Does Frustration + Sleep Deprivation = Shaken Baby / Elder Abuse?

It's so easy to hurt a vulnerable person you love

This wasn’t an easy write. If it touches you, click the heart ❤️ and let me know I’m not screaming into the void.

Look for the link to my new publication, The Dirtygirl Diaries, at the very end. An episodic memoir, this is a coming-of-age love story between a girl, a bottomless bottle of vodka, and the most infamous street corner in the world—Times Square in the 70s & 80s. There will be glitter. There will be blood. There will also be hope. A new episode & soundtrack every Friday.

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I understand shaken baby syndrome. More than just the definition, rather, I can see how that could happen. Some days it must be so easy for a mother to kill her child, without malice aforethought, that I’m surprised it doesn’t happen more often.

I’m also amazed that the statistics of nursing home murders aren’t higher even considering under-reporting and deaths erroneously attributed to natural causes as givens, it’s amazing the numbers aren’t higher. I get the need for both Child and Adult Protective Services.¹ ²

It’s not physically hard to kill someone less powerful than you, so easy to be driven to that when that someone is completely dependent and vulnerable in that way that elders, infants and children are.

“Elder abuse tragically impacts many adults aged 60 and older in New York State. It is estimated that 300,000 older New Yorkers are victimized annually.” - NYS Office for the Aging

When caring for another living being, especially a family member, love will only take you so far. After that you—I—have to rely on good home training as the old folks say. On having a conscience and learning to walk away. A long time ago, I contributed to an anthology, Bearing Life — Women’s Writing About Childlessness — I’m the “and many others” in the book description. More recently, here on Substack, again I wrote about being childless by choice.

When having babies was possible, my temper was violent beyond my control.

I’m light years away from who I was when I made the decision not to have children. I’m sober a long time, decades even. Decades. As ridiculous as that sounds to me sometimes, I’m officially sober longer than I was drunk and I was drunk for a pretty long time. In sobriety, I learned to hit the pause button between my feelings and my actions. That’s huge, if that’s all I got, it would be more than enough. I’m cured. Right?

Yet, left with my mother for three days over the holidays…

I gave our weekday aide a well-deserved week off. I’m extraordinarily lucky and privileged to have help, every day from 9am - 5pm. I know many, many caregivers don’t have that option, or only have other family members, some of which are reliable, many of whom are not.

I used to post a lot of cute and quirky anecdotes and photos of Mom on Facebook; she was “Big Edie” to my “Little Edie”³ and had a bit of a following. On her 90th birthday, she received more than 75 cards (many, handmade, see below), flowers, balloons and gifts, most from from people who’d never actually met her. They’d just seen or read of her cuteness and quirkiness, of our totally enmeshed relationship.

What I’d been posting wasn’t an full representation of our truth. I always looked good and she always seemed adorable; I’d been leaving out most of the difficult stuff that was coming up as her dementia progressed and harder and harder decisions had to be made. It’s one of the reasons I started this ‘stack, to address our relationship as it changed: the good, the bad and the ugly.

As dementia ekes along, frequently the good begins to fade away, and you’re left with a lot of the bad and the ugly.

We’ve been very lucky, some dementia patients have complete personality changes, becoming violent and combative. The stats on that range wildly—from 5-10% (CNN Health) to 96% (National Institutes of Health). She was diagnosed twelve years ago and we’re just starting to see the difficult changes now, but compared to what it could be, we’re getting off easy. By we, I mean me.

My own lack of sleep is the root of the problem

Her dementia manifests in many ways, one of which is a completely unpredictable and changing sleep schedule, from sleeping for days to awake for days to getting up multiple times in the middle of the night to pee, or just trying to escape, believing she can still walk on her own and attempting to climb over the guard rails on the hospital bed. With an infant—if you can stand the noise—maybe you let them cry themselves into exhaustion, but Mom is a serious fall risk.

Also, she’s very loud.
And persistent.

Grunting and groaning, she struggles to sit up, or to remove her clothes, or with the netting that prevents her sliding down to the end and escaping that way. She cries out and begs, “Please, I can’t open it, oh please, please,” over and over.

Her need is always real, needing the commode has the same urgency as wanting to sit up with someone next to her on the bed for an hour.

Sometimes, she’s physically exhausted, but her dementia brain is still firing, like an electric current turning on different neurons and synapses moment after moment, or a lunatic running through your house, flipping lights on & off and on again with no apparent reason. It doesn’t allow her to rest. She talks in her sleep, acts things out, and so she’s getting up and going someplace in her sleep, her half-sleep. Lorazepam acts like a large dose of liquid Valium; I’m jealous of immediate release of stress and anxiety, of the sleep she gets after a dose.

You can almost see it turn her brain off. How nice must that be?

But, I keep the chemical management of her behaviors to a minimum, choosing not to over-medicate for my own convenience, with the drugs I fantasize about using myself. I’d be no better than a nursing home, dosing her to keep her quiet, to make my life easier without consideration for hers. I don’t want to be Nurse Ratched to her Randall Patrick McMurphy. I don’t want to do that, to be that.

What I really want to say is…

Sometimes, I’m afraid of hurting my mother.

When I’m sleep-deprived, which I always am.
When she continues escaping while I’m trying to help, pushing me away.
When she doesn’t even see me there.
When she refuses to, or believes she cannot, stand or walk and tries to sit with nothing under her but air and floor.
When she refuses to get off the commode or toilet, sitting for up to two hours, falling asleep, pull-ups around her ankles, legs crossed.
When she crushes my hand between her butt and the toilet seat as I try to clean her after a bowel movement, always unaware she has (moved her bowels that is, the hand crushing she’s fully aware of).
When she refuses this, or that; when stuck in that place where the answer to everything and anything is no, no, no, help, no, oh please, how dare you, no.

I have slapped my mother in the face, attempting to bring her back to this plane, or to wake her more fully, to bring her attention to me and the attempt at standing or walking or not sitting where there is nothing to sit on.

I have to stop myself from smacking her hands as she fiddles with the blankets or holds tight to a stuffed animals as I’m trying to get her out of bed, on to the commode, fed, dressed, whatever.

Sometimes when she’s on the toilet, I leave the room for a minute or so, putter around the kitchen putting dishes away or setting up for the next meal because I need to get away. I listen for her at the same time, worried she will again forget she can’t walk and try to get up herself. She hasn’t done it yet.

Life is full of yets. I haven’t hurt her yet.

Yet.

I recently heard of using the 10-10-10 rule when infant care becomes overwhelming.

• Have a 10-minute talk with someone who listens well

• Stay 10 feet away until you feel calm.

• Take a 10-minute break & focus on something else

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There’s my wanting to keep her safe, from me.
There is also my not wanting this to be the way things end, not wanting these to be my memories of my life caring for mom. I don’t want to remember her like this, and I don’t want to remember myself like this either.

It was 2 am when I started this and she’d already been up twice. I’m chugging cup after giant cup of Cafe Bustelo as I write. I will stay up until 5am, then go back to sleep for two hours.

Who I was when I decided not to have children, that anger and frustration that would have let me hurt an infant, is still there. Drunken bouts and hangovers may be gone, but I’m still vulnerable to sleep deprivation, self-pity, and exhaustion.

Thank goodness I’m sober; thank goodness for the biker I met in a bar who took me to my first meeting. I couldn’t have done any of this if I wasn’t sober, hadn’t spent years in church basements & smokey coffee shops & diners. Being sober taught me about taking time to pause and the grace to know (sometimes) when to step away. It reminds me to nap if I need to, not to let myself get to hungry, angry, lonely or tired (aka halt). I’m rarely fully in halt, but that “OR” is there for a reason. Any one of those can be a trigger, any combination, a double whammy.

I never think I’m lonely. An only child and loud introvert, I enjoy solitude, something I haven’t had much of lately. I need it to recharge. Getting out of the house on the weekend after Christmas, spending it with friends, sleeping in on that Sunday and Monday put things back in perspective.

I feel human again.

If companionship & sleep made me human again, I was lonely and tired without knowing it. If the solution works, you probably have the problem. I’m human. I’m tired.

Watching Mom become someone harder to love is painful.

I’m angry at her for changing, for not dying while she was still adorable. She has no control over any of it, any more than I do. We are powerless over her disease, her progression. She is even more helpless in her world; I’m sure that’s what’s behind her fighting back when her personal space is invaded. For Mom, it’s not help, it’s an invasion. Her “No” is a declaration of independence, of self, of control in a world where she has none.

I can’t always remember those things when it would do the most good to.

I may powerless in the bigger scheme of things, but she is even more so, virtually defenseless and confused. There is no solid ground in which to get a good footing for someone in advanced dementia. I remind myself, when I can, Big protects Little. And sometimes, the who she needs protecting from, is me. And I leave the room, do the dishes, prepare things for the morning, or call a friend, or write to remind myself who we are, individually and together.

1. NYS resources can be found here: https://aging.ny.gov/programs/elder-abuse

2. National resources here: https://ncea.acl.gov/suspectabuse#gsc.tab=0

3. Referencing the Edith Bouvier Beales of Grey Gardens fame.

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