Usually, my mom just says “It was a bad day” when my dad… well, has a bad day, dementia wise.
But she confessed recently that Dad gets up in the middle of the night agitated, having been woken by the hallucination of a crying child, somewhere in the house. He’s compelled to get up and search, convinced a small and helpless person needs him. It’s difficult to calm him down, because (as anyone whose been responsible for a small child knows) those distressed cries hook something deep inside a parent, something that is not easy to let go of.
Somehow this guts me worse than the other stuff. My dad was pretty hands off as a parent, perfectionistic and demanding when he did interact with me.
But he was a medical doctor, so when I was small and sick, he was the one who came to comfort me in the middle of the night. I had frequent ear infections growing up, and often I’d wake (predictably on a Friday night, my dad was always sure to remind me later) with my eardrum thrumming and deaf and excruciating, on the brink of breaking.
In the bleary middle of the night, my dad would take me into the living room and peer into my ear with an otoscope from his medical bag. He was always gentle and soothing in those moments, and had the power to write a prescription for a dose of syrupy sweet pink medicine that fixed me. It is such a powerful memory of comfort that when I first found out he had dementia, I made sure to ask him to will the otoscope to me on his death.
It feels like seeing into a parallel dimension, that somehow my clinical and hands off father is tortured by the sounds of small children crying, unable to sleep for the need to find and comfort them.
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My mother also confessed that my father often doesn’t know who she is when he wakes up anymore. BUT! He has a jitterbug phone, and so he’ll call her!
Can you freaking believe this stroke of genius? He’ll be lying in bed and he won’t know who the woman next to him is, so he’ll call his wife on the phone.
Mom now sleeps with her phone next to the bed, so he’ll call from his spot on the right, and her phone will ring on the dresser to the left, and he’ll whisper the problem into the phone, until he puts together that the woman he’s called is the woman in bed with him, and it’s a perfect logic circuit, so he’s soothed. For some reason, this makes me laugh every time I think about it.
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Also, since I don’t know where else to put these odds and ends, here is a copy/pasta of the last email my dad sent. I feel on the fence posting it, not wanting to make fun of him in any way. I love this letter as much as it kills me. I should post one of his older letters for contrast, but I can’t get myself to do it, wanting to keep those parts of the parenting I got from him selfishly for myself. But I should say I inherited my writing skills from him. You can kind of see it, even in this letter:
Friends,
This evening our Refrigiter came apart. I don’t know why? It crashed to the floor without a word! Food splattered all over what is left. I have know idea why it did that. We got the Refridge from the lady who told us we could have it. Nice lady. We tooked it all the way to (town they recently moved to). The ladie said her grandmother had given it to several years ago. I looked carefully and found the words Crosley nailed to it. I don’t think Crosleys exist any more. What can I do?=
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A few months ago, he overheard my mother on the phone with me and hallucinated/misunderstood that I needed money to pursue something for The Cool Thing.
A few days later, my mom sent a super apologetic letter, explaining what had happened and that Dad was insistent that he help me follow my dreams. She said she knew I didn’t need money, and yet Dad had not been able to let go of the idea that I did. He’d triumphantly taken the letter to the mailbox himself, she told me later by phone, to make sure I got it. Mom said he wanted me to be sure to know that he supported me in every way possible. Inside the letter was a check for a thousand dollars.
Of course I won’t cash it, and he’ll never know that I didn’t – my mom did the books even before his dementia. I have an urge to frame it, like it means something important, except seeing it every day on the wall would be too sad. Some kind of photo album seems appropriate, but I think maybe I’d never open the album again, knowing what was inside to stumble over. Maybe it’s enough to document it here, like all the other things that have happened with him.
I love all of this … even though I know that its origin is in this horrible disease that is robbing your father, and your whole family, of so much. The thing is, inside there, is your dad … bits and pieces slip out … even the crazy ones (maybe they were carefully hidden from view before). But the idea that he is pushing out these bits right now — the ones that show just how much care/comfort he wishes he could still give you all, that one I love the most.
The tears spill from my eyes …as I wonder how to remember my parents before fear and paranoia and grief became the predominant motivation for all they do.
Peace to you … and, yes, we will hold the bits here.
I read this piece the other day, and thought of you … and all of us struggling to be adults in our parents’ decline.
http://www.pbs.org/newshour/making-sense/tips-for-talking-dementia-coach/
Oh my dear. I can’t click away without saying I think of you and yours often, even when I have nothing remotely useful or intelligent to say. God this life is bittersweet. Hx
<3 Thinking of you and yours, always.
So touching. My heart aches with the sadness while still brimming with the love.
I am learning to love your dad through these stories.
That Jitterbug thing is brilliant.
So much sweetness in all of this. Dementia is such a cruel disease, treasure the sweet things.
We took so very few photos; it wasn’t a place we wanted to remember. There are still photos of him at my sisters wedding and he’s well on the way to looking like a serial killer.
Photos of daddy wearing a nappy and drooling? Nup, no thanks.
Thinking of you.
Just love you. I don’t even know your real first name, but you share so much of your heart, I could never help but to love you. Thank you, Anne Nahm.
Are you going around all day feeling like your skin’s been stripped off and everything you touch and see and hear has the potential to be really fucking amazing or really fucking painful, or both? Because I think I’d be doing that.
Wow, love.
Thank you for continuing to write; I assume and hope you get a tiny bit of help from it, and it’s certainly good to see how you’re doing. (But of course your needs are the most important in terms of when you do/don’t feel up to it. I’m trying to say thank you, not how dare you not write more often. <333)
I feel for you rather a lot.