In this excerpt from Dr. Arthur Kleinman’s “The Soul of Care,” Dr. Kleinman reveals the challenges of taking care of his wife as she succumbs to her disease.
And so we had now arrived at a key point in the downward spiral of Joan’s disability when it was clear she would have to stay at home. But how could I arrange that without relinquishing my own work? Early retirement was out of the question; we needed my salary to live on and to deal with the costs that came with the progression of Alzheimer’s disease.
My mother’s relationship with Joan was so strong that she became an important source of support. She would come to stay with Joan for a few hours to give me respite on the weekends. If I had to attend a meeting out of town, she would stay overnight—often sleeping in the same bed to give Joan the sense of security that someone was always there if needed. It worked so seamlessly that I never felt guilty that I was imposing on her. In her nineties but in good overall health, my mother still found it difficult to contribute in this way to what we now had to think of as a system of care for Joan. My mother never complained, however, but rather explained that it gave her a sense of purpose in life, and she enjoyed doing it, being with Joan. This helped postpone an inevitable day of reckoning.
Experienced caregivers would have recognized that I was transitioning out of the initial crisis mode to another phase: long- term care, although at the time, I couldn’t have stepped back far enough from the situation to see things that way. In fact, I was largely oblivious to the change. Still, in the early crisis mode, I responded by doing more, often more than I could really handle. The strong bond of our relationship carried me through Joan’s progressive blindness and her worsening cognitive decline.
I had come to feel that I was flourishing in the early stages of caring for her. I was finally giving back to Joan what she had always done for me. I remember feeling happy cooking dinner and doing the dishes. Joan’s denial of how severe her medical condition was also made it easier for me. We pretended that we could cope, that the losses were not so great that we needed to make a fundamental alteration in how we lived. But that’s all it ever was: pretending.
And so several years slipped by. The medicines, as predicted, made no difference. But by cutting back on my busy life, which I probably never would have done otherwise, I could spend more time with Joan, looking after her increasing needs and establishing a routine of care for her. However, one of the few truisms about illness and caregiving is that the only constant is change. Just when you think you’ve finally achieved some stability, the illness takes an unexpected turn, or some other social or financial factor changes, and you have to start all over. In our case, we had only just settled into a manageable caregiving routine when personality and behavioral changes surfaced. There were sudden outbursts of anger; periods when she became silent and withdrawn; frustration with the limitations on what she could get done; very occasionally, panic. These episodes first colored and then transformed how Joan related to me, making it more difficult to collaborate on the care. I recognized slowly that I could no longer carry so much of the burden of care myself. Why had it taken so long to get to this point?
Things had changed substantially since the diagnosis was first made, and we could not keep moving forward on the path we had set for ourselves. We were entering the long-term care mode for a woman who was blind, cognitively impaired, and now behaviorally unpredictable. Professional care had proved limited, but now we found that the kind of family care we had devised for the early stage of dementia wasn’t going to be enough either.
Our primary care physicians—first Charlie, and later Chris— knew all of this, and more. They were an ongoing source of support for us both, engaging deeply with the minutiae of daily living, with how home care was going, and with our psychological and social well-being. Their uplifting and enduring presence provided us with something approaching a sense of security as we went through this wretched experience, knowing they would be with us until the end, no matter how bad it got, no matter what was required of them. It only became fully apparent what a remarkable gift this was as we entered the darkest hours late in the course of her disease.
In memorable contrast, neither the young neurologist who followed the progression of Joan’s disease every six months, nor any of the other neurological specialists we needed as her disease worsened, showed interest in these details or the necessities of family caregiving. When I informed them about what was going on at home, they looked at me as if I had forgotten that I was a medical professional like them and that I had strayed from the medically significant conversation to something more or less irrelevant.
None offered advice about the value of a home health aide. No one told us how we might modify our home to make it more appropriate for Joan’s disabilities. None speculated about how a physical therapist or a visiting nurse might help us. Nor did they deem it helpful to refer us to a social worker or therapist. My status as a psychiatrist may have led them to believe that I could handle Joan’s psychological, psychopharmacological, and interpersonal issues on my own. And, in fairness, they did ask me about depression, albeit in a somewhat dismissive way. But on social services and caregiving supports, they were silent. It was the diseased brain that mattered to them, not the actual, apparently lesser, problems we were having in coping. In retrospect, this is what stands out as the most troubling aspect of the professional care we received. We might have hoped at least for a team-based approach to patients and their families, where we could be referred to other health and welfare professionals in one neurological group for their advice and expertise.
It was as if the highly specialized neurologists we consulted were unaware that for Alzheimer’s disease—about which so little is known of the cause and pathophysiology, and for which to this day we possess no effective treatment—it is the family and social caregiving network that make all the difference. The medical experts for this cruel disease seemed not to recognize the need to engage in hands-on professional caregiving themselves. As no doubt was true for their other patients, we needed their experience, advice, and insight to help us deal with Alzheimer’s crucible of suffering and its ramifications for daily living.
After years of caregiving for Joan, I harbored the bitter feeling that once their diagnosis had been made, neurologists, unlike primary care doctors, were no help at all and contributed almost nothing to her care. I fear that many patients and family carers struggling to cope with other neurodegenerative and serious chronic conditions must come to the same damning conclusions. Medical specialists too often treat caregiving as a foreign domain or a distant, nearly forgotten relative.
From THE SOUL OF CARE by Arthur Kleinman, published by Viking, an imprint of Penguin Publishing Group, a division of Penguin Random House, LLC. Copyright © 2019 by Arthur Kleinman