December 10, 2024 • 31 mins
Co-hosts Virginia and Steve are joined by Renée Brown Harmon, MD, a retired family physician, who shares her eight-year journey as a caregiver for her husband, Harvey, diagnosed with early-onset Alzheimer's at age 49. Dr. Harmon discusses the challenges of caregiving, the stages and types of grief, and the coping strategies she used. She also highlights the emotional and physical toll caregiving can take. Her book, Surfing the Waves of Alzheimer's: Principles of Caregiving that Kept Me Upright, provides practical guidance and emphasizes the importance of accurate information, community, and self-care for caregivers.
Renée's website can also be found here:
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Steve (00:06):
From the University of California, Irvine. This is UCI
MIND's Spotlight on Care, thepodcast where we share stories,
experiences, tips and advice oncaring for loved ones affected
by Alzheimer's and otherdementias.
Virginia (00:21):
Hello, and welcome to Spotlight on Care. I'm Virginia
Naeve, and I'm here with mywonderful co-host, Mr. Steve
O'Leary. Our guest today is Dr.
Renee Brown Harmon, who willtalk to us about grief. Dr.
Harmon is a retired familyphysician and lives in
Birmingham, Alabama. She had,what she called a perfectly
(00:43):
balanced, charmed life. She metHarvey in college, and close to
graduation, they started datingeach other. They both wanted to
be physicians and were acceptedto the same medical school. They
were soon married. Familymedicine was the specialty that
they were both interested in,andafter their education and
(01:06):
residencies, they moved toBirmingham and opened their
office called Double OakFamilyMedicine in 1992. They
felt they were two halves of a
whole (01:20):
equals. They shared the medical practice, household
chores, cooking, and raisingtheir two daughters. They had an
ideal life as partners, parentsand physicians. Then, the
charmed life took a verydifferent turn for both of them.
(01:43):
Harvey, at age 49, startedshowing signs of younger onset
Alzheimer's disease. Welcome,Dr. Harmon, we're glad you're
here with us today.
Renee (01:54):
Thank you. Glad to be here.
Virginia (01:57):
I'll call you Renee, if that's okay.
Renee (01:59):
Sure.
Virginia (02:00):
Okay. Here's the spot where Steve and I like to say
just a little something quicklyabout the topic we're going to
be discussing. So Steve, tell usa little bit about the process
of grief that you went throughwhen taking care of your wife,
Patty, who had Alzheimer's.
Steve (02:20):
Yeah. Well, first of all, Renee, I share your experience.
I found Patty in college, thisbeautiful red-headed woman, and
long story short, we got marriedin college and then moved to New
York, and I lost her after 48years of marriage. So it was a
wonderful partnership. We workedtogether. So similar story.
Renee (02:39):
Yeah.
Steve (02:40):
I think my grief really started much sooner than
actually Patty passing, and tosome degree that was good, and
some degree it was bad, but Ifelt that it started, especially
started when I made the decisionabout a community, and the sense
of guilt that I felt, kind ofmoved into grief, and I knew
where we were heading, and whenthat became more apparent, then
(03:02):
it was okay, it started. In somerespects it was good, because at
the end, I didn't have thisoverwhelming sense of loss. I've
had that feeling for quite awhile.
Virginia (03:12):
I hadn't asked Steve before what he was going to say,
and I just knew what I was goingto say, which was my grief
process started definitelybefore mom passed; I lost her
over eight years, and it wassomething I just had to kind of
get a grip on. And I havelearned since, since we were
(03:34):
going to be speaking with you,that there's a lot to grief to
understand. I had no idea, butyes, I went through a lot of the
grieving process before shepassed. But before we start to
discuss our topic for today ongrief, I want you, Renee, to
tell our listeners a bit aboutyour story. Let's start with the
(03:55):
family vacation you took inCosta Rica.
Renee (03:58):
Sure. So it was on that big family vacation when I had
that first jolt of just fearthat there was something wrong
with Harvey's cognitiveabilities. He just could not
keep up with what the guide wastelling us to do. Every day he
would ask, "Now, what time isbreakfast? What am I supposed to
(04:21):
wear today? I don't rememberwhat activity we're doing." It
was eye opening and shocking,and he realized it himself. And
at the end of that vacation, ourlast day there, he admitted that
he felt off all week. That washis word. It felt more than off
to me. So I asked him somequestions. Now, because we were
(04:43):
both doctors, he would know whatI was doing if I asked the mini
mental status exam questions.
Right, name these three things.
So I asked birthdays, and with alot of thought, he could come up
with our birthdays, mine and ourtwo daughters. But he could not
come up with the birth years ofour daughters, which was really
(05:04):
odd, and he couldn't even do themental math to calculate their
birth years, when I gave himclues. I wanted him to see a
neurologist when we got home,because already my gut, I don't
know if it's my physician gut ormy woman's intuition, but
something was telling me, thisis not right. He wanted to work
on brain training games, so westruck a bargain. His scores
(05:28):
didn't improve, and eventuallyhe did decide that he would see
the neurologist. So four monthsafter Costa Rica, in that four
months time, I was on theinternet searching, "Could this
be Alzheimer's?" He's 49 yearsold. I'd never seen younger
onset. I knew it was rare. Ifound an article by the
Alzheimer's Association thatlisted 10 warning signs, and I
(05:52):
realized he had exhibited six orseven of those on that trip. So
I got him to the neurologist. Hewas diagnosed with mild
cognitive impairment, and wewere told it wasn't Alzheimer's,
because it wasn't affecting hisdaily life. So when I asked,
"How am I gonna know?" theneurologist was unhelpful and
said, "You'll have to watch himreally closely." That's
(06:13):
impossible to do in a medicalpractice, right? He had his exam
rooms and his patients. I had myexam rooms and my patients.
There was no way I would knowwhat was going on in those exam
rooms. So I just worry. I justworried. And when I worry, I get
on the internet and I looked,what do other people do in these
situations? Now, this was 2010;I could find nothing. I found
(06:36):
information about physicians whowere impaired with drugs or
alcohol, and programs torehabilitate them to get back to
practice, but nothing aboutcognitive impairment. Even our
own state medical licensingboard had programs to
rehabilitate physicians, andthey had an anonymous tip line.
Virginia (06:58):
Which you called.
Renee (06:59):
I sat with that information, knowing that I was
going to call and turn in myhusband.
Virginia (07:06):
Oh boy.
Renee (07:07):
As an impaired physician.
What I really wanted was like akind colleague to answer the
phone and walk me through thesteps. So I got up the courage
and called because our patientswere my responsibility.
Steve (07:22):
Oh, yeah, for sure.
Renee (07:23):
And Harvey would say things like, I'm going to count
on you to tell me when I shouldretire, which was also not
helpful. So I did. I got up thatcourage, and I called our state
medical licensing board and gota lawyer.
Virginia (07:37):
Oh.
Renee (07:38):
and I, oh , I still get chills when I tell this part of
our story. I- but I told ourstory without telling our names,
our location, and he wasactually very kind and agreed
with me that it was putting mein an untenable position-
Virginia (07:54):
Okay
Renee (07:54):
-as his wife and his partner, and that I needed a
professional to help me makethis decision, but he didn't
tell me what. So I got back onthe internet and decided that
neuropsychological testing wouldbe the way to answer that
particular question. Andfortunately, we have a very good
department at the teachinghospital here in Birmingham, but
(08:16):
it's quite aprocess to get in,get tested, have the results. So
nine months after Costa Rica, hewas diagnosed with Alzheimer's
disease.
Virginia (08:25):
Okay so that was probably the point where you're
thinking, he's got to retire.
Renee (08:30):
Right, and he was told your cognitive impairment is to
the point that you should nolonger practice medicine.
Virginia (08:37):
Okay, so that was officially your start or
beginning of your eight yearjourney as a caregiver.
Renee (08:45):
Yes.
Virginia (08:46):
Okay.
Renee (08:47):
Yes, indeed.
Virginia (08:47):
Fortunately, you kept journals, which were your guide
for writing your book. And Ihave to tell our listeners, your
book is absolutely wonderful.
It's called Surfing the Waves of
Alzheimer's (09:02):
Principles of Caregiving That Kept Me Upright.
And the stories are wonderful.
Thank goodness for yourjournals, huh?
Renee (09:12):
I know, right. I had six full journals.
Virginia (09:15):
Oh, amazing. And then at the end of each chapter you
have an instructional guide,almost, or tips or caregiving
concepts and ideas for otherpeople to handle a similar
situation, right?
Renee (09:30):
Right. Each chapter is titled a particular caregiving
principle and then illustratedwith story. And then there are
practices, is what I call themin the book, that someone can do
to solidify that particularpractice.
Virginia (09:43):
Wonderful, yeah, it's really good. And in the show
notes, we'll put the name ofyour book and links to your
website. All right. So let'sstart our discussion about
grief, as I understand it, thereare stages of grief and there
are forms or types of grief. Sofirst, tell us about the stages.
Renee (10:06):
So a lot of your listeners may be aware of the
work that Dr. Elizabeth KublerRoss did in developing these
five stages of grief. That workwas done in 1969 and her
population that she was studyingwere patients who had been
diagnosed with a terminalillness. So bear that in mind,
(10:28):
these five stages pertain topatients who had a terminal
illness. Since then, we'veexpanded it to include family
and friends who have a loved onewith a terminal illness, and
we've expanded even more toinclude huge life changes like a
divorce or a loss of a job.
Anything that causes loss cantrigger these five stages of
(10:51):
grief, right?
Virginia (10:54):
Interesting.
Renee (10:55):
So, yeah, think about it that way. You lose your job,
you're going to grieve that lossif it was a job that you
particularly love, right? Right?
But these five stages of grief,I learned an acronym for, and I
will always use it as DABDA.
Virginia (11:11):
Let me remember it.
Renee (11:13):
Denial, Anger, Bargaining, Depression,
Acceptance. So as it pertains toAlzheimer's disease and my
particular journey, I begangrieving as soon as I knew
something was wrong, and when Ihad that inkling that this is
probably Alzheimer's disease,maybe because I'm a physician
(11:35):
and I knew what the trajectoryof the disease looked like, but
I had exhibited all five ofthese in different times. That's
another thing that you have toremember. These five stages of
grief aren't boom, 1,2,3,4,5-you do this one for five months,
Virginia (11:52):
Not in order. Yeah, okay.
Renee (11:55):
You don't go in order necessarily. You can hop around
and they're just nice tag wordsto name what you're going
through-
Steve (12:05):
Experiencing.
Renee (12:06):
Experiencing! So denial, I would routinely say, and
that's what I was probably doingearly on, when he was
complaining about his memory.
What middle aged man doesn't getforgetful from time to time,
right? And I've heard offamilies who can really do
denial with depression for along time.
Yeah, that's fairlycommon. Anger was a big response
Virginia (12:26):
Long time.
for me. I was angry that he gotthis, not angry at him, or angry
atGod even, but just angry thathe because he had done
everything (12:38):
he had eaten right,
Virginia (12:40):
He exercised. He was a runner, right?
Renee (12:44):
He was a marathon runner, fabulous marathon runner. He did
everything right. And I wasangry that everything was going
to land on my shoulders.
Virginia (12:52):
Yeah.
Renee (12:53):
Because I knew as his abilities decreased, my
responsibilities would increase,and I was going to have to
shoulder everything, and thatmade me angry.
Virginia (13:02):
Well you were partners before, and you split
everything-
Renee (13:05):
Right.
Virginia (13:05):
-and now it's gonna go all to you.
Renee (13:07):
That's what it felt like.
And it did. I mean, yeah, itdid. Bargaining that third stage
was less of an issue, I thinkbecause I knew younger onset
could be genetic, and I wouldhave thoughts like, "Please
don't let the daughters getthis. If anybody's got to get
it, let it be me." But that waspretty like, depression was
probably the hardest and justdeep, deep sadness over what I
(13:29):
was experiencing, what mydaughters were going to
experience, and moreimportantly, depression over
what Harvey was going to have toexperience-
Virginia (13:40):
Right .
Renee (13:40):
-and what he was going to miss for the rest of his life.
Did you and Harvey talk aboutthat at all? About what he was
He was not going to be there forweddings and grandchildren and
going to miss?
No, he did not want to talkabout it, and he had some
just deep, deep sadness.
denial. So I would bring upsomething, and he would say,
(14:02):
"I'm not going to get anyworse." And he pretty much would
shut me out. And that hurt,because I was losing my
confidant, my soul partner, whoI would talk to everything
about. So that's one of thereasons the journal saved me,
because I could talk to thejournals. No, I wish we had for
my sake, but I think he wasmaybe protecting himself, and
(14:26):
it's possible he was thinkingabout this and didn't need to
talk to me about it, because hewas already doing that.
Virginia (14:33):
There's probably only so much of this that you could
talk about with your daughters.
They're seeing this from a kindof a different perspective from
yours.
Renee (14:42):
Yes, so they were 14 and 17 years old, so at 14, she'd
never even heard of Alzheimer's.
She knew her dad didn't have thegreatest memory, and would say
things like, "You better comepick me up, Mom. I don't think
Daddy can find this house." Andthen the 17 year old knew of
Alzheimer's and I knew it wasfor old people, so that was
confusing. And one of the firstthings she said to me was, "Will
(15:04):
he forget who I am?" And I hadto kind of say that might
happen, but it'll be years fromnow. But it affected both of
them dramatically in differentways because of their ages. I
don't know what grief was likefor them.
Virginia (15:23):
That'd be an interesting discussion sometime.
And acceptance is the last oneon Elizabeth Kubler Ross's list.
Renee (15:31):
So yeah, you have to accept it. How else can you go
on without accepting it? Yeah,and these five stages would rear
their heads throughout the eightyears of Harvey's illness. Less
denial as time went on, but theanger and the depression and
acceptance would just kind ofrotate through at various times.
Steve (15:51):
Like cycles, yeah.
Renee (15:52):
Yes, cycle through it.
Virginia (15:54):
I check in quite often to the Mayo Clinic. They call it
the Mayo Clinic Connect. It's anonline caregiver support group,
No Longer a Caregiver. What AmI? And that person sounded lost.
I read her paragraph, and youhave a little something to say
about a possible sixth stage ofgrief.
Renee (16:19):
Well, I would echo a lot of caregivers do find themselves
lost when that role is gone. Nowit wasn't something I
experienced, and I think it'sbecause I continued to work, I
continued to have interactionswith other people, but when you
are isolated as a primarycaregiver, and that's all you're
doing, when that goes away,yeah, there is grief at the loss
(16:42):
of your role that can be hard.
Virginia (16:44):
Right, right. You mentioned David Kessler, a
colleague.
Renee (16:49):
Yeah, let's talk about David Kessler. He was a
colleague of Dr. ElizabethKubler Ross, and he came up with
a sixth stage of grief (16:55):
Finding Meaning. And he has a book about
that. And finding meaning mightbe something as grand as writing
a book or starting a podcast orstarting a support group, but
the favorite definition I foundin his book was "When you can
remember the loved one with morelove than sorrow."
Virginia (17:19):
I love that.
Renee (17:20):
Yeah, and that takes some time.
Virginia (17:23):
Yeah, it does. It does, okay. So let's move into
the types of grief. Explain toour listeners what is ambiguous
loss?
Renee (17:35):
So I found out about ambiguous loss from my oldest
daughter, who is a socialworker. This term was coined by
Pauline Boss in the 1970s; shewas working with families where
there was this Vietnam soldierwho had been missing in action,
right? So they're presumed dead,but there's no body. There's
(17:57):
difficult to get closure. So saysomeone goes missing in the
desert or on the ocean, there'sno body to grieve. That there's
this ambiguous loss. Well, itcan also apply where the body is
present, but the personality isso changed, and that is what
(18:17):
dementia can cause. So he'sright there in front of me. He
looks the same, but he's not thesame. I love the word ambiguous,
and that is perfect for thatfeeling like, "How can I grieve
you when you're right in frontof me?"
Virginia (18:33):
Right, very confusing.
Renee (18:35):
Yeah.
Virginia (18:35):
Anticipatory grief, and how that relates to
dementia?
Renee (18:40):
That is the kind of grief where you know that your loved
one will pass away from anyterminal illness, so you're
anticipating that it's going tocome, it's going to be hard, and
if it's a long period of time,you've got a longer period of
time to get ready for that, andit's more difficult and it's
shorter,.
Virginia (19:00):
Okay, and disenfranchised grief was
interesting because you saidyour grief is discounted. People
try to be helpful, but they saythe wrong things. And I just
noticed, when mom had dementia,people would say to me something
like, "Well, she doesn't knowwhat's going on. She doesn't
know what she has," And I'mthinking, "Oh, that is so
(19:25):
wrong." My mom knew there wassomething wrong. She really did,
and I was grieving. And theywere like, discounting my grief-
Renee (19:32):
Right.
Virginia (19:33):
-they were, in a way, telling me I shouldn't be
grieving.
Renee (19:35):
Right. I would hear things like, "Well, at least he
knows who you are." Oh, okay,good. Thank you. All those, at
least, right? Oh, yeah. And I'vesaid things like that myself,
you know?
Virginia (19:48):
I know.
Renee (19:49):
Oh, she looks really good today. You come live with her.
Virginia (19:55):
Exactly, exactly.
Renee (19:56):
Yeah. It just makes you feel like you're not being seen
or heard sometimes.
Virginia (20:01):
Exactly.
Steve (20:03):
You know, I have a question here. I think when we
talk to people who are, they'vegone through the period of the
person passing, and they'restill grieving, and they ask the
question often, "When will thisend?" And of course, it's
different for everybody. I'minterested in your comment about
that, but mostly, what have youfound or investigated that are
(20:26):
ways to kind of help alleviatethat grief.
Renee (20:30):
Okay, well, let me address the first one. In
medical school, we were taughtthat grief lasts about a year,
and like you said, that'sdifferent for everyone. There's
another term called complicatedgrief. When the grief is
debilitating and tends to lastlonger than a year, you should
actually seek help if you're sodebilitated. There are several
(20:53):
things that I did to help combatgrief during and after. Right?
The journaling was helpful forme to get my emotions out onto
the page. I sought counseling assoon as Harvey was diagnosed,
just preventatively, because Iknew it was going to be
difficult, and some people mightbalk at that, but I knew it was
(21:15):
going to be important for me tofind a professional counselor
who didn't know our storyalready, or he or she would have
an unbiased opinion of theprocess, unlike my friends or
family, right?
Steve (21:26):
Yes.
Renee (21:28):
A dementia support group, a grief support group.
Virginia (21:32):
Now those are two different things, right? You've
got dementia support groups, butI didn't know that there was
such thing as a grief supportgroup. But apparently-
Renee (21:41):
There are grief support groups for any death that can be
helpful. Now I actually joined agrief support group while Harvey
was still alive. It was at mychurch. I knew it was a little
weird, and I asked thefacilitators permission, and
they asked the otherparticipants if they thought it
would be okay, and they allowedme, and that was very helpful
(22:01):
for me to express my griefalongside these other people who
were grieving their loved ones.
But that's an exception.
Virginia (22:08):
But they accepted you as part of the group.
Renee (22:11):
They did. They did. But a grief support group once someone
passes away, might be reallyhelpful.
Steve (22:18):
So you've mentioned three things, anything else you've
talked about journaling,counseling and support groups
and two versions of those,anything else that you-
Renee (22:26):
I really find healing in nature for me personally, and I
know not everybody's a naturegirl, but Harvey and I would
walk every morning in theneighborhood, and we would hike
on the weekends. So I continuedthat, and it, you know,
sometimes it felt like Harveywas with me. We've done as a
family a few commemorativethings. We planted a tree using
(22:48):
his ashes in the base.
Virginia (22:50):
Oh, nice.
Renee (22:51):
Yeah.
Virginia (22:51):
Very nice.
Renee (22:52):
So if you can find little rituals and commemorative things
to do along the way, I thinkthat helps with grief and
staying in community. Being acaregiver can be so isolating,
but staying in community withyour friends and family is so
supportive. I couldn't have doneit without my friends and
family.
Virginia (23:13):
Your journaling and your friends and family.
Renee (23:15):
Absolutely.
Steve (23:17):
Yeah.
Renee (23:17):
I wasn't good at asking for help, but what I was good at
was being vulnerable enough tohelp people what was going on at
home, and then they would offerspecific help. And I learned to
accept it.
Virginia (23:31):
Right, which is not always easy to do-
Renee (23:34):
No, not at all.
Virginia (23:35):
-but we should do it.
People want to help.
Renee (23:39):
Absolutely. I will say this. People will say, "How can
I help? I want to help you as acaregiver." To be honest, that
felt like one more thing on myto do list.
Steve (23:50):
One more task.
Virginia (23:51):
One more thing to do.
Renee (23:53):
Yes, right? So if you can offer a specific something, or
if someone offers a broadstatement like that. If you have
something in your back pocketand you can pull out and say:
"You know what? Do you think youcould cut my grass this next
Saturday? I can't get to it."Something specific on both way
seems to work better than thesegrand offers.
Virginia (24:16):
Right, right, I remember in one part of your
book, you mentioned that therewas a spot, you were kind of
losing your hair. You said itwas probably from stress.
Renee (24:27):
Yeah!
Virginia (24:28):
What are like, physical things that caregivers
should really be aware of?
Renee (24:34):
That's a really good question. I think the hair loss
was probably pretty odd, but itwoke me up. Yeah, you have a
little stress there, Renee,getting bald spots! But
headache, loss of appetite, orincreased appetite, you find
yourself eating more. Chestpain, fatigue, overriding
(24:55):
fatigue, where you cannot doanything. You know, stress
decreases your immunity, so youmight have more colds, or you
might be more prone to otherunderlying illnesses, if your
immune system is under attackbecause of the stress that
you're feeling.
Virginia (25:12):
Lack of sleep.
Renee (25:13):
Oh, absolutely, yeah, insomnia, that was the deal
breaker for me, was actually, ifmy sleep is interrupted where I
can't function the next day, I'mgonna have to make a change.
Virginia (25:24):
That's when you really started looking for-
Renee (25:27):
For care outside the home, yeah, for me, that was my
deal breaker.
Virginia (25:32):
We're wondering how you handled your grief, family
grief after Harvey passed.
Renee (25:39):
Well, he actually passed at the end of October, and we
had his memorial service in themiddle of November, and
Thanksgiving was just right thenafterwards, and I remember my
mother made this beautifulstatement of gratitude for
Harvey in our lives and the giftthat was Harvey to all of us at
(26:04):
this big Thanksgiving table.
Instead of glossing over it orignoring it, she acknowledged
it-
Virginia (26:11):
Nice.
Renee (26:11):
-in a beautiful way that I don't think I could have, but
she did.
Virginia (26:15):
Wonderful.
Renee (26:16):
And that was the beginning of remembering Harvey
with more love than sorrow.
Virginia (26:20):
Right, right.
Renee (26:21):
So then when Christmas rolled around, one thing I did
when he passed away, I had afriend who wanted to coordinate
meals, and I had the wherewithalto ask for a meal once a week,
and we had meals brought to usonce a week all the way through
December, and me and mydaughters and their guys, all
five of us would gather once aweek for family dinner, and that
(26:46):
was life saving to gather all ofus together through
Thanksgiving, through Novemberand December, and when Christmas
came, I made sure we kept thesame traditions, the same food,
the same gift giving, the sameCDs that my daughters laugh at,
but I don't care, we're going tolisten. And I gifted them with
(27:06):
something of Harvey's. I think Igave one son in law a watch and
another son in law a pocketknife, and I gave the girls-
Virginia (27:14):
What a good idea.
That's nice.
Renee (27:18):
And that was nice. And I have to say, there was not as
much grief and sorrow as Ithought there would be. There
was a good bit of reliefactually. The prior two
Christmases were horrible. Onehe was in a nursing home that
was dank and really hard, andthe other was a geriatric
(27:40):
psychiatry unit that he was infor six weeks, so we celebrated
Christmas at the geriatricpsychiatry unit. So not having
to manage that, that first yearthat he was gone was a relief,
and I felt a little guilty aboutthat, right?
Steve (27:55):
Oh, for sure.
Renee (27:56):
Yeah.
Virginia (27:57):
Exactly.
Steve (27:58):
Well, this kind of relates. Are you still
practicing medicine?
Renee (28:02):
No. I retired in 2019 just before COVID hit.
Steve (28:07):
Oh, wow.
Virginia (28:07):
Oh, my goodness.
Renee (28:08):
I know. I know.
Well I always think it'sinteresting to hear from a
physician, especially one who'sbeen a caregiver like you have.
If there's one thing that youwould tell caregivers, from your
perspective as a physician thatcould make the easier for the
physician to be a betterassistant- a better help in the
whole process. Because I thinkfinding a really good physician
(28:32):
is really, really valuable,because they become kind of part
of the team, rather than justsomebody you see once a year.
Yeah, no, the more informationyou bring to the physician, the
better it is. And if you feeluncomfortable talking about your
loved one in front of thephysician, I get that, but write
a letter, flip it to the nurse,go on the portal and report
(28:53):
everything you're seeing andevery question you have, because
physician needs as muchinformation as possible to make
decisions. Yeah, absolutely.
Steve (29:04):
I totally concur. But I thought it would be interesting
to hear what you had to say fromyour perspective, because you
you are a physician.
Renee (29:11):
And I would say, if somebody came by themselves, a
patient with dementia, I wouldalways call the closest family
member and tell me what you'reseeing.
Steve (29:20):
I have another question, if you don't have one Virginia,
but go ahead.
Virginia (29:23):
No, I'm good. I'm good. We're getting ready to
wrap up, but you go ahead.
Steve (29:27):
This might be too long so you can say pass. Harvey had
early onset. Where are your kidshead on their minds right now,
on this whole issue? Patty wasessentially early onset. She was
diagnosed at 60, and theyconsidered early onset, and so
I've got two sons and adaughter, and curious how your
(29:49):
kids reacted to this evolutionissue?
Renee (29:52):
Yeah, very, very good question. They were both,
especially the oldest, reallyconcerned. And eventually I did
have Harvey genetically testedto see if he carried one of
these genes that if passed down,you will get it. He did not have
that. So their risk of gettingAlzheimer's are the same as you
(30:14):
and me, the same as anyone. Sowhen I told them that, it
actually did not relieve theirstress.
Steve (30:21):
Interesting.
Renee (30:22):
That, well, if he could get it without the gene, maybe
I? That was early on. I'm notsure where they are now, they've
gotten on with their lives. Ihave grandchildren.
Virginia (30:30):
Oh how nice.
Steve (30:31):
Good. Well, thank you.
Virginia (30:32):
That's wonderful.
Well, you've really given us alot of great information today.
We will post the name again, ofyour book, which is so good.
Surfing the Waves of
Alzheimer's (30:45):
Principles of Caregiving that Kept Me Upright,
and the listeners can find thatin the show notes, as well as a
link to your website.
Renee (30:53):
Great. Thank you!
Virginia (30:54):
And thank you so much for joining us, and for our
listeners today, thank you forjoining us and join us again
soon on Spotlight on Care.
Steve (31:06):
Spotlight on Care is produced by the University of
California Irvine, Institute onMemory Impairments and
Neurological Disorders, UCIMIND. Interviews focus on
personal caregiving journeys,and may not represent the views
of UCI MIND. Individualsconcerned about cognitive
disorders, prevention, ortreatment should seek expert
(31:27):
diagnosis and care. Pleasesubscribe to the Spotlight on
Care podcast, wherever youlisten. For more information,
visit mind.uci.edu.
From the University of California, Irvine. This is UCI
MIND's Spotlight on Care, thepodcast where we share stories,
experiences, tips and advice oncaring for loved ones affected
by Alzheimer's and otherdementias.
Virginia (00:21):
Hello, and welcome to Spotlight on Care. I'm Virginia
Naeve, and I'm here with mywonderful co-host, Mr. Steve
O'Leary. Our guest today is Dr.
Renee Brown Harmon, who willtalk to us about grief. Dr.
Harmon is a retired familyphysician and lives in
Birmingham, Alabama. She had,what she called a perfectly
(00:43):
balanced, charmed life. She metHarvey in college, and close to
graduation, they started datingeach other. They both wanted to
be physicians and were acceptedto the same medical school. They
were soon married. Familymedicine was the specialty that
they were both interested in,andafter their education and
(01:06):
residencies, they moved toBirmingham and opened their
office called Double OakFamilyMedicine in 1992. They
felt they were two halves of a
whole (01:20):
equals. They shared the medical practice, household
chores, cooking, and raisingtheir two daughters. They had an
ideal life as partners, parentsand physicians. Then, the
charmed life took a verydifferent turn for both of them.
(01:43):
Harvey, at age 49, startedshowing signs of younger onset
Alzheimer's disease. Welcome,Dr. Harmon, we're glad you're
here with us today.
Renee (01:54):
Thank you. Glad to be here.
Virginia (01:57):
I'll call you Renee, if that's okay.
Renee (01:59):
Sure.
Virginia (02:00):
Okay. Here's the spot where Steve and I like to say
just a little something quicklyabout the topic we're going to
be discussing. So Steve, tell usa little bit about the process
of grief that you went throughwhen taking care of your wife,
Patty, who had Alzheimer's.
Steve (02:20):
Yeah. Well, first of all, Renee, I share your experience.
I found Patty in college, thisbeautiful red-headed woman, and
long story short, we got marriedin college and then moved to New
York, and I lost her after 48years of marriage. So it was a
wonderful partnership. We workedtogether. So similar story.
Renee (02:39):
Yeah.
Steve (02:40):
I think my grief really started much sooner than
actually Patty passing, and tosome degree that was good, and
some degree it was bad, but Ifelt that it started, especially
started when I made the decisionabout a community, and the sense
of guilt that I felt, kind ofmoved into grief, and I knew
where we were heading, and whenthat became more apparent, then
(03:02):
it was okay, it started. In somerespects it was good, because at
the end, I didn't have thisoverwhelming sense of loss. I've
had that feeling for quite awhile.
Virginia (03:12):
I hadn't asked Steve before what he was going to say,
and I just knew what I was goingto say, which was my grief
process started definitelybefore mom passed; I lost her
over eight years, and it wassomething I just had to kind of
get a grip on. And I havelearned since, since we were
(03:34):
going to be speaking with you,that there's a lot to grief to
understand. I had no idea, butyes, I went through a lot of the
grieving process before shepassed. But before we start to
discuss our topic for today ongrief, I want you, Renee, to
tell our listeners a bit aboutyour story. Let's start with the
(03:55):
family vacation you took inCosta Rica.
Renee (03:58):
Sure. So it was on that big family vacation when I had
that first jolt of just fearthat there was something wrong
with Harvey's cognitiveabilities. He just could not
keep up with what the guide wastelling us to do. Every day he
would ask, "Now, what time isbreakfast? What am I supposed to
(04:21):
wear today? I don't rememberwhat activity we're doing." It
was eye opening and shocking,and he realized it himself. And
at the end of that vacation, ourlast day there, he admitted that
he felt off all week. That washis word. It felt more than off
to me. So I asked him somequestions. Now, because we were
(04:43):
both doctors, he would know whatI was doing if I asked the mini
mental status exam questions.
Right, name these three things.
So I asked birthdays, and with alot of thought, he could come up
with our birthdays, mine and ourtwo daughters. But he could not
come up with the birth years ofour daughters, which was really
(05:04):
odd, and he couldn't even do themental math to calculate their
birth years, when I gave himclues. I wanted him to see a
neurologist when we got home,because already my gut, I don't
know if it's my physician gut ormy woman's intuition, but
something was telling me, thisis not right. He wanted to work
on brain training games, so westruck a bargain. His scores
(05:28):
didn't improve, and eventuallyhe did decide that he would see
the neurologist. So four monthsafter Costa Rica, in that four
months time, I was on theinternet searching, "Could this
be Alzheimer's?" He's 49 yearsold. I'd never seen younger
onset. I knew it was rare. Ifound an article by the
Alzheimer's Association thatlisted 10 warning signs, and I
(05:52):
realized he had exhibited six orseven of those on that trip. So
I got him to the neurologist. Hewas diagnosed with mild
cognitive impairment, and wewere told it wasn't Alzheimer's,
because it wasn't affecting hisdaily life. So when I asked,
"How am I gonna know?" theneurologist was unhelpful and
said, "You'll have to watch himreally closely." That's
(06:13):
impossible to do in a medicalpractice, right? He had his exam
rooms and his patients. I had myexam rooms and my patients.
There was no way I would knowwhat was going on in those exam
rooms. So I just worry. I justworried. And when I worry, I get
on the internet and I looked,what do other people do in these
situations? Now, this was 2010;I could find nothing. I found
(06:36):
information about physicians whowere impaired with drugs or
alcohol, and programs torehabilitate them to get back to
practice, but nothing aboutcognitive impairment. Even our
own state medical licensingboard had programs to
rehabilitate physicians, andthey had an anonymous tip line.
Virginia (06:58):
Which you called.
Renee (06:59):
I sat with that information, knowing that I was
going to call and turn in myhusband.
Virginia (07:06):
Oh boy.
Renee (07:07):
As an impaired physician.
What I really wanted was like akind colleague to answer the
phone and walk me through thesteps. So I got up the courage
and called because our patientswere my responsibility.
Steve (07:22):
Oh, yeah, for sure.
Renee (07:23):
And Harvey would say things like, I'm going to count
on you to tell me when I shouldretire, which was also not
helpful. So I did. I got up thatcourage, and I called our state
medical licensing board and gota lawyer.
Virginia (07:37):
Oh.
Renee (07:38):
and I, oh , I still get chills when I tell this part of
our story. I- but I told ourstory without telling our names,
our location, and he wasactually very kind and agreed
with me that it was putting mein an untenable position-
Virginia (07:54):
Okay
Renee (07:54):
-as his wife and his partner, and that I needed a
professional to help me makethis decision, but he didn't
tell me what. So I got back onthe internet and decided that
neuropsychological testing wouldbe the way to answer that
particular question. Andfortunately, we have a very good
department at the teachinghospital here in Birmingham, but
(08:16):
it's quite aprocess to get in,get tested, have the results. So
nine months after Costa Rica, hewas diagnosed with Alzheimer's
disease.
Virginia (08:25):
Okay so that was probably the point where you're
thinking, he's got to retire.
Renee (08:30):
Right, and he was told your cognitive impairment is to
the point that you should nolonger practice medicine.
Virginia (08:37):
Okay, so that was officially your start or
beginning of your eight yearjourney as a caregiver.
Renee (08:45):
Yes.
Virginia (08:46):
Okay.
Renee (08:47):
Yes, indeed.
Virginia (08:47):
Fortunately, you kept journals, which were your guide
for writing your book. And Ihave to tell our listeners, your
book is absolutely wonderful.
It's called Surfing the Waves of
Alzheimer's (09:02):
Principles of Caregiving That Kept Me Upright.
And the stories are wonderful.
Thank goodness for yourjournals, huh?
Renee (09:12):
I know, right. I had six full journals.
Virginia (09:15):
Oh, amazing. And then at the end of each chapter you
have an instructional guide,almost, or tips or caregiving
concepts and ideas for otherpeople to handle a similar
situation, right?
Renee (09:30):
Right. Each chapter is titled a particular caregiving
principle and then illustratedwith story. And then there are
practices, is what I call themin the book, that someone can do
to solidify that particularpractice.
Virginia (09:43):
Wonderful, yeah, it's really good. And in the show
notes, we'll put the name ofyour book and links to your
website. All right. So let'sstart our discussion about
grief, as I understand it, thereare stages of grief and there
are forms or types of grief. Sofirst, tell us about the stages.
Renee (10:06):
So a lot of your listeners may be aware of the
work that Dr. Elizabeth KublerRoss did in developing these
five stages of grief. That workwas done in 1969 and her
population that she was studyingwere patients who had been
diagnosed with a terminalillness. So bear that in mind,
(10:28):
these five stages pertain topatients who had a terminal
illness. Since then, we'veexpanded it to include family
and friends who have a loved onewith a terminal illness, and
we've expanded even more toinclude huge life changes like a
divorce or a loss of a job.
Anything that causes loss cantrigger these five stages of
(10:51):
grief, right?
Virginia (10:54):
Interesting.
Renee (10:55):
So, yeah, think about it that way. You lose your job,
you're going to grieve that lossif it was a job that you
particularly love, right? Right?
But these five stages of grief,I learned an acronym for, and I
will always use it as DABDA.
Virginia (11:11):
Let me remember it.
Renee (11:13):
Denial, Anger, Bargaining, Depression,
Acceptance. So as it pertains toAlzheimer's disease and my
particular journey, I begangrieving as soon as I knew
something was wrong, and when Ihad that inkling that this is
probably Alzheimer's disease,maybe because I'm a physician
(11:35):
and I knew what the trajectoryof the disease looked like, but
I had exhibited all five ofthese in different times. That's
another thing that you have toremember. These five stages of
grief aren't boom, 1,2,3,4,5-you do this one for five months,
Virginia (11:52):
Not in order. Yeah, okay.
Renee (11:55):
You don't go in order necessarily. You can hop around
and they're just nice tag wordsto name what you're going
through-
Steve (12:05):
Experiencing.
Renee (12:06):
Experiencing! So denial, I would routinely say, and
that's what I was probably doingearly on, when he was
complaining about his memory.
What middle aged man doesn't getforgetful from time to time,
right? And I've heard offamilies who can really do
denial with depression for along time.
Yeah, that's fairlycommon. Anger was a big response
Virginia (12:26):
Long time.
for me. I was angry that he gotthis, not angry at him, or angry
atGod even, but just angry thathe because he had done
everything (12:38):
he had eaten right,
Virginia (12:40):
He exercised. He was a runner, right?
Renee (12:44):
He was a marathon runner, fabulous marathon runner. He did
everything right. And I wasangry that everything was going
to land on my shoulders.
Virginia (12:52):
Yeah.
Renee (12:53):
Because I knew as his abilities decreased, my
responsibilities would increase,and I was going to have to
shoulder everything, and thatmade me angry.
Virginia (13:02):
Well you were partners before, and you split
everything-
Renee (13:05):
Right.
Virginia (13:05):
-and now it's gonna go all to you.
Renee (13:07):
That's what it felt like.
And it did. I mean, yeah, itdid. Bargaining that third stage
was less of an issue, I thinkbecause I knew younger onset
could be genetic, and I wouldhave thoughts like, "Please
don't let the daughters getthis. If anybody's got to get
it, let it be me." But that waspretty like, depression was
probably the hardest and justdeep, deep sadness over what I
(13:29):
was experiencing, what mydaughters were going to
experience, and moreimportantly, depression over
what Harvey was going to have toexperience-
Virginia (13:40):
Right .
Renee (13:40):
-and what he was going to miss for the rest of his life.
Did you and Harvey talk aboutthat at all? About what he was
He was not going to be there forweddings and grandchildren and
going to miss?
No, he did not want to talkabout it, and he had some
just deep, deep sadness.
denial. So I would bring upsomething, and he would say,
(14:02):
"I'm not going to get anyworse." And he pretty much would
shut me out. And that hurt,because I was losing my
confidant, my soul partner, whoI would talk to everything
about. So that's one of thereasons the journal saved me,
because I could talk to thejournals. No, I wish we had for
my sake, but I think he wasmaybe protecting himself, and
(14:26):
it's possible he was thinkingabout this and didn't need to
talk to me about it, because hewas already doing that.
Virginia (14:33):
There's probably only so much of this that you could
talk about with your daughters.
They're seeing this from a kindof a different perspective from
yours.
Renee (14:42):
Yes, so they were 14 and 17 years old, so at 14, she'd
never even heard of Alzheimer's.
She knew her dad didn't have thegreatest memory, and would say
things like, "You better comepick me up, Mom. I don't think
Daddy can find this house." Andthen the 17 year old knew of
Alzheimer's and I knew it wasfor old people, so that was
confusing. And one of the firstthings she said to me was, "Will
(15:04):
he forget who I am?" And I hadto kind of say that might
happen, but it'll be years fromnow. But it affected both of
them dramatically in differentways because of their ages. I
don't know what grief was likefor them.
Virginia (15:23):
That'd be an interesting discussion sometime.
And acceptance is the last oneon Elizabeth Kubler Ross's list.
Renee (15:31):
So yeah, you have to accept it. How else can you go
on without accepting it? Yeah,and these five stages would rear
their heads throughout the eightyears of Harvey's illness. Less
denial as time went on, but theanger and the depression and
acceptance would just kind ofrotate through at various times.
Steve (15:51):
Like cycles, yeah.
Renee (15:52):
Yes, cycle through it.
Virginia (15:54):
I check in quite often to the Mayo Clinic. They call it
the Mayo Clinic Connect. It's anonline caregiver support group,
No Longer a Caregiver. What AmI? And that person sounded lost.
I read her paragraph, and youhave a little something to say
about a possible sixth stage ofgrief.
Renee (16:19):
Well, I would echo a lot of caregivers do find themselves
lost when that role is gone. Nowit wasn't something I
experienced, and I think it'sbecause I continued to work, I
continued to have interactionswith other people, but when you
are isolated as a primarycaregiver, and that's all you're
doing, when that goes away,yeah, there is grief at the loss
(16:42):
of your role that can be hard.
Virginia (16:44):
Right, right. You mentioned David Kessler, a
colleague.
Renee (16:49):
Yeah, let's talk about David Kessler. He was a
colleague of Dr. ElizabethKubler Ross, and he came up with
a sixth stage of grief (16:55):
Finding Meaning. And he has a book about
that. And finding meaning mightbe something as grand as writing
a book or starting a podcast orstarting a support group, but
the favorite definition I foundin his book was "When you can
remember the loved one with morelove than sorrow."
Virginia (17:19):
I love that.
Renee (17:20):
Yeah, and that takes some time.
Virginia (17:23):
Yeah, it does. It does, okay. So let's move into
the types of grief. Explain toour listeners what is ambiguous
loss?
Renee (17:35):
So I found out about ambiguous loss from my oldest
daughter, who is a socialworker. This term was coined by
Pauline Boss in the 1970s; shewas working with families where
there was this Vietnam soldierwho had been missing in action,
right? So they're presumed dead,but there's no body. There's
(17:57):
difficult to get closure. So saysomeone goes missing in the
desert or on the ocean, there'sno body to grieve. That there's
this ambiguous loss. Well, itcan also apply where the body is
present, but the personality isso changed, and that is what
(18:17):
dementia can cause. So he'sright there in front of me. He
looks the same, but he's not thesame. I love the word ambiguous,
and that is perfect for thatfeeling like, "How can I grieve
you when you're right in frontof me?"
Virginia (18:33):
Right, very confusing.
Renee (18:35):
Yeah.
Virginia (18:35):
Anticipatory grief, and how that relates to
dementia?
Renee (18:40):
That is the kind of grief where you know that your loved
one will pass away from anyterminal illness, so you're
anticipating that it's going tocome, it's going to be hard, and
if it's a long period of time,you've got a longer period of
time to get ready for that, andit's more difficult and it's
shorter,.
Virginia (19:00):
Okay, and disenfranchised grief was
interesting because you saidyour grief is discounted. People
try to be helpful, but they saythe wrong things. And I just
noticed, when mom had dementia,people would say to me something
like, "Well, she doesn't knowwhat's going on. She doesn't
know what she has," And I'mthinking, "Oh, that is so
(19:25):
wrong." My mom knew there wassomething wrong. She really did,
and I was grieving. And theywere like, discounting my grief-
Renee (19:32):
Right.
Virginia (19:33):
-they were, in a way, telling me I shouldn't be
grieving.
Renee (19:35):
Right. I would hear things like, "Well, at least he
knows who you are." Oh, okay,good. Thank you. All those, at
least, right? Oh, yeah. And I'vesaid things like that myself,
you know?
Virginia (19:48):
I know.
Renee (19:49):
Oh, she looks really good today. You come live with her.
Virginia (19:55):
Exactly, exactly.
Renee (19:56):
Yeah. It just makes you feel like you're not being seen
or heard sometimes.
Virginia (20:01):
Exactly.
Steve (20:03):
You know, I have a question here. I think when we
talk to people who are, they'vegone through the period of the
person passing, and they'restill grieving, and they ask the
question often, "When will thisend?" And of course, it's
different for everybody. I'minterested in your comment about
that, but mostly, what have youfound or investigated that are
(20:26):
ways to kind of help alleviatethat grief.
Renee (20:30):
Okay, well, let me address the first one. In
medical school, we were taughtthat grief lasts about a year,
and like you said, that'sdifferent for everyone. There's
another term called complicatedgrief. When the grief is
debilitating and tends to lastlonger than a year, you should
actually seek help if you're sodebilitated. There are several
(20:53):
things that I did to help combatgrief during and after. Right?
The journaling was helpful forme to get my emotions out onto
the page. I sought counseling assoon as Harvey was diagnosed,
just preventatively, because Iknew it was going to be
difficult, and some people mightbalk at that, but I knew it was
(21:15):
going to be important for me tofind a professional counselor
who didn't know our storyalready, or he or she would have
an unbiased opinion of theprocess, unlike my friends or
family, right?
Steve (21:26):
Yes.
Renee (21:28):
A dementia support group, a grief support group.
Virginia (21:32):
Now those are two different things, right? You've
got dementia support groups, butI didn't know that there was
such thing as a grief supportgroup. But apparently-
Renee (21:41):
There are grief support groups for any death that can be
helpful. Now I actually joined agrief support group while Harvey
was still alive. It was at mychurch. I knew it was a little
weird, and I asked thefacilitators permission, and
they asked the otherparticipants if they thought it
would be okay, and they allowedme, and that was very helpful
(22:01):
for me to express my griefalongside these other people who
were grieving their loved ones.
But that's an exception.
Virginia (22:08):
But they accepted you as part of the group.
Renee (22:11):
They did. They did. But a grief support group once someone
passes away, might be reallyhelpful.
Steve (22:18):
So you've mentioned three things, anything else you've
talked about journaling,counseling and support groups
and two versions of those,anything else that you-
Renee (22:26):
I really find healing in nature for me personally, and I
know not everybody's a naturegirl, but Harvey and I would
walk every morning in theneighborhood, and we would hike
on the weekends. So I continuedthat, and it, you know,
sometimes it felt like Harveywas with me. We've done as a
family a few commemorativethings. We planted a tree using
(22:48):
his ashes in the base.
Virginia (22:50):
Oh, nice.
Renee (22:51):
Yeah.
Virginia (22:51):
Very nice.
Renee (22:52):
So if you can find little rituals and commemorative things
to do along the way, I thinkthat helps with grief and
staying in community. Being acaregiver can be so isolating,
but staying in community withyour friends and family is so
supportive. I couldn't have doneit without my friends and
family.
Virginia (23:13):
Your journaling and your friends and family.
Renee (23:15):
Absolutely.
Steve (23:17):
Yeah.
Renee (23:17):
I wasn't good at asking for help, but what I was good at
was being vulnerable enough tohelp people what was going on at
home, and then they would offerspecific help. And I learned to
accept it.
Virginia (23:31):
Right, which is not always easy to do-
Renee (23:34):
No, not at all.
Virginia (23:35):
-but we should do it.
People want to help.
Renee (23:39):
Absolutely. I will say this. People will say, "How can
I help? I want to help you as acaregiver." To be honest, that
felt like one more thing on myto do list.
Steve (23:50):
One more task.
Virginia (23:51):
One more thing to do.
Renee (23:53):
Yes, right? So if you can offer a specific something, or
if someone offers a broadstatement like that. If you have
something in your back pocketand you can pull out and say:
"You know what? Do you think youcould cut my grass this next
Saturday? I can't get to it."Something specific on both way
seems to work better than thesegrand offers.
Virginia (24:16):
Right, right, I remember in one part of your
book, you mentioned that therewas a spot, you were kind of
losing your hair. You said itwas probably from stress.
Renee (24:27):
Yeah!
Virginia (24:28):
What are like, physical things that caregivers
should really be aware of?
Renee (24:34):
That's a really good question. I think the hair loss
was probably pretty odd, but itwoke me up. Yeah, you have a
little stress there, Renee,getting bald spots! But
headache, loss of appetite, orincreased appetite, you find
yourself eating more. Chestpain, fatigue, overriding
(24:55):
fatigue, where you cannot doanything. You know, stress
decreases your immunity, so youmight have more colds, or you
might be more prone to otherunderlying illnesses, if your
immune system is under attackbecause of the stress that
you're feeling.
Virginia (25:12):
Lack of sleep.
Renee (25:13):
Oh, absolutely, yeah, insomnia, that was the deal
breaker for me, was actually, ifmy sleep is interrupted where I
can't function the next day, I'mgonna have to make a change.
Virginia (25:24):
That's when you really started looking for-
Renee (25:27):
For care outside the home, yeah, for me, that was my
deal breaker.
Virginia (25:32):
We're wondering how you handled your grief, family
grief after Harvey passed.
Renee (25:39):
Well, he actually passed at the end of October, and we
had his memorial service in themiddle of November, and
Thanksgiving was just right thenafterwards, and I remember my
mother made this beautifulstatement of gratitude for
Harvey in our lives and the giftthat was Harvey to all of us at
(26:04):
this big Thanksgiving table.
Instead of glossing over it orignoring it, she acknowledged
it-
Virginia (26:11):
Nice.
Renee (26:11):
-in a beautiful way that I don't think I could have, but
she did.
Virginia (26:15):
Wonderful.
Renee (26:16):
And that was the beginning of remembering Harvey
with more love than sorrow.
Virginia (26:20):
Right, right.
Renee (26:21):
So then when Christmas rolled around, one thing I did
when he passed away, I had afriend who wanted to coordinate
meals, and I had the wherewithalto ask for a meal once a week,
and we had meals brought to usonce a week all the way through
December, and me and mydaughters and their guys, all
five of us would gather once aweek for family dinner, and that
(26:46):
was life saving to gather all ofus together through
Thanksgiving, through Novemberand December, and when Christmas
came, I made sure we kept thesame traditions, the same food,
the same gift giving, the sameCDs that my daughters laugh at,
but I don't care, we're going tolisten. And I gifted them with
(27:06):
something of Harvey's. I think Igave one son in law a watch and
another son in law a pocketknife, and I gave the girls-
Virginia (27:14):
What a good idea.
That's nice.
Renee (27:18):
And that was nice. And I have to say, there was not as
much grief and sorrow as Ithought there would be. There
was a good bit of reliefactually. The prior two
Christmases were horrible. Onehe was in a nursing home that
was dank and really hard, andthe other was a geriatric
(27:40):
psychiatry unit that he was infor six weeks, so we celebrated
Christmas at the geriatricpsychiatry unit. So not having
to manage that, that first yearthat he was gone was a relief,
and I felt a little guilty aboutthat, right?
Steve (27:55):
Oh, for sure.
Renee (27:56):
Yeah.
Virginia (27:57):
Exactly.
Steve (27:58):
Well, this kind of relates. Are you still
practicing medicine?
Renee (28:02):
No. I retired in 2019 just before COVID hit.
Steve (28:07):
Oh, wow.
Virginia (28:07):
Oh, my goodness.
Renee (28:08):
I know. I know.
Well I always think it'sinteresting to hear from a
physician, especially one who'sbeen a caregiver like you have.
If there's one thing that youwould tell caregivers, from your
perspective as a physician thatcould make the easier for the
physician to be a betterassistant- a better help in the
whole process. Because I thinkfinding a really good physician
(28:32):
is really, really valuable,because they become kind of part
of the team, rather than justsomebody you see once a year.
Yeah, no, the more informationyou bring to the physician, the
better it is. And if you feeluncomfortable talking about your
loved one in front of thephysician, I get that, but write
a letter, flip it to the nurse,go on the portal and report
(28:53):
everything you're seeing andevery question you have, because
physician needs as muchinformation as possible to make
decisions. Yeah, absolutely.
Steve (29:04):
I totally concur. But I thought it would be interesting
to hear what you had to say fromyour perspective, because you
you are a physician.
Renee (29:11):
And I would say, if somebody came by themselves, a
patient with dementia, I wouldalways call the closest family
member and tell me what you'reseeing.
Steve (29:20):
I have another question, if you don't have one Virginia,
but go ahead.
Virginia (29:23):
No, I'm good. I'm good. We're getting ready to
wrap up, but you go ahead.
Steve (29:27):
This might be too long so you can say pass. Harvey had
early onset. Where are your kidshead on their minds right now,
on this whole issue? Patty wasessentially early onset. She was
diagnosed at 60, and theyconsidered early onset, and so
I've got two sons and adaughter, and curious how your
(29:49):
kids reacted to this evolutionissue?
Renee (29:52):
Yeah, very, very good question. They were both,
especially the oldest, reallyconcerned. And eventually I did
have Harvey genetically testedto see if he carried one of
these genes that if passed down,you will get it. He did not have
that. So their risk of gettingAlzheimer's are the same as you
(30:14):
and me, the same as anyone. Sowhen I told them that, it
actually did not relieve theirstress.
Steve (30:21):
Interesting.
Renee (30:22):
That, well, if he could get it without the gene, maybe
I? That was early on. I'm notsure where they are now, they've
gotten on with their lives. Ihave grandchildren.
Virginia (30:30):
Oh how nice.
Steve (30:31):
Good. Well, thank you.
Virginia (30:32):
That's wonderful.
Well, you've really given us alot of great information today.
We will post the name again, ofyour book, which is so good.
Surfing the Waves of
Alzheimer's (30:45):
Principles of Caregiving that Kept Me Upright,
and the listeners can find thatin the show notes, as well as a
link to your website.
Renee (30:53):
Great. Thank you!
Virginia (30:54):
And thank you so much for joining us, and for our
listeners today, thank you forjoining us and join us again
soon on Spotlight on Care.
Steve (31:06):
Spotlight on Care is produced by the University of
California Irvine, Institute onMemory Impairments and
Neurological Disorders, UCIMIND. Interviews focus on
personal caregiving journeys,and may not represent the views
of UCI MIND. Individualsconcerned about cognitive
disorders, prevention, ortreatment should seek expert
(31:27):
diagnosis and care. Pleasesubscribe to the Spotlight on
Care podcast, wherever youlisten. For more information,
visit mind.uci.edu.
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