"You're so Lucky. You love your mother...."

A diagnosis took an eternity; she may live forever. Could I do this if I didn't?

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If you’re new or haven’t been paying attention, I take care of my Ma.

I have no partner, no kids, no siblings. After breaking her back at 88 years old, shortly after my 61st birthday, Mom came to live with me and moved into the one bedroom of my one-bedroom apartment in Queens, NY. I’d bought this place because of that beautiful bedroom and the expansive sky view from the aforementioned beautiful bedroom. That’s hers now, has been for seven years. I live in the living room, which, maybe is the way things were meant to be, it is, after all, called the living room and has the same great view.

I can track her misdiagnosed memory loss starting in 2008 when she took herself to a doctor because she began noticing it. They said CHRONIC MICROVASCULAR ISCHEMIC DISEASE, complications of which are: stroke, dementia, cognitive decline, and falls. Following that visit, she started telling everyone she had Alzheimer’s. The doctor’s didn’t say that, but looking back, she knew and they didn’t.

The silverware drawer was “the place we keep the things we eat with.”

In 2009, an MRI found plaques in her brain, and noted “possible INTRACRANIAL ATHEROMATOUS DISEASE,” aka INTRACRANIAL ATHEROSCLEROSIS, with "Irritability found on L temporal lobe area” The functions of the left temporal lobe include low-level perception, comprehension, naming, and verbal memory.

She knew.

At first they blamed the forgetting and confusion on DEPRESSION. Then, DEHYDRATION. In 2012, a neurologist pronounced it MILD SHORT TERM MEMORY LOSS. Later that year, they called it MILD COGNITIVE IMPAIRMENT.

A retired bookkeeper and business owner, bills were going unpaid, or being paid multiple times.

In 2015, they posited maybe she had MICRO VASCULAR DISEASE. What is that you ask? It’s problems with tiny blood vessels in the heart & brain, and can contribute to angina, heart attack, stroke, and dementia.

Still, only Ma was saying dementia or Alzheimer’s. Most doctors were still blaming everything on depression and her mood.

Then, her vagina atrophied, and fell out.
Who wouldn’t be in a mood if their vagina fell out¹?

By 2016, she was scoring 20/30 in the MMSE², had been in few scrapes with the car and more than once found herself sitting in her car in a parking lot with no idea how to start the car. She agreed to let me take the car keys—Thank you, sweet cheeses —get hearing aids, and began monthly injections in her left eye because the black spot she’d been thinking of as a buddy—and never mentioned to anyone—was wet Macular Degeneration — she was losing her sight. Doctors were now calling it PRIMARY PROGRESSIVE APHASIA.

When the stove caught fire, setting off the smoke alarm, she moved to another room because she didn’t know what that noise was, but it was annoying.

In 2018, when she hurt her back—a local doctor diagnosed her with TRAUMATIC SCIATICA and DEHYDRATION. It took four trips to the ER before she was finally admitted for a broken back. Those doctors decided she didn’t have Aphasia or Dementia, but ANOMIA. The full name for Anomia is Anomic Aphasia. Aphasia. It’s a type of aphasia where individuals struggle to retrieve and express the words.

Anomia. Aphasia. Primary Progressive Aphasia. Mild Cognitive Impairment. Mild Short Term Memory Loss. Intracranial Atheromatous Disease. Depression. Dehydration. Chronic Microvascular Ischemic Disease. Microvascular Disease. Anxiety.

At this point, four ambulances, four ER visits, several roommate and room changes in the hospital, as if hospital living isn’t confusing enough with the lights on all the time and people coming in, not introducing themselves, taking vitals and bloods then leaving—you have no idea what’s day and what’s night—it piled on exacerbating whatever the hell they wanted to call it. I no longer gave a fiddler’s fart what the doctors were calling it.

She knew.
I knew.
She had a broken back.
She was going blind, deaf, had a vagina that wouldn’t stay put, and she had dementia.

Since she’s moved in with me, she’s fallen, gotten Covid and pneumonia, been on—and off—hospice twice. We called her Coma Mommy when she was sleeping for days, eating practically nothing, and we readied ourselves to say goodbye. A few times.

We prepaid the cremation.

It’s been the slowest descent, especially considering when she moved in she said she was only staying for two weeks, and then she was outta here. And now, with a new hearing aid, she’s back to who she was a few years ago.

Silly, engaged, playful, awake.
Still, demented & crazy as a shithouse rat, but happy & polite.
She says her Thank yous, offers you some of whatever she’s eating or drinking, covers her mouth when she sneezes & sometimes excuses herself when she burps.

Farts, however, always surprise her.
But they always have.

That was all about her. Let’s talk about me.

I’m lucky. I’ve enjoyed my mother’s company most of my sober life.
We’ve kept each other’s secrets.
She was a frugal & clever Depression era baby; she can afford private aides.
One day, I’ll pack her cremains in a silver cocktail shaker & tote her everywhere.

A friend recently commented how lucky I am that I love my mother. She said “I'll never feel that way about my mother and I find that heartbreaking for both of us.”

I do, too. But, it happens a lot.

We’re Not All Lucky Enough to Like the One We’re With

Years ago, H, a friend in a caregiver support group said, “You like your mother, don’t you?” I did. I do. Another only child, he’d found himself caring for parents he’d hoped to never have to see again after he’d left home.

A third friend, J, is dealing with caring for a father who has always been difficult, siblings who won’t cooperate or take necessary actions and a step mother who is driving her crazy.

M is one of the most gentle people in the world; she moved 3,000 to live with & care for her mother with dementia. Her mother, has almost no income, savings or long-term care insurance; has physically attacked caregivers and thrown their belongings into the street. M’s mentally ill sister lives in their garage.

What if my Father had Needed the Care?

New resentments piling up on top of old ones, caring for someone who never appeared to care for me when I needed it? Ignoring that complicated & not fully resolved emotional history, just the idea of having to care for a parent of a different gender? It’s one thing to parent a parent of the same gender, to mother your mother. But to mother a father who came of age at a time when men didn’t cry, were supposed to be strong, were nothing if they weren’t the boss?

I guess I’d hire someone to help with toileting and showering. What about the middle of the night if he needed to urinate? If he soiled himself? When the aides can’t come in? I don’t even like the image in my brain of holding my father’s penis so he can pee, but it happens and when it did, could I?

He died 25 years ago, but he’d been a big, broad, and heavy man. Too large to fit comfortably onto the toilet of my first apartment, the toilet squeezed between the wall and a claw foot tub on a riser.

Mom weighs less than 100 lbs, probably less than 90 lbs now, she’s shrunken from 5’9” to 5’4” and I can rock her in my lap if I want to.

I’d like to think I could show up if I didn’t like her, if she was combative, if she was my father, but I don’t know that.

I’ve let some of my freedom be subsumed with caring for someone I love who doesn’t know who I am. Sometimes, I get annoyed, overwhelmed, or overtired.

But, I wake to the sound of her laughing with her invisible friends.
I am lucky.

If this moved you, please share it with your people, restack it, comment, tell me what you think. Talk to me.

1. Technically, that’s a vaginal or uterine prolapse and you can have a pessary inserted to keep it in place.

2. The Mini Mental Status Exam is an in-office screener for cognition. The maximum score is 30 points. 20–24 suggests mild dementia, 13–20 suggests moderate dementia, and <12 indicates severe dementia. A person with Alzheimer’s declines about 2 to 4 points each year.