June 23, 2020 • 23 mins
A psychiatrist and medical anthropologist, who became his wife’s primary caregiver after she was diagnosed with early-onset Alzheimer’s, shares what he’s learned about the transformative experience of caring for those who are too ill to take care of themselves.
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Speaker 1 (00:07):
I'm Danny Shapiro, and this is the Way we Live Now.
Today is day one five since talking to lots of
tiny heads on our computer has started to feel almost normal,
and d A fifty one of this podcast. You know,
hosting this daily podcast is well, it's a lot of work,
and I already have a couple of full time jobs.
(00:29):
Sometimes I wonder if I should keep it up. And
then I get to have a conversation like today's with
yet another extraordinary human being, Harvard Professor Arthur Kleinman, one
of the most renowned and influential scholars and writers on psychiatry, anthropology,
global health, and cultural and humanistic issues in medicine. Arthur,
(00:55):
thank you so much for joining me to talk about
the way we live now. A pleasure to be here.
So I started this podcast a couple of months ago
because I sensed that within the COVID induced isolation, many
of us are longing for more connection, for windows into
each other's lives. In that spirit, could you share with
(01:15):
us where you are right now while we're having this conversation,
and what are you surrounded by and what are you
looking at. I'm in my house in Cambridge and I'm
looking at into the garden that at the beautiful late spring,
early summer flowers and big trees, And on one side
of me is a filled bookshelf, and on the other
(01:38):
side is a computer. Mhmm. That sounds familiar. Um. Your
most recent book, which I just devoured and absolutely loved,
is called The Soul of Care, and it chronicles, as
the subtitle so aptly puts it, your moral education, both
as a husband and as a doctor. And I was
(02:01):
so struck reading it by a through line in the
book that of the profound benefits of being in the
room in the homes of your patients, as was true
for you as a boy, when your own pediatrician, Dr
Ben would make home visits for you. And I'm wondering
now that we're in this era, hopefully temporary, of telemedicine
(02:26):
and of doctors being completely unable to touch patients, I
wonder if you have any thoughts about that. My view
is that care is all about touch. It's about being
there with your presence. It's about the quality of relationships. Actually,
if you if you think about it, all the places,
the hospitals and nursing homes, the systems have claimed that
(02:49):
they have high quality care. UM, none of them measure
the quality of care, because if you had to measure
the quality of care, you have to measure the doctor
patient in their patient relationship, the quality of communication, the
whether position, and the nurse is able to listen intensely
(03:10):
and witness and respond and give answers that are clear
and effective and follow up and show that they have
presence that they're just not going through the motions mechanically.
All those things are central to what care is, and
we don't measure any of them. And so that you
give us an idea right away that the health care
(03:33):
system is really not about air. It's about institutional efficiency,
in which large organizations like hospitals a substitute institutional efficiency
that how many patients move through a system at what
are what rates with what kind of outcome That substitutes
for the quality of care. So I'm very interested in
(03:57):
the quality of care and seeing it improve. And in
my life time, I think I've seen greater constraint and
hedging around the ability of doctors and nurses to give care. UM.
Look at the way today doctors are, as you as
you put it, are all bundled up as their nurses
in their protective here, which they have to be, and
(04:19):
in the hospital setting are hesitants and indeed often there's
a protocol suggesting they don't touch patients if it's unnecessary.
The fear of the COVID virus, and that's setting. You
still hope that the humanness of the experience will get through,
but it's not so easy. And if you think about
just the change in times since I was a beginning
(04:41):
medical student in nineteen sixty two, UM. At that time,
medicine was much more a practice of people being together
and sorting out problems. And today technology which should and
I believe will ultimately contribute to improved care, actually gets
(05:03):
in the way of care. And my colleague, a tool
of Guandi, has written a lovely piece in a New
Yorker about half a year ago pointing out how frustrating
the electronic medical record is for doctors. That's why their
backs turned to patients. That's why they are constantly looking
at the computer screen because it's so difficult to use.
(05:23):
It wasn't made for for caregiving, but it could be.
And so we have a situation in which there are
many things working against good care. If you look at
the data from medical schools. There's there's a surprising and
dismaying finding, which is that graduating medical students are worse
(05:44):
than incoming medical students on all the measures of care,
from taking the history to being more human with patients.
That's a terrible UH critique of what medical education is about.
At the same time, it's loading doctors up with information
about science and technology, it is destroying something that they
(06:09):
already bring in, which is the quality of their interpersonal relations.
The implication in that is that somehow the capacity for
or the ability to empathize or have compassion is reduced
over those years out of just sheer pace and exhaustion
and the institutional system. Yes, exactly, so that there's something
(06:31):
actively disabling in the training of doctors that moves them
away from UM their ability to be human with others. UM.
You know, most of us are socialized to be effectively
human in our relations with us. We not talk to people,
were not empathize, we don't have compassion, etcetera. And medical
(06:51):
students show this otherwise they wouldn't get into medical school.
And yet something happens to them in the course of care.
And I think that insidious and awful UH process is
not just limited to medical school. It's found in hospitals
and large clinics, it's in our health care system. And
(07:13):
it is kind of an an equivalent to what we're
so concerned about today, which is institutionalized racism. This is
a kind of an institutionalized anti human nous that is
found in many domains, and I think reflects a failure
of centering ourselves on the values we've always taken to
(07:38):
be central to medicine, which is the value of doing
good in the world, of helping people, of being connected
to others. And you know, in our society, where such
a radically libertarian society with the idea that the individual
is the key to everything and the individual raised herself
(07:59):
or himself up themselves, that's all nonsense. You know, We're
all inseparable from social networks, and those networks are critical
in care. And so we we learn things since we
look carefully at care, that are that are very surprising
and very disturbing. For example, we discover a very good
report on this by the National Academy of Medicine called
(08:21):
Families Caring for an Aging America. We discover that surgeons
and surgical nurses often don't effectively convey what the aster
care situation will be like for older patients getting surgery.
And so when those older patients return home to their families,
they may have drains coming out of their abdomen, and
(08:44):
no one has told the family to be prepared for
drains coming out of the abdomen. So the family is scared, stiff,
doesn't know what to do, is afraid to tell infect
the patients. And that is an example you could just
cite a thousand times. The failure in connecting and worrying
about and caring for That's all part of what caregiving
(09:05):
should be about. And we have the paradox in America
today of care of caregiving in the absence of care.
And I think that's what I wrote against. I wanted
to see that changed and and critique. And that's why
The Soul of Care is a story not just about
our system, but illustrated by my own personal experience. UM
(09:29):
I was not destined to be a caring family, care
and or a caregiver. I grew up in a in
New York City and the socialized in nteen forties and fifties,
and was a rough kid who was on his way
probably to delinquency. And had very few of the of
(09:49):
the ideas and values about the importance of caring for
myself and caring for others. And I learned that in
the us of a wonderful marriage to my late wife
John who we were married for forty six years, and
for thirty six of those years she took care of me,
and then I took care of her for ten of
(10:10):
the years as she battled with a horrible disease, early
onset Alzheimer's disease. That was the most moving part of
your book revolving around that decade. Well, two things. First,
that you introduce us to Joan and we really get
to know her. We get to know her as you
(10:32):
know in the full flower of her humanists and her life.
And then you write really deeply into the decade where
you become her primary caregiver. Can you speak about some
of what you learned during that time? You know, I
also one of the reasons why I wanted to have
you on this show is that I think that we
(10:52):
are all in a moment of collective really global suffering
and isolation and and trauma. And I know that you've
written a bit about some of what you learned during
that time, which was also tremendously isolating and um where
there was a lot that was traumatic and difficult going on. Yeah, sure,
(11:17):
I'm happy to respond to that. You know, UM chronic care,
IM my expertise is in the area of chronic illness.
Chronic care care for people have chronic diseases, who have
neurodegenerative diseases or post stroke, or have dementious like Alzheimer's disease.
UM it is it is a matter of how you endure,
(11:40):
how you keep going through periods that are get worse
and worse. These are progressive diseases, usually to get worse.
Sometimes they get better if it's UH disease like asthma,
diabetes or hypertension. But for most of them, over time,
as people aged, they it these are getting worse, these disorders,
(12:02):
and you've got to be with people. And in the
area of dementia, they get worse in the worst of ways,
where people not only lose their memory and sense of self,
but become delirious, psychotic, m incredibly h difficult to care for.
These are people like my wife, who are the most
(12:24):
wonderful of personalities and the most supportive of people, become
incredibly difficult to care for. How do you keep going?
How do you keep going? And in a setting like that,
I think an amazing number of family cares friends, family
do keep going and my concerns how do they do that?
(12:44):
And I think that is where care morally transforms us.
We learn how to be human, how to be present,
even in settings where it's very hard to be that way.
We learned to do that by bringing ritual to our lives,
by organizing habits that get us through the day, by
(13:04):
learning how to be with people when they're in a
terrible shape and keep going, keep our hope up. Hope
is no longer that things are going to be cured
or that the future is going to end up with
a positive outcome. No, the outcome is going to be
the same as it would have been anyway. But how
(13:26):
you handle it and how you deal with the person
who you're caring for that makes the world of difference.
That's that's the difference between feeling that you've had a
purposeful life and which you've done the things that were
right to do, and feeling really good about that, as
opposed to feeling helpless and hopeless and and lost, as
(13:50):
it were in the world. And so I'm very impressed
by the by the actually scientific evidence which shows that
the family cares do have more psychology, logical, and physical
problems because caring takes so much out of us, but
also end up with more of a sense of a
purposeful life, that they've done something of meaning that they've
(14:11):
been able to not just get through life with someone else,
but do something that they felt was good and important
and valued, etcetera. Well, I think all of that is
about the way we live our values in our life,
and I think you can through care, do you think
we live a certain kind of value which is very
very important. It was important to me, and it was
(14:33):
crucial it turned out to my ability to keep going.
And I think that's one of the most interesting things
we we talked about in family cares or even professional cares, burnout,
because there's a lot of burnouts. But actually it's not
burnout that's so interesting. It's how do we keep going?
How do we endure? And by endure, I don't mean
(14:54):
that that all the time it's a down here, it's terrible. Um,
we endure with moments of joy and happiness and and
and good things happen along with the fact that ultimately
the outcome is not going to be so good. But
the way that we keep going, that we we help
us to keep going, is something that you carry over
(15:15):
into the rest of your life. And for me, my
wife died in two thousand eleven, and for me, I
carried over many of those things into the years subsequent
to that. Became more fully myself. I felt felt it
at any other time in my life, and a lot
of the lessons I learned are actually been very helpful
in self isolation during the COVID nineteen pandemic. Yeah. That
(15:41):
that that makes so much sense to me, because I
think so many of the conversations I'm having with people
are I think people are finding that they are coming
to know themselves. You know, that we are coming to
know ourselves better in or or what we're made of. Um.
I I always end these interviews with the question what's
(16:04):
bringing you hope? Which I'm gonna ask you in a minute.
But I spoke a couple of weeks ago to Galen Gingrich,
who's the senior minister at All Souls Unitarian Church in Manhattan,
And when I asked Galen what was bringing him hope?
He he said, you know, I didn't know I had
I have all these practices and I have this spiritual life,
but I didn't know who I would be really, you know,
(16:29):
in the earthquake, in the burning building, in the extreme circumstance.
We never know who we're going to be until we're there.
And I think that that was something I really felt
in your book and that you're describing now. Was that
sense of becoming um the person in a deeper way
that you hadn't known that you were or that you
could be, even though you had spent your life caring
(16:51):
for others. Yeah. Absolutely, And of course there's no you know,
this is not like a movie, and it's not like
it ends when you're you've had a again to something.
They're really in this story. There are no monsters, and
they're no heroes. This is about getting through life and
being and being in life in such a way that
you have a way of proceeding forward. And maybe this
(17:14):
is the answer to your idea about what is hope.
A way of proceeding forward in which you feel that
you are yourself, you are who you are, and and
you've come to recognize that you've made yourself into something
that is valuable and that lives your values. So you know,
(17:35):
we're a custom in our society to have people talk
about what their values are. But um, I think what
you learn and caregiving is the values and not what
you talk about. Uh, they're what you do. They are
your daily doing. And I think that that's what taking
care of yourself as much as take care of anyone else's.
It's your it's you're doing, it's you're going through, it's
(17:58):
your becoming. I think that's constant, and it doesn't end.
I think that for a caregiver, it doesn't end with
the I can definitely assure you this with the death
of the person you're caring for, because it continues. In
the Caring for Memories, I spend a fair amount of
time in the book on the idea of the caring
for memories, because that's so much of your life after
(18:19):
someone passes, and not not just by the way a
family member has. The caring of memories. Physicians and nurses
and social workers and other health providers know very well
and remember quite well stories, the stories they've gone through
of caring for others, and they order those and rethink
(18:42):
them and use them to supply their life with a fullness,
and I think it's that fullness, that sense that that yeah,
you know, I've I feel that my presence, that it's there.
I think that's the greatest gift to the caregiver, that
(19:03):
you've been present and you know how to be present,
and you can be present for yourself. You know. I'm
a psychiatrist as well as an anthropologist, and so many
of us, in my experience, treat ourselves poorly. We have
a way of treating others, and then when we deal
with ourselves, we tend to be tougher, inattentive and the like.
(19:25):
I think over time you get to understand that your
life has, even in the midst of the most difficult
kind of care you could imagine, has a kind of
beauty to it as sort of moral fullness, a sense
of of moving in a direction that's good for you
(19:47):
and good for others. And I think there's no um
that that is hope. That's the hope, uh that keeps
you moving. It's there to do, and you do to
it and you keep doing it. And that's one of
the things that impressed me the most. Speaking with many
family caregivers for patients with Alzheimer's, disease UM who I
(20:12):
met John and I met them along the course of
her illness. Um that they'll tell you that they're up
against the wall. They feel the latest problem, someone who
can't remember them, or has a syndrome in which they
think that they're an impostor, or becomes terribly upset. It
(20:34):
looks like it's a wall. You can't get over this,
And then all of a sudden they find they can
get over it, they can do the things that need
to be done. And what what enables that to happen.
It's the love you have, It's the it's the the
care you want to give the other person and that
person's need for it and also their expressed desire for
(20:56):
it that carries you forward. So my own feeling is
the caregiving is the most important thing in life. That
it runs from caring about who you are in your
world to giving care to others. And that when we
are in this and overwhelmed by it and find it unendurable,
(21:19):
we don't realize at the end that a gift is
being given to us. The gift is that you're going
to come out of this and you're going to have
the sense of purpose and and fulfillment. Now. Now that
means that not make up for the terrible loss of
someone you love, um, but it's a it's a strong
and abiding feeling that I think makes the rest of
(21:42):
life um Uh, what's the right word. I'm not sure
I was gonna say easier. It doesn't make the rest
of life easier, but it makes the rest of life
more filled with a sense of um of your your
accomplishing work on the self and on others that has
(22:03):
made you more cultivated and better and has made others
that way. M Arthur, that's really beautiful. Thank you so
much for taking the time to to talk about this
with us today. I really appreciate it. On my pleasure,
and I hope your listeners will want to read the
Soul of Care because I put just about everything I
(22:25):
have in me into it. Thanks for listening to the
way we live now, tell us the way you're living
now we want to hear call us on. You might
want to a pen for this nine O nine one
three eight that's nine O nine seven one three eight
(22:48):
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just use it on the pod. Also, you can join
our Facebook group at facebook dot com. Slash groups slash
the Way We Live Now pod. We are creating a
community here and we would love for you to join us.
You can find me on Instagram at Danny Ryder. The
Way We Live Now is a production of I Heart Radio.
(23:10):
It's produced by a Low Brulante. Bethan Macaluso is executive producer.
Special thanks to Tristan McNeil and Tyler Klang. For more
podcasts from I heart Radio, visit the iHeart Radio app,
Apple Podcasts, or wherever you get your podcasts.
I'm Danny Shapiro, and this is the Way we Live Now.
Today is day one five since talking to lots of
tiny heads on our computer has started to feel almost normal,
and d A fifty one of this podcast. You know,
hosting this daily podcast is well, it's a lot of work,
and I already have a couple of full time jobs.
(00:29):
Sometimes I wonder if I should keep it up. And
then I get to have a conversation like today's with
yet another extraordinary human being, Harvard Professor Arthur Kleinman, one
of the most renowned and influential scholars and writers on psychiatry, anthropology,
global health, and cultural and humanistic issues in medicine. Arthur,
(00:55):
thank you so much for joining me to talk about
the way we live now. A pleasure to be here.
So I started this podcast a couple of months ago
because I sensed that within the COVID induced isolation, many
of us are longing for more connection, for windows into
each other's lives. In that spirit, could you share with
(01:15):
us where you are right now while we're having this conversation,
and what are you surrounded by and what are you
looking at. I'm in my house in Cambridge and I'm
looking at into the garden that at the beautiful late spring,
early summer flowers and big trees, And on one side
of me is a filled bookshelf, and on the other
(01:38):
side is a computer. Mhmm. That sounds familiar. Um. Your
most recent book, which I just devoured and absolutely loved,
is called The Soul of Care, and it chronicles, as
the subtitle so aptly puts it, your moral education, both
as a husband and as a doctor. And I was
(02:01):
so struck reading it by a through line in the
book that of the profound benefits of being in the
room in the homes of your patients, as was true
for you as a boy, when your own pediatrician, Dr
Ben would make home visits for you. And I'm wondering
now that we're in this era, hopefully temporary, of telemedicine
(02:26):
and of doctors being completely unable to touch patients, I
wonder if you have any thoughts about that. My view
is that care is all about touch. It's about being
there with your presence. It's about the quality of relationships. Actually,
if you if you think about it, all the places,
the hospitals and nursing homes, the systems have claimed that
(02:49):
they have high quality care. UM, none of them measure
the quality of care, because if you had to measure
the quality of care, you have to measure the doctor
patient in their patient relationship, the quality of communication, the
whether position, and the nurse is able to listen intensely
(03:10):
and witness and respond and give answers that are clear
and effective and follow up and show that they have
presence that they're just not going through the motions mechanically.
All those things are central to what care is, and
we don't measure any of them. And so that you
give us an idea right away that the health care
(03:33):
system is really not about air. It's about institutional efficiency,
in which large organizations like hospitals a substitute institutional efficiency
that how many patients move through a system at what
are what rates with what kind of outcome That substitutes
for the quality of care. So I'm very interested in
(03:57):
the quality of care and seeing it improve. And in
my life time, I think I've seen greater constraint and
hedging around the ability of doctors and nurses to give care. UM.
Look at the way today doctors are, as you as
you put it, are all bundled up as their nurses
in their protective here, which they have to be, and
(04:19):
in the hospital setting are hesitants and indeed often there's
a protocol suggesting they don't touch patients if it's unnecessary.
The fear of the COVID virus, and that's setting. You
still hope that the humanness of the experience will get through,
but it's not so easy. And if you think about
just the change in times since I was a beginning
(04:41):
medical student in nineteen sixty two, UM. At that time,
medicine was much more a practice of people being together
and sorting out problems. And today technology which should and
I believe will ultimately contribute to improved care, actually gets
(05:03):
in the way of care. And my colleague, a tool
of Guandi, has written a lovely piece in a New
Yorker about half a year ago pointing out how frustrating
the electronic medical record is for doctors. That's why their
backs turned to patients. That's why they are constantly looking
at the computer screen because it's so difficult to use.
(05:23):
It wasn't made for for caregiving, but it could be.
And so we have a situation in which there are
many things working against good care. If you look at
the data from medical schools. There's there's a surprising and
dismaying finding, which is that graduating medical students are worse
(05:44):
than incoming medical students on all the measures of care,
from taking the history to being more human with patients.
That's a terrible UH critique of what medical education is about.
At the same time, it's loading doctors up with information
about science and technology, it is destroying something that they
(06:09):
already bring in, which is the quality of their interpersonal relations.
The implication in that is that somehow the capacity for
or the ability to empathize or have compassion is reduced
over those years out of just sheer pace and exhaustion
and the institutional system. Yes, exactly, so that there's something
(06:31):
actively disabling in the training of doctors that moves them
away from UM their ability to be human with others. UM.
You know, most of us are socialized to be effectively
human in our relations with us. We not talk to people,
were not empathize, we don't have compassion, etcetera. And medical
(06:51):
students show this otherwise they wouldn't get into medical school.
And yet something happens to them in the course of care.
And I think that insidious and awful UH process is
not just limited to medical school. It's found in hospitals
and large clinics, it's in our health care system. And
(07:13):
it is kind of an an equivalent to what we're
so concerned about today, which is institutionalized racism. This is
a kind of an institutionalized anti human nous that is
found in many domains, and I think reflects a failure
of centering ourselves on the values we've always taken to
(07:38):
be central to medicine, which is the value of doing
good in the world, of helping people, of being connected
to others. And you know, in our society, where such
a radically libertarian society with the idea that the individual
is the key to everything and the individual raised herself
(07:59):
or himself up themselves, that's all nonsense. You know, We're
all inseparable from social networks, and those networks are critical
in care. And so we we learn things since we
look carefully at care, that are that are very surprising
and very disturbing. For example, we discover a very good
report on this by the National Academy of Medicine called
(08:21):
Families Caring for an Aging America. We discover that surgeons
and surgical nurses often don't effectively convey what the aster
care situation will be like for older patients getting surgery.
And so when those older patients return home to their families,
they may have drains coming out of their abdomen, and
(08:44):
no one has told the family to be prepared for
drains coming out of the abdomen. So the family is scared, stiff,
doesn't know what to do, is afraid to tell infect
the patients. And that is an example you could just
cite a thousand times. The failure in connecting and worrying
about and caring for That's all part of what caregiving
(09:05):
should be about. And we have the paradox in America
today of care of caregiving in the absence of care.
And I think that's what I wrote against. I wanted
to see that changed and and critique. And that's why
The Soul of Care is a story not just about
our system, but illustrated by my own personal experience. UM
(09:29):
I was not destined to be a caring family, care
and or a caregiver. I grew up in a in
New York City and the socialized in nteen forties and fifties,
and was a rough kid who was on his way
probably to delinquency. And had very few of the of
(09:49):
the ideas and values about the importance of caring for
myself and caring for others. And I learned that in
the us of a wonderful marriage to my late wife
John who we were married for forty six years, and
for thirty six of those years she took care of me,
and then I took care of her for ten of
(10:10):
the years as she battled with a horrible disease, early
onset Alzheimer's disease. That was the most moving part of
your book revolving around that decade. Well, two things. First,
that you introduce us to Joan and we really get
to know her. We get to know her as you
(10:32):
know in the full flower of her humanists and her life.
And then you write really deeply into the decade where
you become her primary caregiver. Can you speak about some
of what you learned during that time? You know, I
also one of the reasons why I wanted to have
you on this show is that I think that we
(10:52):
are all in a moment of collective really global suffering
and isolation and and trauma. And I know that you've
written a bit about some of what you learned during
that time, which was also tremendously isolating and um where
there was a lot that was traumatic and difficult going on. Yeah, sure,
(11:17):
I'm happy to respond to that. You know, UM chronic care,
IM my expertise is in the area of chronic illness.
Chronic care care for people have chronic diseases, who have
neurodegenerative diseases or post stroke, or have dementious like Alzheimer's disease.
UM it is it is a matter of how you endure,
(11:40):
how you keep going through periods that are get worse
and worse. These are progressive diseases, usually to get worse.
Sometimes they get better if it's UH disease like asthma,
diabetes or hypertension. But for most of them, over time,
as people aged, they it these are getting worse, these disorders,
(12:02):
and you've got to be with people. And in the
area of dementia, they get worse in the worst of ways,
where people not only lose their memory and sense of self,
but become delirious, psychotic, m incredibly h difficult to care for.
These are people like my wife, who are the most
(12:24):
wonderful of personalities and the most supportive of people, become
incredibly difficult to care for. How do you keep going?
How do you keep going? And in a setting like that,
I think an amazing number of family cares friends, family
do keep going and my concerns how do they do that?
(12:44):
And I think that is where care morally transforms us.
We learn how to be human, how to be present,
even in settings where it's very hard to be that way.
We learned to do that by bringing ritual to our lives,
by organizing habits that get us through the day, by
(13:04):
learning how to be with people when they're in a
terrible shape and keep going, keep our hope up. Hope
is no longer that things are going to be cured
or that the future is going to end up with
a positive outcome. No, the outcome is going to be
the same as it would have been anyway. But how
(13:26):
you handle it and how you deal with the person
who you're caring for that makes the world of difference.
That's that's the difference between feeling that you've had a
purposeful life and which you've done the things that were
right to do, and feeling really good about that, as
opposed to feeling helpless and hopeless and and lost, as
(13:50):
it were in the world. And so I'm very impressed
by the by the actually scientific evidence which shows that
the family cares do have more psychology, logical, and physical
problems because caring takes so much out of us, but
also end up with more of a sense of a
purposeful life, that they've done something of meaning that they've
(14:11):
been able to not just get through life with someone else,
but do something that they felt was good and important
and valued, etcetera. Well, I think all of that is
about the way we live our values in our life,
and I think you can through care, do you think
we live a certain kind of value which is very
very important. It was important to me, and it was
(14:33):
crucial it turned out to my ability to keep going.
And I think that's one of the most interesting things
we we talked about in family cares or even professional cares, burnout,
because there's a lot of burnouts. But actually it's not
burnout that's so interesting. It's how do we keep going?
How do we endure? And by endure, I don't mean
(14:54):
that that all the time it's a down here, it's terrible. Um,
we endure with moments of joy and happiness and and
and good things happen along with the fact that ultimately
the outcome is not going to be so good. But
the way that we keep going, that we we help
us to keep going, is something that you carry over
(15:15):
into the rest of your life. And for me, my
wife died in two thousand eleven, and for me, I
carried over many of those things into the years subsequent
to that. Became more fully myself. I felt felt it
at any other time in my life, and a lot
of the lessons I learned are actually been very helpful
in self isolation during the COVID nineteen pandemic. Yeah. That
(15:41):
that that makes so much sense to me, because I
think so many of the conversations I'm having with people
are I think people are finding that they are coming
to know themselves. You know, that we are coming to
know ourselves better in or or what we're made of. Um.
I I always end these interviews with the question what's
(16:04):
bringing you hope? Which I'm gonna ask you in a minute.
But I spoke a couple of weeks ago to Galen Gingrich,
who's the senior minister at All Souls Unitarian Church in Manhattan,
And when I asked Galen what was bringing him hope?
He he said, you know, I didn't know I had
I have all these practices and I have this spiritual life,
but I didn't know who I would be really, you know,
(16:29):
in the earthquake, in the burning building, in the extreme circumstance.
We never know who we're going to be until we're there.
And I think that that was something I really felt
in your book and that you're describing now. Was that
sense of becoming um the person in a deeper way
that you hadn't known that you were or that you
could be, even though you had spent your life caring
(16:51):
for others. Yeah. Absolutely, And of course there's no you know,
this is not like a movie, and it's not like
it ends when you're you've had a again to something.
They're really in this story. There are no monsters, and
they're no heroes. This is about getting through life and
being and being in life in such a way that
you have a way of proceeding forward. And maybe this
(17:14):
is the answer to your idea about what is hope.
A way of proceeding forward in which you feel that
you are yourself, you are who you are, and and
you've come to recognize that you've made yourself into something
that is valuable and that lives your values. So you know,
(17:35):
we're a custom in our society to have people talk
about what their values are. But um, I think what
you learn and caregiving is the values and not what
you talk about. Uh, they're what you do. They are
your daily doing. And I think that that's what taking
care of yourself as much as take care of anyone else's.
It's your it's you're doing, it's you're going through, it's
(17:58):
your becoming. I think that's constant, and it doesn't end.
I think that for a caregiver, it doesn't end with
the I can definitely assure you this with the death
of the person you're caring for, because it continues. In
the Caring for Memories, I spend a fair amount of
time in the book on the idea of the caring
for memories, because that's so much of your life after
(18:19):
someone passes, and not not just by the way a
family member has. The caring of memories. Physicians and nurses
and social workers and other health providers know very well
and remember quite well stories, the stories they've gone through
of caring for others, and they order those and rethink
(18:42):
them and use them to supply their life with a fullness,
and I think it's that fullness, that sense that that yeah,
you know, I've I feel that my presence, that it's there.
I think that's the greatest gift to the caregiver, that
(19:03):
you've been present and you know how to be present,
and you can be present for yourself. You know. I'm
a psychiatrist as well as an anthropologist, and so many
of us, in my experience, treat ourselves poorly. We have
a way of treating others, and then when we deal
with ourselves, we tend to be tougher, inattentive and the like.
(19:25):
I think over time you get to understand that your
life has, even in the midst of the most difficult
kind of care you could imagine, has a kind of
beauty to it as sort of moral fullness, a sense
of of moving in a direction that's good for you
(19:47):
and good for others. And I think there's no um
that that is hope. That's the hope, uh that keeps
you moving. It's there to do, and you do to
it and you keep doing it. And that's one of
the things that impressed me the most. Speaking with many
family caregivers for patients with Alzheimer's, disease UM who I
(20:12):
met John and I met them along the course of
her illness. Um that they'll tell you that they're up
against the wall. They feel the latest problem, someone who
can't remember them, or has a syndrome in which they
think that they're an impostor, or becomes terribly upset. It
(20:34):
looks like it's a wall. You can't get over this,
And then all of a sudden they find they can
get over it, they can do the things that need
to be done. And what what enables that to happen.
It's the love you have, It's the it's the the
care you want to give the other person and that
person's need for it and also their expressed desire for
(20:56):
it that carries you forward. So my own feeling is
the caregiving is the most important thing in life. That
it runs from caring about who you are in your
world to giving care to others. And that when we
are in this and overwhelmed by it and find it unendurable,
(21:19):
we don't realize at the end that a gift is
being given to us. The gift is that you're going
to come out of this and you're going to have
the sense of purpose and and fulfillment. Now. Now that
means that not make up for the terrible loss of
someone you love, um, but it's a it's a strong
and abiding feeling that I think makes the rest of
(21:42):
life um Uh, what's the right word. I'm not sure
I was gonna say easier. It doesn't make the rest
of life easier, but it makes the rest of life
more filled with a sense of um of your your
accomplishing work on the self and on others that has
(22:03):
made you more cultivated and better and has made others
that way. M Arthur, that's really beautiful. Thank you so
much for taking the time to to talk about this
with us today. I really appreciate it. On my pleasure,
and I hope your listeners will want to read the
Soul of Care because I put just about everything I
(22:25):
have in me into it. Thanks for listening to the
way we live now, tell us the way you're living
now we want to hear call us on. You might
want to a pen for this nine O nine one
three eight that's nine O nine seven one three eight
(22:48):
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our Facebook group at facebook dot com. Slash groups slash
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community here and we would love for you to join us.
You can find me on Instagram at Danny Ryder. The
Way We Live Now is a production of I Heart Radio.
(23:10):
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