Spotlight on Care: Alzheimer's Caregiving
Welcome to Spotlight on Care, the podcast where we share stories, experiences, tips and advice on caring for loved ones affected by Alzheimer’s and other dementias. Spotlight on Care is produced by the University of California, Irvine Institute for Memory Impairments and Neurological Disorders, UCI MIND. Please subscribe to the Spotlight on Care podcast wherever you listen. For more information, visit mind.uci.edu. What would like to hear about next? Email us at mwitbrac@uci.edu.
Spotlight on Care: Alzheimer's Caregiving
The Journey Through Grief with Dr. Renée Harmon
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:
From the University of California, Irvine. This is UCI MIND's Spotlight on Care, the podcast where we share stories, experiences, tips and advice on caring for loved ones affected by Alzheimer's and other dementias.
Virginia:Hello, and welcome to Spotlight on Care. I'm Virginia Naeve, and I'm here with my wonderful co-host, Mr. Steve O'Leary. Our guest today is Dr. Renee Brown Harmon, who will talk to us about grief. Dr. Harmon is a retired family physician and lives in Birmingham, Alabama. She had, what she called a perfectly balanced, charmed life. She met Harvey in college, and close to graduation, they started dating each other. They both wanted to be physicians and were accepted to the same medical school. They were soon married. Family medicine was the specialty that they were both interested in,and after their education and residencies, they moved to Birmingham and opened their office called Double Oak FamilyMedicine in 1992. They felt they were two halves of a
whole:equals. They shared the medical practice, household chores, cooking, and raising their two daughters. They had an ideal life as partners, parents and physicians. Then, the charmed life took a very different turn for both of them. Harvey, at age 49, started showing signs of younger onset Alzheimer's disease. Welcome, Dr. Harmon, we're glad you're here with us today.
Renee:Thank you. Glad to be here.
Virginia:I'll call you Renee, if that's okay.
Renee:Sure.
Virginia:Okay. Here's the spot where Steve and I like to say just a little something quickly about the topic we're going to be discussing. So Steve, tell us a little bit about the process of grief that you went through when taking care of your wife, Patty, who had Alzheimer's.
Steve:Yeah. Well, first of all, Renee, I share your experience. I found Patty in college, this beautiful red-headed woman, and long story short, we got married in college and then moved to New York, and I lost her after 48 years of marriage. So it was a wonderful partnership. We worked together. So similar story.
Renee:Yeah.
Steve:I think my grief really started much sooner than actually Patty passing, and to some degree that was good, and some degree it was bad, but I felt that it started, especially started when I made the decision about a community, and the sense of guilt that I felt, kind of moved into grief, and I knew where we were heading, and when that became more apparent, then it was okay, it started. In some respects it was good, because at the end, I didn't have this overwhelming sense of loss. I've had that feeling for quite a while.
Virginia:I hadn't asked Steve before what he was going to say, and I just knew what I was going to say, which was my grief process started definitely before mom passed; I lost her over eight years, and it was something I just had to kind of get a grip on. And I have learned since, since we were going to be speaking with you, that there's a lot to grief to understand. I had no idea, but yes, I went through a lot of the grieving process before she passed. But before we start to discuss our topic for today on grief, I want you, Renee, to tell our listeners a bit about your story. Let's start with the family vacation you took in Costa Rica.
Renee:Sure. So it was on that big family vacation when I had that first jolt of just fear that there was something wrong with Harvey's cognitive abilities. He just could not keep up with what the guide was telling us to do. Every day he would ask, "Now, what time is breakfast? What am I supposed to wear today? I don't remember what activity we're doing." It was eye opening and shocking, and he realized it himself. And at the end of that vacation, our last day there, he admitted that he felt off all week. That was his word. It felt more than off to me. So I asked him some questions. Now, because we were both doctors, he would know what I was doing if I asked the mini mental status exam questions. Right, name these three things. So I asked birthdays, and with a lot of thought, he could come up with our birthdays, mine and our two daughters. But he could not come up with the birth years of our daughters, which was really odd, and he couldn't even do the mental math to calculate their birth years, when I gave him clues. 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 or my woman's intuition, but something was telling me, this is not right. He wanted to work on brain training games, so we struck a bargain. His scores didn't improve, and eventually he did decide that he would see the neurologist. So four months after Costa Rica, in that four months time, I was on the internet searching, "Could this be Alzheimer's?" He's 49 years old. I'd never seen younger onset. I knew it was rare. I found an article by the Alzheimer's Association that listed 10 warning signs, and I realized he had exhibited six or seven of those on that trip. So I got him to the neurologist. He was diagnosed with mild cognitive impairment, and we were told it wasn't Alzheimer's, because it wasn't affecting his daily life. So when I asked,"How am I gonna know?" the neurologist was unhelpful and said, "You'll have to watch him really closely." That's impossible to do in a medical practice, right? He had his exam rooms and his patients. I had my exam rooms and my patients. There was no way I would know what was going on in those exam rooms. So I just worry. I just worried. 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 information about physicians who were impaired with drugs or alcohol, and programs to rehabilitate them to get back to practice, but nothing about cognitive impairment. Even our own state medical licensing board had programs to rehabilitate physicians, and they had an anonymous tip line.
Virginia:Which you called.
Renee:I sat with that information, knowing that I was going to call and turn in my husband.
Virginia:Oh boy.
Renee:As an impaired physician. What I really wanted was like a kind colleague to answer the phone and walk me through the steps. So I got up the courage and called because our patients were my responsibility.
Steve:Oh, yeah, for sure.
Renee:And Harvey would say things like, I'm going to count on you to tell me when I should retire, which was also not helpful. So I did. I got up that courage, and I called our state medical licensing board and got a lawyer.
Virginia:Oh.
Renee:and I, oh , I still get chills when I tell this part of our story. I- but I told our story without telling our names, our location, and he was actually very kind and agreed with me that it was putting me in an untenable position-
Virginia:Okay
Renee:-as his wife and his partner, and that I needed a professional to help me make this decision, but he didn't tell me what. So I got back on the internet and decided that neuropsychological testing would be the way to answer that particular question. And fortunately, we have a very good department at the teaching hospital here in Birmingham, but it's quite aprocess to get in, get tested, have the results. So nine months after Costa Rica, he was diagnosed with Alzheimer's disease.
Virginia:Okay so that was probably the point where you're thinking, he's got to retire.
Renee:Right, and he was told your cognitive impairment is to the point that you should no longer practice medicine.
Virginia:Okay, so that was officially your start or beginning of your eight year journey as a caregiver.
Renee:Yes.
Virginia:Okay.
Renee:Yes, indeed.
Virginia:Fortunately, you kept journals, which were your guide for writing your book. And I have to tell our listeners, your book is absolutely wonderful. It's called Surfing the Waves of
Alzheimer's:Principles of Caregiving That Kept Me Upright. And the stories are wonderful. Thank goodness for your journals, huh?
Renee:I know, right. I had six full journals.
Virginia:Oh, amazing. And then at the end of each chapter you have an instructional guide, almost, or tips or caregiving concepts and ideas for other people to handle a similar situation, right?
Renee:Right. Each chapter is titled a particular caregiving principle and then illustrated with story. And then there are practices, is what I call them in the book, that someone can do to solidify that particular practice.
Virginia:Wonderful, yeah, it's really good. And in the show notes, we'll put the name of your book and links to your website. All right. So let's start our discussion about grief, as I understand it, there are stages of grief and there are forms or types of grief. So first, tell us about the stages.
Renee:So a lot of your listeners may be aware of the work that Dr. Elizabeth Kubler Ross did in developing these five stages of grief. That work was done in 1969 and her population that she was studying were patients who had been diagnosed with a terminal illness. So bear that in mind, these five stages pertain to patients who had a terminal illness. Since then, we've expanded it to include family and friends who have a loved one with a terminal illness, and we've expanded even more to include huge life changes like a divorce or a loss of a job. Anything that causes loss can trigger these five stages of grief, right?
Virginia:Interesting.
Renee:So, yeah, think about it that way. You lose your job, you're going to grieve that loss if 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:Let me remember it.
Renee:Denial, Anger, Bargaining, Depression, Acceptance. So as it pertains to Alzheimer's disease and my particular journey, I began grieving as soon as I knew something was wrong, and when I had that inkling that this is probably Alzheimer's disease, maybe because I'm a physician and I knew what the trajectory of the disease looked like, but I had exhibited all five of these in different times. That's another thing that you have to remember. These five stages of grief aren't boom, 1,2,3,4,5- you do this one for five months,
Virginia:Not in order. Yeah, okay.
Renee:You don't go in order necessarily. You can hop around and they're just nice tag words to name what you're going through-
Steve:Experiencing.
Renee:Experiencing! So denial, I would routinely say, and that's what I was probably doing early on, when he was complaining about his memory. What middle aged man doesn't get forgetful from time to time, right? And I've heard of families who can really do denial with depression for a long time. Yeah, that's fairly common. Anger was a big response
Virginia:Long time. for me. I was angry that he got this, not angry at him, or angry atGod even, but just angry that he because he had done
everything right:he had eaten right,
Virginia:He exercised. He was a runner, right?
Renee:He was a marathon runner, fabulous marathon runner. He did everything right. And I was angry that everything was going to land on my shoulders.
Virginia:Yeah.
Renee:Because I knew as his abilities decreased, my responsibilities would increase, and I was going to have to shoulder everything, and that made me angry.
Virginia:Well you were partners before, and you split everything-
Renee:Right.
Virginia:-and now it's gonna go all to you.
Renee:That's what it felt like. And it did. I mean, yeah, it did. Bargaining that third stage was less of an issue, I think because I knew younger onset could be genetic, and I would have thoughts like, "Please don't let the daughters get this. If anybody's got to get it, let it be me." But that was pretty like, depression was probably the hardest and just deep, deep sadness over what I was experiencing, what my daughters were going to experience, and more importantly, depression over what Harvey was going to have to experience-
Virginia:Right .
Renee:-and what he was going to miss for the rest of his life. Did you and Harvey talk about that at all? About what he was He was not going to be there for weddings and grandchildren and going to miss? No, he did not want to talk about it, and he had some just deep, deep sadness. denial. So I would bring up something, and he would say,"I'm not going to get any worse." And he pretty much would shut me out. And that hurt, because I was losing my confidant, my soul partner, who I would talk to everything about. So that's one of the reasons the journal saved me, because I could talk to the journals. No, I wish we had for my sake, but I think he was maybe protecting himself, and it's possible he was thinking about this and didn't need to talk to me about it, because he was already doing that.
Virginia:There's probably only so much of this that you could talk about with your daughters. They're seeing this from a kind of a different perspective from yours.
Renee: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 the greatest memory, and would say things like, "You better come pick me up, Mom. I don't think Daddy can find this house." And then the 17 year old knew of Alzheimer's and I knew it was for old people, so that was confusing. And one of the first things she said to me was, "Will he forget who I am?" And I had to kind of say that might happen, but it'll be years from now. But it affected both of them dramatically in different ways because of their ages. I don't know what grief was like for them.
Virginia:That'd be an interesting discussion sometime. And acceptance is the last one on Elizabeth Kubler Ross's list.
Renee: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 eight years of Harvey's illness. Less denial as time went on, but the anger and the depression and acceptance would just kind of rotate through at various times.
Steve:Like cycles, yeah.
Renee:Yes, cycle through it.
Virginia:I check in quite often to the Mayo Clinic. They call it the Mayo Clinic Connect. It's an online caregiver support group,
and there was a post entitled:No Longer a Caregiver. What Am I? And that person sounded lost. I read her paragraph, and you have a little something to say about a possible sixth stage of grief.
Renee:Well, I would echo a lot of caregivers do find themselves lost when that role is gone. Now it wasn't something I experienced, and I think it's because I continued to work, I continued to have interactions with other people, but when you are isolated as a primary caregiver, and that's all you're doing, when that goes away, yeah, there is grief at the loss of your role that can be hard.
Virginia:Right, right. You mentioned David Kessler, a colleague.
Renee:Yeah, let's talk about David Kessler. He was a colleague of Dr. Elizabeth Kubler Ross, and he came up with
a sixth stage of grief:Finding Meaning. And he has a book about that. And finding meaning might be something as grand as writing a book or starting a podcast or starting a support group, but the favorite definition I found in his book was "When you can remember the loved one with more love than sorrow."
Virginia:I love that.
Renee:Yeah, and that takes some time.
Virginia:Yeah, it does. It does, okay. So let's move into the types of grief. Explain to our listeners what is ambiguous loss?
Renee:So I found out about ambiguous loss from my oldest daughter, who is a social worker. This term was coined by Pauline Boss in the 1970s; she was working with families where there was this Vietnam soldier who had been missing in action, right? So they're presumed dead, but there's no body. There's difficult to get closure. So say someone goes missing in the desert or on the ocean, there's no body to grieve. That there's this ambiguous loss. Well, it can also apply where the body is present, but the personality is so changed, and that is what dementia can cause. So he's right there in front of me. He looks the same, but he's not the same. I love the word ambiguous, and that is perfect for that feeling like, "How can I grieve you when you're right in front of me?"
Virginia:Right, very confusing.
Renee:Yeah.
Virginia:Anticipatory grief, and how that relates to dementia?
Renee:That is the kind of grief where you know that your loved one will pass away from any terminal illness, so you're anticipating that it's going to come, 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, and it's more difficult and it's shorter,.
Virginia:Okay, and disenfranchised grief was interesting because you said your grief is discounted. People try to be helpful, but they say the wrong things. And I just noticed, when mom had dementia, people would say to me something like, "Well, she doesn't know what's going on. She doesn't know what she has," And I'm thinking, "Oh, that is so wrong." My mom knew there was something wrong. She really did, and I was grieving. And they were like, discounting my grief-
Renee:Right.
Virginia:-they were, in a way, telling me I shouldn't be grieving.
Renee: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've said things like that myself, you know?
Virginia:I know.
Renee:Oh, she looks really good today. You come live with her.
Virginia:Exactly, exactly.
Renee:Yeah. It just makes you feel like you're not being seen or heard sometimes.
Virginia:Exactly.
Steve:You know, I have a question here. I think when we talk to people who are, they've gone through the period of the person passing, and they're still grieving, and they ask the question often, "When will this end?" And of course, it's different for everybody. I'm interested in your comment about that, but mostly, what have you found or investigated that are ways to kind of help alleviate that grief.
Renee:Okay, well, let me address the first one. In medical school, we were taught that grief lasts about a year, and like you said, that's different for everyone. There's another term called complicated grief. When the grief is debilitating and tends to last longer than a year, you should actually seek help if you're so debilitated. There are several things that I did to help combat grief during and after. Right? The journaling was helpful for me to get my emotions out onto the page. I sought counseling as soon as Harvey was diagnosed, just preventatively, because I knew it was going to be difficult, and some people might balk at that, but I knew it was going to be important for me to find a professional counselor who didn't know our story already, or he or she would have an unbiased opinion of the process, unlike my friends or family, right?
Steve:Yes.
Renee:A dementia support group, a grief support group.
Virginia:Now those are two different things, right? You've got dementia support groups, but I didn't know that there was such thing as a grief support group. But apparently-
Renee:There are grief support groups for any death that can be helpful. Now I actually joined a grief support group while Harvey was still alive. It was at my church. I knew it was a little weird, and I asked the facilitators permission, and they asked the other participants if they thought it would be okay, and they allowed me, and that was very helpful for me to express my grief alongside these other people who were grieving their loved ones. But that's an exception.
Virginia:But they accepted you as part of the group.
Renee:They did. They did. But a grief support group once someone passes away, might be really helpful.
Steve: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:I really find healing in nature for me personally, and I know not everybody's a nature girl, but Harvey and I would walk every morning in the neighborhood, and we would hike on the weekends. So I continued that, and it, you know, sometimes it felt like Harvey was with me. We've done as a family a few commemorative things. We planted a tree using his ashes in the base.
Virginia:Oh, nice.
Renee:Yeah.
Virginia:Very nice.
Renee:So if you can find little rituals and commemorative things to do along the way, I think that helps with grief and staying in community. Being a caregiver can be so isolating, but staying in community with your friends and family is so supportive. I couldn't have done it without my friends and family.
Virginia:Your journaling and your friends and family.
Renee:Absolutely.
Steve:Yeah.
Renee:I wasn't good at asking for help, but what I was good at was being vulnerable enough to help people what was going on at home, and then they would offer specific help. And I learned to accept it.
Virginia:Right, which is not always easy to do-
Renee:No, not at all.
Virginia:-but we should do it. People want to help.
Renee:Absolutely. I will say this. People will say, "How can I help? I want to help you as a caregiver." To be honest, that felt like one more thing on my to do list.
Steve:One more task.
Virginia:One more thing to do.
Renee:Yes, right? So if you can offer a specific something, or if someone offers a broad statement like that. If you have something in your back pocket and you can pull out and say:"You know what? Do you think you could cut my grass this next Saturday? I can't get to it." Something specific on both way seems to work better than these grand offers.
Virginia:Right, right, I remember in one part of your book, you mentioned that there was a spot, you were kind of losing your hair. You said it was probably from stress.
Renee:Yeah!
Virginia:What are like, physical things that caregivers should really be aware of?
Renee:That's a really good question. I think the hair loss was probably pretty odd, but it woke me up. Yeah, you have a little stress there, Renee, getting bald spots! But headache, loss of appetite, or increased appetite, you find yourself eating more. Chest pain, fatigue, overriding fatigue, where you cannot do anything. You know, stress decreases your immunity, so you might have more colds, or you might be more prone to other underlying illnesses, if your immune system is under attack because of the stress that you're feeling.
Virginia:Lack of sleep.
Renee:Oh, absolutely, yeah, insomnia, that was the deal breaker for me, was actually, if my sleep is interrupted where I can't function the next day, I'm gonna have to make a change.
Virginia:That's when you really started looking for-
Renee:For care outside the home, yeah, for me, that was my deal breaker.
Virginia:We're wondering how you handled your grief, family grief after Harvey passed.
Renee:Well, he actually passed at the end of October, and we had his memorial service in the middle of November, and Thanksgiving was just right then afterwards, and I remember my mother made this beautiful statement of gratitude for Harvey in our lives and the gift that was Harvey to all of us at this big Thanksgiving table. Instead of glossing over it or ignoring it, she acknowledged it-
Virginia:Nice.
Renee:-in a beautiful way that I don't think I could have, but she did.
Virginia:Wonderful.
Renee:And that was the beginning of remembering Harvey with more love than sorrow.
Virginia:Right, right.
Renee:So then when Christmas rolled around, one thing I did when he passed away, I had a friend who wanted to coordinate meals, and I had the wherewithal to ask for a meal once a week, and we had meals brought to us once a week all the way through December, and me and my daughters and their guys, all five of us would gather once a week for family dinner, and that was life saving to gather all of us together through Thanksgiving, through November and December, and when Christmas came, I made sure we kept the same traditions, the same food, the same gift giving, the same CDs that my daughters laugh at, but I don't care, we're going to listen. And I gifted them with something of Harvey's. I think I gave one son in law a watch and another son in law a pocket knife, and I gave the girls-
Virginia:What a good idea. That's nice.
Renee:And that was nice. And I have to say, there was not as much grief and sorrow as I thought there would be. There was a good bit of relief actually. The prior two Christmases were horrible. One he was in a nursing home that was dank and really hard, and the other was a geriatric psychiatry unit that he was in for six weeks, so we celebrated Christmas at the geriatric psychiatry unit. So not having to manage that, that first year that he was gone was a relief, and I felt a little guilty about that, right?
Steve:Oh, for sure.
Renee:Yeah.
Virginia:Exactly.
Steve:Well, this kind of relates. Are you still practicing medicine?
Renee:No. I retired in 2019 just before COVID hit.
Steve:Oh, wow.
Virginia:Oh, my goodness.
Renee:I know. I know. Well I always think it's interesting to hear from a physician, especially one who's been a caregiver like you have. If there's one thing that you would tell caregivers, from your perspective as a physician that could make the easier for the physician to be a better assistant- a better help in the whole process. Because I think finding a really good physician is really, really valuable, because they become kind of part of the team, rather than just somebody you see once a year. Yeah, no, the more information you bring to the physician, the better it is. And if you feel uncomfortable talking about your loved one in front of the physician, I get that, but write a letter, flip it to the nurse, go on the portal and report everything you're seeing and every question you have, because physician needs as much information as possible to make decisions. Yeah, absolutely.
Steve:I totally concur. But I thought it would be interesting to hear what you had to say from your perspective, because you you are a physician.
Renee:And I would say, if somebody came by themselves, a patient with dementia, I would always call the closest family member and tell me what you're seeing.
Steve:I have another question, if you don't have one Virginia, but go ahead.
Virginia:No, I'm good. I'm good. We're getting ready to wrap up, but you go ahead.
Steve:This might be too long so you can say pass. Harvey had early onset. Where are your kids head on their minds right now, on this whole issue? Patty was essentially early onset. She was diagnosed at 60, and they considered early onset, and so I've got two sons and a daughter, and curious how your kids reacted to this evolution issue?
Renee:Yeah, very, very good question. They were both, especially the oldest, really concerned. And eventually I did have Harvey genetically tested to 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 getting Alzheimer's are the same as you and me, the same as anyone. So when I told them that, it actually did not relieve their stress.
Steve:Interesting.
Renee:That, well, if he could get it without the gene, maybe I? That was early on. I'm not sure where they are now, they've gotten on with their lives. I have grandchildren.
Virginia:Oh how nice.
Steve:Good. Well, thank you.
Virginia:That's wonderful. Well, you've really given us a lot of great information today. We will post the name again, of your book, which is so good. Surfing the Waves of
Alzheimer's:Principles of Caregiving that Kept Me Upright, and the listeners can find that in the show notes, as well as a link to your website.
Renee:Great. Thank you!
Virginia:And thank you so much for joining us, and for our listeners today, thank you for joining us and join us again soon on Spotlight on Care.
Steve:Spotlight on Care is produced by the University of California Irvine, Institute on Memory Impairments and Neurological Disorders, UCI MIND. Interviews focus on personal caregiving journeys, and may not represent the views of UCI MIND. Individuals concerned about cognitive disorders, prevention, or treatment should seek expert diagnosis and care. Please subscribe to the Spotlight on Care podcast, wherever you listen. For more information, visit mind.uci.edu.
