“What goes on in that place in the dark?” – Elvis Costello
Yesterday morning I walked in the annual “Walk to End Alzheimer’s.” They didn’t have it last year. COVID you know. It was a short walk that lasted all of about 20 minutes. It was a beautiful 80 degree Saturday morning, and fluffy white cumulous clouds walked aimlessly along with us as they floated overhead across the bright blue sky.
The starting area was littered with sponsor tents and colored flower pinwheels as people in matching t-shirts and a few dogs mingled about. There was even a local DJ bumping out tunes, and it wasn’t lost on me at all when he cued up the Aerosmith Run-DMC 1986 collaboration “Walk This Way” when the walk officially kicked off at 10.
I mentioned the flowered pinwheels that were present for anyone who was walking or somehow involved in the event. The different colors of the pinwheels are all symbolic: a purple one means you lost someone to Alzheimer’s; yellow means you’re a caregiver to someone suffering from Alzheimer’s; blue means you’re suffering from Alzheimer’s; orange means you support the Alzheimer’s Association; and the newest flower – the white one (introduced in the last few years) represents the future – a cure to Alzheimer’s.
I walked alongside the Grand Brook Memory Care team which takes care of my mom, who suffers from the disease. They’re wonderful people. In the past, they’ve had their residents participate in the walks as well. But not last year or this year – COVID again. I think about how hard it must be to work in a memory care facility with people that don’t even remember your name. These workers are constantly just making sure that someone’s loved one eats a meal, or showers or gets dressed in their own clothes. Takes a special kind of someone is all I know.
It’s been a slow progression for my mom dating back the better part of five or six years. There were signs even before that, but it’s just been the last few years where it has gotten to the point of full-time care, and it was one of the key factors in moving her and my dad to Rogers from their home in Norman, Oklahoma in October of 2017.
Yesterday was also mom’s 75th birthday. Fitting I suppose. After the walk I stopped by Grand Brook to see her, and wish her a happy birthday which I’m sure she had forgotten about even before I left. We sat there and bounced around the years while listening to some 50’s music. She can remember every lyric to every 50’s hit, but she can’t remember what she had for breakfast or even what she was doing five minutes before I showed up. What a strange and twisted disease.
We sat in the courtyard and talked about the weather… numerous times. She remarked on several occasions how big the clouds were. She asked me how work was multiple times. She wondered what the inside of “the home” (as she calls Grand Brook) looked like and did I want to come inside. I had to tell her repeatedly that it’s colder inside and much more comfortable outside (which was definitely true). I’ve gotten used to the repetitive nature. It doesn’t make it any easier though. It just makes it different. You really have to spend time with a dementia patient to understand.
My favorite are doctor visits. I took her to the dentist on Friday for a routine cleaning. I know somewhere in the chart at the dentist is something about dementia. There has to be as many times as I’ve taken her there. Yet I’m not even surprised anymore when the hygienist starts in with her questioning to my mom – have you been flossing regularly? Do you used waxed floss? Do you have an electric toothbrush? All questions which my mom answered… incorrectly. I honestly just sat in the corner smiling to myself and reading my emails on my phone. You can choose to get mad or just choose to try and find some humor in a time where nothing seems very funny at all. I don’t always choose the latter, but I did Friday.
So for the better part of an hour, mom and I sat in our rocking chairs watching clouds, and birds, and butterflies float in the breeze. Occasionally, a resident would wander out and walk around the pathways. While I watched a few of these Grand Brook residents, I began to wonder what kind of lives they used to lead. I wondered what this terrible disease robbed them of, and what kinds of challenges their families have faced. Probably not a lot unlike my journey or yours or anyone else’s that has been touched by Alzheimer’s. Now though, these residents just wander, many with blank looks on their faces lost in an every-changing world of their own, searching… searching for something… searching for a cure.
“Well she used to have a care free mind of her own With devilish look in her eye
Saying “You can call me anything you like,
But my name is Veronica”
In 1989 Elvis Costello released the track “Veronica” which he co-wrote along with Paul McCartney, who also contributed with bass play on the song. The name “Veronica” was Elvis’ grandmother Molly’s Catholic confirmation name. She suffered from Alzheimer’s.
There’s a short interview with Elvis before the video starts and at one point he says “you just sit there and bounce around the years with her.” Anyone with someone who has dementia can completely relate.
So let’s bounce around back to February of 1989 when Costello released this song. It was Costello’s highest charting single reaching #19 on the Billboard Hot 100. This video also won a Best Male video award for Costello.
“And you could try to work out what was going on in her head. But I think it’s something we don’t understand. Not yet, anyway.” – Elvis Costello
It doesn’t seem like much has changed since Elvis made this song and video some 30 plus years ago. There have been promising developments but at a seemingly snail’s pace. Pray for a cure and donate if you can.
Thanks for reading and maybe one day my mom will hold the white flower.
Great post! I hope one day we all hold the white flower. Before my dad passed he showed signs as his short term memory was pretty much gone. He would ask the same questions over and over and tell the same army stories over and over. My kids would just smile and pretend he was telling us for the first time. They were great with him. It is hard to go through but would trade anything to sit there again with him and hear those stories one more time. Thanks for sharing your story.
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Thanks John! You can definitely relate then and yes, let’s hope for the white flower one day soon!