Category: dementia

My husband did an Ironman triathlon in 2014. I was proud of him, and I’m sure you could tell that in my voice if you were to hear me talk about it.

A 2.4 mile swim. A 112 mile bike. Then a 26.2 mile run. I can’t wrap my brain around it. Why anyone would choose to pursue an Ironman triathlon for the sake of a hobby is beyond me. But it does make me proud that my husband chose to do so.

I heard the same pride in someone else’s voice recently when he was talking about his spouse’s hobby. It was an older gentlemen I met at conference put on by the Alzheimer’s Association. He came up to me, holding hands with his wife. She smiled but remained silent. He let go of her hand only momentarily to give me an enthusiastic handshake.

He introduced me to his wife. He mentioned she now had Alzheimer’s, and she lived at home with him. I smiled at her, and she smiled back despite seeming that she wasn’t following the conversation.

“Do you know what she really loves doing?” he asked me with a giant grin of proud excitement. “She loves rolling up napkins and wrapping them around pens! And she’s good at it!”

I felt like he was almost bragging.

I was a bit taken a back. Here was a guy who was telling me that his wife wrapped pens in napkins with the same pride I had when I told people that my husband did an Ironman triathlon.

People frequently tell me about the “odd” behaviors of their loved ones with dementia.

My wife puts dishes in the dishwasher, even if they’re clean.

My husband does laps around the basement all day.

My mom likes to play in the kids’ sand box.

Typically, there’s a question that follows. The question is: “What can I do to get them to stop?”

And no one has ever bragged to me that their mom is good at playing in the sand box.

But this man wasn’t asking how to get her to stop wrapping pens in napkins. He wasn’t considering this an odd or annoying behavior. In fact, he asked me what other activities she might enjoy if she got such a kick of out of doing that.

I found a napkin and a pen (ironically)—and I wrote on that napkin a list of supplies he could get at Hobby Lobby or Wal-Mart. Crepe paper. Metallic wrapping paper. Fabric scraps. Shiny pipe cleaners. Colorful bendy straws.

We decided he should put all of these new supplies out of the kitchen table and sit with her. Then he’d see what happened.

And he was excited. I don’t even know how to convey how genuinely enthusiastic this man was about the plan we had created. He told me he’d go shopping the next day if he could get a ride.

I wish I had gotten his contact information to follow-up. I don’t even remember his name or his wife’s name.

But I’ve thought about them a lot.

I’m not an expert on love, but there’s something to be said for loving someone where they’re at. I’m sure he loved his wife when she didn’t have Alzheimer’s. I’m sure he loved her when they could have interesting conversations and go on adventures together.

But when I spoke to him, he wasn’t focusing on what she couldn’t do. He wasn’t focusing on who she no longer was. He was focusing on who she was now.

And, when her abilities were becoming more and more limited, he looked at her and saw a strength. He could’ve focused on a million weaknesses. He could’ve told me about the struggles and challenges of Alzheimer’s, but on this day he told me about her potential.

She was really good at wrapping napkins around pens. He celebrated that. He loved her where she was at.

And when she sat down and concentrated on wrapping those pens, it made him so proud.

Sometimes the people I meet are pretty dang amazing.

I used to say something that makes me cringe now…I used to say “Dementia is a marathon, not a sprint.”

I would use that statement to encourage people with dementia and their care partners to practice self-care. You have to take care of yourself if you’re running a marathon, right? You have to accept water at the aid stations, just like you should accept help from family and friends if you or a loved one has dementia. You need to not push yourself too much because you’ve got miles to go, and you need to be strategic about how you use your energy.

See? Dementia’s like a marathon.

Ugh.

If I spoke to you years ago and made that statement, please forgive me. It was a dumb thing to say. It isn’t the dumbest thing I’ve ever said—because I say lots of dumb stuff—but it’s pretty dumb.

Here’s the thing, friends. I’ve run a marathon. I decided to do it in the summer of 2012. I knew I’d have a flexible schedule that summer. I had undergone knee surgery the previous year and was feeling like a new woman. I was looking for a challenge.

I signed up for a marathon. I mean, what else do women in their 30s do when life gets stagnant, right?

It was on a particular date, obviously. I knew how my time I’d have to train.

I reserved a hotel room for the nights before and after the race. I looked up restaurants for the night prior to the marathon. I did those things about three months before the actual marathon. You can never be too prepared, right?

I finished that marathon. I wish I had been faster, but I finished.

I’ve heard people say that you’re a different person after you complete a marathon. I wasn’t. I was just me…with a marathon under my belt. That felt good, of course, but I can’t rank it among my most life-changing events. I might run another marathon someday. I might chose not to.

How, my friends, is running a marathon anything like dementia?

Both can be long, obviously, but I can tell you exactly how long a marathon is. It’s 26.2 miles. And then it’s over. Done. Where are my post-race snacks?

I’m sure everyone who has done a marathon counted down the mileage. 13 miles to go. 8 miles to go. 3 miles to go. And then .2 miles to go. If you’re a marathoner, you know that .2 is not insignificant.

If you’ve run a marathon, you know that well-meaning people shout “You’re almost there!” at mile 8 and you want to punch them. You’re not almost there. You know exactly how many miles are left.

Let me ask you this….

How long is dementia? How long will a person live with dementia? How long will a carer caregive? Exactly how long is this journey?

Although a marathon has an exact distance, dementia doesn’t.

I chose to do a marathon. As much as I complained about bloody blisters, lost toenails, chafing, and 4 am 15-mile runs, I made the choice to do a marathon. I wondered at times if it was a great decision, but it was always my decision. When I complained to a friend that I had to get a run in at 8 pm on a Saturday night, he told me I didn’t have to. I was choosing to do that run. He was right.

But dementia isn’t a decision. It’s not a choice. You don’t get to plan to get dementia at the “right time,” like I decided to run my marathon at the “right time.” And, if I had decided to sit down on the curb on one of those early morning 15-mile training runs, I could have sent my husband a text and he would have come to pick me up…well, as soon as he woke up.

You can quit a training run. You can drop out of a marathon. Sure, maybe it doesn’t feel great to quit, but you always have that option.

I wish you could quit dementia. I wish you could say, “Eh. This is really hard today. I’ll come back to dementia tomorrow when I’m more rested.” I wish you could say, “Dementia, this isn’t really working out. I’m done with this.”

Whether you’re a care partner or a person living with dementia, you can’t quit dementia.

Everyone made a big deal when I finished a marathon. In retrospect, the marathon was easy compared to the training, especially since I did most of the training solo.

But the second I crossed that finish line, I started getting voicemails, texts, and Facebook messages. I got a medal. More importantly, my husband drove me directly to Dairy Queen where I ordered a large Blizzard. It’s the only time in my life I’ve let myself order a large Blizzard.

You don’t get a medal when dementia is done. You don’t get to go to Dairy Queen. A guy I know recently lost his wife to Alzheimer’s. He had hoped for dementia to be over. He didn’t want her to struggle or live in pain any longer. But after she died, he said, “I wanted this phase of my life to be done. But now I just feel so empty.”

That’s the opposite of a medal.

I had a conversation with a close friend a few weeks ago. Her husband was diagnosed with cancer in May. He had inpatient chemo for 30 days and is now finishing up (fingers crossed) outpatient chemo.

She confirmed that cancer is no more like a marathon than dementia is. She and her husband did not, in fact, sign up for cancer online. They did not choose the date and place they wanted to experience cancer.

They did not, and still do not, know where the finish line is. Or if there even is a true finish line. Even if chemo does its job, there’s always a chance cancer will return.

My marathon might return, too. But only if I sign up for it.

And let me close by saying this—with the hope it won’t offend anyone.

Running a marathon is challenging, but if it’s the most difficult thing you’ve ever done, I’m glad for you.

Dementia isn’t a marathon. It’s not a sprint.

Turns out, it’s not a running event at all.

 

 

Good morning, my friends!

It’s time for me to take a break. I’ll be back in the fall. In the meantime, I’ll be running some of my favorite older posts on the Facebook page.

I’ve got a report at work I need to focus on. After that, we will be headed to the beach for a week.

While I’m gone, don’t forget to be kind to yourself.

I leave you with one of my favorite quotes:

“She believed she could so she did but then she needed a break.”

Maybe I added that last phrase.

See you later, alligators.

 

 

I had driven across Iowa on a hot and humid summer afternoon to give a presentation to staff at a memory care community. I couldn’t park close, so I had to walk for about five minutes to get to the building.

By the time I entered the lobby, I was sweating. Not sparkling or glowing or any of those other words women who don’t sweat much might use. I was sweating.

And I sweat a lot.

A friend of mine goes to a workout class with me and walks out looking refreshed. I walk out looking like I’ve been stranded on an tropical island for weeks and someone just rescued me…except I’m not that skinny. Ten minutes of exercise and my hair is drenched, my mascara is dripping down my cheeks, and my shirt looks like it’s just been pulled out of the washer.

I know there are medical conditions that cause excessive sweating, but I don’t have one of them. I’m just a woman who sweats a lot.

As I entered the memory care community on this particularly sweltering day, I saw a bench. I decided to sit for a minute and attempt to stop sweating before I walked in to do my presentation.

An older woman with a walker slowly made her way up to me. I greeted her, but she didn’t respond. She sat down next to me.

I figured she didn’t want to visit, so I pulled out my phone to check for messages.

Then she said, “You sweat more than the average girl, don’t you?”

I put my phone down. I hadn’t realized I was sweating quite that much. I told her that I did sweat a lot.

“It’s good. You get the bad stuff out faster so you can be a better person,” she explained.

I hadn’t heard that before, but I was intrigued. In fact, it was the most positive interpretation of extreme sweating that I had ever heard.

“Like toxins?” I asked.

“Oh no,” she said. “Like old boyfriends.”

“You sweat out old boyfriends?” I asked.

“Unless you want to keep them inside,” she answered.

I nodded. I certainly didn’t want to keep old boyfriends inside. I mean, let’s sweat those guys out and be done with them.

There was a short silence as I pictured tiny versions of my old boyfriends sitting on my skin until I wiped them off with a towel.

I asked her if she had sweated out all her old boyfriends.

She said, “No, I don’t sweat so much.”

Then she got up and shuffled on.

And somehow, I didn’t feel so self-conscious about sweating.

There’s something about this conversation that I love.

This woman didn’t introduce herself. She didn’t try to make small talk. She wasn’t commenting on the weather or complimenting my dress.

She went straight for my sweating.

Perhaps it wasn’t appropriate. Or maybe it wouldn’t be appropriate in most settings. Most of us understand that you shouldn’t go right up to someone and comment about what might be making them self-conscious in that moment.

But it’s par for the course when you sit down in the atrium of a memory care community.

If this woman hadn’t had dementia, we probably would’ve had some generic scripted conversation like “Hi. Hello. How are you? Good. And you? Fine. Isn’t it so hot out? When will it cool off?”

Sure, I’ve had lots of people with dementia make comments to me that aren’t kind.

A guy at a facility that I frequently visit often tells me I’m looking fat. Once a man with dementia told me my hair was scroungy like an alley cat.

I know that sometimes people with dementia lose their “filter” or social judgement as the condition progresses. This can mean hurt family members and awkward situations.

Yet, there is a part oft this departure from typical conversation that I enjoy.

When the person with dementia doesn’t follow the “social script,” I feel like I don’t have  to either. And there’s some barrier that breaks down.

A woman with dementia commented on my sweating. She didn’t ask me how I was or why I was visiting. She went straight for the sweating.

I didn’t expect that to come my way, but I leaned in. I didn’t just nod and smile. I wanted to engage.

And I got a reward. Now when I am sweating a lot I picture my old boyfriends squeezing out of my pores.

There’s something strangely fulfilling about that.

 

 

 

I was shopping at Target when I ran into a woman I know. Her mother-in-law has dementia.

If you’ve read my blog for a while, you might think I hang out at Target a lot. This isn’t the first time I’ve written about a conversation with someone I ran into there. In fact, I think it’s the third. I don’t really even go to Target that much, although it sounds like I have a booth there to answer questions about dementia. (Side note: If Target wants to pay me to pick up a side gig at such a booth, I’m open to it. I mean, they have optical. Why not a dementia question booth?)

In this case, the woman was upset because her mother-in-law, Beth, was more interested in another family than their family.

You see, Beth lives in a nursing home, and a family of four resides in a little tent in the corner of her nursing home…at least that Beth’s reality. Beth’s family’s reality is different. They don’t see a family living in a tent. They see a small table with a few figurines and a lamp on it.

“What should we do?” the woman asked me.

I asked if the tent family seems agitate Beth or make her angry or sad.

“No,” the woman said to me. “It’s annoying that they are all she wants to talk about but she seems to like them.”

I said that I didn’t see a problem…that perhaps this family kept her company…that maybe she found a sense of purpose in looking after them.

“How can you say there’s no problem when my mother-in-law is obsessed with a made-up family supposedly living in her nursing home room?” she asked, a bit frustrated with me.

I get why she was surprised when I said I didn’t see a problem. I get why she didn’t accept my answer. And I regretted how I worded my response.

I understand that this situation as a whole is less than ideal. I understand that Beth is a woman in her 70’s who is supposed to be enjoying her grandchildren. Instead she didn’t know their names. This was a woman who used to be everyone’s confidant. Now she rambled on about the tent family and couldn’t follow a conversation. This was a woman who ran her own business, and now she couldn’t even remember what she sold.

But she remembered the details of the tent family.

The dad was a doctor. The mom was a nurse. They had two kids–a boy and a girl. Beth said the kids were doing well in school. The boy even played baseball. The girl was sweet but absent-minded. She always forgot her jacket on chilly mornings unless Beth reminded her.

Beth’s daughter-in-law was resentful of the tent family–as resentful as you can be of a fictional family that lives in the corner of a nursing home room (which was actually pretty resentful). She saw the tent family as an obstacle in communicating and connecting with Beth. And she was frustrated that Beth could remember details about the tent family but couldn’t remember that any of her kids were married or that her own husband had passed away.

I tried to reframe it for her. Maybe the tent family was an opportunity. Maybe the tent family was a way to connect with Beth.

I suggested asking questions about the tent family and making them the center point of conversation. If they were the only topic that engaged Beth, it seemed like talking about them was the best way to engage her.

I want to be clear that I don’t think every problem is an opportunity. I’m not that person who minimizes problems and tells you they make you stronger and contribute to your personal growth. I’m your realistic friend–not your sunshine positive rainbows friend.

Sometimes you have mean, awful, ugly problems and there’s no way to reframe them more positively.

But once in while…once in a while…we see something as a problem when it’s not a problem.

Dementia is problematic, to be sure. It creates challenges and it hurts people and it limits lives. It can be one of those mean, awful, ugly problems. Obviously.

But the tent family? I didn’t seem them as a problematic. In fact, I felt like everyone should just accept and makes friends with the tent family.

I didn’t think the woman would take my advice. She seemed resistant to accepting the tent family as part of…their family.

But then I got an email from her a few weeks later. Here’s an excerpt:

I asked Beth about the tent family and we connected like we haven’t in a long time. She was so excited to tell someone stories about them. Each time I go, I get excited to hear what she is going to tell me they are up to. Last time she told me that dad was cheating on the mom and she was planning to tell the mom. She also said the boy got caught kissing a girl behind the school and he was grounded. The girl was twenty years older, so the parents weren’t happy at all.

Sometimes what we view as a problem isn’t such a problem. And sometimes stepping into someone else’s reality–especially when it’s quite different than our reality–is where we connect.

 

We have a winner, folks.

Bill Bass, Cedar Falls, Iowa (should I be inserting his age here as well?), suggested When Dementia Knocks and this title was the runaway winner by vote.

To clarify, I used popular vote and not the electoral college. And it was all online—so no hanging chads. I can’t make any conclusions about Russian collusion at this point.

I can’t speak for all of you who voted but I’ll tell you why I think the new title is a fit.

Dementia knocks…

Dementia knocks quietly on the door. Maybe you ignore it for the moment.

Dementia knocks and you open the door. You adjust to its company.

Dementia knocks and then forces its way when you don’t answer.

Dementia knocks you on your butt. You get up. But sometimes it takes a while.

Sometimes the knock is gentle and even kind.

Sometimes the knock is brutal.

And then it’s gentle again.

But it never really stops knocking.

So here we are…a few years into this blog and still going strong (well, most days). A new name. A new layout (if you use the actual WordPress site).

And an upcoming FREE dementia conference with a FREE lunch–but you have to register in advance. If you are in the vicinity of Northeast Iowa on July 19, check it out:

https://www.eventbrite.com/e/uni-gerontology-conference-building-a-dementia-friendly-community-registration

In closing, I’m going to share–with the permission of the writer– an excerpt from an email I received this week. I’ve read it about 439 times. And I’ve obsessed about my inadequate response.

Here’s what new friend had to say in that email:

I’ve just received a shiny new Alzheimers diag. Sad but relieved. I’m not going crazy it’s my brain that has broken. It’s better to have a name for the enemy. Maybe I can turn him into my buddy. I feel like I have a few years when I can still be me and do my things. After that I hope she can put me in a nursing home and move on with herself But for today I am okay. Just gotta try to be okay tomorrow and the next day and everyday. All I want to do is keep being okay and not be a bother. I think life still can be good. For now anyways But I am so scared.

I’m humbled that someone would reach out to me hours after an official diagnosis. But my response about new challenges, new goals, planning, maintaining relationships, realism, hope, and how it’s okay to not be okay fell short.

How could it not?

I can’t fix dementia and my typed words from 2000 miles away can only be so supportive in such a situation.

But when you find yourself with that “shiny new Alzheimer’s diagnosis,” you should know you’re not alone. Until there’s a cure, there’s education. There’s support. There’s life to be lived. And professionals like myself need to keep working hard to send those messages.

And when there’s a cure, I’ll happily find another way to spend my time. Maybe I’ll start that doggie daycare for senior and disabled pooches. If you think that’s a joke, you don’t know me.

But for now….I’ll keep writing because dementia keeps knocking…. (was that too corny?)