Dementia Isn’t a Marathon

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.

 

 

15 thoughts on “Dementia Isn’t a Marathon

  1. I like the marathon comparison. Instead of saying dementia is like running a marathon, saying it is like running a marathon in certain ways is more accurate. None the less, I enjoyed you article today and look forward to more. I’m glad you’re back.

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  2. Thanks Elaine. Good to see you back, and thanks for the insightful blog. There are certainly similarities in the necessary self-care required in running a marathon and living with dementia. I remind myself to pace myself and use self care, on a daily basis, and you are quite right these things are very necessary, to be able to keep going on a day to day basis. You’re recognition of this in the past was not “dumb”, nor in need of forgiveness. It is a sign of your continual learning that you are now able to recognise the differences between living with dementia and running a marathon.

    What I admire most about you is that you are continuing to learn and gain a better understanding of how it is for us – that is a sign of real caring, and I can’t thank you enough for that. Keep up the good work.

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  3. I feel like dementia is much like the reality TV show “Alone”. It follows the self-documented daily struggles of 10 individuals as they survive in the wilderness for as long as possible using a limited amount of survival equipment. With the exception of medical check-ins, the participants are isolated from each other and all other humans. (Unlike dementia, they may “tap out” at any time, or be removed due to failing a medical check-in. The contestant who remains the longest wins a grand prize of $500,000.) The angst they go through is the closest thing I have seen to being comparable to living with dementia, even though it still misses the mark in many ways.

    I love your blog posts, Elaine. I am glad you are back. I missed you.

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    1. Yeah, I probably should have better explained the show and contestant’s struggles for those who have not seen the show. Although I ave not watched episodes/seasons where people drank urine and ate bats, I don’t doubt it happened. I’ll hold off on sharing analogies until I find a better one.

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    2. Actually the analogy is really striking to me—-because it emphasizes the isolation rather than the actual disease. I know you’ve said before that reactions to your dementia are worse than the dementia itself. That’s something I think about a lot.

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  4. Pretty much every metaphor, analogy and/or simile has limitations. The part about the marathon simile I appreciate is that you have to pace yourself or you will burn out. I ran a marathon in 2010…won’t do that one again. 😉 If you allow yourself to get won out, you will never make it to the end. You just study (you “train”). You find some running partners. You stay in touch with the docs. You take your hits (blisters, chafing, muscles, etc…), but you keep going. The end is when your loved one gets his/her wings.
    I completely appreciate what you are saying, though. Dementia sucks and sugar-coating or simplifying it isn’t often helpful.
    Keep up the great work on your blog. 🙂

    Liked by 1 person

  5. So very glad to see you are back, and hopefully doing well after your break. Your statement of not knowing how long you’ll be carer hit home. My husband has the beginnings of Alzheimer’s related dementia. It’s mild, for now, but we both wonder how long he has left to live and how we will manage. Thank you for being here and for supporting us in our journey.

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  6. Wow. Thanks. Sometimes you just get overwhelmed, as carer, with not knowing how long you’ve got to be parceling out your energy, what pace to maintain, how to keep both your spirits up.
    Marathons & long-distance hikes are good images to a point, but you’ve described important limits to them here.
    Welcome back, Elaine!

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