Tag: Dementia

The Guilt ™

A moment to get you up to speed…
Last Wednesday, I got one of those calls you never want to receive. My mother and brother were having dinner when she suddenly lost the ability to communicate, slumped to the side, and couldn’t move. EMS were called and she was transported to the hospital where they discovered, through imaging, that she suffered an acute stroke after having several TIAs and mild strokes that likely happened with no signs or symptoms. She spent five days in the hospital before she was transferred to a subacute care facility where she is currently undergoing rehabilitation with physical, occupational and speech therapists to get stronger. But that’s where everything starts to get hedgy.

Mom has been declining for a while now. It has been a series of small changes – an unsteady gait, forgetting what day it is, loss of fine motor skills, spilling food… Then the changes started to grow in intensity. We started a notebook with everyone’s name in it – family and friends – who is still alive and who died and when, because she couldn’t remember. Then she couldn’t button her nightgowns by herself. Or wash herself. I had to do it for her– taking soiled washcloths away before she forgot we already washed her face and started to do it again.

This once tenacious, fastidious, organized powerhouse of a woman who took care of everyone around her – cleaning her mother-in-law’s house, making sure her father’s kitchen was stocked with food that wasn’t expired 10 years ago, doing hair and make up for my friends at Notre Dame for theater productions when I was overseas for a full year, taking care of her great aunts when they got too old to drive—had changed before our eyes. She started falling and not being able to pick herself back up. She couldn’t sleep in the bed because she was too weak to be able to get into It without help, then would slide out  of it onto the floor. The point where my brother and I were unable to take care of her came fast and mercilessly—seemingly out of nowhere. Although that was just the shock making me forget the pathway that led up to this point. It didn’t come out of nowhere – I just hoped it would never come to this.

And now it has.
And the guilt is permeating every corner of my mind into which it can possibly seep.

Yesterday, I spent the day in the hospital with Mom as they prepped her to go to rehab. The closer we got to go time, the more upset and anxious and angry she got. “Why can’t I just go home with you?” “Why are you sending me somewhere else?” “I can just go back to my room at the house, there’s no need for me to go to rehab.” And then the tearful “Why are you doing this to me?” The transport team took her and Mike tagged in at the rehab where he was waiting with her clothes, toiletries, and things we had prepped for her to have there. And as the day went on, the sundowning began. “Where am I? What am I doing here? You’re not leaving me here” she said, as her roommate, who I have not-so-lovingly dubbed “Poopy Patricia” decided to have a bowel movement in her bed that wafted into the hallway, attracting a nurse, who did everything she could not to lose her mind, because this lady is neither incontinent nor non-ambulatory. This is apparently a behavioral issue that is ongoing. Lucky Mom. When the nurse came to tell Mike he could leave, he said goodbye and that he would see her the next day, but Mom was distraught. She was not staying. As he walked down the hallway towards the front door, her turned around to find her waddling, with no cane or walker, after him. At this point, she had a full-melt down, resulting in a nurse confining her to a chair as my poor brother told her he was just going out to the car to get something so he could leave for the night.

How do you process something like this?
Leaving your much-loved, wonderful mother who changed your diapers
Who pushed you on the swings,
Who kissed your booboos,
Who took to you your first New Kids on the Block concert,
Who let your friends stay overnight and act like lunatics until all hours of the morning,
Who held your hand when your first boyfriend broke up with you,
Who spoke for you when you had no voice,
Who stood up for you when you felt utterly alone,
Who was proud of you even when you felt like a useless loser.
Leaving in her a place she doesn’t know.
Frightened.
Sad.
Surrounded by strangers that she doesn’t understand can give her the care she needs better than you can.

And you feel like a terrible person because you couldn’t provide that care.
You wanted to.
You wanted to be a person who wasn’t going to send her mother to a “facility”—even though you never thought less of others who needed to do that.
You just thought it wouldn’t be your family’s story.
That you’d pay her back for all of the things she has so selflessly done and sacrificed for you.
It feels like a betrayal.
No matter how many people say it’s not.
Or that you can’t beat yourself up.
Or that you have to think of what’s best for her now that she can’t do that for herself.
You have to take it one step at a time, one day at a time.

All those things are true. And appreciated.
I have amazing people on my side, for whom I am intensely grateful.
But the first stage of this process I’m going through is GUILT.
It will eventually change into something else, but for now, my heart is broken.
And it’ll just have to be for a bit.
Sometimes things have to break to make room for what’s coming next.

Late Night Transmission

January 16, 2026
3:25am
Late Night Transmission

My mother is gone.
She’s not dead. We’re still lucky enough to have her.
Her body is here, in the room with me.
She is breathing. She is talking,
Have mercy, she is talking.
Endlessly talking.
But she’s not here. Alzheimer’s is a waging a battle we can’t see. One she’s fighting by herself even though she is surrounded with love and support.
It’s taking over and we can’t do a thing about it.
We sit quietly and listen.
There are ashtrays in the ceiling. And they’re dropping burning cigarettes onto the floor, the TV, the curtain between her room and the hallway.
She just knows everything is on fire, but no one is doing anything.
She keeps talking about the little girl in the green dress who keeps coming in to stare at her. (It’s just the CNA checking to make sure she’s okay)
About the grippy socks that are strangling her feet.
(They’re not)
She wants me to get the scissors and cut them off of her.
(I took them off. They’re not there. She has her leg straight up in the air to show me the strangling socks. I say, “look – no socks. There are your feet.” She frowns. “Fine. Go ahead and lie to me. I know what I know.”)
This happens over and over and over again.
“It’s normal, the sundowning” the night nurse says.
“It’s anything but,” I think, but I smile and nod.

She keeps calling for my brother.
Who is at home.
Hopefully in bed, sleeping soundly, for the first time in weeks – months.
He has spent that time spiraling into a torrent of anxiety while being the primary care giver.
Doing the best he can in an impossible situation.
Changing diapers.
Cleaning up after episodes of incontinence.
Cleaning up spilled food.
Endless laundry.
Putting barrier cream and powder on sores and rashes.
Picking her up off the floor at the cost of his spine and sanity.

Then she calls for my dad.
Who has been dead since 2013, shattering our world as he laid on the dining room floor, twenty-two days after he retired.
They would have been married 58 years this month.
She doesn’t remember he’s gone.
I sit next to her in the chair and hold her hand and look at her.
I explain what happened.
“Did he die today?” she asks, shaken to her core.
But all information is new information to her.
She doesn’t know where she is.
She thinks she wore her nightgown to work.
Her clarity ebbs and flows. Shifts and shakes.
She remembers she used to go with her father when he would fix people’s TV sets in the 1950s.
And that he used to whistle when we came down the steps.
“You remember that, Carolyn, when he would whistle at us when we came down for church?”
I don’t disagree. It just upsets her when I try to correct her.
So I don’t.
“He was a character,’ I say. Because he was.

She falls asleep for a little while.
I should try to sleep, too, but I can’t.
There’s a tension headache poking around the edges of the messy bun that’s falling down.
I know she’ll be awake in an hour.
The same pattern repeated.
If the woman down the hall who is screaming, weeping, and begging to be allowed to leave doesn’t wake her – that is—

How the hell does she not hear that?

She’s having a conversation with someone in her sleep, now.
Something about a wheel and needing a key.
Spinning around to see what you get.
There’s pointing involved.
A giggle.
Then the telltale snore.
She’s out again.

My mother was a formidable woman.
Sharp as a tack.
Smart as a whip.
Curious.
Interested.
Engaged.
A voracious reader.
A proponent of justice.
The best kind of enthusiastic helper.
She did everyone’s hair and sewed everyone’s costumes.
She opened her house to our friends.
She made endless pancakes and bacon and cinnamon rolls for people who stayed over.
She was game to play beer pong with the college kids who were always invading her house, in her basement, in her pool.
She made the ultimate home and was so proud when people she didn’t give birth to called her “Mama Riley”- which happened a lot.
She was no nonsense.
She pulled no punches.
And, amazingly, had a beautiful knack of realizing that she wasn’t everyone’s cup of tea,
Yet gave precisely zero fucks.
God, she was a real one.
Brilliant.
I hope some day I have the courage to be more like her.

Never in a million years would I have thought it would come to this.
That this would happen to her.
To us.
Then again, no one ever does see it coming.
And if you did, how would you prepare?
There’s no way to ready yourself for this—
This conscious loss.
This gut wrenching feeling of helplessness.

But I’m not helpless.

It’s my job to be her historian now.
To remember who she was and remind her of those things, even if she can’t grasp them.
It’s going to hurt.
It already does.
So much that it feels like the wind is knocked out of me.
But that’s just the love.
And that’s not gone.