Riding the Dementia Roller Coaster

Dementia caregiving is a never-ending wild ride on an old wooden roller coaster through a funhouse of mirrors in a broken down amusement park.

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I’m still giddy over the improvement since Ma’s gotten the new hearing aid. She’s not going to live any longer, but she has a better quality of life, and I have some of my Ma back.

Come July, I’ll be 68 and Ma will have been living with me for seven years.
If you remember, she’d declared she was going to off herself after two weeks.
She lied.

She’s been living with me since some time in 2017, right after she broke her back. She’s been on, and off, hospice, twice.
She’s been my Coma Mommy and slept for days on end while I did my best to prepare myself emotionally for when she would either not wake up at all or cease to breathe. Cease to be my Mommy.

She will never stop being my Mommy.
She hasn’t been my Mommy for years.

I’m the mommy.
I’m who she is looking for when she asks “Where is my mother?”
When she asks “Where is my son?”
When she asks “Where is she?”

She’s my little monkey. My princess. My stinker. My buddy. My family.
She’s my Mommy.

Except she’s been gone a lot of the time.

Mealtimes

How could I’ve even imagined I’d miss how picky she was about food. She’d refuse food once it was room temperature, but took so long to eat that she couldn’t get through a meal without it turning cold. 

Red plates to spark her appetite.
White plates for contrast, to more easily see the food.
Solid colors otherwise she tried to spear the designs on the plate with her fork.

I videotaped her eating things she liked, evidence for the next time I made whatever it was & she told me it was crap. 

Then she just stopped putting her teeth in.
No one’d who was not a medical professional had ever seen her without her teeth.
The first time I saw her sans dentures, and she didn’t care that I saw her that way, I knew we were on our way down.
That was over a decade ago.

Up, Down, And Back Again

No one told me the way down would be so…slow. 
Or such a roller coaster.

She bounced back from the cancers. Covid was one night of fever and low blood ox. That’s it.  She broke her back—that’s what got her into my house.

Up

Soon after she was walking back and forth—1.5 miles round trip—to the farmer’s market.

Down

Then she wasn’t. She can walk to the bathroom and/or to the commode, with help and a walker and someone behind her to hold her up, and push.

Down

Two years ago she was only awake 3-4 hours a day, not necessarily consecutively.

Up

Now, let’s call it ten hours a day with her eyes wide open.

She hasn’t known who I am for forever.
She frequently thinks I’m a boy, or asks if she only had one son (I’m an only child). I don’t correct her.
Meet them where they are.

This isn’t how I pictured my life at 68. When she moved in, we thought we’d have a year together.

This Way to the Egress

My family believes in the right to choose your exit time and strategy.
When my grandmother overdosed and left a suicide note, Ma called the paramedics. I wondered, why didn’t she have the courage of her convictions? My grandmother had outlived two husbands, was living in her son’s house, had no friends nearby. She was losing her vision and her hearing, could no longer enjoy music or ballet and had no one to play with. She was done.

Nana Helen, flanked by her husband & my dad.

Ma’s been stockpiling pills for ages. Never very drug savvy, she hoarded all pills, mostly a lot of old antibiotics. We read Final Exit together and together, decided Helium was the way to go. Odorless. Untraceable. Painless.

She worried about her claustrophobia. We did a practice run. 

“They all make plans,” an Alzheimer’s Association counselor had said, “but by the time it’s an appropriate response, it’s too late. They’re no longer able to carry it out or even say do it.”

Like my grandmother, her mother-in-law, she’d outlived two husbands, one boyfriend and most of her friends.
She couldn’t  remember anyone’s name.
Couldn’t longer drive. Or remember how to turn the TV on and off.

Is it time, Mom?
No, she said. She worried I’d go to jail for helping her. I didn’t.
I’m the only family outside of two nieces, one 2,000 miles away, the other, one state over, hadn’t called or visit in the years. No one’d think twice about an old woman dying in her sleep.

Maybe the jail thing stopped her.
Maybe she was more afraid of dying than she was of being alive.

Taking that final exit has been an appropriate response for quite a while.  But she can’t answer that question anymore. The answer to any question, even a simple “Do you need the bathroom?” might be anything from “potato?” to “he didn’t say so,” to completely unintelligible sounds that feel like words but are only words on her side of the conversation and I’m left to interpret the rhythm of the sounds, the word salad, and come up with an appropriate response.

Appropriate response. There it is again.

She & I never had the conversation about what I should or shouldn’t do once the Helium was the appropriate response because she was no longer to make an appropriate response. If we had, if she’d said, When I’m gone and can’t answer simple questions, when I don’t know who you are, when I don’t know whether it’s day or night, no longer  feel hunger or thirst, cannot recognize myself in photos, when I can no longer understand the words that’re being said, when the only thing that gets through to me is music, or the feel of the stuffed animals piled on my bed, when I’m calling out “Help”  to strangers on the street and have no idea what I need help with, when that time comes, I want you to do it. The Helium. I want you to open the door so I can leave. 

If she’d said that…

We never had the conversation about that eventuality, the one that’s here now. I like to think if we had, if she’d given her permission before it was too late, that I could’ve done it. I’d carry it with me for the rest of my life, but I’d be able to hold her hand and tell her it’s going to be okay; hold her hand and kiss her forehead, stroke her hair and watch as her breath slowed and she drifted painlessly away.
I could be there. 

I just realized that that, that graf above, was all about me, what I could do, what might make me feel better about her leaving.

But we never did talk about it. 

So instead, I miss her.

There are still random moments I want to call her, the old her.
Anne is a friend who, like Ma was, is tall, slim, with glasses, white hair and a fashion sense. Recently, Anne walked into a meeting room, and I caught her in my peripheral vision, my heart bump-bumped a second, I thought it was Mom.
Then I remembered, Mom isn’t here that way anymore.

She is still here and I miss who she was ten years ago, five years ago, one year ago.

What If

But what if we had?
If we’d had that conversation?
If I’d been able to follow through with my promise to help her leave?

The new hearing aid’s rolled her interaction with the world back a couple of years.
She’s eating more.
She’s playful and laughing again.
She’s chair dancing and saying hello, instead of help, to strangers.

She still drifts off.
Is still unintelligible at times
Sees things we don’t.
But she has joy and quality of life back, for now.
And I have some of my Ma back, for now.

If

For a long while I was waking her 5:30pm to feed her a liquid dinner when she was mostly still asleep—propping her up to a sitting position to prevent choking.

I wondered if I’d become the feeding tube her living will stipulated she didn’t want.

The first time I let her sleep through dinnertime, I felt awful and selfish, but determined not to wake her anymore to feed her at night. To let her body call the shots, not the schedule.

Sometimes I have the courage of my convictions. Sometimes I don’t.

If we’d had that conversation.
If she’d said do this if I get like that.
If I’d been able to follow her wishes.
If she hadn’t accidentally broken that ten-year-old hearing aid.
If I hadn’t said, fuck it, it’s only money and gotten her a new one.
If…

Ma and Douglas the Dog who makes a very fine hat.