A-L-Z-S-U-X. Six characters of a password my mom was reciting to me as I was logging into an account for her. She spelled it slowly so it took me a second to recognize it—Alzheimer’s sucks.
Mom has chosen that password because Dad has Alzheimer’s. Confined to a wheelchair, he’s been living in a skilled nursing unit at a nursing home for about 5 years now. And I can affirm, Alzheimer’s sucks.
My first clue of Dad’s illness came 8 or so years ago during a holiday visit to our apartment. Dad woke up from a seated nap—a long favorite pastime of his—and was super confused. He was unsure of his surroundings and struggled for a few minutes to get his bearings. At the time, I just chalked it up to a deeper-than-usual nap. It didn’t become a clue until after his diagnosis, when we were looking back for early signs.
Years later, Alzheimer’s continues to suck.
During visits over the past several weeks I fed Dad, listened to stories that included gibberish words, and watched him nap sitting up (still a favorite). I’m not sure he knew me, but he seemed to remember feelings for me. And there was a moment when people were calling for a nurse named Joe and he looked at me and asked which one of us they wanted–an old inside joke we shared about assuming one of us was in trouble whenever our very common name was called out in a public space.
Dad was one of the more imposing figures in my life: large, strong and reliable. Now he appears so vulnerable in his wheelchair. This fiercely independent DIYer needs help getting dressed. The hands that ran backhoes and cranes with remarkable precision have trouble maneuvering a fork or cup to his mouth. The mind that once took over a Scrabble game for a grandchild who gave up because they were losing so badly and came back to win against 3 adults (one of whom who would go on to become a professional writer… ahem) struggles to find the right word.
Yeah, Alzheimer’s sucks.
Yet, in spite of all those differences, he’s still Dad. His essence is there. I saw it in the inside joke. The offer to help me with some task he believes needs to be done. The advice to slow down and ‘go easy.’ The stories about his work that I never completely understood even when I knew all the words. Watching him light up to interact with a kid walking by his wheelchair. Essence.
The male staff in his facility appear drawn to his quiet strength, something I’d seen before. And the way he thanks the staff for helping him, even after fighting them. Essence.
Alzheimer’s sucks for us.
On my last visit this trip, I told Dad how sorry I was that he was dealing with so much, so many problems. He told me he had it under control. I didn’t need to worry about him.
More essence, but mixed with troubling truth.
Dad is unaware of how out-of-his-control it all really is. He believes he’s got it.
The rest of us? We know. We worry. We struggle. We grieve.
A-L-Z-S-U-X: Mom’s choice of those six letters in her password makes perfect sense.
Alzheimer’s sucks.