Arthur Kleinman on Caregiving

 

BOB ABERNETHY, correspondent: At Harvard University, Arthur Kleinman is a medical doctor, a professor of both psychiatry and anthropology, and the director of Harvard’s Asia Center. Until 2003, life had treated him well. He was widely respected professionally, and he and his wife, Joan, a China scholar, had a happy marriage, with grown children and grandchildren—and then calamity. Joan Kleinman developed a form of Alzheimer’s disease that brought both dementia and blindness. Arthur Kleinman became her caregiver.

PROFESSOR ARTHUR KLEINMAN: It is love. It’s about the fact that you are there. This was the deal you made when you got married. The deal was to be there for that person, them for you. I helped her bathe, helped her dress, helped with feeding, and the feeling I had, I would say, was generally one of empowerment, to my—which was remarkable especially at the onset, that I just felt that as I learned to do the things and did them I felt a hell of a lot better, and I felt I was really contributing. I also felt it was self-strengthening in some way. It reaffirmed my love and my commitment to her, and over time, though, I think it drains you emotionally and physically as the requirements get greater, as you have to help your spouse out of bed, take them to the bath, make sure that they are safe in getting into the bath, getting out. You are constrained as the other person really begins to disintegrate in front of you, so my wife’s dementia led to a delirium in which not only didn’t she recognize me and the like, but she would be at times incoherent, flailing wildly, very paranoid about me and others because of the sense she couldn’t see and couldn’t understand what was happening.

post02-kleinmanABERNETHY: But Kleinman says his wife’s essential personhood did not disappear.

KLEINMAN: The memory may go. They may not recognize who you are, may not remember from minute to minute what you said. But you can still see, in the way they respond to you, feelings, deep feelings that represent the fact that they know you’re important in their life even though they’re not quite sure whether you’re the husband or the son or what your name is and the like.

ABERNETHY: I asked, did you ever feel angry?

KLEINMAN: Yeah, absolutely, and I think that anyone who says that they’re not angry in a situation like this at times is not fully honest.

ABERNETHY: But there was a feeling much stronger than anger.

KLEINMAN: I think it’s the sadness, the sense of a deepening despair—that you realize that this is not going to go away. This is going to get worse. You realize that this is a terminal illness.

ABERNETHY: As Dr. Kleinman balanced his work and his caregiving, he says he found great meaning in the Chinese Confucian tradition he and his wife had both studied.

post03-kleinmanKLEINMAN: The deep commitment to family, the idea that family was central to everything that you did. The respect you have for somebody else—that your own humanness deepens as you engage the humanness of somebody else.

I found that that relationship became increasingly tied to my moral view of things—that I had enormous respect for her, that I felt that it was crucial for me to help her maintain her dignity. There is something remarkable about that feeling of being present with someone else, and I felt that for a long time in our relationship, and I felt that deepen as there were more acts for me to do. It was in the doing that I felt I was a caregiver. Not in thinking about it, not in talking to people about it, but actually doing it. The acts themselves I saw as moral acts.

ABERNETHY: Between the years 2000 and 2050, it’s estimated that the number of people 65 and over will more than double, and the number 85 and over will quadruple. And the longer people live, the more likely they are to suffer chronic diseases, failures of the body and the brain—to need care.

KLEINMAN: We have never seen the situation around the world, not just in the United States, look the way it is. We have left out of our thinking one of the cornerstones of society.

ABERNETHY: Kleinman recalled last year’s debate about health care reform.

post04-kleinmanKLEINMAN: How much attention was given to the nitty-gritty of caregiving, the content of caregiving? I would say almost zero, okkay, almost no attention to that. And yet this is what families are going to face in the future.

ABERNETHY: Because he had bought long-term care insurance, Kleinman was able to hire a home health aide to help when he wasn’t there. He says she was indispensable. But by last summer Kleinman had come to realize that his wife needed more care than he could give. So, reluctantly, he moved her to a nursing home.

KLEINMAN: That was the most difficult thing. That is, that I had made up my mind that I would take care of my wife until the end, and I did it for seven to eight years until a point at which I recognized I couldn’t do it anymore. I couldn’t handle—and I’m a psychiatrist—I could not handle the agitation part of it, where she became so agitated and so distressed, and she really needed a safe place to be, etc., where she would be less paranoid and less threatened by things.

ABERNETHY: But then, new questions: how close to Joan could he continue to be? How often could he visit? How long should he stay?

KLEINMAN: When you’ve been deeply in love with someone for 45 years and greatly enmeshed together, that issue of distance is a recognition that someone is dying, that this is approaching the end, that you yourself are preparing yourself for the end, and I think it’s very difficult. I think it’s very, very difficult. I found it to be extremely, extremely difficult.

Editor’s Note: Joan Kleinman died on March 6, 2011. She was 71.

Video clip of Arthur Kleinman teaching the Harvard Extension School course “Health, Culture, and Community” is provided courtesy of the Harvard Extension School. Copyright 2010, President and Fellows of Harvard College.

  • B. James

    I concur with Dr. Kleinman’s remarks in full based on 10 years of almost identical expereince with my precious mother. My comments and feedback are presented parehthetically.

    Dr. K : It is love. It’s about the fact that you are there.The deal was to be there for that person.
    reply:
    ( It took awhile, but one day I realized my mother could not help her condition… she was helpless, blameless. In an instant I changed my perception to that of a genuine caretaker . As a person on the outside of her illness, I stepped into her reality and analyzed things from what must have been her point of view. Caretaking became a joy ;no more frustration of battling to bring mother back from her own abyss. I wanted to and did do everything possible :hands on, 24/7 until the single last week of her life – hospitalized and ready to return home until she was beset by pneumonia..contracted in the hospital, no less!)

    Dr. K – About caretaking
    I felt better, and I felt I was really contributing. I also felt it was self-strengthening in some way.

    reply:
    (There was great relief in homecare:
    Financial: There are added costs , but far less than costs of “private pay-subsidized or insurance for
    agency+ facility services.
    Grief/guilt /worry: is eliminated by knowing the level of care and protection is 100% when patients stay home.)

    Dr.K -Caretaking attitudes
    I found that that relationship became increasingly tied to my moral view of things
    I had enormous respect for her, that I felt that it was crucial for me to help her maintain her dignity

    reply
    ( This is the key to caretaking. Keep it simple, altruistic and positively/morally dignified. I had a few key questions to guide my caretaking. Is my “patient” safe? Is my “patient” comfortable? Is there anything else to do or not to do? The best caretaking derives from being with the patient- physically present… to talk, to watch TV, to go to lunch together, to allow them to feel safe and included, instead of abandoned or out of sight. “Hands on personal care” is best given by family – assisted with paid or community service help. I hired part time students or housekeepers for routine chores: cleaning, shopping, meals etc. I there full time if anyone other than trusted family was in the house.)

    Mr.Abernethy : looking to the future
    Between the years 2000 and 2050, it’s estimated that the number of people 65 and over will more than double, and the number 85 and over will quadruple

    reply
    ( How will families or infrastructure/agencies/ payers or professionals ever manage this crisis, let alone, do it well?
    The answer is incomprehensible. The costs are now and will always be, without question,untenable!)

    Dr. K W
    With regard to healthcare system + reform:
    How much attention was given to the nitty-gritty of caregiving, the content of caregiving? I would say almost zero, okkay, almost no attention to that. And yet this is what families are going to face in the future.

    reply
    (Palliative homecare will be the norm. And we must be ready to embrace it. Astute, loving family members will be the salvation for loved ones. Pulling together, scheduling compatible volunteer hours, pooling of family time, talent, and funds are the only answers I can think of- since there are too many pitfalls with outside interventions. I fear the horror stories now on the news about elder care in general will increase exponentially. The home care alternative is attractive but it takes a village made of family. Attitudes and cooperation must flourish on behalf of the dependent person).

  • B Rux

    Hi Dr. K–I saw your discussion of caregiving very early this AM on PBS…everything that you said I understood–and you expressed it very well. I’ve been taking care of my husband for 6 years. He has AD which began with primary progressive aphasia. There are so many stages that I went through–sometimes knowing and sometimes not…For the past year my husband has been in assisted living for AD; the environment has been better for him. It was, indeed, the hardest decision, but one that had to happen. Thanks for giving such a clear and human portrayal of caregiving. I’m in a support group and will share this with the group.

  • patricia vann

    caregiver fatique….im the single mother of a severly handicapped 25 yr old daugher and 23 yr old twins. ive taken care of my daughter all her years…day in day out feeding and diapering. im exhausted. there is no balance. every ounce of energy i have i spend caring for her and my animals…in the end i am damaging myself…i dotnt sleep well, i smoke and drink way too much. its just me, no one to talk to, no one to help, i wonder if my twins experience with me and their sister has caused them to relinquish their babies becuase its all too much? i just need someone to talk too, thank you for your broadcast, i love pbs.

  • E. Thomas

    The interview with Dr. K was so moving, insightful and valuable in these days when more of us are on the verge of assuming care-giver status as a close family member is diagnosed with some form of dementia. Assuming the role, actually the lifestyle, is daunting. On the one hand you negotiate various stages of denial and reluctant acceptance. As you avoid burdening others, you second guess your ability to fulfill the caregiver responsibility alone.
    To see a loved one deteriorate mentally is as challenging as it gets. Your shared quality of life is forever altered. Physically your loved one may be there, but you must now stand by and see him or her slowly lose the essence of who they were. And, yet, in a masked blessing, they don’t suffer observing the difference as you do. How opposite Steven Hawking this is, as his physical life is curtailed, yet his brilliant mind flourishes. He, too, is a courageous role model for us all.

    Thank you PBS and Bob Abernathy for covering this subject on your program “Religion and Ethics”, and especially to Dr. Kleinman for so candidly addressing your own personal encounter with this reality of our human condition.

  • B Grange

    I admire the loyalty, love and patience Dr. Kleinman was able to maintain in the situation. I do think that these at home care situations can work for the retired or the affluent. Middle or lower class folks will not fare as well. As a caregiver to my disabled mother I have been unable to keep this promise of loyalty. My mother suffered brain damage during a surgical procedure five years ago. My late father provided her with good health insurance, a paid off mortgage and a pension. However, long term care insurance was not even thought about – nor considered affordable prior to the illness.

    After three months of living together in her home and sending her to adult day care during the day, we decided it wasn’t going to work. Mom was faking illness to get me to stay home from work. She disliked the day care enough to be untruthful. Being 39 at the time, I was no where near retirement. I painfully decided to put her in a nursing home.

    I have guilt everyday about my decision, but there is no way I could have kept my self employed and cared for her. My mental health surely would have suffered more if I continued to be the “super-son”. On the bright side, Mom has some freedoms at the home she wouldn’t have living with me. She has made new friends and is more social than she ever could be living solely with me. The down side is watching my parents life savings dwindle to nothing, and knowing even with all the hardships we have faced already, the worry of not being accepted into Medicaid upon her bankruptcy hovers over the situation like a dark stormy cloud.

  • Diane Lou

    What insightful comments. Thank you. I recently helped care for my 53-year-old son-in-law who was diagnosed with stage 4 stomach cancer and died 3 months later. My heart and extreme admiration goes out to anyone who can sustain that kind of care for years.

    That said, I feel my life changed while caring for Bill. I had always avoided such unpleasant situations, but to help my daughter and grandchildren, I didn’t. He and I had never been especially close, but our talks reached levels of heartfelt honesty that were new to me..and I think to him as well. I watched his body suffer and waste away, but I watched his person and mine heal and grow. I started to understand how hospice nurses do their saintly work, and it was truly transforming to move inside another’s suffering, to help ease it ,and comfort them and move them past their fear while facing our own.

    Sad as it all is, watching a loved one decline and die brings gifts of new awareness and new acceptance of what is.

  • Preet Lamba

    Thanks PBS for sharing this. The caregiver becomes the most important person. The dependent person needs affection, feeling of involvement, appreciation, trust, and comfort. Isolation will not work. However as days go by the person will become irritable and loose their character. It is best to look after the person at home and only when extremity strikes to send to a home or go for hospitalization. At times the dependent person might seem to be feigning their symptoms but this is only the onset of the condition. The caregiver will have some psychological implications and stress.

  • trish

    Caring for my elderly mother esp after my father’s death has been extremely destructive to our relationship. I canno longer help her as she asked me to leave her home and hung up on me on the phone. However I know she needs help yet …..what am I to do?

  • Victoria

    My experience with taking care of my father is that what he can and can’t do, and how in touch with reality he is, is completely unpredictable.

    It sucks when paid caregivers talk about him, when he can hear them, about his condition etc, as if he isn’t in the room, even when his eyes are closed and he seems out of it, sometimes he isn’t, and he knows. Please, never do this.

    It sucks that caring for my dad makes my daily life so completely different from most other grown folks that i come into contact with.

    Way more family and friends should be helping to take care of someone who would otherwise be in a nursing home etc.

    I have sacrificed much of my life, and my son’s life (he is 6), because he and i live with my father, and much time that i would spend with my son, is taken up because my father has unexpected needs. But, there is no other life path i could have chosen that could be a better example to my son.

    Hospice has been wonderful, most of the time. But, the best is someone who really knows the ill person’s habits and history. This has never been a doctor, in my dad’s case.

    He got worlds better when we took him off of his prescriptions and changed to natural alternatives: cranberry and probiotics for urinary infections instead of a permanent antibiotic.

    Taking care of a grown person who can’t do it, isn’t any more or less moral than taking care of an infant. it’s just hard emotionally. instead of hope for the future, there is the inevitable marching towards death. but, that is what we are all doing anyway.

    What matters are all the moments in between. I am grateful for all the ways I get to spend time with my dad, even the ones that seem weird. Jesus washed feet after all.

  • Dan Zeorlin

    The dynamic involved is larger than just the new relationship between caregiver and care-receiver. The new normal (whatever that may become) isn’t only about losses and changes for these two individuals.

    The most disturbing fact is we treat people differently whenever caregiving becomes heightened. If this means an improved delivery of care then marvelous; however most likely this will results in public removal of dignity from the human persons.

  • CaregiversUSA

    Caregiving for someone with memory loss is extremely stressful and can be emotionally and physically draining. Asking for help when caring for a loved one with Alzheimer’s or Dementia can help caregivers prevent burnout, and alleviate stress. Medical adult day cares such as Active Day http://www.activeday.com offer a safe and secure environment for your loved one and respite for you, five days a week, eight hours a day. Adult day cares are much more cost effective than many other health care alternatives plus they offer health care supervision, socialization, community outings, therapeutic programming, meals and transportation.