Tired Brains in Dementialand

This blog post was a struggle to write.

It usually takes me about 45 minutes to complete a post. Today I’ve been sitting here for well over two hours. And I am on the second paragraph.

You see, it’s the week of finals at the university where I work. It’s stressful for college students, of course. It’s also stressful for professors.

My brain is tired.

I considered taking a week off from writing, but I’m pretty committed to releasing a blog post every Monday morning. I’ve started this post about seven times. Maybe more. I keep writing a few paragraphs that just don’t work…and then I delete them and start again.

There’s also been a lot of staring at the carpet and thinking I should get up and get a snack but not having the motivation to actually do so.

I can’t decide what I want to write about. I started a post about end-of-life decision making and dementia. It’s an important topic, but I decided it was too much of a downer for me to tackle today. I’ll save it for another week. I can’t do it justice right now.

Then I started a post that was intended to be more light-hearted and positive. However, I couldn’t pull off light-hearted and positive today. I just didn’t have it in me. You get it, right?

Most weeks I write easily. I enjoy the process. I sit here in our family room with my laptop on my lap and our dogs by my side—and it’s fun. I look forward to the time I spend writing.

Today is different.

My brain is just exhausted.

Last week was full of emails from students who aren’t pleased with their grades. Have you heard the term “grade-grubbing?” I have sent at least ten emails in the last three days explaining that grades aren’t negotiable. And no….I will not create an extra credit opportunity just for you because you didn’t complete your assignments during the course.

It was full of catching up on evaluating student essays. It was full of students panicking because they are not yet registered for spring classes. It was full of all the typical end of semester stuff. Nothing horrible has happened…just a series of very, very minor crises that must be dealt with.

I’m not complaining. It’s my job, and I like my job. I work with some of the most inspiring, grateful, and promising young people. And you can’t be a professor if you can’t handle finals week. This is not me asking for sympathy or pity. All is good.

More than anything, this is a reminder of how compromised the brain can be when it’s tired. Right now, everything is harder than it should be. Last night I was watching TV and realized I had no idea what I was even watching, even though I had been “watching” for 20 minutes. I also tried to open a new bottle of facewash and couldn’t get the lid off. I just gave up and decided I didn’t really need to wash my face.

I’m also indecisive. The other day I stood in the kitchen staring at the countertop because I couldn’t decide what to have for lunch. I just wanted someone to give me a peanut butter and jelly sandwich on a paper plate. Making a decision just seemed to take more mental energy than I could muster.

This is a reminder of what my friends with dementia struggle with on a much larger scale than I do.

The dementia brain has to work hard to accomplish tasks that most of us consider to be mindless. To scroll Facebook. To carry on a conversation. To wrap a holiday gift. To make coffee. To shower and get dressed.

Those of us who care about people with dementia sometimes place unnecessary stresses on the dementia brain. We don’t introduce ourselves when we enter a room—forcing the dementia brain to waste precious mental energy figuring out who we are. We love to quiz people. We ask Grandma if she knows what holiday is coming up. We ask her if she remembers how many grandkids she has. The purpose of the quizzing is to make us feel better. I mean, if Grandma knows Christmas is coming, she’s doing okay, right?

We take Mom to the grocery store. It’s a bit chaotic—but we don’t think it’s a big deal. Later in the day, she gets a bit testy. She can’t tell you she’s tired. We just know she’s “being difficult.” We don’t make the connection that the trip to the store was just too much. And now her brain is just—-done.

We all know that feeling of being mentally exhausted. We all know that feeling of having a really hard day when nothing seems to go right…and then having someone ask you to do something very simple…something that would be no big deal 99% of the time. And you just can’t handle it. Your brain is tired. Maybe you say something you regret. Maybe you have a minor (or major) meltdown. You get teary. Perhaps you want to punch something. Or someone.

It’s just that the threshold is lower for people who have dementia. The dementia brain takes longer to regain the mental energy it takes to do even simple tasks. And instead of us realizing the person’s brain is fatigued, we get frustrated and say they are “giving us a hard time.” In reality, they are having a hard time.

I can’t say that I know what the brain fatigue that comes along with dementia is like. I know what it’s like to have “normal” mental exhaustion—and I understand how that mental exhaustion can compromise my thought processes, my mood, my ability to converse, my patience… Yet, I know that my brain will recover after the crazy rush of the end of the semester and a little bit of rest.

The dementia brain also functions better with rest—except it needs more rest than the typical brain to function at its best possible level and its best possible level isn’t what it was before the onset of symptoms. The compromised mental energy that comes with dementia isn’t something we can change. It’s something with which we have to cope. And we can do so by structuring the days of people with dementia in a way that provides adequate rest and helping them to avoid unnecessary mental stressors. Sometimes that means keeping our visits with them shorter.

I have told many people with dementia that their mental energy becomes more limited and precious as dementia progress. They get to decide how to spend that mental energy.

A woman that I know who has younger-onset Alzheimer’s recently spent a few hours each day for a week writing and addressing holiday cards. This activity was tiring for her, as she expected. But it was worth it. Sending personal holiday cards to friends and family is an important tradition for her, and she wasn’t willing to give it up, even if it meant she’d be able to accomplish little the rest of the day. Good for her.

In writing this post, my own brain stalled a few times, and I googled “dementia mental fatigue” (and a few differently worded terms) to see if I could find anything to stimulate my thoughts on the topic. Unfortunately, the top few hits referred me back to my own previous blog posts. This reinforced to me that fatigue in the dementia brain is a subject we aren’t giving enough attention. I have no idea why mental exhaustion isn’t discussed more frequently. We are missing the boat on this one, folks.

Dementia isn’t just about memory loss. (I don’t make any money from writing this blog, but I’m beginning to wish I made a dollar each time I could work that exact sentence into a post. I feel like a dang broken record sometimes.)

Here is the take home message…. Sometimes when we spend time with people who have dementia, we think they just aren’t trying. We think they’ve given up. We think they don’t care about their interactions with us. Sometimes we even think that they’re plain rude.

The truth is that their brains are compromised and have to work much harder than a typical brain in everyday life. They are trying. And they are tired.

So there it is–the best post my finals week brain could muster.

Please forgive any typos or grammatical errors.

17 thoughts on “Tired Brains in Dementialand

  1. Yet again,Elaine, you’ve inspired me. I’ve had ‘tired brain’ for almost two months, but I think I’ve got ‘material’ for my own blog at last. The recent few days provided the impetus. Love your post.

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    1. One thing I didn’t discuss in this post but should have is the brain fatigue I see among caregivers…if you are looking for material…. I speak with many caregivers who worry they have dementia when it’s just that their own brains are so overwhelmed and tired by their responsibilities.

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    2. I say that I have dementia to Leslie several times a week! I am brain fatigued for sure. Thanks.

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  2. Elaine, thank you for your continued insights about life in Dementialand. This post, among many others, helps me re-think the upcoming Christmas celebrations and family gatherings. As a daughter, I wrestle with wanting to include Mom in all of the things she used to enjoy about the holidays – baking cookies, church, getting together with family and friends, sitting at the table for hours laughing and recalling past times together. My heart aches when I think about not having her be part of all of these cherished traditions. However, my head is starting to grasp just how difficult it is for her now to navigate these once familiar situations. We’ll be celebrating with Mom a little differently this year: a quiet gathering with just immediate family and a simple meal. It will be different from the menagerie of Christmas’ past, but one thing I’ve learned about life in Dementialand is that it’s all about the present. Blessings to you and yours this holiday season.
    Blessings,
    Elizabeth+

    Liked by 1 person

    1. It’s so great to hear from you. Thanks for sharing your insights. I feel like your decision to make these changes is done out of graceful selflessness. I’m sure your gathering will be somewhat bittersweet–but hopefully your mom will value spending time with family in a way that is manageable. –Elaine

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  3. I am laying here in bed reading your post, with tears rolling into my ears, because you get me. And you say it from every platform you are given. I appreciate you and your passion far beyond these simple words … thank you, Elaine.

    P.S. I’ll give you $5 every time you tell folks dementia isn’t just about memory loss. Start keeping track!

    Liked by 1 person

    1. You could pay me $5 each time I say that, but I’d then have to pay you back for all you’ve taught me about dementia! So we can call it even. Thank you for being a role model to me by keeping your faith and sense of humor no matter what life sends your way, Lisa.

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  4. Hi Elaine
    Just wanted to say how much i enjoy your posts! You give such wonderful, human, compassionate insights into caring for those with dementia. I started my own blog (www.dinasdementiadiscoveries.com) about my journey with my mother who has vascular dementia a few months ago – and actually quoted you in one of my posts :). I hope you don’t mind!
    My blog went on hold because of technical complications (had to get experts, I’m useless at the mechanics of these things), but since it’s been fixed I’ll hopefully be posting new bits soon.
    For interest, there is so little understanding and awareness of dementia here in South Africa – all the way from “medical professionals” to the average layperson (dementia is misunderstood as witchcraft among the poor) – that i decided to plunge in and get involved. I have booked a performance of “The Color Purple” in aid of Alzheimer’s South Africa in February – felt there was some sort of fit with the “Go Purple” awareness movement I picked on https://www.alz.org/abam/.
    Dementia is so disturbing for both the person with dementia and the carer. Thank you for making me feel perfectly normal.

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  5. I appreciate you, I appreciate your finals brain which must be similar to chemo brain at times, and I’m glad to find you here. My alzheimer’s person was named Duck.

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  6. Elaine, I haven’t commented in a while, but I always love your posts. Thank you for this one, and larger thanks for the commitment you make to share your insights. They are so valuable!

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  7. Thank you so much for this reminder, as always, and for your comment above about caregiver exhaustion. I feel like I’m losing it sometimes. Caring for my mom isn’t so much physically difficult at this point, but emotionally it wears me down. I’m just so tired most of the time I can’t think straight!

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