This was originally posted on 9/28/23 behind a paywall. Decided to make this post public in honor of my mother’s birthday this week.
My Mom celebrated her 79th birthday two days ago.
She’s part Choctaw Indian (although I don’t know the percentage).
She’s got master's in public administration and criminal justice. She had plans to go to law school with my godmother, but she (my godmother) ended up getting pregnant. So, future plans to go into practice together were scrapped.
She’s the reason I love the written word (both reading and writing).
She was my go-to parent when I needed assistance with my English homework.
She was my go-to parent if I needed permission to do…well, anything.
She was the mediator between her daughters and her husband, because, well, house full of estrogen.
She was the ultimate grudge-holder (still is) if you piss her off or wrong her family in some way. I get that from her. Thanks, Mom.
She could hate your guts behind your back but talk all civil-like to your face. I get that from her, too. Thanks, Mom.
She never yelled at us or never had to raise her voice. Her and my Dad had the Disappointed Silence down pat and, honestly, that’s worse than yelling. But she had The Look. You know what I’m talking about, right? The I’m-so-angry-I-want-to-twist-your-lips-off-whoop-your-ass-red-with-a-leather-belt-ground-you-for-life-but-all-you’re-going-to-get-is-this-look-of-utter-disappointment. I, too, received this gift from her and have been known to wield it on more than one occasion. Thanks, Mom. For reals.
When I was younger, friends of the family would say I looked like her. I never saw it. Until one day I did. And I’m not hating it.
We were starting to see the signs over the past few years, but last year, the diagnosis was official in 2021:
Dementia. Not Alzheimer’s. There’s a difference.
She’s losing her mind.
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At least, her short-term memories.
She’s the last one standing on her side of the family. There’s no one else.
Her biological father died when she was five. I don’t remember the cause.
Her stepfather (my grandpa) died while I was in college (the first time), early ‘90s. Undetected cancer.
Her mother (my grandma), who also suffered from dementia (with Lewybody), died in the early ‘00s.
Her younger sister (the coolest aunt EVAH) died in November 2019 from stroke complications.
In her lifetime, she’s fallen and hit her head three—possibly four—times. One of those times I actually witnessed, when we were all at a roller rink.
She had a small brain tumor removed on the left side of her head in 2010.
She’s also taken medication for several years to control mild epilepsy.
We believe the knocks to the head are what started it. The petite mal seizures probably helped it along, but the nail in the coffin was the tumor. The doctor who’d performed the surgery warned us about the potential memory loss.
I think we were hoping it would be just that.
Potential.
Now, she’ll ask you the same question multiple times within a span of 10 mins.
She no longer drives.
She no longer reads books or magazines.
She gets lost in a 3-bedroom house that she’s no longer starting to recognize. She thinks she’s not at her home and wants to go home.
More often than not, she thinks my Dad is her stepfather. A man she’s always hated and someone who used to physically abuse her mother, and (possibly) sexually abused her.
Her vision is starting to deteriorate. Shadows on the floor and patterned rugs make her believe she needs to step off/around things. She reaches out to feel things as if she were blind.
She reads invisible messages—verbatim—that we don’t see.
In the air.
On clothing.
On the walls.
In the pictures on the walls.
On the floor.
On the bedsheets.
On the window shutters.
On countertops.
Usually, these messages are from people she doesn’t know and sometimes they tell her to do things.
These are the messages that scare us the most.
She sees people we don’t see. And when we ask her what their names are, she can never remember. We think maybe these are people she knew/worked with long ago (before my time). Or she could be seeing dead people. Who knows?
She’s starting to forget that I’ve lived with them for the past two years. And that I’m her youngest daughter.
As her health continues to decline on what seems like a weekly basis, we all struggle to adjust to this new normal.
A new normal that involves living in a past where her mother, younger sister, and stepfather are still alive.
A new normal where she still lives with them in a house that was sold more than 20+ years ago.
A new normal that requires us to “live” in her reality for a little bit, acknowledging or going along with it until she gets distracted.
A new normal where sometimes we have to go “back” with her before we can bring her “forward” into the present.
I feel my Dad struggles the most, as he’s slowly losing the love of his life. There’s 58 years of memories there.
This disease, that causes so much dis-ease, is no joke.
The sad irony is that she knows she’s losing her mind. She thinks she’s going crazy and wants to know if she can take something to make it go away.
Every time she asks that, I’m reminded of the scene in “Rise of the Planet of the Apes.” James Franco’s character uses his own father as a guinea pig, giving him the same serum he’d given Cesar in hopes that it would work for him the same way it was working for the chimp.
And it did. For a few days.
Until it didn’t.
There’s no cure for dementia.
I understand that.
There’s only medicine that slows progression.
We’re aware of the newer drugs coming out, but we’re not happy with the side effects; the possibility of brain bleeds is 50/50, but we feel it would be too risky for her since she had the tumor.
In September, during a telehealth call with her social worker from Banner Alzheimer’s, some hard truths were revealed. Based on the actions we’ve been seeing from my Mom, she’s been moved up a stage to moderate-advanced.
Miz Social Worker made the suggestion that we look into hospice services. Not because she’s dying, but because of the support they offer.
Sucker punch #1.
I teared up a little on that.
I mean, it’s not something we thought had to think about this soon. But in reality, she’s probably been declining for some time, albeit slowly. Now, it just seems to be faster.
“Do you have a POA in place if something should happen?” Miz Social Worker asked.
“Yes,” my Dad said, “we have it set up to resuscitate.”
Miz Social Worker hesitated for a moment before basically saying he ought to think about changing that decision.
She’s getting older.
She’s already declining.
If they revived her, her level of health wouldn’t be the same; she could be weaker.
Would we want to make it even harder for her?
Sucker punch #2
Fuckity, fuck, fuck, fuck.
She’d made a good point, in the kindest way possible.
I remember crying quietly and my sister stepping over to comfort me.
Recently, we took the advice of Miz Social Worker and toured a Hospice of the Valley campus last week. There are nine locations in the valley, but this particular one focused specifically on dementia patients.
Not gonna lie, it was beautiful; Built from the ground up a year ago. The lobby looked like the living room in a house. And the courtyard was so damn peaceful, with its calming water feature, and designed with dementia patients in mind.
Mom seemed worried that she would have to live there, and how much it would cost. We assured her that it wouldn’t be all the time, only up to five days per month (when Dad needed a break to catch up sleep or catch up on things), and their insurance would cover it.
This disease is like an onion, peeling away the layers of Mom’s mind, making me dread what will be uncovered.
And what will be left behind.
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Sweet girl, this is so hard. Props to you for being present to it. Not everyone would be. I saw AWAKENINGS after my grandfather died (on video, back in the day) and had to excuse myself from my friend to go bawl in the bathroom for 20 mins. There was this moment (a day and a half?) where my grandfather could see without his glasses, hear without his hearing aids, and it was so magical and beautiful...and then it went away (and that's what the film reminded me of). However, the greatest gift I gave to myself (and maybe him? I owed him a lot), was to be present, fully there through his decline (it was pneumonia brought on by radiation to shrink a tumor in his lung and he was 82). They even gave him a "shot" (a therapeutic overdose) of morphine to help him transition. But he took a nice nap and woke up! Those were the most precious few days of my life, being with him, holding his hand and smiling at each other (he couldn't talk at that point, it was all telepathic). This is hard, Ororo. You don't need me or anyone else to tell me that. But you are there. And that means something to her, your father, your sister, and yourself. Give yourself a pat on the back on a regular basis. Hug your loved ones and pat them on the back, too. This is hard. But it's gold. xo