Tag Archives: frontotemporal dementia

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.

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.