Showing Up is Half the Battle in Dementialand

On an average day, a shower takes me six minutes. It takes me about six minutes to dry my hair. (It used to take about nine, but I got it cut.) I can put on make up in less than five minutes. If I have a few extra minutes, I can use them to flat iron my hair…which takes about four minutes. Why does any of this matter?

Having a rough idea of how long it takes me to get ready is important because it tells me when I need to start getting ready. If I have to leave the house at 8 am, I try to be in the shower at 7:20. If I jump in the shower at 7:30, I can make it, but I’m gonna feel rushed. If I jump in the shower at 7:40, people usually say things like, “Are you feeling okay? You don’t look like yourself today.” (And I usually mention that I’m feeling great because I slept an extra few minutes–but I’m not wearing concealer.)

Having an accurate estimate of how much time it takes us to do certain tasks is key in getting through the day. If I make a cup of coffee to take with me, will I be late? Do I have time to stop at the grocery store on my way to dinner with friends? What time do I need to leave my house to get to the basketball game before it starts? Your brain negotiates stuff like this all day long.

When I wake up today, I will look at my Google calendar. I can see that I teach a fitness class at 8 am, as I do a few times each week. However, my Google calendar doesn’t list the timeline of events that I must complete in order to get to the point where I will be in a position to teach aerobics at 8 am. Those are mentally noted in my brain and I work backward from 8 am to decide what time each task needs to be complete–but they aren’t the type of thing that you write in your planner.

Between 7 and 7:30, I will put on my workout clothes and put my hair in a ponytail. I will eat my breakfast, which is typically a smoothie that I blend in the dynamite Vitamix blender that my husband and I bought as a Christmas gift for ourselves. I will doublecheck to make sure that my iPod is charged. (As an aerobics instructor, a dead iPod is the stuff of nightmares.) In winter, I will put on pair of boots and carry my workout shoes with me so that I don’t track muck into our gym.

I will leave the house by 7:30. I will drive to the gym. Once I get there, I will go into our employee office for a few minutes to write out an outline of the class I plan to teach that day. I will grab a key to the equipment closets and sound system. I will head down to the gym, unlock everything, do a soundcheck, and start getting out the equipment we will need for the class. At about 7:57, I will choose the music playlist for the morning. (My crowd generally likes Motown and dislikes techno. Really dislikes techno.) If all of the previous tasks were completed on time, I will walk to the front of the gym at exactly 8:00 and start teaching my fitness class.

Keep in mind that the very first thing on my Google calendar was “fitness class” at 8 am. However, there was a lot that had to happen before 8 am to put me a position to start the class at 8 am. (And there are hundreds of tasks I didn’t mention, like putting up the garage door so I don’t back into it–not that I narrowly avoided this one Monday morning recently.) On the mornings I teach, these tasks have just become second nature. And, I’m guessing, you have similar routines.

You know what time you have to start getting dinner ready to have it on the table at 6 pm. You know what time you have to get your kids out of bed to have them to the bus stop by the time the bus comes. You know what time you have to leave to make it to your hair appointment on time. But there are literally hundreds of small events that must be completed on a timeline to put us in position to accomplish the daily tasks on our schedules.

You might have guessed where I’m going with this… People with dementia struggle to manage time and tasks.

A few years back, I went to listen to a speaker. He was a man with Lewy Body dementia, and I’m not sure exactly how to explain how amazing his speech about living with dementia was–except to say that I was certain he was far more articulate, more insightful, and much funnier than I am when I do public speaking. I tried to pay attention to what made him such a great presenter so I could implement some of the same tools. To be honest, I was worried he was a fraud–or maybe misdiagnosed.

I was fortunate enough to get to go out to dinner with him that evening. His wife had to help with navigate the menu, and he kept getting confused about where he was and where he was headed next. I tried to ask, in the most tactful way possible, how a guy who was too overwhelmed by a restaurant menu to order without assistance could get up and speak flawlessly in front of a hundred people. He and his wife quickly confirmed to me that he was not a fraud and was likely not misdiagnosed.

He told me that speaking in front of a crowd was easy. It was the process of getting to that point that was difficult. He said that he had a planner where he kept track of his obligations. He would often look at his planner and see that he had a speaking engagement. It was the couple of hours before the speaking engagement that overwhelmed him. He couldn’t manage the tasks he had to do to get ready and get there without constant prompting from his wife.

His wife relayed a story about a recent community event where he was the featured speaker. They had to be there at 7 pm, and would have to leave their house by 6:30. At 5, she told him it was time to take a shower. He took his shower, while she showered in the other bathroom. After she finished showering and putting on her makeup, she came to check on him. He was sitting on their bed, still wet and naked as a jaybird (her term–I’m not even sure what jaybirds look like or why they are the most naked of the birds).

“I told him to shower,” she said, with a laugh. “I guess I never told him to dry off and put clothes on.”

She threw him a towel and told him to dry off. Then she pointed out the clothes he was going to wear that night. Next she went back to the other bathroom to blowdry her hair and finish getting ready for the event.

At about 6:15, she checked on him again. This time she couldn’t find him. She smelled something–and it smelled good. It smelled like someone was grilling. And she realized that someone was her husband.

She stepped out on the deck to find him all dressed up, putting burgers on the grill. She asked him what he was doing.

“I’m hungry,” he said. “I’m making us cheeseburgers.”

She tried to explain that there was no time to make cheeseburgers. She told him that they had to leave in 15 minutes. He took the burgers off the grill and put them back in the fridge. She turned off the gas grill when she realized he had neglected to do so.

Then, she drove him to the event, where he beautifully explained the challenges of living with dementia to a large crowd. In fact, he explained it so well that it was hard for some people to believe he had dementia.

“He does great at public speaking once we get him up there,” his wife told me. “But getting him to that point? It’s a struggle.”

I know a woman, Lena, who was always punctual. In fact, she was critical of those who were habitually late. Lena once told her own daughter that her chronic lateness was a sign that she was selfish and inconsiderate. When Lena started showing up late to work and social events, people knew something wasn’t right. It wasn’t that she didn’t know she had to be somewhere at 7 pm. It was that she struggled to mentally schedule and complete the tasks needed to actually get there at 7. She couldn’t set a timeline to get dressed for the event by 6:30 and leave by 6:45. It was the first sign of dementia noticed by her family and friends.

Think about your days. Think about all the places you are expected to appear at certain times prepared for whatever you came there to do. Work. Meetings. Appointments. Lunch with friends. A concert. A basketball game. Dropping your kids off at soccer practice. Happy hour. For most of us, we’re talking about a dozen events each day. Imagine if you struggled to figure out the steps you needed to take to get there for each of them. You’d be exhausted by mid-morning.

And then sometimes we have to use a lot of mental energy to plan for events that don’t even involve leaving our homes….

I can’t say I’ve ever cooked a real Thanksgiving dinner for a large crowd. If I have it my way, I never will. And it’s not because I’m a bad cook. (To be fair, I probably am a bad cook, but that’s not why I won’t do it.). I don’t want to take on this challenge because the idea of managing time and tasks to put a complete dinner on the table at a certain time completely overwhelms me. To me, the most challenging piece of pulling off a meal like this is managing your timeline so that everything is hot and ready at your designated meal time.

A friend of mine visited her grandma for Thanksgiving this year. Her grandma was hosting a large crowd of family and friends for a 5 pm meal. When my friend arrived at 3:30, the turkey was still frozen. When my friend asked her grandma about it, her grandma told her that she would put it in the oven after the green bean casserole was done baking. When her family tried to explain that the turkey should have gone in the oven about noon, my friend’s grandma got argumentative–because she had cooked dozens of Thanksgiving meals and wouldn’t put up with anyone telling her she didn’t know what she was doing. She was diagnosed with Alzheimer’s a few weeks later.

Dementia is known for impacting memory, but it impacts brain function more broadly than most people realize. It affects planning–which means people with dementia are often challenged by looking ahead at the day’s schedule and taking appropriate steps to carry out that schedule.

That doesn’t mean they are unmotivated. And, no, they are not trying to be frustrating. It’s just…dementia.

According to Stephen Hawking, “Half the battle is just showing up.”

Maybe he should have left out the word “just”—because showing up isn’t always easy.

And I’d say that often showing up is more than half the battle in Dementialand.

13 thoughts on “Showing Up is Half the Battle in Dementialand

  1. Elaine, you nailed this. I have so many reminders on my phone to tell me when to do things and where I have to be. I use my Google Calendar to give me reminders and I have time checks to make sure I don’t run late. It’s exhausting having Alzheimer’s.

    What really struck me was the story about the gentleman with Lewy Body. My wife tells me all the time “when you give your presentations, you go back to being your old self. It’s like you transport in time.” I tell her that it feels exactly like that. My long-term memory houses the PR / Marketing / Advertising me and when my presentation starts, out it comes. I become who I was 5 – 10 years ago.

    I sure wish I could control that but it’s not as easy as that.

    Thank you for sharing this information. It’s very eye opening.

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    1. Thanks for sharing your experience–which is more eye-opening than anything I could ever share. I think people don’t appreciate how much mental energy it can take someone with dementia to do something seemingly simple.

      Liked by 1 person

  2. Reblogged this on Alzheimer's: The Journey and commented:
    I am reblogging this story for it is very similar to what I go through on a daily basis, especially when it comes to giving my presentations.
    The polished presenter you see when I give my presentations is not the same person my wife and children live with. I wish it were.

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  3. The struggle to get her husband ready, and yes, many times I saw my husband just sitting there naked as a jay bird, is so true. My husband has fronto-temporal dementia and the disease has robbed him of the ability to “get there”.
    By the way, while Alzheimers gets the lions share of publicity for dementia, it would be a great service to enlighten your readers about FTD, a rarer type of dementia, which strikes young and is often misdiagnosed.
    I love your blog. Thank you. Diane

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    1. Thanks for your comments! For a rarer type of dementia, I sure know a lot of people with FTD. I also know a lot of people diagnosed with something else that I suspect have FTD. I typically lump different types of dementia together when I write this blog because the purpose is to help individuals see dementia from a different perspective–rather than to distinguish different diagnoses. However, I like your idea of enlightening people about “when it’s not Alzheimer’s”….I’ll be working on something!

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    1. Someone recently observed dementia in my husband. I have suffered for 24 years never knowing for sure and never having support. So many weird behaviors which I fought, now have new understanding and compassion.

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