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.
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.