My dad is sometimes sly now. Middle sister coerced my mother into taking him for an evaluation. Apparently my father became irritated at the tester asking him a bunch of questions he couldn’t answer, so when she stepped out for a moment, Dad slipped out of the room and hid.*
It took them half an hour and a Code Yellow to locate him, because he’d stand behind a half-open door, and when he saw them check one room and move on, he’d steal into the checked room. “See how they like not knowing the answers!” he told me later, laughing at his own pranks.
Good news on that front.** First, it appears from the MRI (? I think. It was some acronym, but maybe CAT or something else) that Dad’s dementia is vascular, not prototypical for Alzheimer’s or even Lewy Body, and possibly a function of his Type II Diabetes.
In terms of heritability, this is at least something my sisters and our children can combat through avoiding diabetes (eating better, staying trim) versus the more depressing, Whelp, You Are Genetically Fucked, Sry. Less comforting as Middle had gestational diabetes, which has a higher rate of association with developing Type II down the road.
Second, Dad got on some medication, which has been ‘helping tremendously’. He’s sleeping up to six hours in a row at night, and he’s not as agitated. By my mother’s account, the medication is ‘really for the caregiver’ as it’s not stopping Dad’s dementia, it only makes it easier to be around him.
In this reprieve, my mother has recently gotten enough sleep to realize our relationship has changed. For me, it’s been happening over the space of a year and a half. I guess for her, it’s some Jumanji shit, where she’s been in the jungle of elder care only to suddenly land back in the real world.
(Historically accurate, except my moms is 60+, so white hair, but same ‘do):
She’s wild and panicked to have lost her place as the matriarch in our family. Or maybe she’s just had enough sleep to understand everything’s falling apart. Either way, she wants to talk every day, needy for me to trust her again, to be dependent on her for nurturing. I’ve told her all the ways I know how – that time is over. She chose to go with him.
I don’t mean that in a cruel way. (Although, reading it back, it sounds cruel and angry as fuck) It’s just that I can see this is only a bubble of time before it gets bad again — Dad’s dementia hasn’t been the ‘leveling off’ type. It’s been the ‘hey, let’s suddenly fall off a cliff’ type.
And like Mom said, the medication’s not slowing the dementia, it’s just masking it. She’s here right now, this resemblance of her old self, but I know it’s an illusion. I’m settled with offering her support as she goes through this. I guess in that sense, she’s right — I don’t trust her anymore. I mean, I believe she believes what she says. She’s just wrong.
It’s awful to hear my mother plead that she can make things the way they were before if I just give her a chance to prove herself, because it lets me know she really has no idea how this whole dementia thing is going to steal us all from each other.
*Can’t express how freaky it was for my Dad tell this story, his eyes lighting up over causing someone else distress. I expected the dementia to diminish him like he was a fire going out. And mostly, it is like that. Except when it seems like he’s been possessed by some sneaky and low creature, unrecognizable as his former self.
Other personality changes include him telling me dark secrets. The darkness, at least, seems like it was always there in his personality, just inaccessible due to his morals. Every conversation with him feels to me like being a little kid on Mr. Toad’s Wild Ride — I’m white knuckling the armrests, wondering if this story is going to veer off into the black-lit darkness of some horrible historical data.
The first time he told me something awful, he went silent and somber, studying his hands. After a moment, he said, “I’ve never told anyone that. I don’t know why I told you.”
I smiled and told him it was OK. My stomach was rolling, knowing the father I knew would never tell me those things. Or maybe he would, but there would not be the roller coaster fear associated with it — will he say too much? We are right on the teetering edge of what I can bear to hear about, and he’s still talking. And if he says too much, how will I ever know if it’s true, or some fabrication of his demented thought process?
Half my thoughts were those of a child : Am I in trouble – about to see the unseeable? The Bible story of Noah cursing Ham’s son running through my head. Over that, the adult thoughts of, this is just ghosts passing by. Nothing has changed except the perspective.
It’s somewhat horrible to realize how sad it used to make me that my dad kept me at arms length, and now that the barrier is deteriorating, I have to rethink that maybe he was protecting me and I just didn’t understand.
** Other news, harder, but good. He lost his drivers license (obviously, but I guess if you fail the evaluation, it’s mandated by law). The doctor was very nice, and he brought out the test results, so my father could see all the dark spots in his brain. “It looked like Swiss Cheese,” he told me later, devastated. But he was so proud that the doctor treated him like a former MD who could read test results, my father nearly cried.
The shitty, hard way to learn that we never truly know someone, and how we’ve perceive things is probably not at all how it really is (ie protecting you, not keeping you at a distance). My heart hurts for you. However, thank you for baring it all. It opens up my world in a weird way. I hope it makes me think more before I speak and act because I am more aware that everyone is carrying some burden.
Oh but I could just weep for this.
When you lose trust in your mom (I’ve found) a little piece of you crawls away to die. I’m sorry you’re there.
So beautifully and heartbreakingly written. I am keeping you and yours in my warm thoughts, always. Hugs to you.
This is so beautiful that I almost feel guilty being so amazed over something that’s brought you such sadness. This is just a tremendous bit of writing and thinking. It really makes me examine my relationship with my own parents and wow, you just have so many wonderful insights. I truly hope this whole experience brings something positive and wonderful for you a hundred miles down the road, past all the shitty parts. All the pieces are torn up and flying through the air but maybe they will eventually land in a much better way than they started.
The collateral damage of this disease is not something we often talk about. Thanks for shining the light. I hope it helps you to share.
Fragile
I’d envisioned getting older
as a toughening process.
I believed that when I was matured,
when my grey hairs had arrived,
my heart would be mighty.
That each beat and each thud
would be audible to those
who claimed a bit of my love.
Instead I find I’m brittle and worn through,
that those things which did not kill me
most assuredly did NOT make me stronger.
I suspect I ‘m doing it wrong.
Anne, Obviously some time has passed since you wrote your Diaper Genie post and since I can’t comment there because I guess the comments have been close – I just wanted you to know that I howled at the post. I had a diaper genie in 1985 with child #1, child #2 came 5 years later and actually had more toxic waste but like you I got complacent and by another 5 years later, I was too busy (and out of bags) to ‘do the twisty thing’. Thanks for making my day albeit many posts/years later. Those little ‘babes’ of mine turn 30, 25 & 20 this year but that post took me back. Diaper Genie fart and all, those are good memories that no one can take from me!! lol