Category Archives: friendship

What You Do For Friends in Dementialand (aka What I Learned From My 5th Grade Teacher Mr. V)

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Flashback. I am in the 5th grade at Mulberry Elementary School. There is a girl in my class who I will call Mindy. Mindy has special needs. She’s very sweet but doesn’t quite fit in as hard as she tries. She’s obsessed with Iowa Hawkeye football and never misses a game on TV. One weekend, she gets to go to a game. It’s a really big deal for her.

The Monday after the game, my teacher (Mr. V as we call him) does something that I haven’t forgotten. He asks Mindy to run an errand to the school office. While she is gone, he tells us that when Mindy returns he will ask her to tell us all about the Hawkeye game.

“I know that many of you have been to lots of Hawkeye games, so it may not seem like a big deal to you, but this is a BIG deal to her,” he tells us while Mindy is out of the room. “So when she talks about it, you will be excited. It’s just what you do for a friend.”

He specifically says you will be excited. He doesn’t say you will try to be excited. He doesn’t say you will pretend to be excited. He says you will be excited. Instead of questioning whether or not a person could actually be excited just because they are told to do so, I tell myself I must be excited. I’m an obedient child and I put a lot of energy into my efforts to impress my teacher. (Yep. I was that kid.)

That was more than 25 years ago. And the lesson stuck.

I went to New York City with my friend Holly a few years ago. Holly was an art history major in college and was excited to visit the Metropolitan Museum of Art on our trip. I hate to admit this, but I appreciate art about as much as I enjoy eating cat food. My previous visits to art museums included me stomping around and pouting like a small child who had their candy stash raided…and that was when I was in my late 20’s.

But this was going to be different. I was going to be excited to go to the museum….because Holly was excited. And it’s just what you do for a friend.

Here’s the funny thing. At first, I was faking it. I was pretending to be interested. I was trying to not spoil Holly’s fun by acting like someone was sticking needles in my eyes. At some point, my fake excitement morphed into real excitement. As we left the museum, Holly bought me a large soft pretzel from a cart on the street and I had to admit it had been a pretty good afternoon.

And I wasn’t just saying that so she didn’t feel bad for subjecting me to the museum. I realized my interest in art had gone from a 2 out of 10 to maybe a 5 or 6 out of 10. (Of course, my favorite piece of art in our home is STILL the print of four dogs playing pool with a cat dartboard behind them. It’s not as tacky as it sounds, really.)

We typically think that we act more enthusiastically about something if we are more enthusiastic about it. However, I also think we become more enthusiastic about something if we act more enthusiastically. Our actions may follow our feelings, but our feelings also follow our actions.

Every month, I visit a memory care community where a woman with dementia greets me. She’s always sitting in the lobby with a Christmas fleece blanket on her lap. Every time I walk in (at least for the last six months), she exclaims, “Did you hear I have a new grandbaby?”

I don’t know this for sure, but I’d guess she says that to every single person who walks through those doors during the day. I would assume she did have a new grandbaby at some point in her past. Maybe that grandbaby is my age now. I have no idea. And it doesn’t matter.

She’s excited. That excitement is rooted in her reality. Even though she may not have a new grandbaby, I get excited to talk to her. My excitement is genuine, whether or not her grandbaby is.

A woman recently told me that her mother, who has dementia, often talks about how she won the Powerball. Of course, her mother didn’t really win the Powerball. However, the woman told me that her mother is so jazzed about winning that it makes everyone around her happy. It seems irrelevant that 2.3 million dollars isn’t coming her way. Her enthusiasm is contagious.

As the woman was leaving her mom’s nursing home room one day, a staff member said to her, “It always makes my day when your mom wins the Powerball! I hope she wins again tomorrow!”

I spend a lot of time being excited about stuff that is rooted in the reality of people who have dementia rather than rooted in my own reality. But why is their reality any less worthy of being celebrated than my reality?

A couple weeks ago, a women with dementia told me that her cat had a litter of 102 kittens. I know the woman has not been out of the nursing home for a year, and I know cats don’t have litters of kittens that large. Still, I found myself getting genuinely excited as we chatted about the kittens. I asked her to tell me more about the kittens. She said most of the them were green and they were all healthy.

“Green? Are you kidding me? They sound adorable!” I said.

“Well, it’s amazing what they do these days,” she told me, shaking her head incredulously. “People can just do it all. You never can tell what color it’s all gonna turn out.”

As I left the nursing home that day, I realized hearing about this exceedingly large, amazingly healthy, and colorful litter of kittens had made my afternoon.

When we care about someone, we get excited when they get excited. It doesn’t matter if what they are excited about isn’t really in our wheelhouse. It doesn’t matter if it’s rooted in our reality. It doesn’t even matter if it doesn’t make sense.

It’s just what you do for a friend.

Pushy Awesome Friends in Dementialand

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A few weeks ago, someone made a not-very-nice comment about my blog. It’s okay. I’m over it (sort of), but I can’t say it didn’t sting. It wasn’t constructive criticism. It was mean-spirited rather than useful. I even lost some sleep, and sleeping is my favorite thing in the world. (If you know me, you know that I don’t exactly excel on little sleep.)

I had been on a roll writing my blog, but this took the wind out of my sails. I didn’t want to write anymore. I told a few of my best friends this, and they all had the same response. They didn’t tell me I should keep writing the blog. They told me I would keep writing the blog.

They didn’t entertain my reasons for wanting to stop or take a break. They didn’t want to have a long discussion about it. They just told me that I would keep writing the blog. I would keep writing because there was no other option. And so I did keep writing.

Sometimes that’s what the best of friends do. They don’t talk to you about your options. They don’t tell you what choice you should make. They just tell you what you will do and then they make sure that happens. I’m generally not a fan of pushy people, but there are times when your best friends step in and make a decision for you. It may not be what you want at the time, but it’s what you need.

I spoke at an Alzheimer’s workshop last week. I noticed two older women in my audience. They were well-dressed, attentive, and poised with pen and paper to take notes. They sat in the second row, and I liked them immediately because they laughed at my jokes. After the presentation, we struck up a conversation at the refreshment table. (As an aside, if you want to talk to me after I do a presentation, don’t go to the stage, head to the food table, especially if they have cinnamon rolls.)

One of the women, Ann, was caring for her husband with Alzheimer’s in her home. Her best friend, Carol, had insisted they come to the workshop.

“I didn’t want to come listen to you at all, honey. But this one here made me,” Ann told me as she motioned toward Carol.

I learned that Carol had read about the workshop in the paper and told Ann about it. Ann was somewhat interested, but finding someone to care for her husband would be difficult, so she told Carol it just wouldn’t work.

That’s when Carol said that they would be attending the workshop. She called her own daughter to come stay with Ann’s husband, and she called to reserve their spots at the workshop. She told Ann what time she would be picking her up. She also mentioned that she would be buying lunch after the workshop. To make a long story short, Carol is awesome. And I told her so.

“I still didn’t want to come,” Ann confided. “But I really didn’t get a say in it.”

Ann had a couple of questions as a follow-up to my presentation. We chatted for 15 to 20 minutes about her husband’s challenges with impulse control and anxiety. Carol pulled a small spiral-bound notebook out of her purse and started taking notes on our conversation. At one point, she asked for my business card in case they “needed me” in the future. I happily handed it over. I really hope they do reach out to me in the future.

I can’t stop thinking about how I wish that every caregiver had a friend like Ann had in Carol. If Ann had asked Carol if she should find someone to stay with Ann’s husband so they could go to the workshop, Ann probably would’ve said no. That’s why Carol didn’t ask. She just did it. She didn’t ask if she should call and reserve seats at the workshop. She just did it. And sometimes that’s what the best friends do. They don’t ask. They just do. Maybe it’s pushy, but maybe pushy isn’t always a bad thing.

As one of my best friends was battling cancer about a year ago, she said something that has stuck with me. She was speaking about her neighbors when she said, “They’re the type of friends who don’t ask if they can bring dinner over. They say they will be bringing dinner.” When she said that, I vowed to try to be that type of person (although I can’t cook…so maybe bringing dinner over isn’t really the absolute best way for me to help people).

Unfortunately, I find that many caregivers don’t have supportive friends like Ann does. Dementia can be isolating and take a toll on friendships. Even close friends may not know what to say or do, so they keep their distance. They think it’s better to say or do nothing than to say or do the wrong thing.

This goes for those who are diagnosed with Alzheimer’s and related dementias as well as caregivers. I once asked a woman in her early 40’s who had been diagnosed with Alzheimer’s what the biggest surprise had been. She said that it was that the friends she thought would never leave her side had left her side. She defended them, saying that she knew they were confused and scared. Even though she tried to not take it personally, it hurt.

My point here is ridiculously simple. We all need friends. Having dementia or being a caregiver for someone with dementia doesn’t change that.

And maybe friends need to stop saying, “Let me know if you need anything,” and instead say, “I thought you needed this, so I already did it.”

Finally…to my friends who told me I would keep writing my blog…thanks. I owe you guys.