We were pre-pandemic, We were a little less than 20 months away from the final station of this journey. Mom was diminishing, but there was a lot of her left. The nurturing we offered would never stop the diminishing, but I think nurturing what was left helped her, especially knowing now how the pandemic escalated her decline.
At mom’s memorial service, my son offered this (and I paraphrase): “She was only a little bit worse each visit. And with each visit, you adjusted your expectations just a little bit. So it was a slow, creeping heartbreak. It never quite hit me until she was gone because we had to make these micro-adjustments as we went. We adjusted to a new reality each time.”
What many visitors didn’t understand is that when company came, she improved. It’s like she rose to the occasion, not unlike the family who frantically tidies the house when someone comes knocking, deep breath, “Won’t you come in,” and the house looks fine, certainly much better than it did five minutes ago.
Visits were a type of nurturing.
Stimulation (visits, walks, small trips, popcorn and a show) is nurturing. Familiar tasks are nurturing. Allowing them to do what they can and to use what they still have left of their mind and body is a type of nurturing.
We could have done more—caregivers can never do enough—but I’m sure small things like letting her wash dishes and paint made her feel better, helped her feel she was still contributing.
What neither mom nor I knew at the time was that for all the diminishing and disappearing parts, mom was contributing more than to my heart than I could possibly return to hers.
©Pennie Nichols. All Rights Reserved. 2023
With each new day, the vacancy in her facial expression seems to widen a bit, her gate is less assured, her voice weaker. I feel like the physical “absence” mirrors the mental.
On becoming a bumper car
She’s still pretty good. But she fights hard for that. She continues to understand what’s happening to her, the Alzheimer’s. She remembers basic routines and she knows her people. The names come out like lottery tickets from a barrel, sorted mainly by gender, no longer by age, relation, or even death. Nearly every time she talks to me about her sister, who died in September, she refers to her as Pennie.
You mean your sister Norma, don’t you?
Oh yes! Norma.
I think family and friends expect less of her when they come to visit. She perks up a bit when she has company. It’s part of her fight, solving the puzzles, sorting the names, following the stories, washing dishes. And, without dwelling on it, she’s open about her battle. When she has a load of company that she wasn’t expecting, she does very well, she seems improved even. But the not expecting part is the key. If she’s not expecting something, she’s not in charge.
My dad and I have learned, not gracefully, that when there will be an event, company for the holidays, or a trip, the anticipation undoes mom. An anxious wheel spins out of control in her head and she becomes frantic with worry about getting ready because . . . she’s in charge of getting things ready.
Who’s in charge?
My mom is from stock that takes charge. We weren’t military families but there was something militant about the tasks and projects, practical approaches, no nonsense. You could count on mom, as well as her siblings and parents, to swoop in, make things easier, get things done.
That’s the wicked twist now. The thing she was known for, good at, sought out for—that gift she had—sends her into a nasty, out of control spiral. A bumper car, bouncing off the edges of her world. The bigger the upcoming occasion, the steeper the disorientation, the more severe the loss of sleep.
What are you looking for?
I don’t know.
My dad and I try to include her in as many activities as possible, especially the ones that make her feel useful. She wants to contribute. But it’s hard to know where the edges fray.
How can I help?
Mom has been refinishing a few small pieces of furniture for me. She’s always been an excellent painter, whether furniture, inside walls, exterior trim and walls. Not just good, excellent. I gave her the first small table.
I’ll come up in a bit and help you with this.
But a bit later, she had already sanded it. She didn’t remember I had also given her the paint.
What color do you want me to paint it?
Remember, I gave you the paint.
But she did all the prep work without me coaching her.
More recently, she has needed more help collecting things for the task. The sander. The brushes. It’s hard to know from day to day how much help she’ll need.
Dad invited her to paint a shed he recently built. Her face lit up and she was off to collect her things. But bumper cars and being in charge.
What are you looking for?
I don’t know.
The anxiety escalated quickly, and dad wasn’t sure she would be able to handle the task at all. As he collected the brushes and trays, and removed the stress of being in charge, she was able to move comfortably into the task. Her work was excellent.
She fights for it. She wants to be in charge, but she also she doesn’t want to be a burden. Who knew the two impulses would collide? Bumper car.
Knowing her limits
Dad and I want mom to feel at ease, to find purpose in her day, and we’re learning what her shifting limits are. We’re learning how to be present for her.
Mom comes down to my house three or four times a week to see what she can do for me. She likes to wash my dishes, take out the compost. When she arrives, I’ll look out and see her bent over a walkway pulling up weeds. That’s useful. Then, as she walks to the door, I watch her move. Sometimes I know by her steps or her gaze: bumper car.
I should know where this goes but . . .
Here, let me help. I’ll put the clean dishes away for you so you can wash the dirty ones.
©Pennie Nichols 2019 All Rights Reserved
When I think of my dad, I think “death of a thousand cuts,” but not just for him, for all of us.
This touched me deeply. My father suffered from Alzheimer’s and died of it.
It’s such a difficult, slow heartbreak.
I remember everything you wrote about here. She fought hard and long-to her last two to three months on earth I believe.