usually not the only thing.
As a scholar, I engage with other medical humanists to understand the dimensions of this moral activity–how it is experienced and organized. In part, I hope it can be better taught. I believe that what doctors need to be helped to master is the art of acknowledging and affirming the patient as a suffering human being; imagining alternative contexts and practices for responding to calamity; and conversing with and supporting patients in desperate situations where the emphasis is on what really matters to the patient and his or her intimates. A program of medical training that makes this happen, however it is innovated, should combine practical experience of caregiving for health catastrophes in homes and institutions, where students actually do those things that families do, with the knowledge that stands behind the art of medicine.
For a whole host of reasons – demographic, economic, energy-linked and environmental, giving care is going to be a more important job in the future. More of us will have to care for one another, where institutions could once do so. More of us will have to rely on people we know, rather than our savings. More of us face the terrible fragility of those questions – who will care for me, how will I manage to care for them?
And for all that I do not find my own work as a caregiver to be unpleasant, I know that it can be hard. I’ve been fortunate – we were able to integrate Eric’s grandparents into our lives, and our son, as autistic children go, is easy. I tell everyone that Eric and I won the lottery. I know people who deal with complex medical situations, with recalcitrant and angry Alzheimers patients, with mental illnesses that simply are unmanageable. And I wish I had a good and magic answer for how we’re going to do this. I don’t. All I can say is that many more of us will be struggling with this project, to do the very best we can. More of us will have to begin earlier – having conversations and speaking to one another, and more importantly, creating the kind of deep relationships of biology or choice that make it possible to take without reciprocating based on a long and deep history of generosity, a well of shared experience and love that make it possible to draw deep when there’s nothing left.
Ultimately, I think Kleinman gets this right – giving care is part of what makes us human, of what makes us moral. I hope that institutional responses to our coming collective crisis will be sufficient to help those who need it the most, although I am not wholly optimistic. But for those looking down the reality that all of us age, all of us suffer illness, all of us face times of needing care, the only real answer I can give – and it is no solution, just a part of the answer, is that we must begin to conceive the act of giving care correctly, as part of our lives, begin to speak of it and make space for it, and most of all, find our way to navigate this essential and yet not fully visible path in our lives.
None of us, if we think of it, want to live in the kind of world where there is no place for those who cannot participate fully. And that means that each of us has an obligation to do the work of making this harsher, warmer, poorer world still a place with space for those who are old, who are weak, who are ill, who are disabled. We need to make sure that they are fully integrated into our lives, because they deserve it, because we know that someday we will be them too, and our only hope is living in a world that gives care.