When You're Not the Caregiver: Guilt and Grief with Cindy Weinstein

In this episode, Virginia and Steve are joined by Cindy Weinstein, Ph.D., who co-authored a book with neurologist, Dr. Bruce Miller titled, Finding the Right Words: A Story of Literature, Grief, and the Brain. Dr. Weinstein talks about the guilt and grief she dealt with after her father was diagnosed with Early-Onset Alzheimer's Disease. She describes the challenges of being away from him while in graduate school, and the different strategies she used to stay connected and to manage her sadness.

Transcript

Intro: 0:06  

From the University of California, Irvine, this is UCI MIND, 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: 0:24  

Hello, I'm Virginia Naeve, and this is spotlight on care. I'm here with my wonderful co-host, Mr. Steve O'Leary. Today, we have a guest who will try to help us understand the process of caregiver guilt and grief. To experience intense emotions of grief does not require someone to be the daily hands-on caregiver to their loved one with Alzheimer's disease. Before I introduce our guest, Steve and I like to say a few words about our own experience, which might relate to what our guest has to say, Steve, what do you have to say today?

Steve: 1:05  

Tough topic. Guilt and grief are two of the major experiences you go through in this journey. I guess the biggest thing I can relate to, is the versus guilt versus grief. They're both important and powerful messages, or experiences that you go through in the journey. For me probably the strongest was the guilt that I felt, placing my wife Patty in a community making the decision that I couldn't or shouldn't continue to care for her at home. You feel like, well, you're, you're not good enough. You're not capable enough, you've you thought you were good enough, but you're not. And lo and behold, you know, you find out that there are lots of people who realize that the care that they could get in the community is better than the care that you personally could have provided at home. And, and so it takes a long time to get over that guilt. But eventually I have

Virginia: 2:09  

I have the same I know exactly what you mean, I had the same kind of guilt. But I think the guilt that I felt more profoundly was when people would comment that you're not there every day. I was still raising two kids, I had a house, a busy household, husband, two kids, I could not be there every day. And I know there are some people who thought I should have been, and I naturally felt guilt and my husband kept reminding me, you know, you can't do that to yourself. Let me introduce our guest and tell you a little bit about her. Today we have with us Professor Cindy Weinstein, who received her PhD in English from UC Berkeley, and has been teaching English and literature at the California Institute of Technology since 1989. Because of her father's Alzheimer's disease, she felt a strong need to understand more about the brain. In 2018, she applied for and was accepted as an Atlantic fellow in the global brain health institute, based at UCSF. She studied neurology there for a year. Cindy felt the need to write a book about her father's Alzheimer's disease, but she didn't want to write it by herself. She teamed up with Dr. Bruce Miller, a distinguished professor of neurology at UCSF, and together they wrote a very insightful book called Finding the right words. This book is written from the perspective of a daughter trying to understand her father's illness, and the perspective of a scientist who explains what was happening to her father's brain. Cindy wanted to come to terms with her father's disease, and try to understand why she after 30 years, was still experiencing guilt and grief. Welcome, Cindy. We're glad you're here with us today.

Cindy: 4:17  

Thank you so much, Virginia and Steven. It's really, I'm so happy to be here with you. Thank you.

Virginia: 4:25  

Well, thank you. Let's start at the beginning. You adored your father. It was in the early 80s. And even though you were at college 3000 miles away, you still had many visits and conversations with your dad. You may not have been living in the same house or even nearby. But tell us what signs you were noticing that something wasn't right.

Cindy: 4:49  

It was in graduate school. Just to clarify that. My father was in New Jersey, and I was in California and I started my PhD program at Berkeley in 1982. My mother was already living in Florida at the time and my father had sold his business and was transitioning to moving down to Florida to be with her. And I noticed that the conversations we had on the telephone were different than what they had been before that my father's responses to what I was saying, tended toward the monosyllabic when I would ask him a question, I really wouldn't get a very full response. And then I noticed increasingly that my mother, when they were together in Florida, would speak for both of them. And so it was really on the phone, that I noticed something was off. And then we also in those days, wrote letters to each other. And I noticed my father's handwriting, which was always appalling to be perfectly frank, started getting weird. And it was almost as if the handwriting was exhibiting a kind of lack of control. And I didn't know what to make of it, because his handwriting was always terrible. Anyway, I just thought, okay, it's getting worse. But there were symptoms, that looking back, I know, indicated that something was wrong. But at the time, I just observed them and really didn't know what to make of them.

Virginia: 6:53  

You know, I remember my mother's handwriting was frankly, beautiful. And the more she progressed in her disease, I noticed her handwriting changing. And I've never heard that from anybody else. But hearing that from you, has reminded me that it was starting to look like a third grader.

Cindy: 7:13  

I also noticed, I should add that my father's mood started changing significantly. And I remember bringing my then boyfriend, now husband, to New Jersey, and I was so excited for Jim to meet my dad. And when we were there, I remember distinctly saying to Jim, that this was a different dad, that he was meeting. And again, I attributed the mood change to having sold his business and transitioning, and there were just these really big life changes that explained why he would be depressed or, you know, he wasn't apathetic, but more sort of withdrawn.

Virginia: 8:05  

Yes. I remember I read your book and enjoyed it thoroughly. And I do remember that Dr. Miller explained that it's not uncommon to have a severe mood change be the first sign.

Cindy: 8:20  

Exactly. Yeah. And that was very illuminating. When Bruce gave his, they're called Grand Rounds in medical school. And he was talking about Parkinson's specifically, and that he used the word ferocious depression that sometimes accompanies people with Parkinson's. And what he said was that changes in mood were not necessarily a reaction to the dementia, but the dementia itself. And I think that's important for people to know and for caregivers to know that mood can be a sign of something wrong.

Virginia: 9:07  

Yes, yes, most definitely. Let's just go on to the time of diagnosis. And I noticed that your mother did not really want to discuss the possibility of your father being diagnosed with Alzheimer's and she was trying to keep everything from you apparently. Tell us about that.

Cindy: 9:29  

A couple of things. My mother and father knew that, I wanted to become a professor and had always loved reading and this was my life's dream. In fact, my mother was the one who made sure I got to Andover when I was 16 and studied literature and they were so supportive of what I was doing. And my mother thought that maybe she could, she could prevent me from knowing that my dad was sick because she was worried if I knew that I may not finish my degree. And that was a reasonable concern. However, at a certain point, my father's disease progressed and there was no hiding from it. So she told me, and I think the other reason she was so conflicted about it is my father would have taken his life if he had been given the diagnosis at a time, when he could have acted on it. And he had said, I remember when we were growing up, that this is how I want to live. And this is how I want to die. Wasn't a nightly conversation or anything, but it was very clear that he had strong opinions on the matter. And my mother was terrified of that. And at the time, in the 80s, the the research on dementia, really no one knew what, what would lay ahead. So those were the those were the reasons why she wanted to keep it to herself.

Virginia: 11:35  

And they always seem to back then, they diagnosed simply as Alzheimer's disease, tell us what your your dad's diagnosis ended up being specifically.

Cindy: 11:46  

So this was a really huge moment for me, I was sitting in Bruce's office, and we were talking about the book. And Bruce wanted me to write a chapter on diagnosis, I wasn't going to write a chapter on diagnosis. When I first went up north, I was telling Bruce about my father's symptoms, and his age. So my dad was diagnosed in his 50s. And, and then Bruce said to me, your father didn't have Alzheimer's, exactly what he had was early onset Alzheimer's with the logopenic variant

Virginia: 12:33  

which I had never heard of before, by the way,

Cindy: 12:37  

right. And so the first part is easy to understand. The way scientists define early onset is 65 or younger. And the logopenic variant from what I understand is slightly rare form the, the hippocampus, which, which is what gets attacked first. And again, I'm an English professor. So I'm doing a lot of translating here that it was a different part of the brain that was initially the word is insulted. That's the scientific word by the disease, and it was the word finding circuitry that my father was having so much difficulty with. And so that's why it's called the logopenic variant 

Virginia: 13:34  

When they came to visit you in Berkeley. Tell us about your trip to the grocery store and what he what was the word he was trying to find.

Cindy: 13:44  

So as both of you know, anecdotes, memories, they're emblazoned in your brain. And one of the, one of the I think this was probably the one that made me want to write the book, was going to the supermarket with my father in Berkeley, we were going to make dinner he and my mom were visiting me. And dad wanted something on his salad, and didn't know what the word was. Turns out, what he wanted was croutons. And so I tell the heartbreaking story of going to the supermarket with my father, me having a kind of black belt, in words and language. And initially thinking that my intellect would be able to help my father get the word. And that was wrong. What eventually helped my father get the word was seeing the croutons. But it was extraordinarily painful witnessing him chasing a word that he couldn’t find.

Virginia: 15:07  

Right? I had, long before I knew what Alzheimer's even was. My husband and I were newly married. And we lived in Dana Point. And our neighbor came over one day and she said, My father is stroking his head and saying, Where is my, where is my, and he couldn't come up with the word comb. And I thought, What the heck, you know, obviously, he was on his way. It's stunning. The things that can happen that shake you up as a daughter, as someone who loves someone, you're you mentioned that your father loved to play golf. And I found it interesting that Dr. Miller described the area of the brain that is critical for that skill is injured by Alzheimer's.

Cindy: 16:03  

Right. There was a lot of spatial disorientation that my father experienced. And I think this is not all that unusual car rides, that should take 10 minutes end up taking hours because the person gets lost. The story about golf that I tell is one that I think is really about stigma, when all is said and done, and my father loved golf, and had many friends who would invite him to play golf, and sort of the invitations to play just dried up. And my mother, at a certain point, asked one of my father's friends, like, are you still playing golf? Why isn't Jerry playing golf with you. And the friend explained that they were indeed still playing golf, but because my father was having so much difficulty, they stopped inviting him. And the particular difficulty that the friend described was my father aimed the golf club in the wrong direction. And I tell that story, because it would have been painful no matter what for my mother to have known, but sort of the pulling away of the friends from my father, really, not only isolated my father, but my mother. And I think in those days, there was a sense that maybe this disease was contagious or, or it was just so painful to look at, that they just couldn't. And I thought it was very important to tell that story. And then Bruce comments on it, interestingly, to say that this was a moment of potential empathy. And the ball, literally, the golf ball was dropped. And the friends had an opportunity and took a pass,

Steve: 18:32  

I might comment on that. I think that's one of the hardest things to go through as a caregiver is the retreat from friends and neighbors, people who you expected to step up, who loved whenever you're, in your case, your dad, in my case, my wife, and would have done anything to help them and they went once and that was it, you know, they couldn't handle it. So whether it's, you know, hitting golf balls the wrong way, or an inability to handle a conversation or whatever it is, they they aren't taught and then magically, you end up having someone who's like, all in, you know, it's like, I'll do whatever it takes, I'll be there for you all the time. And I was, I was blessed to have that. 

Cindy: 19:13  

And you never know who that person will be glad you had someone like that.

Virginia: 19:18  

Everyone handles grief and, you know, regrets and grieving differently. And it's not necessarily I don't think how the books say you're going to experience it. So at this point in our podcast, we want to talk about the effects on you back then and and how you are now. So let's start with back then what what did you do or think to try to endure the pain of slowly losing your father?

Cindy: 19:52  

I had a variety of strategies. Not sure I would recommend to any of them. Maybe Some were better than others. I think my primary strategy was, compartmentalize. And I was happy graduate student by day, and devastated daughter by night. And so when my mind was occupied with all of the literature that I loved thinking about characters and narratives and authors, I was so happy. And then when I went to bed, and it was just the silence and my mind, I fell apart. And that's how I got through. And what else did I do? I tried to see my parents as frequently as I could. I wrote my father letters, knowing that, in all likelihood, he would not be able to read them. But I needed to communicate with him somehow. I'm very glad I did that.

Virginia: 21:18  

Do you think your mom read any of those letters to him?

Cindy: 21:23  

That's a really good question. I don't, I don't know. I know, when I was helping my mom clean up the house at a certain point, I found the letters in a Ziploc bag. Each one, my dad was really meticulous, whenever he opened letters, it was with a letter opener. So each one meticulously opened, and folded. And it was like, it was like finding treasure. And I include some of that in the book. Because it meant so much to me that he kept them. And it never occurred to me to take time off from graduate school. That seems really nuts right now. I did think about switching graduate schools to get closer to Florida, and I thought maybe Johns Hopkins would be a good place to go. And I recall having a conversation with my advisor about that. And he said to me, you can't do both. He said, either go to Florida and do what you need to do there. Or stay and do your degree. Don't think you can do both. And he was right. And so I kind of split in half. And there was hell to pay psychically for having done that. I was very productive. I did very well at Berkeley. And I think I managed to sort of take all of that energy and angst and emotion that I was feeling about what was happening to my dad and just threw myself into my work. My work was my safe place.

Virginia: 23:38

Don't you really think though, that that's what he would have wanted you to do? 

Steve: 23:43 

So Cindy, no, no anger while this was going on at him or you, and the fact that I can't do anything more you just compartmentalized and went ahead?

Cindy: 23:58  

I think there was anger at my mom. And that's not something I talk about in the book. It's not something I wanted on the page. I don't think I understood the caregiving part of it, like I do now. And I've talked to Virginia about that. I think sort of the withholding of the diagnosis was hard for me. I knew that it was out of love. Totally out of love. But that was tricky. And then there was also direction from my mom who was the caregiver, not to talk to my father about what was happening. And I talked about this in the book a little bit that there were certain conversations that I wish I had had with my dad. But because as you say, Virginia, I was honoring my mom. I did not. So I'm not, I think at the time, when I was in my 20s, there was anger, but that's gone. That's gone. And I got to take care of my mom, actually, the last several years of her life, she came to California from Florida. And that was wonderful. But at the time, there was anger.

Virginia: 25:41  

Of course, we all have all those emotions. Yeah, come over all of us when we're dealing with something like this, right? That leads me into our, toward the end of our podcast, I want to make sure that you tell us how you are doing now.

Cindy: 25:58  

Insofar as the grief process goes, having written the book and having the opportunity to talk about the process. I am also participating in a caregiver group. 

Virginia 26:20

There you go

Cindy: 26:21

 which I never imagined doing. As you said in the introduction, Virginia, I was not my father's caregiver, which was part of the guilt. But being in a caregiver group, after having written the book after having studied some neurology. I'm finally getting to hear, I think, more my mother's perspective on the experience, and that's just been amazing. And being able to help these other kind of mother figures, these other caregivers. Feel, it's such a gift. So that's wonderful. That said, and you could probably hear my voice trembling on and off in the course of this interview. You hopefully never forget these experiences. And even retrospectively, talking about them can be very difficult. So it's it's never over. It's never over. But I think being able to share the experience and knowing that it's resonating and potentially helping people. I do believe that's what my father would have wanted? And that feels good.

Virginia: 27:55  

Absolutely. Steve, I know, you must have something to add in here. I was just going to ask you.

Steve: 28:01  

And I think you, you touched on something that's I mean, the book was probably written, I don't know if it was written for commercial purposes or more for therapeutic purposes. But in our caregiver groups and other groups that I participated in, people have written their story, their story, or their marriage story, or their child story, or whatever it was related to their parents, because, and uniformly, they all come back with, oh, it was so cathartic. It was so beneficial for me to put that out. So I don't know if you would recommend that to anybody. It's not necessarily to write a book to get published, but it's write your story.

Cindy: 28:46

I think writing it can be very helpful. Getting your emotions on the page. I think writing what's happening can also help in terms of preventing denial. If you've, if you write it down on some level, you're acknowledging the reality of it, which is painful in the moment, but I think, ultimately really important. And I wrote this book, I would just add with Bruce, a neurologist, because I didn't want to, quote unquote, just tell my story. I wanted to give the reader scientific expertise, which I wasn't able to do so I needed to Find a scientist who could write to a general audience about the incredibly complex neurology, at work, when someone doesn't know a word, or someone is aiming the golf club in the wrong direction, like what's happening in the brain. And so I wanted to help people with the grief process, and that's the story I could tell. And I thought the story Bruce could tell was giving caregivers and people with mild cognitive impairment, information about what was happening.

Virginia: 30:32  

And he he did a beautiful job of doing that. And you did a wonderful job with your part. And I I have to say that I think it's wonderful that you didn't let the passage of time dissuade you from writing your father's story and yours. 

Cindy: 30:50

Thank you. 

Virginia: 30:51

And while you were clarifying the process for yourself, you are, you're now going to help a lot of people out there going through the same challenges.

Cindy: 30:59

Thank you. So I really hope so.

Virginia: 31:01 

Thank you so much for joining us today. And we've got to wrap this up. But to our listeners, we will put information regarding Cindy's book called Finding the right words in the show notes for our podcast. And we thank you for listening today and we hope that you enjoyed our interview with Cindy Weinstein.

Cindy: 31:21

Thank you so much for the opportunity. 

Virginia: 31:24

You bet. Please join us again soon on spotlight on care.

Outro: 31:28  

Spotlight on Care is produced by the University of California Irvine, Institute for 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