One day last week Steve, Lewy Body and I spent the morning together. Just the three of us. I was there to help Steve through his morning but when it came time for me to leave, it wasn’t clear who’d helped who. Unexpected because it was a Thursday, our morning together was an inspirational delight.
Lewy Body Dementia
Make no mistake, Lewy Body Dementia is dreadful. It affects an estimated 1.4M people and families in the U.S. alone, according to the Lewy Body Dementia Association (LBDA), and it is ruthless. One of the 3 most common types of dementia, the LBDA describes its symptoms like this:
“A complex disease, LBD can present with a range of symptoms including problems with thinking, memory, moving, sleep and/or changes in behavior, to name a few of the physical, cognitive, and behavioral symptoms.”
Other than medical professionals, most people I speak with aren’t familiar with it. And I describe it (in my own layman’s terms) like this:
“An awful combination of the most difficult physical symptoms of Parkinson’s Disease along with the nastiest of nasty version of the cognitive and behavioral symptoms commonly associated with Alzheimer’s.”
Certainly not a professional description but it gets the job done with respect to helping whomever I’m speaking with grasp a clear picture of the challenges Steve faces on a day-to-day basis. And it is quite the challenge.
The fact is that the reality is worse than the descriptions. Words on a page don’t accurately capture the essence of Lewy Body’s cruelty. On most days, the damned disease makes it hard to see the strong, caring, curious, courageous, gregarious, quick-witted, funny, resourceful, loyal, loving and protective man Steve’s always been. If we let ourselves get hung up on it (and we do at times), it’s exceedingly sad for all who know and love him.
But that’s not the purpose of this post. This is a story of triumph. Because last Thursday morning, Steve won and Lewy Body lost.
Our morning started with a banana (Steve’s first order of business each morning), a blueberry muffin, and coffee. I was reading the newspaper aloud as we ate and Maggie (our lovable but exhausting) puppy was hovering– ready to pounce as soon as a crumb dropped.
Me: How’s that muffin, Steve?
Steve: I’ve had better (Wry smile)
Steve: Silently extends his arm to hand Maggie the rest of his muffin
As I walked over to the kitchen to discard the rest of his muffin and make him some scrambled eggs, the smile on my face grew with every step. His eye contact, words, and smile were a point on the board.
Steve 1, Lewy Body 0.
Clear that he was having a good morning, Steve and I decided to do some walking. He refused his walker–begrudgingly accepted his cane, and took off. It was cold and rainy outside so we were relegated to a purely indoor walk. Space was limited but he used every inch of the main level of our house like an indoor track. Steve was hopping from window to window with me close on his heels.
When he stopped for what felt like an extended period, I light heartedly poked him:
What’s wrong, you getting tired Steve!?!
He considered my comment for a few moments and took off again. Walking with determination (this made me smile as it always does), he turned back to me after a few steps and deadpanned:
Kiss my as*
His head was turned just enough so I could see half his smirk from my position a couple of steps behind him. He took a few more steps before he came to a stop. When I caught up and came in front of him to make eye contact, his smirk had morphed to full on laughter. It wasn’t clear if he was laughing at me or with me, but it didn’t matter. We stood there in the kitchen, looking at each other and laughing together. And it felt great.
Another point on the board for Steve.
Steve: 2, Lewy Body: 0
After a couple more laps, we reclaimed our seats at the kitchen table. More coffee for me, chocolate milk for Steve and some quiet moments watching the bird feeder that was suctioned to the window. A few birds came by and he gladly pointed them out and told me what they were.
When our collective interest in birdwatching dried up after thirty minutes or so, we read some of my book and looked at a batch of old family pictures. The pictures really had Steve engaged, until they didn’t. At a certain point, it was clear that he was ready for a rest.
His eyes became distant and his eyelids seemed heavy. So on we went to his room. Fortunately enough, we got him into bed just in time. He fell asleep quickly but before he did, he said this:
That was nice. Thank you.
I’m not positive what he was calling nice, but I believe he was referring to our morning. Lewy Body was showing its teeth now. His legs weren’t cooperating and he was unsure of why he was getting into this bed–feeling like we were in the wrong house. We discussed this at length and he decided it’d be ok to lay down in this bed. More importantly, Steve didn’t care that Lewy was showing its teeth. It could wait because he had more to say.
He wasn’t saying the words to uplift me (even though that’s what they did), he was just being Steve. Always gracious and thoughtful, Steve.
Put another one on the board.
Steve: 3, Lewy Body: 0
You ate breakfast, read the paper, walked around the house, watched some birds, had bits of conversation and looked through family pictures? And that’s a win?
Yes. Absolutely, yes.
If you aren’t familiar with Lewy Body, Alzheimer’s or any other forms of dementia, I can see how the morning I’ve described could seem underwhelming. For me though, it was anything but.
Our job as caregivers is to support Steve to help him live the life he wants to live day-to-day, given the constraints of Lewy Body. His smile, laughter and level of engagement are the metrics that tell us how we’re doing.
Steve: 3, Lewy Body: 0
So any morning Steve tells me to kiss his as* with a smirk and then is stopped in his tracks by his own belly laugh, is a victory. When Steve proactively expresses himself and offers a thank you? That’s an absolute win.
We know the full extent of Lewy Body’s wrath and our expectations have been reset accordingly. As a result, we don’t go searching for big wins. But that doesn’t render little victories like a smile or a laugh meaningless. With Lewy Body on the scene, little wins are the new big wins. And that’s ok.
And throughout the morning, he reminded me, again and again that real Steve is there. He’s harder to see on most days, but he’s still there with his humor, humility, determination and graciousness intact.
I won’t ever fully understand the challenges Steve is faced with unless at some point down the line, I myself am living with Lewy Body Dementia. I hope I never have to find out but if I do I pray that I face it with the tenacity, grace, and gratitude that Steve does.
We don’t know what tomorrow will bring, but seeing Steve take the W last Thursday morning was delightful.
And he was an inspiration along the way.
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