By Judith Graham December
5, 2019
Caring
for someone with a serious illness stretches people spiritually and
emotionally, often beyond what they might have thought possible.
Dr.
Arthur Kleinman, a professor of psychiatry and anthropology at Harvard
University, calls this “enduring the unendurable” in his recently published
book, “The Soul of Care: The Moral Education of a Husband and a Doctor.”
The
book describes Kleinman’s awakening to the realities of caregiving when his
beloved wife, Joan, was diagnosed with a rare form of early Alzheimer’s disease
that causes blindness as well as cognitive deterioration.
Although
Kleinman’s specialty is studying how patients experience illness, he wasn’t
prepared for the roller coaster of family caregiving. Each time he adapted to
Joan’s changing condition, another setback would occur, setting off new crises
and fueling uncertainty and stress.
During
11 years of caregiving until Joan’s death in 2011, Kleinman learned that no one
who goes through this emerges unchanged. He became less self-centered, more
compassionate and more aware of how the health care system fails to support
family caregivers ― the backbone of the nation’s long-term care system.
I spoke
with Kleinman in mid-November at a caregiving panel. His
remarks below are edited for length and clarity.
About
his book. “I wrote it for a specific reason. I had spent my whole career
as an expert on care. I myself was a psychiatrist who worked with patients with
chronic medical disorders, [such as] chronic pain, diabetes, heart disease, cancer.
I thought I knew it all. A veil of ignorance was raised from my eyes by my
experience as a primary family caregiver.
“What
is that veil of ignorance about? It’s about recognizing just how difficult
family care is for [people with] dementia and, not just dementia, but many
other problems.”
Daily
responsibilities. “Let’s say in the fifth year, what was it like? I would get
Joan up around 6 a.m. and take her to the bathroom. I have to handle the toilet
paper, wash her hands, dress her to work out, take her to the bath and bathe
her.
“I
would shampoo her hair, dry her, pick out her clothes [for the day]. After
that, I would prepare breakfast. As she got increasingly agitated, [that]
became difficult because I had to sometimes hold her hands [to] keep her from
throwing things or getting up and hurting herself. Because she was blind, she
couldn’t see where she was. And then I would help her eat ― usually, at the
end, feeding her ― and then take her to a room where we would sit and listen
quietly to music.
“Maybe
six, seven years into this, I would just sit there and hold her hands. And even
that became difficult. So, I would tell her stories of the past … our stories.
[Editorial note: This is just the beginning of a day full of similar tasks.]
“I
discovered early on that the ritualization of acts of caring ― the dressing,
bathing, all these things ― is a way of habit formation that keeps you going.”
Challenging
masculinity. “We had a great relationship, but it was asymmetrical. For 36
years, my wife took care of me. I was raised as a classical male in the 1940s.
When I showed an interest in cooking, my grandmother said to me, ‘What are you,
a sissy?’ I was a tough kid on New York [City] streets. I had the most
unpromising beginnings to be a caregiver. And my wife slowly socialized me to a
different kind of masculinity, to be able to care.
“[Pay
family members for caregiving] and you’ll see more men do it. Go to Australia,
for example, where there’s very good compensation for care, and you’re astonished
at the number of men who are caring for children, who are caring for elderly,
and the like.”
Asking
for help. “I have a wide circle of friends and colleagues, and [after the
book] many of them said they had never realized what was involved. Part of that
was my fault. I had a lot of trouble asking for help. Actually, at one point, I
so exhausted myself that my kids, who are great, said, ‘You really need
assistance.’ And they stepped in, as did my mother. My mother, who at the time
was in her 90s.
“So, I
had a great system of care around me, but I [also] needed a home health aide to
[help with Joan and] keep myself going. I found an Irish woman … and she was
fabulous.”
Maintaining
presence. “In spite of that, I found it extraordinarily difficult in
terms of other elements of care, one of which is presence. To keep your
liveliness, your love, the presence of who you are going while you’re doing all
this work of caregiving ― it is extremely difficult and demanding, but it’s
crucial.
“When
people ask ‘Why do you do [this]?’ the answer of most family caregivers I’ve
spoken to is ‘Well, it was there to do. It’s got to be done, [so] you do it.’”
Learning
about failure. “I was fortunate in life; I had a golden career. I have a
personality that is like a bulldog, and when I start something I finish it. But
there’s no finishing care. Every one of us [family caregivers], if we’re
honest, you fail at a certain point. The frustrations build, anger mounts, you
control your anger so you don’t injure the person you’re caring for. But you’ve
got to somehow handle it inside you.”
The
soul of care. “I think what lies at the soul of care is a form of love. You
will do everything you can for another because they mean so much to you. [But]
it is also problematic, because we all have complex relationships and we’ve got
other things going on in our lives.
“We
endure, we learn how to endure, how to keep going. We’re marked, we’re injured,
we’re wounded. We’re changed … [in] my case, for the better. If you had known
me before my 11 years of care, you wouldn’t recognize me today. I was your
classical hard-driving Harvard professor … as tough as any other professor at
Harvard Medical School.
“I’ve
redeemed myself through this experience, in a way.”
A call
for change. “How do we strengthen caregiving? How do we do those things
that will make it recognized as important as it is? It’s going to take a
radical rethinking. Our health care system [is focused on] entirely the wrong
issues. Economics is not the most central aspect of care; it’s caregiving.
“Do you
know not a single one of the senior neurologists I went to with Joan who wanted
to do everything diagnostically made the recommendation ‘You want to think
about a home health aide now, even though you don’t need it right now. You have
to look into how you’re going to reconfigure your house [for] someone who’s both
blind and with dementia. [Or] a social worker is a great navigator of what the
health care system is about. You want to take advantage of that.’
“So,
this is where I believe that our whole health care system has got to be
rethought, from the bottom up with attention to care at its core.”
We’re
eager to hear from readers about questions you’d like answered, problems you’ve
been having with your care and advice you need in dealing with the health care
system. Visit khn.org/columnists
to submit your requests or tips.
Judith
Graham: khn.navigatingaging@gmail.com,
@judith_graham
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