My mother has Alzheimer’s: a caregiver’s story [PODCAST]

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What is caregiver burnout? How can you recognize the symptoms? What are tips for new caregivers? What can caregivers teach clinicians?

R. Lynn Barnett is the author of What Patients Want: Anecdotes and Advice and My Mother has Alzheimer’s and My Dog Has Tapeworms:  A Caregiver’s Tale. She can be reached on Twitter @rlynnbarnett1.

She shares her story and discusses her book, My Mother has Alzheimer’s and My Dog Has Tapeworms:  A Caregiver’s Tale.

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Hosted by Kevin Pho, MD, The Podcast by KevinMD shares the stories of the many who intersect with our health care system but are rarely heard from.

Transcript

Kevin Pho: Hi, and welcome to the show, where we share the stories of the many who intersect with our health care system but are rarely heard from. My name is Kevin Pho, founder and editor of KevinMD. Today on the show we have R. Lynn Barnett. She is a longtime KevinMD contributor, and she’s the author of the book My Mother has Alzheimer’s and My Dog Has Tapeworms: A Caregiver’s Tale. Lynn, welcome to the show.

R. Lynn Barnett: Thank you. I know these podcasts are designed to highlight voices that aren’t often heard, and that’s so important when dealing with Alzheimer’s, so thank you for this opportunity.

Kevin Pho: So we’ll get into your book in a little bit, but first off, can you share your story and your journey to where you are today?

R. Lynn Barnett: I was driving home from work one day, and I thought, “This is what my life has become: My mother has Alzheimer’s, and my dog has tapeworms.” And when it came time to write the book, I put “A Caregiver’s Tale” as the subtitle, because that was my role in it.

I think, really, dealing with Alzheimer’s has helped me deal with COVID-19 in a way, because they were both unexpected events. There’s a new definition of normalcy, and we just have had to adjust as things have gone along. I think sometimes, too, when you’re dealing with horrible things, and Alzheimer’s is a horrible thing, COVID-19 is a horrible thing, I think it’s OK to find the humor in it. I think it’s just a way to cope. So if it’s OK, I’ll share some of the funny things that we dealt with, with my mom.

Kevin Pho: Go right ahead.

R. Lynn Barnett: Once my mom wanted to tell someone that she pounded the pavement looking for a job in New York after college, but what she said was, “I walked the streets of New York, if you know what I mean.” My mom might have been a sweet talker, but she wasn’t a streetwalker.

Another time, my husband and I had ordered an electric cushion for her to go on top of her chair, to ease her up to a standing position, because arthritis made it difficult for her to go up and down. My husband was describing the dimensions to the postal worker who was looking for it, and he said, “I’m not sure how big it is. It’s an electric chair for my mother-in-law.”

The chair was a source of a lot of interesting situations. Once she slipped off this chair, not hurting herself, but we couldn’t get her up, so we called the very helpful paramedics. One of them, as he’s helping her up with her back towards me, said to her, “You’re strong.” And she said, “Yes, I used to play a lot of golf.” He looked at me for confirmation, and I went like this: I nodded my head. And then she said she had even gotten a hole in one once, and he looked at me, and I nodded my head. And then she said she even played golf with Tiger Woods, and he looked at me, and I went like this. So I learned to think on my feet. But since she never saw these gestures, it didn’t hurt her feelings. You know, if she felt she played golf with Tiger Woods, that’s fine.

Another time, when her knees were really bothering her, I was coaching and coaxing her to the bathroom, and I told her it was just 10 more steps. So she walked two steps and then pounded her cane in front of her for the next eight steps, counting all the way, “Three steps, four steps.” She then asked me why she wasn’t where she needed to be. I said, “Because the cane took most of your steps.” And she continued to walk and count, “11 steps, 12 steps,” but it was really just three steps, four steps. And I thought, “That’s how I do sit-ups: one, two, 11, 12.” So once she was safely situated, I put that in my manuscript.

When my husband came home later at night, he saw a similar scenario, with her walking from the hallway to her so-called electric chair. She again walked two steps and then had her cane take the next eight, and then she proceeded to walk again, counting, “11 steps, 12 steps.” And my husband said, “That’s how I do sit-ups: one, two, 11, 12.” He’s always said that we’re made for each other, so I guess that’s one thing we can count on.

Again, I mentioned before, finding a sense of humor when dealing with Alzheimer’s, or really any disease, isn’t insulting to the patient. It’s a coping mechanism to keep you sane. My mom retained her sense of humor, too. She was once sitting at the pickup area at the pharmacy at our local store so I could do some shopping. I kept her in view at all times. There was a young man sitting there waiting to pick up his medicine, and he told me he’d keep an eye on her, and since I could do the same, I was fine with that. Once we were back in the car, I told her it was nice of that man to keep her company in the pharmacy pickup area, and without missing a beat, she said, “It’s a pickup area in more ways than one.” That was her reality, and that was fine with me.

I learned to accept the kindness of strangers. There is a book about Tennessee Williams with that title, The Kindness of Strangers, and I love that concept. I rarely speak to strangers. When some of the people who’d worked at my local grocery store would say, “Hi, how are you?” I’d usually say, “Fine, and how are you?” But there was a day when one of them said, “How are you?” and I gave her a 20-minute sob story about my mom’s condition and the effect it was having on me. And she said, “My mom is showing signs, too.” This happened with several people there. We belong to a not-so-secret society.

I gave the bakery lady an earful, too. One day I quoted the biblical quote, “Man does not live by bread alone,” and I added, “Neither does a woman. Sometimes she needs a doughnut.” She told me if she was in my boat, she’d be having a doughnut every day. As a caregiver, you have to take care of yourself, which that day meant treating myself to a doughnut. I have a page in the book entitled “The Caregiver’s Commandments,” one of which is, “Thou shalt not steal, unless you can steal some time away for yourself.”

As a caregiver, I had to learn to develop some grit, especially when my mom insulted the grits that I made her for breakfast. By her own admission, she wasn’t a good cook. She was an accountant by trade, but she couldn’t even cook the books. Apparently, I inherited her lack of cooking prowess.

I had to develop some grit when dealing with my mother-in-law, too, who had Alzheimer’s. One day we were visiting her at her assisted living facility, and she pointed to me and then told my husband, “Get that heifer out of here.” When we got back in the car, I let him have it. I told him, “How dare she call me a heifer?” For a variety of reasons, I didn’t play tennis anymore, and I was used to playing two to three times a week, and when you stop that, pounds can come on overnight. He said, “No, to her it isn’t a fat woman. It’s the other woman.” I’m thinking, “Gee, thanks.” Sometimes she’d think that my husband was her late husband and that he was having an affair with me. Isn’t that sad, that I’d rather be known as a home wrecker than as a woman with a middle-aged spread?

That label of heifer kept haunting me, though. One night we were watching Jeopardy, and the clue was a cow whose spelling defies the “i before e” rule, and it’s “heifer.” And I’m screaming at the set, “Heifer, heifer, heifer!” I don’t think the contestants knew it, but I knew it. But I’ve been able to put heifer behind me, in more ways than one. Just ask my hips, that one doughnut notwithstanding.

Humor was all around us. One night there was a storm coming, and all of us, my mom, my husband, our dog, and I, were hiding in the bathroom, which was the safest room in the house. My mom associated that room with just one thing. Let’s just say the queen almost had a royal flush and a full house.

This is the last page, and then whatever else you want to ask, I’m happy with it.

Despite all this, I think we need to learn to be forgiving and soothing with ourselves and with the Alzheimer’s patient. James Vlahos, the author of Talk to Me, a book about the role of artificial intelligence, was talking about the different voice options for GPS that were being demonstrated at a consumer electronics show. One was a feminine voice that was almost seductive in a way: “Make a left at the light. Make a right in 400 feet.” And although some people liked that, some didn’t. So another choice of voice was very straightforward: “Make a left at the light. Make a right in 400 feet.” And many people didn’t like the impersonal nature of that. But the third option was more soothing and forgiving: “So you missed the light. It’s OK. Just go up and turn around. It’ll be all right.”

I think caregivers need to use that reassuring voice with ourselves and with the Alzheimer’s patient, even if that voice is laced with some necessary deception when dealing with the latter. Due to my mom’s having auditory hallucinations, I found the one voice she really needed to hear, especially during that time, was mine. One night she was insistent that someone was knocking on her bedroom door, which was adjacent to our laundry room. I tried to convince her otherwise, to no avail. So I lied and told her I’d been cooking with oil, and when I went to do laundry, my fingers were a little slick, so I had accidentally closed the dryer door twice in quick succession. I let her hear this sound, and she said that must have been what she heard. I was a liar, liar, pants and dryer. The knock-knock was in her head, without benefit of a joke.

I learned to think on my feet, but I always try to think with my heart as well, which is the best advice that I’d give to any caregiver. I always try to remember that what you treat isn’t as important as whom you treat and how you treat them. That’s my favorite line from my other book, What Patients Want: Anecdotes and Advice.

Kevin Pho: Well, thank you so much for sharing those stories and wisdom. One thing I do want to focus on is the concept of caregiver burnout. What are some symptoms that they should be on the lookout for?

R. Lynn Barnett: I mean, each person is different. For me, I didn’t really sleep that well at times, because I always had to have an ear out for her. It’s almost like when you have a baby or a toddler: You’re always sort of thinking, “You know, is everything OK?” And it’s the same thing with a person with Alzheimer’s. So I think if your sleep is disrupted, that’s something to look out for.

I did find that sometimes I would get upset over nothing. In the olden days, if I ran out of cheese and crackers, I’d run out to buy some cheese and crackers. And I know there was one day, I was working part-time during this time, I taught part-time, and I came home one of these days, I didn’t have lunch, my husband was able to watch her when I wasn’t home, and we were out of cheese and crackers. And I said, “Look at this, we’re out of cheese and crackers!” You’d think there was an earthquake coming. I was just so upset, which was not part of my normal personality. But I think when you’re dealing with someone who’s sick in your household, and it’s a chronic condition, it just exacerbates everything else. So that’s something else I would sort of watch out for: If you see that you’re overreacting to things, it’s just something to be aware of.

Everybody relieves stress differently. For me, it was exercise. I’d go for a walk. Sometimes I’d walk to a neighbor’s house and, you know, have a cup of coffee with her. Sometimes I would just walk for 20 minutes, and the fresh air, and sometimes the sunshine, not today, but, you know, when it was sunny here some days, that 20-minute walk was all I needed to keep myself in balance.

Kevin Pho: And what are some support services that are available that caregivers can turn to?

R. Lynn Barnett: My support group was my husband, who was wonderful. He not only talked the talk, but he walked the walk in terms of helping me take care of her. So if you have a supportive spouse, or friends, or neighbors. The Alzheimer’s Association, I think, is wonderful. It’s alz.org, I think, and most cities have a local chapter. I didn’t really contact them until the last 11 days or so that my mom was alive, but I think they can be a wonderful resource. Most cities have areas on aging or councils on aging; I think you could talk to them as well. And certainly, if a caregiver thinks they need professional help, they can certainly talk to their doctors, who might refer them to appropriate places. I didn’t do that; I didn’t need that. But if you do, certainly take care of yourself as a caregiver.

Kevin Pho: What were some of the things that you’ve learned over the years of caregiving for your mother with Alzheimer’s?

R. Lynn Barnett: I learned that it was a totally unexpected situation. My mother was bright, articulate, well-spoken, well-read, well-educated, and I thought, “Well, certainly somebody like that isn’t going to get Alzheimer’s.” And Alzheimer’s doesn’t know from educational level, or if you’re a nice person or not a nice person. Alzheimer’s, like any disease, hits when it hits.

I also learned that you can’t override those symptoms, because my mom had paranoia along with Alzheimer’s. I mean, this woman was fearless. She would go for cancer treatments and then go play golf. I mean, nothing threw her. And so for a woman with that sort of strong fortitude to have Alzheimer’s, I thought, “Well, Mom, you can sort of override this.” If you think that coffee thieves were coming through the window, which she did, to steal her coffee, I said, “You can override this, because this is not normal.” You can’t override Alzheimer’s symptoms. You can’t override it if you’re a patient, and you can’t put your head in the sand if you’re a caregiver.

Kevin Pho: We’re talking to R. Lynn Barnett. She wrote the book My Mother has Alzheimer’s and My Dog Has Tapeworms: A Caregiver’s Tale. Lynn, on this podcast we have a lot of clinicians, and especially physicians, who listen to this podcast. Is there any advice that you could give us from a caregiver standpoint?

R. Lynn Barnett: I think sometimes you have to listen to the caregiver as well as to the Alzheimer’s patient, because when the Alzheimer’s patient is afraid, she might give the wrong information to the doctor. So she might say, “You know, we’ve had robberies every day this week,” and in reality we had no robberies. So I know there are HIPAA laws to consider, but, you know, as a doctor, when you’re dealing with somebody with Alzheimer’s, give some consideration to what the caregivers are expressing, too, because chances are their view of reality is real, and sometimes, not always, but sometimes, the Alzheimer’s patient has a skewed view of the world. Again, not always, and not all the time, but sometimes.

Kevin Pho: And what’s your number one tip that you could share with all the other caregivers that are out there?

R. Lynn Barnett: I would say find a sense of humor when you can. And understand that if the Alzheimer’s patient insults you, and my mom never insulted anybody over anything, and once Alzheimer’s hit she would insult me over nothing, understand that if the Alzheimer’s patient insults you, it’s not really them talking; it’s the disease talking. Sometimes, when my mom would say something utterly cruel to me over nothing, my husband would mouth the words, “It’s not really your mother. It’s not really your mother.”

And that’s something I think you need to consider, because I’ve known several people whose mothers were the same. Their daughters were just wonderful until Alzheimer’s hit, and then they’d be insulting and demeaning and degrading, and some people take that with them for years and years and years. And I think you have to know from the outset it’s the disease that’s making those comments, not the Alzheimer’s patient themselves.

Kevin Pho: And my final question: Do you have a take-home message that you want to share with the KevinMD audience?

R. Lynn Barnett: Well, whatever you’re dealing with, if it’s the pandemic, well, everyone’s dealing with the pandemic, but whatever else you’re dealing with, just try to put one step in front of the other. You know, I don’t think we can project into the future what’s going to happen in a year, or two years, or three years, or five years. I think you need to just, you know, take care of yourself, put one foot in front of the other, eat properly, take time for yourself. I know that last one, everybody says, “Oh, as a caregiver, take time for yourself.” And I know sometimes I would plan for an hour, to maybe walk for half an hour and watch TV for half an hour, and I know sometimes that was cut to 10 minutes. That’s OK. If you can take 10 minutes for yourself here and there, you know, that’s great.

Kevin Pho: Well, thank you so much for sharing your time, insight, and wisdom. Thanks again for being on the show.

R. Lynn Barnett: Thank you very much.

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