Exploring the Lessons Learned as a New Caregiver

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Dr. Arthur Kleinman
Arthur Kleinman, MD

After serving as the primary caregiver for his wife for 11 years, Dr. Arthur Kleinman shares the unexpected experiences, difficulties and lessons that he faced. His book, The Soul of Care: The Moral Education of a Husband and a Doctor, chronicles the emotional and physical journey as a caregiver for a loved one with Alzheimer’s disease. Guest: Arthur Kleinman, MD, professor of medical anthropology and cross-cultural psychiatry, Harvard University

 

Episode Topics:

  • Do you believe caregiving and empathy can be taught? 1:25
  • Unexpected experiences as a caregiver: 3:34
  • How do you communicate to your loved ones you need help with caregiving? 10:22
  • Differences between “illness” and “disease”: 20:38
  • Why is important for the community to welcome individuals with memory loss? 27:06

Transcript

Intro: I'm Dr. Nathaniel Chin, and you're listening to Dementia Matters, a podcast about Alzheimer's disease. Dementia Matters is a production of the Wisconsin Alzheimer's Disease Research Center. Our goal is to educate listeners on the latest news on Alzheimer's disease research and caregiver strategies. Thanks for joining us.

Nathaniel Chin: Welcome back to Dementia Matters. Our guest today is renowned psychiatrist, social anthropologist, author, and expert on the subject of caregiving: Dr. Arthur Kleinman. Dr. Kleiman has taught at Harvard for over 40 years, but his medical training and expertise could not have prepared him for the decade he spent as the primary caregiver for his wife, Joan, as she suffered from early onset Alzheimer's disease. Dr. Kleinman's recent book is titled The Soul of Care: The Moral Education of a Husband and a Doctor, and in it, he delivers an inspiring story of his life and medicine, his marriage to Joan and the practical, emotional and moral aspects of caregiving. Dr. Kleinman, it's an honor to have you on dementia matters. Welcome.

Arthur Kleinman: Thank you for inviting me. Look forward to it.

Nathaniel Chin: Now, in the beginning of your book, you describe your childhood experiences and medical training, as training for being a caregiver, both the good and bad experiences. Do you believe that caregiving and empathy can be taught?

Arthur Kleinman: Yes, you'll notice in the book, I don't use the term empathy very much. My own feeling is that everyone, it's part of human nature for there to be compassion for others who need help or are in need. Some people are much better at showing that and acting on it, others less so, but I don't think that we're teaching anyone to be empathetic. What we're doing is we're increasing the skills of people to move their empathic interests forward into actual practices of care. So you can be empathetic, but do nothing - just observe, or you can be empathetic and have learned how to help you. And they're still learning other ways to help people that certainly can be taught. And indeed, that's one of the points of the book that I had become “an expert” in caregiving over my career as a researcher and a clinician. And yet it was only in my care for my wife that I evolved as a personality, as an individual, emotionally and morally to be, to really take on fully the role of a caregiver. So I had all the empathic impulses if you will. But they hadn't really been drawn out of me. I hadn't been stimulated as it were to develop them to degree. As I did when I took care of my late wife, Joan.

Nathaniel Chin: And as someone who was at least intellectually prepared for caregiving, I'm sure there were experiences that you had in providing care to Joan that really caught you off guard. And I'm wondering if you could share some of those experiences, the things that if you had known ahead of time, you might have done differently.

Arthur Kleinman: Well, this is a long story. It takes up a fair amount of time in the book, but I had come out of an era. We had married in an era Joan and I, which found us in a pretty traditional marriage in which Joan took care of the home and also was a collaborator of mine in research. And I did most of my work in teaching and research and did relatively little from child development to taking care of our household. So the first thing that hit me in taking care of Joan was I had to become more liberated and more involved in the home itself and things I should have done much earlier, but didn't have to, because Joan did them. From paying the bills to washing the clothes, cleaning the house to making all the appointments that people, who are at home know, they have to make for plumbers and electricians, etc. All of that was new to me in my fifties and sixties, shouldn't have been, but it was. And so the first thing was taking on an understanding of the domestic space and my responsibility for it. And it may sound odd to your listeners because the world has changed so much, but for people who grew up in the 1940s and fifties, as I did, and as Joan did, there was a different set of expectations. And then from there, I think I discovered that so much of caregiving is about the actual physical acts of doing care. So the care is more verb than it is anything else you're doing. You're helping someone to emulate. You're bathing them, helping them to take a bath. You're helping them to eat by learning how to help feed them. You're doing all those physical things from supporting them as they stand up from a chair to helping them lie down at night. And in Joan's case, as things progressed to dressing her and doing all the activities of daily living for her, with her. And I think that as a physician I simply had not appreciated how significant those physical acts are. The physicality, the viscerality of helping someone into and out of a bed. All those dimensions of care begin with a set of physical acts. And I think that that was what shocked me at first, the physicality of it, I should have been completely aware of this. I had seen others do it. I had written about it, but doing it myself changed matters. Joan was a very elegant woman who was quite private in the way she did things. She had engendered tremendous respect and she had a sense of her autonomy as a person and in control of her space. When I ended up having to select her clothes for her, put her clothes on, take them off, organize the day for ourselves, even as things worsened in her Alzheimer's disease to not just talk to her, but have to come to understand if my talking made her more agitated, or if there was a way I could make a lesson agitated so that my whole focus became on these physical activities, this emotional support and what I would call the moral solidarity that is the doing for someone. So they know that you're there to assist them, that crucial moral tie. All those things I think impressed me greatly as a family caregiver, much more than they had when I was doing professional care as a psychiatrist or studying care as a researcher.  I think that part and parcel of this is the importance for clinicians of understanding what family cares about, because most care is given in the family. And the family is where patients are coming from and where they will return. And we have in our society, an extraordinary myth of hyper individuality and of ultimate autonomy; which breaks down entirely when family members are taking care of someone with such a disabling problem as Alzheimer's. Not just Alzheimer's stroke; any of the neurodegenerative diseases: cancer, serious heart disease, etc. They all make demands on the family to enter a space that in the past was a space where you expected the person themselves to make decisions through their actions, but now they can't. And so that space becomes an interpersonal space in which the family member is the key caregiver. I just hadn't really understood that until I did it.

Nathaniel Chin: In your book, you talk about caring as an elemental thing, like rubbing a sore shoulder. One of the quotes that I really appreciate is, “you do it because it is there to do.” And I think that speaks to the physicality that you describe in caregiving, but you also talk about having family and or friends there to help you. And I wonder, how do you tell your family and friends you need help from them?

Arthur Kleinman: That's a great question. And I'm not so sure that I did as good a job as I should have on that count. I was late in getting my adult children, who are wonderful and who have deep love for me and for my wife. I was late in acknowledging to them that I was at my limits and that I really needed their assistance. And when I asked for it, they were right there to help me. Lots of my friends were astonished after they read the book, to see just how unaware they were of what I was doing in the caregiving. They knew that I was doing certain things, but they had no understanding of how many of the things and how basic those things were. And a number of them after reading the books said “Gee, you know, if you had told me about that, if I had known that earlier, I could have helped in some way.” So I'm not sure that I enlisted all the help that I needed. I want to go back to the point you made that the care is there to do. That's the moral dimension of care. I always felt that central to my marriage was the understanding that Joan would take care of me when I was sick. And I would take care of her when she was sick and needed it. And she actually took care of me for the first 30, 60 years of marriage in being the principal person responsible for our home life. I took care of her for 10 years. So it seemed to me that when the issue came up of having to do these things that she could no longer do, that I wasn't so much deciding to do care, I was just doing it. You just do it because as you put it, it's there to do. And I think that it is misunderstood by many people today that we use a cognitive framing to say that you make the decision to care. I don't know that you really are in the context of a long family or a friendship relationship, making a conscious decision. It may be an unconscious decision. You're sort of thrown into it and it's gotta be done. You know, the person has got to have a bath and someone's got to do it, and you're there and you end up doing it. And then over time, you begin to figure out ways that you can be assisted. So I also was late in coming to the understanding of how crucial a home health aid was. I had the financial resources to afford home health aid, and that home health aid was key to my being able to continue working since we both needed my financial contribution, but also it was important for my own identity and who I was. I'd been a professor for a very long time. I benefited enormously from a home health aid, but I came to it very late. Joan was already four or five years into her dementia before it became absolutely clear to me, that I had to have someone in the house help. Joan's dementia was an unusual form of Alzheimer's. About 5% of Alzheimer's disease begin in the lobes of the brain, which are responsible for the interpretation of what we see. So she became blind at the same time that she developed dementia, just walking around the house was no longer possible for her. She had to be guided and protected from banging into things so falling down stairs, etc. So by the time I came to the full recognition, I lucked out in the sense that I was able to find very quickly a home health aid who was wonderful, but it might've been the opposite. And many of my friends and contacts have had the opposite. They've had a Dickens of a time trying to find a home health aid who really could help them and who was trustworthy. Several of my friends had home health aid that stole from them. Some who had all the competencies to take care of Joan but couldn't could hit it off with Joan. So that was very critical in my family care, but as I'm trying to indicate, I came to it quite late. It was just by good fortune that I found someone who really hit it off with Joan, was highly responsible, trustworthy, and very effective. Same thing with other aspects of the care that I did for my wife. You know, I do global health. I worked in China and Asia. My wife was a China scholar. I had to make decisions about whether we could travel or not. And again, they weren't really decisions. We sort of fell into them. There was a moment in which my Chinese friends in China indicated that, you know, you should come to China. If anything, it'll be easier for you because we can help provide the care for Joan. And sure enough, that's exactly what happened. One of the benefits of being in China,with Joan and my colleagues for about a month or six weeks near the end of her Alzheimer's, was the wonderful care they provided. And the respite they gave me, that I was able to focus on the research I did with them, is what kept me going. And that's the point I want to make. If listeners take anything from this interview we have, and readers take anything from The Soul of Care, the book I've written about this experience, they should take away that the key issue in caregiving is how do you endure? How does the person who requires care, the care recipient, the patient, how does that person endure? And how does the care provider or providers endure? And I think that if we were less caught up in a sort of Pollyannaish Hollywood-esc vision of resilience, where somehow we automatically expand our capacity and are able to like a rubber band be stretched, and then come back to who we were before. If we follow that sort of resilience idea, it's completely erroneous in my experience. None of us is like a rubber band who can be stretched. Everyone is injured, is broken, is wounded by what they have to do as a family carer. Nonetheless, there are also positive things that come out of it, the sense of purpose and meaning in life. And there are joys along the way, because the fact that you're doing care, whether the person who requires care doesn't obliterate the happiness and the rest of life, it simply channels it in different directions and changes their frequency and its intensity. And I found that enduring was the key. How do you endure? And I think constantly in caregiving for people with serious disabilities, and Alzheimer's produces serious disability, you feel yourself up against the wall and you wonder, “can I get over this wall?” Because the disease is progressing downhill, and by the time you adapt to one level and you feel “okay, I'm able to do this.” The person has already sunk to another level that looks to you like something you can't do. In my instance, for example, when Joan became an incontinent of urine and feces, I didn't think I could continue. And Joan wasn't present enough to say to me, “you can do this Arthur, keep going Arthur.” And because I loved her and because her presence brought out my presence, I kept going. And in that instance, that's what helped me endure. In other instances, it was the home health aid, my family input, the sensitivity of my colleagues at work who realized some of the pressure that I was under. All those things helped me endure. I emphasize the word endurance because it isn't a matter of simply finding in yourself some magical capacity to do these things. All of these things that I've talked about, the activities of daily living: helping someone out of a bed, bathing them, feeding them. All of these over time, produce a burden for you. A psychological burden, a real physical burden from lifting someone, etc. And an emotional burden, as you begin to wonder, can I continue?

Nathaniel Chin: You also talk on the professional side of caregiving and especially when you talk about a home health aid. So in your book, you explain that illness is experienced by the person and the disease is the pathology. You then go on to state that the caregiver is a key component of illness and should be incorporated into the evaluation and treatment of illness. How can we do this in healthcare and knowing the changes that both clinicians and patients are seeing?

Arthur Kleinman: Yes. Right. This is a perfect question for me. So I put a piece in the Wall Street Journal explaining this. We basically have two facets to our healthcare system. One is an acute care disease, pathology oriented facet in hospitals and emergency rooms. And the other is a chronic care disability oriented, rehabilitation oriented, which engages with people's experience of symptoms and of their effects, the consequences of those symptoms on their lives. That system, that latter system of managing people's illness experiences in particular, does very poorly. And it's almost as if it's an afterthought and yet given the amount of chronic illness and the number of health catastrophes that happen, it's a very big part of healthcare. Now that illness experience facet of the healthcare system requires a different set of skills from doctors and nurses. We're not asking them to be in an emergency mode like they're in an emergency room and someone has had a heart attack and they have to get ready with a defibrillator to act. Here we’re asking them to take care of people whose symptoms may be pain, shortness of breath, and difficulty walking. And these interfere in significant ways with those people's abilities to work and to live their lives. And being sensitive to that, knowing how to assist with that, knowing where to get some professional help from, becomes an important part of what doctors have to do. So, for example, in chronic illness, you frequently find people who become isolated, immobilized by their problems. Like a post-stroke patient who can't walk, then isolated because they can't get around, and then gets depressed because they're isolated. Someone's gotta be there, a geriatric psychiatrist, geriatrician, a primary care doc, who can actually make a diagnosis of depression and treat someone for depression and understand that that treatment is going to be over a long period of time and is going to involve not just the medication, but all kinds of psychosocial support. And I think that requires a different set of ideas and a different sensibility on behalf of the practitioner. And I found that some fields are very good at this, and some are not. So that geriatricians, geriatric psychiatrists, primary care docs, and the nurses who work with them are pretty good at doing these things. In contrast, I found that the neurologists who were seeing Joan were really ignorant of the things they needed to do and unskilled in them because they were unschooled in them. I don't want to, in a sense, critique a whole field, but maybe I should. Neurology as a field is a wonderful field in making a diagnosis like early onset Alzheimer's and using a few medications that can slightly slow its course, but it's a field that doesn't train people in aftercare; in being concerned with what's happening to the person with a diagnosis as they try to live their life and how families are affected, and in turn, come to play a role in the care. I found my neurological colleagues who I deeply respected on the diagnostic side. And they diagnosed Joan probably a year before most places would have been able to do that. They were basically hopeless when it came to the caregiving. And so here, we have to think about reorienting entire fields. And why do we need to do that? Because neurologists are deeply involved with Alzheimer's disease and with other dementias, with post-stroke and with all the neurodegenerative diseases, they need to be active in this. There are only so many geriatricians and so many geriatric psychiatrists who can be called on to assist. The neurologist really is the key person here, and they must be much better educated and more attentive and spend more time on the management of the illness experience. In their absence, in their failure to do that, and it really is a professional failure in my mind, things become much more difficult for patients and family carers.

Nathaniel Chin: And you speak to the context in your book, the context of understanding people when we do provide care and you also speak to the community needing to understand both people with dementia and their caregivers. And so to end our interview, I'd really like for you to, to share with our audience why it is so important for the community to welcome people with dementia and their caregivers, and to prevent the isolation that you talk about.

Arthur Kleinman: Well, let's start with a broader understanding even than that, that is very important, but I want to be very broad here. 

Nathaniel Chin: Oh absolutely.

Arthur Kleinman: Caregiving, I've come to realize, is the glue that holds societies together. Most of care around the world is given by women; they're uncompensated and unappreciated for it. They raise the children. They do most of the family caregiving. Now in certain enlightened societies like Australia, where men are supported if they contribute to the caregiving and women are compensated in the caregiving, you see more men getting involved in this process. But this process is the glue of society. So when we think of just the numbers of people who are family carers, for people with dementia, with chronic medical problems, with chronic mental illness, with childhood disabilities, that number is somewhere between 40 and 50 million Americans. That means a lot of us are gonna be involved with family care in the context of our lives. Are we prepared for this? Well in certain ways, we're not. For example, our healthcare system is a poor one for longterm care. It doesn't provide many of us with long term care insurance. I had long term care insurance, because I had the financial wherewithal to pay for that for my wife and myself. But most Americans, the vast number of Americans, do not have long term care insurance. That long term care insurance in places like Japan, Denmark, Germany, Holland, Finland, and Sweden pays for a home healthcare aid. So in Japan, you automatically get a home healthcare aid if you need it for someone who's suffering from dementia. We don't have that in the United States. So in our society, we know that one of the sources of bankruptcy is serious disability and chronic illness. So literally preparing oneself for this to come means financially being prepared. And then secondly, being emotionally and socially prepared. How do we get emotionally prepared? I thought I was emotionally prepared. I was a professional caregiver, a psychiatrist, and a damn good one myself, and I had done research my entire career on just this topic. But I found I really wasn't emotionally prepared. To be emotionally prepared, means to have really participated much earlier on in the caregiving activities, which involve the caring for the home, the garden, the pets, all sorts of care. Those who've participated in that are much better straights. And lastly, caregiving is about relationships. The stronger the relationships, the more likely that caregiving will go well. The more fragmented broken relationships, the more likely care caregiving is going to be complicated and be increasingly difficult. And so, the very way we organize our relationships, the way we can be present to our spouses and our kids and our parents, that's all preparation for what's going to come at some point. And I think when it comes, when care has to be given, in that setting we need sorts of things that, again, I hadn't really thought about earlier in my career. First of all, we need social workers because social workers are like navigators for a very complicated healthcare system. It's a system that even if you're a physician or a professor within it, it is very difficult to understand when it comes down to the details of your own family concerns. That's where access to a social worker can be enormously significant. We need access to paramedical people or the professions like physical therapy, and visiting nurses who play such an important role in helping people to be cared for at home. We also need to be much more attentive to: what are the alternatives when you can't take care of someone you love any longer at home? In my case, I took care of Joan for 10 years. In the last nine months, she'd increasingly become paralyzed. And as she became delirious, I found it extremely difficult to care for her. And I had to turn to an excellent cognitive care unit. Again, I found myself unprepared for this. I should have looked years in advance at assisted living facilities, so that we could have decided maybe that was the first step toward a more institutional care. When I had the time with my adult kids to look at nursing homes, we saw about 22 or 23 nursing homes in the Boston area, and 10 of them were truly appalling. Again, I didn't realize how poor the average nursing home is with regard to the quality of its care. And all of these things can be better prepared for than they were in my case. So I wrote The Soul of Care in part, because it was the kind of book I would have liked to have read before I embarked on 10 years of such a troubling and difficult journey.

Nathaniel Chin: If you don't mind me asking one more question, Dr. Kleinman, you write in your book that care is a fundamental and universal feeling. You actually group it with other feelings such as pain, suffering and joy. And do you feel that way because it really does represent our relationships with other human beings and how we as a community engage with each other?

Arthur Kleinman: Yes. I think that's a very important point. Thank you for leading me to it at the end. This is the difference between care and caregiving. So you can give care mechanically, you can give it a sort of an institutional bureaucratic way without throwing yourself into it, without really being present fully. When you're present fully, it's caring as well as caregiving. It's the care in caregiving. That care, the taking on the worries about people then caring for them, that is I believe a universal feeling that is as existential to our lives as any, and really it's an elaboration of love. It's an elaboration of the love that we have for others. That's why I believe this is not just an emotion, but a moral emotion. It's an emotion that centers our life. That's why I use the term, The Soul of Care. I wanted to use the idea of soul as an inner feeling of value and emotion tied together, that sort of orientates us, centers us. And I think that's what care is about. It is a crucial part of who we are in relation to others, and as such, it's about as universal as anything you'll find.

Nathaniel Chin: Well, thank you very much for your time, Dr. Kleinman , and we will be posting the link to your book on our website as well.

Arthur Kleinman: Thank you. And thanks for the interview. Good interview, and I enjoyed it very much.

Outro: Dementia Matters is brought to you by the Wisconsin Alzheimer's Disease Research Center. The Wisconsin Alzheimer's Disease Research Center combines academic, clinical, and research expertise from the University of Wisconsin School of Medicine and Public Health, and the Geriatric Research Education and Clinical Center of the William S. Middleton Memorial Veterans Hospital in Madison, Wisconsin. It receives funding from private, university, state, and national sources, including a grant from the National Institutes of Health for Alzheimer's Disease Centers. This episode was produced by Rebecca Wasieleski. Our musical jingle is "Cases to Rest" by Blue Dot Sessions. Check out our website at adrc.wisc.edu. You can also follow us on Twitter and Facebook. If you have any questions or comments, email us at dementiamatters@medicine.wisc.edu. Thanks for listening.

Show Notes

Learn more about Dr. Kleinman's book, The Soul of Care: The Moral Education of a Husband and a Doctor, and listen to an excerpt at his publisher's website