Tag Archives: lewy body dementia

Stuffed Cats and Real Cats in Dementialand

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I once got in a tense argument about whether a stuffed cat was a real cat. For the record, it was a stuffed cat but really it was a real cat.

About ten years ago, I was visiting with a hospice patient on a weekly basis. Linda-not her real name-had vascular dementia (as well as multiple other health conditions) and lived at an assisted living. She was reserved when I first started stopping by, and I had trouble connecting with her.

One day, I notice a stuffed cat sitting on her bed. She sees me looking at it and asks if I like cats. I tell her that I do. She smiles.

“Well,” she says. “You’ll love my Tiger. He is quite a cat.”

I’m not sure if she thinks Tiger was a real cat or not, so I walk over to pet him.

“Be careful,” she warns. “Tiger still has his claws.”

Yep. Linda thinks Tiger is a real cat. I shift gears and start interacting with Tiger as if he is a real cat. In other words, I step into her reality. Linda perks up some, and suddenly we have a connection. I figure out that Tiger is the key to engaging her.

Every time I stop by, I ask about Tiger right after I come in. He’s usually on her bed. Sometimes I pick him up and put him on the windowsill so he can watch the birds. A few times we find a nice sun puddle on the floor for him. One day she mentions that Tiger looks chunkier and accuses me of sneaking him tuna. I confess, and she smiles. I even buy Tiger a toy. Yes, I spend $5 on a toy for a stuffed cat. And Linda is beside herself with excitement, and I’ve forgotten that Tiger isn’t a real, living, breathing feline.

I come by one summer day while her son is visiting. When I ask Linda about Tiger, he rolls his eyes.

He tells me, “I’ve told her time and time again that Tiger has been dead for five years. He got hit by a car on the highway.” Linda looks at him, and then at me. I’m really not sure what to say.

“Actually, Tiger’s okay. He’s right here,” I say tentatively. The son takes a long look at me as I pet Tiger. I’m pretty sure he’s wondering if I’m the biggest idiot he’s ever met.

“You are petting a stuffed cat,” he says. “That’s not a live cat. It’s stuffed.” Let’s just say Linda’s son and I are not on the same page here, and I’m not about to let him break his mother’s heart.

“No, Tiger is a real. Alive and well,” I say. This is awkward. The son is not going to relent, and neither am I. I have now decided I am not going to admit to the son that the cat is stuffed. And once I pick a battle, I’m all in. He glares at me.

“Do you really not know this cat is stuffed? We bought him at Walmart,” he responds. “This is a stuffed cat.” At this point I should take this guy out in the hallway and explain why I am set on insisting Tiger is a real cat, but I don’t think of that at the time.

“Well, Linda knows that Tiger is real, so Tiger is real,” I say. At this point, I have Tiger cradled in my arms. I’m squeezing him tighter and tighter as I get more and more frustrated. If Tiger were alive, I might have suffocated him.

The son stares me down. It’s intense. Linda looks at me, and then at her son. He sighs and walks into the other room. I consider it a victory.

Candor in Dementialand (aka Notes on Whether My Hair is Scroungy like an Alley Cat)

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I sometimes struggle with apathy when making decisions about the big things in life–like my hair. It used to be closer to chin length and now it’s shoulder length.

I’ve asked a few friends if they like it better shorter or longer and no one gives me a straight answer. They say things like, “Oh, it looks good both ways.” They are being nice…I get that. But sometimes I want honesty.

Fortunately, I work with people who have dementia. I was at a Memory Trunks program last week when a gentleman with vascular dementia asked me, “Is your hair longer these days?”

“Yeah,” I responded. “I don’t know if I should be growing it out or keeping it shorter.” He interrupts.

“Cut it. Cut it. Cut it,” he says. “It looks scroungy and there’s no point.” An honest opinion. He looks me right in the eye. For effect, he adds, “SCROUNGY. And pointless.”

I can tell this makes the staff uncomfortable. An employee steps in and says, “You have such pretty hair. It looks great longer or shorter.” But they don’t need to worry. I enjoy the honesty.

I later told my friend Holly that someone with dementia said my hair was scroungy. She told me that I am the least scroungy-looking person she knows. When I told another friend, Jen, she said, “Scroungy? Like an alley cat?” Yeah, maybe.

I’ve been told that I’ve put on weight (truth….). I’ve been asked why I was wearing combat boots (In fact, they were $150 boots I had saved to splurge on). It’s been suggested that I wear lipstick–because men like women who wear lipstick. I’ve been told my voice is annoying.

And I should point out that none of these comments from people with dementia were mean-spirited. They were simply honest observations.

I have to admit that in life there are times that we shouldn’t be completely honest. Sometimes honestly is hurtful. But I think a little honestly is refreshing sometimes. And sometimes I have to credit people with dementia for making sure I don’t take myself too seriously.

A few months back, I gave a presentation on dementia to a small group of professional woman in the morning. I had been in a rush and grabbed piece of toast with peanut butter to eat in the car on the way there. I gave the presentation and thought it went pretty well. Next I went to do some programming for people with dementia at an assisted living. I sat down in a chair and greeted them.

“Good morning,” I said. “My name is Elaine.”

“Elaine,” said a tiny woman sitting several feet to my left in a wheelchair. “You have peanut butter on your breast.”

I looked down, and sure enough there was a huge glob of peanut butter on my shirt. Keep in mind that I had already spoken to a group of 20 women that morning. I am positive that at least ten of those women had to have noticed the giant mass on peanut butter stuck to my shirt. No one mentioned it. I’m assuming they thought it would be awkward and didn’t want to embarrass me, but someone pointed it out within three minutes of my arrival at an assisted living.

They don’t care that I have a PhD. My credentials mean nothing to them, and that’s as it should be. To them, I’m not Dr. Eshbaugh. I’m just a woman with scroungy hair and peanut butter on her shirt. And there’s something about this that I really like.

The day after I was told I have scroungy hair, I made a hair appointment. I didn’t get it all cut off, but I did get it texturized and have some layers cut around my face. I’m hoping I look less like an alley cat.

Missed Potential in Dementialand

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We spend too much time thinking about what people can’t do rather than focusing on what they can do. And I am no exception. Sometimes I forget to look for the abilities and strengths of people with dementia. How blind can I be?

Speaking of abilities…My friend Jen Eby is amazingly talented. She made me a beautiful quilt for Christmas. It matches the colors we just painted the living and dining room. I am like Linus from the Peanuts gang with this quilt. I carry it from the couch, to the recliner, to bed…If it were acceptable, I would take it to work. And, considering Iowa’s recent weather, I may consider this even if it’s not acceptable.

I was texting with Jen about how much I love this quilt and how I wish I had a hobby like quilting that I could do at night to unwind. We were talking about how I could learn crocheting. (If you know me, you may be laughing at this thought. I’m not offended.) Jen said there were plenty of online resources, including YouTube tutorials, for people who want to learn to crochet. She said it’s not that hard to teach yourself.

Then she reminded me that I was a gerontologist and asked if I knew any older ladies who might like to teach me.

Wow. I was disappointed in myself that it was so obvious and yet I hadn’t thought of it. I walk in and out of nursing homes, memory care units, and adult day services a few times a week. I see many women knitting or crocheting. Some of them have dementia. They may struggle to tell me what season it is or what they had for breakfast, but they continue making blankets, hats, gloves, you name it….But when thinking about how I could learn to crochet, it never occurred to me to use them as a resource.

Why hadn’t it occurred to me? I am always promoting positive views of dementia (or at least trying to). Yet I hadn’t thought about asking one of my friends with dementia to teach me to crochet until Jen suggested it.

As dementia progresses, affected persons may struggle to learn new things because of compromised short-term memory. But sometimes the ability to teach remains long after the ability to learn heads south.

Just like the rest of us, individuals with dementia are unique. As the saying goes, “If you’ve seen one person with dementia, you’ve seen one person with dementia.” And their skills and capabilities are unique.

We talk a lot about what people with dementia can’t do. We discuss their challenges. We know it’s a struggle.

And, yet, they sometimes amaze me.

I once talked to a woman who was in her 50’s and working on her master’s degree when she was diagnosed with younger-onset Alzheimer’s. She was able to finish up her degree. She got it done faster because she knew it might get harder if she procrastinated and her dementia progressed.

I am continually impressed with those who have dementia but remain involved in advocacy work. They lobby for more money to be put toward research, work to reduce stigma, and talk about their experiences to help the rest of us “get it.” I know a lot of people in the earlier stages of dementia who participate in significant amounts of volunteer work in a variety of settings. Of course, some are in the workplace. Sure, they may have limitations, but really don’t we all have our limitations?

I like to think that every person I come in contact with knows something I don’t know. Everyone has something to teach me–whether or they are aware they are teaching me or not. Dementia doesn’t change this. In fact, over the past few years people with dementia have been some of my best teachers. They’ve taught me historical lessons (about things like flagpole sitting, D-Day, and why we use tinsel on Christmas trees) and life lessons (e.g., the stuff that really matters in life).

And to think it never occurred to me that someone with dementia could teach me to crochet.

P.S. I still haven’t learned to crochet. Not that I don’t have anyone to teach me. Just that I decided it seems kinda boring and tedious. As I said, we all have our strengths. I’ve come to the realization that crocheting might not be one of mine.

Pop Quizzes in Dementialand

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I’ve just done a program and am leaving a memory care community. I’m just about the put in the “code” to exit the building (which I always mess up) when a woman gets my attention.

“Hey!” she yells. “I’m a grandma!” She’s sitting on a couch with a pink blanket over her lap, and I decide to walk over and chat a few minutes. I’m not in a hurry to get back to campus anyway.

“So you’re a grandma?” I ask.

“Yep,” she says proudly. “My granddaughter was born just a couple of days ago.”

I have no idea whether or not this is true. Her granddaughter could be my age, but it doesn’t matter.

“That’s great. What’s her name?” I ask.

The woman looks at me. Long pause. Then her eyes get sad. Dang. That’s a mistake on my part.

A minute ago this woman was excited to tell me about her granddaughter. Now she’s embarrassed and sad because she doesn’t know her granddaughter’s name. Way to go, Elaine.

Instead of asking her to recall specific info about her granddaughter, I should have said, “Tell me more about your granddaughter.” She might have told me that she was 8 pounds when she was born, that she had blond hair, that she cries a lot. But she would be focusing on what she remembered rather than what she didn’t remember.

I talked to someone recently who had visited her grandpa who had Alzheimer’s at a nursing home. I asked how the visit went.

“Great!” she said. “He remembered what year it was, my name, where he was, and what he had for breakfast.”

All I could think was that it sounded like Grandpa had taken a test. (And, according to his granddaughter, had passed.) But most of us don’t enjoy tests.

But does recalling what year it is make it a “good day” for Grandpa? No, I don’t think so. But we like it when he remembers what year it is because it reaffirms that he’s still Grandpa.

Sometimes we say things like, “You know who I am, right, Grandpa?” This tells Grandpa that he should know who we are. If he doesn’t, he’s given the message that he’s stupid or doing something wrong.

How would you like it if someone walked up to you and made you do an algebra problem? What if they kept saying, “You know how to do this algebra problem, right? I know you do.” What if they stared at you expectantly when you were silent and your mind went completely blank?

But too often we like to make people with dementia play guessing games, which can be frustrated and tiring for them. A few years ago, a women with Alzheimer’s was sitting in her wheelchair at a nursing home. I watched as a younger man came up behind her, put his hands over her eyes, and said, “Guess who?”

I laughed out loud when she responded, “I have Alzheimer’s. My whole life is a ‘guess who’ game. Just tell me who you are, asshole.”

She had a point.

How Michelle Remold Helped Me Understand Reality in Dementialand

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I’m a college professor, and I have favorite students.

Maybe you think this is a horrible thing to say, but it’s unavoidable. I connect with some students more than others. And there are certain students for which I would go to the end of the earth.

On the top of that list is Michelle Remold, who graduated a couple years ago. And maybe I haven’t literally gone to the end of the earth for her, but I did drive to Minnesota on my own dollar to do a community education at the senior center where she currently works. Of course, she did buy me dinner and a margarita after the presentation.

Michelle created a program called Memory Trunks for our Gerontology program. I still do the program that she started. She actually made me a handbook so I could do it after she graduated. This handbook has been sitting on my desk for three years. In all honestly, I haven’t opened it in two years, but I can’t put it in a drawer because I think it’s so awesome she made it for me.

Michelle came to my office after doing Memory Trunks one day and told me a story that has stuck with me. She had been at a nursing home and was visiting with an activity director who said she “didn’t know what to do with” residents with dementia.

First, Michelle was bothered that an activity director had no idea how to work with individuals with dementia, and she should have been. Second, Michelle had an issue with a statement the activity director made about how the residents with dementia had such “active imaginations.”

Something clicked for me. Michelle was right on. We need to stop thinking that people with dementia have “active imaginations” and accept what they hear, see, feel, and touch as their reality.

One of the most important truths I have discovered over the past several years is that what people with dementia experience is as real as what I experience.

I recently talked to a friend who told me her grandma had dementia and thought a couple with a cat lived in the corner of her bedroom. That couple with their cat? They were just as real to her as the laptop I am typing on right now is to me. If you try to talk her out of thinking that couple lives in her bedroom, you’re gonna have the same result you have if you tell me that there’s no laptop in front of me.

I have a short video clip I show in class. A woman with Alzheimer’s thinks there are snakes in her wheelchair. She’s terrified–as I would be if I were surrounded by snakes as I sit here on the couch. The only effective strategy for eliminating her anxiety is to acknowledge this as reality and remove her from the wheelchair with the snakes. Whether or not these snakes are part of your reality is irrelevant.

We need to stop trying to talk people out of their reality. Furthermore, we need to stop thinking that our reality is more important than their reality.

Thanks, Michelle.

I Don’t Live In Dementialand

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What is it like to live with dementia? I have no idea.

I have a string of analogies I use to explain to families and caregivers what it’s like to live in Dementialand, but the truth is that I don’t know what it’s like.

I know someone who works in adult day services. She works with a woman who has younger-onset Alzheimer’s. I’ll call her Tina.

Tina is prone to what can be best described as meltdowns. In fact, that’s what Tina calls them. Her meltdowns are due to the smallest of things. Someone sat on the end of the couch–where she was planning to sit. The pants she wanted to wear were in the wash. Her nail polish chipped. And, one time, someone used the term “tippy toes,” which she found childish and annoying.

She cries. She gets angry. She can’t calm down or stop shaking. After the meltdown dissipates, she says to my friend, “I’m sorry about my meltdown, but you have no idea what it’s like to have this disease.”

And it’s true. Sometimes when I am doing my best at trying to help someone with dementia and failing miserably, they will remind me that I don’t get it. Sometimes they don’t even have to remind me. Sometimes people will cry and I can’t figure out exactly what’s wrong. I don’t know what they’re going through. I visit Dementialand, but I don’t live there.

As a person without dementia, I don’t get it. And as many people as I talk to and as many research articles as I read, I won’t ever really get it–unless I’m diagnosed, of course. I’ve been through the Virtual Dementia Tour and several other simulations meant to make a person feel like they have dementia. It’s a valuable experience and one I recommend, but I know I’m just visiting.

So here’s the point of my blog today…THANK YOU to those of you who have dementia who try to show me and tell me what it’s like, even though we both know I will never really get it.

They try to show me and tell me in different ways. People with dementia have blogs. They write books and poetry. They allow themselves to be videotaped. They try to verbalize, even though it is hard, what it’s like to live in Dementialand. They allow me to spend time with them, just so I can understand a little bit better.

But the truth remains. I visit Dementialand but I don’t live there.

Yogis in Dementialand

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Come to hot yoga, they said. It’ll be fun, they said.

And I can’t lie. It is fun–in a sort of brutal way that leaves me dripping wet with mascara running down my cheeks.

Yoga isn’t foreign to me. I’m a certified fitness instructor, and I used to teach some yoga myself. But hot yoga just seems different…intimidating…and really, really hot. Scorching.

The instructor preaches a lot of the same things I preach in Dementialand.

“Let go of your expectations. Stay in the moment,” she says. “Focus on the present without looking forward or back. Appreciate being in the here and now.”

I am ridiculously bad at following these instructions. I continue to think about all the emails I have to send when I get home and what TV shows are waiting for me on our TiVo. I wonder if the soup we made over the weekend is still edible.

“No comparisons,” she reminds us. “Don’t compare yourself to the person in front of you, behind you, to your left, or to your right.”

As she refers to each person around me, I look at them with the sole purpose of comparison. I am definitely the oldest person in my immediate vicinity. The joys of living in a college town.

“And don’t compare what you can do today to what you could do yesterday,” she says. This goes against other things I’ve been told in various areas of my life. Isn’t comparing the “you of yesterday” to the “you of today” the basis for personal growth and improvement? How do you have goals if you don’t look forward and back? I’m not all that philosophical though. I’m just hoping maybe if I do this a few times a week my upper body will be more toned.

Hot yoga is tough. As I enter what I consider to be the stage immediately before one goes into extreme heat exhaustion, the instructions seem to get more cryptic.

“Step your right foot between your hands and look over your left shoulder as you press the top of the left foot to the map,” she says. Left-right-right-WHAT? I need references to one body part at a time. I look at the girl in front of me and think she’s doing it wrong. Then I realize I’m doing it wrong. Or maybe I’m right and she’s wrong after all.

I can’t say I hate it. It’s challenging, and I eventually buy a membership to the hot yoga studio. But I can’t help but think that Yogaland is a little bit like Dementialand.

In Dementialand, we tell you to let go of expectations. We tell you to live in the moment. We tell you to stop comparing yourself. That’s what you have to do to get the most out of life with dementia. It’s also what you need to do to get the best out of hot yoga, but I really wouldn’t know. I’m too busy thinking about what I have to do and comparing myself to others. If I ever enter Dementialand full-time, I hope I can do better at following instructions.

A few weeks back I talked to a woman in the early stages of Alzheimer’s. Although still functioning at a really high level, she was depressed. Throughout her life, she was fantastic at designing and sewing clothes. She could still do simple patterns, but her work paled in comparison to what she could do a few years back. As someone who can’t sew, I was still impressed with her projects. I told her it was 100 times better than anything I could do. Probably the wrong thing to say.

“So I’m better at sewing than someone who has never sewn. Great,” she said sarcastically. Obviously, attempting to get her to compare her work to my (lack of) work was not going to make her feel better. She was set on comparing her current work to what she used to be able to do.

I tried again. I tried to tell her to focus on the joy of sewing and not the outcome. She told me that I really had no idea how great she used to be at sewing. She even made wedding dresses. She couldn’t do stuff like that anymore.

“My whole life people have told me to work hard and get better at things. Now everyone is telling me to let go of that and be okay with being bad at stuff I used to be good at it. How do I flip that switch?” she asked. I really had no idea.

What I didn’t tell her was that there may come a point when she can enjoy sewing again. Why? Because she will likely forget that she used to be an all-star at sewing. There will likely come a point when she has no memory of making wedding dresses for friends and family.  I don’t know whether to hope that comes soon for her or not.