Often you’ll hear people explain about someone who has Alzheimer’s, “He’s not himself anymore.” We said that about mom more than once: “She’s changed. It’s the Alzheimer’s.”
Is it? Did she?
Sometimes I wonder if filter-thinning dementia exposes hidden layers, a lifetime of layers that were tamped down, that no one knew.
Some of the layers are unpleasant, so we like to think, “She’s changed. She’s not herself.”
In the thick of her Alzheimer’s, one of my grandmothers began swearing like a sailor. She had been the meek, sweet grandmother, quiet, a little unsure of herself outside of her home. Maybe she had some bottled up frustrations? Anger? Perhaps she was tired of being the wallflower.
The other grandmother who had very little patience for bottling up her impatience or discontent and had always filled a room with her confidence became sweet, gentle, unsure, and very dependent on my grandfather. Maybe she was tired of always holding it together and proving herself? Maybe she was weary of quick discipline to keep life in order.
Mom changed. She became more tender with people and with animals in her Alzheimer’s. She wasn’t herself… Or was this the part of herself that she hadn’t shared before because she had to be strong and tough. She also threw hissy fits and tantrums, but the tender moments stood out in number.
I wrote this post after watching a tender moment between mom and her sister, less than a month before her sister died. Mom’s tenderness was a surprise, and I’m grateful I was there for it.
If you’re the caretaker, your person will change. Whether the change is easy or challenging, laced with tenderness or rage, respond with as much compassion as you can muster. They are in an unforgiving battle. My hope for you is that you will be present for some of the wins that remain. They might be tiny, fractured moments, but you will carry them with you when this is over.
©Pennie Nichols. All Rights Reserved. 2023.
There’s a song I’m not crazy about but I can’t get it out of my head.
I had mostly succeeded. Then Spotify played it again and now the ear bug.
Since I haven’t been writing about anything, I decided I’d write about this song and a lesson I learned from my mom.
The song starts:
Like the moon in the sky in the afternoon in July
From the get-go, anyone who knows me might ask: “What’s your problem? The moon? You love it more than ice cream. July? Your birthday month!”
But if you know me, you’re also asking: “Why haven’t you been writing?”
So many answers:
- Something personal I can’t get my head around.
- Don’t want to hurt people I love.
- Life’s complicated.
- I’m busy.
- I’m thinking.
- I’m a coward.
The song goes on:
A little darkness hangs there above me.
We all have a little darkness. I’m not unique. But sometimes that darkness falls heavy, tangles up around our ankles making it hard to move forward.
Although my current circumstances are dreamy (hopping from island to farm), my ankles kick at the dark blanket, looking for release. Was it this song?
Don’t look at me.
I don’t like it but I don’t hate it. It goes:
I know you hate to see me cry
Don’t wanna look you in the eye
There it is. Don’t wanna look you in the eye.
Writers often (if not always) feel undressed when we put our words out there, stumbling graceless through our darkness. Don’t wanna look you in the eye.
I set out to write vigorously about the journey my parents are on, the Alzheimer’s bullfight they’re in. From a distance that seemed easy. Just write about the changes and challenges.
I wasn’t prepared. That’s a legit excuse.
Closer to the truth? I’m a coward.
As you watch someone you love diminish, unexpected things go on inside yourself. Regrets. Lost chances. Helplessness.
It’s natural to want to do the big thing. If we can’t save the person, we want to do that thing that makes an emotional, qualitative, quantitative difference.
Failure? Not the most tasty writing topic for me. But who are we talking about?
- Mom? The ideal ALZ patient, facing her bull knowingly and hopefully, compliant to treatments, aware even as she’s losing, some days more than others.
- Me? Supposedly here to help, but what do I do? Feels like little. Am I cowering in the corner?
That was a trick question. This is about a lesson from mom and a song.
I’m not crazy about this song but I love it. Maybe it struck a chord because I first heard it one day when I took mom to visit her baby sister, who has lung cancer.
Mom’s Family of Do
Mom and her two siblings (this is where I smother my coward and say some things) are independent, DO for themselves, workaholics. They are the best but sometimes the most challenging. Don’t expect to kick back and just relax on vacation with them! Gotta DO something! And they have hard edges. This quirk may be one reason mom has faced her bull with open eyes, because she is determined to DO things. Take medications and supplements, work puzzles, stay active, move.
My aunt, too. She’s done all the things they’ve told her to fight her disease.
But it’s not working. That magic thing that they did all of their lives is not working. It’s not working for mom. It’s not working for her sister. There is nothing they can DO.
A Tender Moment
Earlier this summer, when my mom and I arrived to visit, my aunt wasn’t in a good way. She fussed about her frustrations. I could see mom becoming more and more agitated, wanting to DO something to soothe her.
Thinking that wouldn’t be possible, I announced: “We should go so you can rest.”
But mom ignored me. Instead, she asked her sister: “Do you want me to rub some lotion on your legs?”
My aunt: “I don’t care!”
I didn’t want to include the exclamation mark, but it’s more accurate than not including it.
And she said it more than once. “I don’t care!”
This was both true and untrue. As mom and I looked for the lotion, my aunt continued to protest:
Don’t worry about it. I don’t care. It doesn’t matter.
Mom didn’t relent. She found the lotion, sent me to fetch a towel, and began rubbing my aunt’s feet and legs. Mom, hardly able to remember what we discussed two minutes ago, was attentive, asking “is this good?”, arranging the towel under her sister’s legs.
I teared up as my aunt relaxed, sank deeper into the recliner, and sighed: “That feels so good.”
On that same day, I heard this verse:
I don’t need you to solve any problem at all.
I just need you to sit here and love me.
What Can I Do?
My mom is diminishing. My aunt is diminishing. Nothing I can DO will change the enormity of their diminishing. I can’t fix it. I can’t solve that problem.
But I’ll sit.
And I’ll love.
I also have the DO gene, so this is challenging.
I’ll honor the lesson I learned from my mom and a song. Be brave. I’ll just sit here and love them.
©Pennie Nichols All Rights Reserved 2019
The song is “Sit here and love me” by Caroline Spence. I say “I don’t like it” but, really, I love it. Thanks, Caroline.
I so hope your observation isn’t true. It’s logical, but….I remember someone (not my mother in law) who had been in my life for many years, who had been the best neighbor a person could have, but then the Alzheimers struck. This is difficult for me to write, but his behavior towards me became inappropriate in a physical way, something that had never happened before in all our relationship. I certainly didn’t want to mention it to his family, also people I had known for many years, to cause them pain. After several visits where it kept occurring each time, I didn’t want to visit him anymore. Perhaps I was a coward but I also didn’t know how to handle that behavior. Did he always have those kinds of feelings towards me, and now had become so impulsive that he couldn’t control it? I don’t know. I want to remember him the kind, caring way he was.
I’m not sure I’m right, but right or not, remember him for his kindness. Even if he had a darkness beneath, he cared enough to tamp that down and be good neighbor.
Pennie, this takes me back to those days when my darling mother was failing. She lived to be 97, but the brain can’t always keep up. I loved her so. She would tell me she had been traveling, with her sisters, both deceased. But that was comforting. I was with her when she took her last breath. What a blessing.
Beautiful, Beth. Thanks for sharing.
Fascinating about how people change as they get Alzheimer’s. I think you’re right. The part of the personality or soul that’s been repressed for a long time finally emerges. The mind is so interesting.
I’m sure there’s some science that can be explored here that will confirm or disprove this notion, but it certainly feels like it’s true.