What is it Like to be a Caregiver for a Person Living with Dementia?

In our last episode we talked about caregivers for individuals living with dementia.  In this second part of our series on caregivers we’ll get to know someone with lived experience.  We’re joined in this episode by Peggy Arden whose husband has Alzheimer’s disease. Peggy has graciously agreed to offer us a behind the scenes look at the ups and downs of being a dementia caregiver.

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Episode Transcript

Peggy Arden:

It really has opened my eyes that I always felt like I couldn't call on anybody, and I don't have any really close friends. I've become very, very close to my caretaker, and I said something to her that I felt badly that my sister has cancer that she's fighting, that I wasn't going to be able to go out there, that I wish that his son or daughter would come out and stay, and my caretaker said, "Well, don't be silly. I'll stay with him for three days, whatever, just so you can go out and see her," and I would not have taken that step to ask her.

Then it turns out that all these other people who, the wives of people who have worked with him for so long and have admired him, have been there for help for me. So we also started a Zoom. After the pandemic, we started a Zoom thing with just the wives, and it turns out that there were three people that were in situations where they really just needed to talk to somebody. This has been very, very helpful and it allowed me to think, "I could call them up and ask them to do something," and that I had people out there, that I just had to get over the hump of not wanting to impose.

Matt Davis:

I'm Matt Davis.

Donovan Maust:

And I'm Donovan Maust. You're listening to Minding Memory, a podcast devoted to exploring research on Alzheimer's disease and other related demands.

So, in our last episode, we talked about caregivers for individuals living with dementia in this very special episode, or part two of our series, we'll get to know someone with lived experience as a caregiver. The hope here is to give us a better understanding of what it's like to be in the role of a caregiver, the unique challenges and the various ups and downs that come with the territory. Dr. Amanda Leggett is back with us again. Welcome. Welcome, Amanda.

Amanda Leggett:

Thanks for having me.

Donovan Maust:

So Amanda, do you want to take it away and introduce our guest?

Amanda Leggett:

Sure, I would love to. So hello again, everyone. I am so happy to be introducing you to Peggy Arden, today, who is a caregiver for her husband with Alzheimer's disease. She is such a wise voice in the way that she approaches care and a great advocate for other individuals providing care. So I am just really grateful to her for joining us, and can't wait to hear what all she has to share with you today. I was wondering first, Peggy, if you could start by telling Matt and Donovan a little bit about yourself, including when and how caregiving began to be a part of your life.

Peggy Arden:

Well, first of all, I want to preface it by thanking you very much for having me here, but also to let you know that I'm 80 years old and I'm caring for my 94-year-old-husband, who is a former professor at University of Michigan, and Princeton University, and University of Rochester. He was a Dean. He is very, very, very brilliant. So I think that that provides a little bit more of a challenge than some things, because he's more curious. He's very accomplished, and probably the biggest thing is the humiliation of letting someone know that he has Alzheimer's or that he needs a walker or needs a wheelchair. When we walked to get the mail the other day, he said, "I don't want anyone thinking that I'm, disabled."

So, there's this term that is just a real stigma, I think more so to people that are in his generation, then possibly my generation, because we're accepting it as something that's pretty widespread. I first noticed that we might have a problem when we were driving down to visit his brother in Florida, and I noticed that there was just seemingly a lot of erratic driving that I had not noticed before. And, at that point, I had to, I was just very upset and I said, "Okay, let me out. I'm just going to go rent a car and I'll meet you there." And at that point, he realized that I was serious, that I needed to take over the wheel and drive.

Before that we had had a couple... only two incidents. One was we were hiking in China and he had to be carried off the mountain because he couldn't stand up straight, kind of just a really bizarre situation. And the same thing happened about two years later in Sedona, Arizona, and we had to have him carried off and, at that time, I was at my brother-in-law's home... my sister's and brother-in-law's home. And they said, we've got to get him into the doctor to get a CAT scan. So we have a CAT scan from pretty early in the timeframe, and we basically... He did not really acknowledge what had happened when we told the doctors at U of M what had happened. He said, "Well, that, wasn't what happened at all. I walk perfectly well." It was just this very hostile, defensive reaction. From then on, it's been to a point where, at this point now, he really can't understand most television programs and doesn't understand. He'll ask me things like, "Was Obama President?" or, "Who is he married to?"

He asked me, the other day, when I first met his father. Well, his father died in 1988. We weren't married until 2004. So there's a lot of disjointed from reality questions that we're getting now. But he still needs to have these conversations, needs to have discussion, and one of the things that was really interesting was that he needed to be able to read, and I did not realize, for almost a year, that he was actually having trouble reading. So what I did was get the books that he wanted to read, or I thought he'd be interested in reading. I got them on Kindle.

Since we did that, which was early in the pandemic, probably maybe May, of 2020, he has read all kinds of books, and he's gone all the way through. Has a little bit of problem, every once in a while. He was asking me what this word... This has started more frequently. He'll ask what a word means, and I've shown him how to just highlight that word and the meaning comes up, but he can't remember that. But that's still okay, because I've shown my caretakers that, that's what they can do.

One of our caretakers... I have three caretakers. One is a graduate of University of Michigan, and a degree in history and he's been very good because he discusses current events, historical events. He was in the military, as was Bruce. Bruce had enlisted in World War II, and is very proud of being in the Navy. So they have a good relationship. That caretaker comes twice a week for four to five hours on Tuesdays and Thursdays. We have another caretaker who comes to help me out a little bit as well as to stay with him when I need to do major grocery shopping, or whatever, and she is very good at engaging him in human relationship discussions, and just asking him questions, or whatever. She comes two days a week for, again, four to five hours.

Then, just recently, I was in the hospital with what I thought was a heart attack, and my daughter and son said, "Mom, we've got to get another person in here." So we hired an agency, actually hired a person from the agency;, that is very good. [Mohammed 00:08:55] is amazing because he has massage skills, and he was hired to come in and bathe Bruce, but that's something that there's no way I could sell him on that. But he does shave him, and he does shave him, and he does massage on his feet, and he does exercises with him, very good exercises to try to build the core balance.

He is now, basically, wearing Depends or products all the time, 24/7. That has made a big difference in how we've interacted because he's still very embarrassed, and I'll knock on the door and say, "May I help?" And he'll always say no. He'll say, "I don't need that. I can do that myself," and there's no way he can maintain the quality level of cleanliness that I think he should have. Also, I have to shower him, and we were, kind of, on a every-other-day shower routine, which has seemed to work, even though I would like to do it every day. It's a very long process to get him dressed. It basically consumes all morning to get him up, showered, and dressed. It's very time-intensive, very, very time-intensive.

Matt Davis:

Can I just step back a minute for you to think about the state process of him getting diagnosed. It's interesting because I think some people, say, have better insight into the fact that maybe something is changing. They're maybe not thinking as clearly, or their memory has changed, and other people don't, and they don't acknowledge that their cognitive abilities are changing. Can you talk about that for him?

Peggy Arden:

He basically has Anosognosia, and that's A-N-A-S-O-G-N-O-S-I-A, and that basically means that they don't know that they have anything wrong with them, anything at all wrong with them, and they don't acknowledge that all the tests that have been done and everything that the doctors have told them, they're not even really registering, and-

Matt Davis:

So that would make your job a lot harder.

Peggy Arden:

A lot harder. Right, but caretaker groups that I'm involved in, I'm finding that there are a lot of people that are dealing with that same situation. I happen to have a daughter that mentioned that to me, and then I started reading about it and I thought, "Bingo. That's it." It's hard to find information about it, and you keep saying, "Well how can you not know that you're having problems, oar when you're eating, and you start eating with your fork and putting the food on with your finger, using your fingers as a pusher?", which just started relatively recently. Just things that are so far away from a professional person's demeanor and understanding, and then you just say to yourself, "I guess that's something I'm just going to accept."

He is still sleeping well. He was sleeping probably about 15, 16 hours a day. Now he's basically down to... He's sleeping more or less a normal schedule. He will take a nap in the afternoons, and sometimes, just to save myself and give myself a little more time, I will let him sleep a little bit longer, but he is... The doctor had recommended that we try to keep a routine, getting him up at a certain time. We were ending up by having breakfast anywhere from 1:00 to 4:30 in the afternoon. So now we've, pretty much, got it, it's always before 1:00, and sometimes it's as early as 10:00. Dinner is usually... What we're doing is not having lunch. We're just doing breakfast, a late breakfast usually, and an early dinner, which seems to be working quite well.

Amanda Leggett:

I was going to say, Peggy, you show great adaptability in terms of your schedule and, like you mentioned, the little finger bowl and towel at the table, and even increasing the text size of the Kindle, are all ways that you've, kind of, helped to adapt to his current abilities, and I think it's really neat to see.

Peggy Arden:

Well, I've tried using as much creativity as possible. I even bought some bibs that were supposed to be pretty good, but I've got to invent my own and sew something that's similar but that is a little bit more palatable for him to use. What we were doing when we used a bib, we were both using it, and we've even been in situations where we had company over, and we had ribs, and everybody got a bib. So it made it not quite as, "Oh, wow. Look, he's acting like a child." But the relationship between working with him as a two-year-old and a 94-year-old, a lot of similarities.

Amanda Leggett:

Mm-hmm (affirmative). Yeah, so I was going to ask... You know, you shared some of the tasks that you help with, like bathing or dressing, and the like. What does, kind of, a typical day look like for you in your quote unquote, kind of, "job as a caregiver"? What are the typical things that you're helping with on a average day?

Peggy Arden:

Okay, first of all, I'm helping with all bathroom things and we found a number of products that seem to work, and I have found some suppliers that have some things like a company called, Because, which I found on Facebook, actually, will actually deliver the black men's briefs, every month, to you. We've also tried looking at other kinds of suppliers that will do things like the guys that were doing the exercise. Clean-up is usually all morning, basically. The clean-up and showering. I do have a shower with a bench in it. What I usually do is take my shoes and socks off, and I stand in there. We have grab bars on the back wall, vertical grab bars on either side of the doorway as you get in, and then there's a bench in there.

Amanda Leggett:

You've made a lot of environmental modifications- 

Peggy Arden:

Right-

Amanda Leggett:

... in a facilitative [crosstalk 00:16:13]

Peggy Arden:

That's a real good way to say it, environmental modifications [crosstalk 00:16:15].

Amanda Leggett:

So it sound like a lot of the day is, kind of, filled with some of these more personal care tasks and then, like you described earlier, helping him facilitate his reading and having conversations. Anything else you would share about [crosstalk 00:16:30].

Peggy Arden:

I do try to make sure that we eat very, very well and well-balanced meals. And he, again, as I said, is still eating a very good healthy diet.

Amanda Leggett:

A lot of different tasks that you have on your shoulders, Peggy, what would you say is the most difficult parts for you about caring for your husband?

Peggy Arden:

I think probably the anger that he feels, the confrontational thing when he says, "No, I don't need any help." Then, I say, "But remember. I'm your spa person. This is your spa. I'm here to take care of you." And, all of sudden, he'll lower the level of anxiety and confrontation, which helps a lot, that he at least will do that, because there are some people that I know just keep on being angry, and that's the way he was, first.

He is on two Celexa, two 5 milligrams of Celexa, every morning, and that has made a big difference. Then, I have basically put him on to try to stop him from sleeping so much... Coffee was not working. Coffee was causing major bowel problems. So I've given him one Excedrin, which has caffeine, aspirin, and Tylenol in it, which is basically just one in the morning, when he gets up. So that gives him this little coffee boost, and that seems to work very, very well.

And the pandemic has actually been very, very, very good because we moved the May before the pandemic started, and he did not know we were moving. I had everything set up in this new condo, new to him, condo, and, from his birthday on, we just lived over here and then everybody got shut down during the pandemic, in the beginning of March. So it was, he could no longer walk in the downtown area, at all, that he was here in [Canton 00:18:53], and he would just have to accept it.

Amanda Leggett:

Yeah, in a sense, the pandemic, kind of, helped facilitate-

Peggy Arden:

Oh, my gosh.

Amanda Leggett:

... that transition [crosstalk 00:19:01]-

Peggy Arden:

Oh, my gosh. It was the best thing that could've happened, for me, personally.

Amanda Leggett:

Yeah. Okay. I was going to say, so you talked about the three aides or helpers that come into your home. What else do you do, Peggy, when you need a break from caregiving?

Peggy Arden:

Well, I do enjoy making Cosco runs or Sam's Club runs, and so it's usually grocery shopping, but not that's, kind of, down to like once every two weeks, or whatever. When I moved here, I knew what was going to be happening. So one of the things I bought right away was a big freezer and an extra refrigerator so I could basically stock up. Little did I know how much I'd have to stock up, but that's been very helpful, and I do enjoy cooking, and he will sit there, and he'll read or watch something while I am cooking. He does enjoy that, watching me cook. And I do involve him in making cookies. He was using my tortilla press to press down these oatmeal cookies that I make, and he liked that a lot, and it was his job to press them down, and I'd hand him the papers and he's get them nice and flat. He felt that feeling of accomplishment.

Amanda Leggett:

Yeah, made him part of the team, helping you.

Peggy Arden:

He also has come outside. We'll set up chair up. I do enjoy gardening, and I've done some extensive gardens around my condo. He does come out. In fact, last year, we were... Our condo backs up to a creek, and the creek had overgrown with invasive species. So I took the little chainsaw that I have and went out there and just chopped all this invasive species down. So we had him cutting up branches with a clippers, and he was able to do that, and he actually enjoyed it.

One of the people on one of the caretaker meetings I was on, said that she gives her husband the blower to blow leaves and things. So I had suggested that to one of my caretakers, and she said, "I had him do that." She said, "I was scared to death that he was going to fall, but he was sitting in the chair, for the most part, using the blower to blow the stuff off the deck." So, I'm getting clues and ideas from some of these other people that are in caregiver meetings.

I'm in basically three caregiver groups that are run by Mercy Hospital and Alzheimer's Association. And being in those kind of groups, where you meet so many people that are just on the first path, the first steps of learning what it's all about, is so important to be able to talk to them and say to them, "You know, the best thing in the world is if you could just get somebody," which is what I did. I got somebody to come in way before Bruce needed it, just to come in and it was presumably to help me, after I had back surgery. And she came in and his daughter actually interviewed the people with me, and that worked out really well because it just became, "Today's Suzanne's date." Monday and Friday were Suzanne's day, or on a Wednesday.

But what really helped was when I did have to go to the hospital for the heart attack, I had people there that could and stay overnight. Now, at this point, if I had waited 'til this point, that would've been the hardest sell of my life to try and get him convinced to allow it.

Amanda Leggett:

I was going to say, Peggy, you're very fortunate that you have a daughter who has expertise in this area. I'm wondering back to when your husband was originally diagnosed, did you receive any help or education from his medical providers regarding your caregiving role?

Peggy Arden:

No, but, at that point in time, but when we had the beginning diagnosis, Dr. [Billy 00:23:32] was our doctor, and there were a number of books to read, and I had basically had a lot of people giving me things to read and understand that this was a whole new trail that I was going to be on, and I'd stay up until three and four five, in the morning, reading some of this. So I really knew what it was, and the idea that I made rather complete lists of what was happening with him, at that individual stage, I think has been very, very good for the doctors to be able to understand. We also did get palliative care in, just so that when we need it, we're ready, and he's familiar with the person.

Amanda Leggett:

My next question for you, Peggy, is how would you say being a caregiver has affected your relationships with other people in your life, whether it be your family, your friends?

Peggy Arden:

Well, it really has opened my eyes that I always felt like I couldn't call on anybody, and that I don't have any really close friends. I've become very, very close to my caretaker, and I said something to her that I felt badly that my sister has cancer that she's fighting, that I wasn't going to be able to go out there, that I wished that his son or daughter would come out and stay, and my caretaker said, "Well don't be silly. I'll stay with him for three days, whatever, just so you can go out and see her." And I would not have taken that step to ask her. Then, it turns out that all these other people who the wives of people who have worked with him for so long, and have admired him, have been there for help for me.

So we also did started a Zoom after the pandemic. We started a Zoom thing with just the wives, and it turns out that there were three people that were in situations where they really just needed to talk to somebody, and this has been very, very helpful, and it allowed me to think, "I could call them up, and ask them to do something," and that I had people out there, that I just had to get over the hump of not wanting to impose on them, and that, that was my problem, not their problem because they were feeling guilty that they hadn't volunteered.

Amanda Leggett:

Yeah, I know, this is really helpful. Thanks for sharing that. It's neat to see the different ways that you can connect, especially now through Zoom and other ways that, otherwise, would be more difficult, in a pandemic context, for example.

So you also hear, in caregiving, a lot, people talking about terms like stress or burden, and thinking about caregiving. But I'm wondering are there things that you experience that you consider to be positive or rewarding, as part of your care role?

Peggy Arden:

It's definitely very, very, very, very stressful. My son made the comment. He said, "We feel as though we haven't been able to see you or talk with you, that you've just disowned our..." their children, my grandchildren, and I felt so badly that I wasn't spending the time to be available for them. I have two twin grandsons with disabilities. So I've been more responsive to them, as opposed to the other people. So I do have regrets that I haven't seen my grandson and granddaughter, from my son, as much as I would like. And it's interesting because my daughter-in-law's father has Alzheimer's, is, kind of, paralleling Bruce's path. He's someone who's always been very fit and very strong and very active physically, now has these horrendous things happening to him.

Amanda Leggett:

Yeah, and I know that you've been able to use all the wisdom that you've gained and things you've learned from your caregiving experience to help others, which has been an incredible thing about you and giving back, like there's part of these groups that you're a part of, and so forth. Is there anything about the care that you provide that you find kind of rewarding, or that you enjoy about the caregiving role?

Peggy Arden:

Well, the fact that... Yes, I'm very grateful for the fact that I'm still capable, that I did have back surgery that put me... The doctor said, "Well, if you don't have this back surgery now..." I kept saying, "Well, I can't do this now. I can't have this surgery because I'm caring for my husband with Alzheimer's." And they said, "But if you don't, you're going to be even further behind, and you'll have more problems." So I'm glad that the doctors just talked turkey to me and said, "You don't have any time to wait," and that was very, very smart because I... And my daughter was, again, pushing us, "Get moved out here, whatever you have to do," and his son and daughter had basically approved the use of friends to move out here and get out of the situation that we were in. And that made a huge difference that I had the luxury of something that I designed because I kept looking for apartments, assisted living, and those just weren't options that he would be able to understand or accept.

Amanda Leggett:

Yeah, it was fortunate you were able to find a space that you had really custom designed and, yeah. So this next question might seem a little strange, Peggy. But sometimes it's good for us to take a step back and think about the labels and the language that we use. How do you feel about the term, caregiver? You like that term, or what do you think about it?

Peggy Arden:

I don't mind it, at all. But I have heard well givers or something that was more, you were doing it out of love, rather than just care.

Amanda Leggett:

Yeah, I know care partner is one that's being used more, too, to reflect this idea of partnering as opposed to giving and receiving.

Peggy Arden:

Well, I think that that's probably better, although what I didn't understand, when someone used that for a research project just recently, was care partner, and I didn't know whether they were referring to me or the other-

Amanda Leggett:

Right.

Peggy Arden:

... and so I had to question it. I told them, "This is what I think I'm using it as," so that they understood my... But, I think that that is... As long as it's expressed actually for all people.

Amanda Leggett:

Clearly, yeah. Thank you. It's interesting to hear you say that, because I thought about that, too. It's like if you use the term care partner, then what do you call the recipient of the care? Yeah.

A final question for me, Peggy, would be, reflecting back on your time caring for your husband, for others who may find themselves entering into this type of role, what would you want to say to them, or is there anything else you think is important for our podcast listeners to know about dementia care?

Peggy Arden:

Well, I think that what we really, kind of, need is one universal directory of all the best books that are available and guides. This is something that you almost need a trail guide for the whole path, because this path has a vast zigzag curve to it, and you suddenly think, "Oh, well this is the worst thing that could happen," and then you think, "Oh my God. It could go in a different... It does go in a different direction, but it may be just for a short while, but that you basically need to have this collated resource log of people and places that have open caretaker groups that people can join into.

Most people would... Until I started on Zoom with my daughter's groups, I really didn't know what Zoom was, and there are still people out there that have no idea what Zoom is, because I happen to be pretty technologically savvy, but I'd never gone this route. And now people know about that. Younger people know about it because their kids have been on Zoom or whatever, but still a lot of the people that are in the age group haven't.

I also think that the University of Michigan has done an incredible job on some of these presentations that have been open to caregivers, and I've taken caregivers to Bruno's Symposiums that he's given at different places, before the pandemic, and that was just a real eye-opening thing. The other thing that was amazing to me was... And I had someone else whose father was the same age as my husband, and they were just starting the path, and I said, "You must go to this Teepa Snow Meeting with me, and there was one offered by one of the senior independent living places, and I think the three of us agreed that it was probably one of the best seminars that we had ever seen, because one of the things she did was like putting her hands up. What they see is actually what you see when you put your hands... What someone with Alzheimer's sees is what you see when you put your hands up like that. There are so many things that are diminished. You may not even know that are diminished.

For example, the eye doctors were saying, "Oh, his vision hasn't changed. It's really good." But she was asking him the question, "How do you think your vision is? Do you think your vision's changed?" And he says, very confidently, "No, I think it's pretty good." Then, I realized, "Hey, wait a minute. We've got some real problems that something he enjoyed so much, he couldn't do any longer," because his eyesight-

Donovan Maust:

So we can wrap up now. Peggy and Amanda, both, thank you both so much for sharing your time and expertise with us. Peggy, in particular, there are, sort of, two things that really stuck out to me, from hearing you speak, and I think in my clinical experience, not that we rate or grade caregivers, but I think that caregivers who maybe do the best are ones who are creative, and I think what you've described about, sort of, modifying and adapting the Kindle, modifying and adapting your meal times and the bed time, really highlight, sort of, creativity or relaxing the rules a little bit, around what kind of day-to-day life looks like, and I think that's really critical skill for caregivers.

Another one I think is you described, a number of times, how you've modified the environment. So, both, the physical environment that you're living in, that you've designed and modified further, but also thinking about the environment that your husband is living in, and so thinking about the social opportunities where you wanted to continue those, but you just slightly tweaked them and modified them. So, instead of maybe a bunch of people coming over, it was just one or two couples coming over, so you could maintain what was really enjoyable to him about the interaction, but you also reduced the potential for it to be, sort of, an overwhelming situation for him. So, thank you so much for sharing with us.

Peggy Arden:

You're very welcome.

Donovan Maust:

I think you clearly are very good at what you do.

Peggy Arden:

Thank you. Well, I do feel like he deserves the best, and I think that my doctors have also said to me that they can't believe the work that I'm doing.

Amanda Leggett:

Yeah, and something I took away, too, that I think you really reflect so well, Peggy, is caregiving is, kind of, similar to academia. We're real lifelong learners. There's always more to learn and understand and ways that we can grow, and you've really reflected that, I think, in your care practice, to, of continually reading and attending workshops and working with other people who are going through similar situations, and all of these are ways that we can gain new skills or grow or-

Peggy Arden:

And sharing it with the people who may not have it now, but, if they see somebody that is doing something a little bit different, that might make them think about it if one of their friends has Alzheimer's, or one of their parents has Alzheimer's.

Matt Davis:

I was just going to say that one of the questions I had, coming into these segments, was, what does successful caregiving look like? And, Peggy, I think you just answered for me, here in your story.

Peggy Arden:

Thank you, very much. You have no idea how rewarding, and the positive feedback that I'm getting from the research programs that I've been involved in recently, how good that feels to me, and it's, kind of, like a nice, a very nice feeling.

Matt Davis:

If you enjoyed our discussion today, please consider subscribing to our podcast. Other episodes can be found on Apple Podcast, Spotify, and Sound Cloud, as well as directly from us at capra.med.umich.edu, where a full transcript of this episode is also available.

On our website, you'll also find links to our seminar series and the data products we've created for dementia research. Music and engineering for this podcast was provided by Dan Langa. More information available at www.danlanga.com.

Minding Memory is part of the Michigan Medicine Podcast Network. Find more shows at uofmhealth.org/podcasts. Support for this podcast comes from the National Institute on Aging at the National Institutes of Health, as well as the Institute for Healthcare Policy and Innovation at the University of Michigan.

The views expressed in this podcast do not necessarily represent the views of the NIH or the University of Michigan. Thanks for joining us, and we'll be back soon.

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