A Grandmother in a nursing home has a devoted grandson; I tried my best to be a devoted son taking care of my mother in her home in Daydreaming on the Porch

A grandson is someone I will never know, in this life anyway. But when I saw this video clip, I was overcome with as much emotion as I am capable of these days.

https://youtube.com/shorts/jeXQdsPDoaw?si=4qeVemP8lPvDcz0G

It’s been over five years since Mom passed away on January 28, 2020. Not a day goes by when I don’t think of her. I have small framed photos of her in her last years with that beautiful and sweet smile that everyone commented on.

But as I recorded in my Dementia Journal on July 8, 2016, life was beginning to change for both of us as her mind and mental state deteriorated more rapidly. She was 93 and I had been living with her and gradually taking care of all her needs since 2010.

Here is that journal entry. It’s been several years since I have read any of those entries, but that video of the grandson and his grandmother stirred something deep in me because she reminded me of Mom, especially in the ending of that video. The main difference was that the poor woman in the video was in a nursing home that may or may not have provided good care, whereas I was thankfully able to take care of my mother in her home, which she dearly loved. It made all the difference in the world.. She almost never had that lost, vacant and confused look you see so often in skilled care nursing homes and memory facilities. This was in large part because she was surrounded by people who loved her 24/7. I shudder to think how she would have fared elsewhere.

Dementia Journal, July 8, 2016:

You know it’s going to be a rough night when the caregiver for your parent who is leaving after a six hour shift, says to you, “Good luck!”

And so another in a years-long series of nights taking care of my mother began. The difference tonight was that for the first time since I have been doing this full time (January 2010), I was fearful and afraid during my brief visit to Waterfront Park after work and before the caregiver was scheduled to leave at 8 pm.

In the past month, I have noticed a marked change in Mom’s personality and mood shifts. Mostly the sweetest person you’d ever know, she has on several occasions in the past week turned into a bit of a beast — angry, belligerent, lashing out, frustrated to the extreme and trying desperately to make sense of her diminishing world where she can’t remember anything that happened a minute before.

The night before last, it started with not remembering if she had been given supper and criticizing the caregivers for coming and then leaving, when I wasn’t there. Totally irrational. Of course that never happened. How could any son of hers hire such people, she said of the two caregivers who have been with us for years and patiently and lovingly attend to her needs. “They are idiots,” she said, to my growing disbelief. “Are you my son?” she then said to me. “Im getting terrible care.”

After that outburst, and for another hour and a half the questions began and continued until I wanted to pull my hair out. There was no way to avoid answering. If I did, all kinds of rather mean accusations would follow. “Who are my children?” “Where do they live?” “What happened to my sisters?” “Where are they now?” “Am I in Charleston?” “Why did we sell the house in New Orleans?” “Am I well off financially?”

She has no idea whether her sisters, the last of whom passed away in 2003, are still alive or whether she has seen them yesterday. The questions continued for an hour and a half more until it all stopped and she was quiet and asleep finally by 1 am. A half a milligram of a sedative was imperative, as much as I hate for her to take them. She will generally sleep much of the next day.

The frightening thing is that whereas these kinds of manic, desperate, question-filled nights might happen once a month in the past, they now occur several times a week. And, the worst of it is late at night generally, but also just after sundown. I’m convinced something unconscious about the night closing in makes her fearful and insecure. I don’t hear reports of this kind of behavior from the caregivers when I am at work. It seems to fall on me to bear the brunt of these “sundowner” manic episodes of dementia. The other night I was almost in tears. I was beside myself. Nothing seemed to settle her mind. Finally, I called my sister in Seattle at 1 am and she helped her calm down just enough for me to continue to cope with the situation until she finally went to sleep. My mother and sister were very close.

People might say, “Why don’t you hire someone at night?” We can’t afford it. We’d totally go broke. The long-term insurance covers most of the day, early evening and weekend caregivers, but no more. There is a set amount per day, which has been a lifesaver and has enabled me to hire good people and continue working.

Others might suggest that I consider at last putting her in memory care. . I can’t bear the thought, but for the first time I am really considering the “what ifs” . Could I find a decent, well-run and compassionate place? Could I NOT be taking care of her? Would my nights be filled with worry about whether she was being neglected or abused? All kinds of unbearable thoughts ensue.

Tonight when I got her in bed and the ranting and questions continued, and it looked like I was in for another intolerable night, I tred very deliberately to not raise my voice, to stay patent and calm, and to show as much love as I could. And it appeared to work. Either that or she was too exhausted to keep pressing me with questions. “I’m trying to get things straight in my mind. I need to ask you one more question,” she might say. The only problem is she didn’t remember the answer I just gave her, and so: Questions. Answers. Repeat again.

The morning after the recent terrible night, she was her “usual” self. Sweet. Quiet. A beautiful smile. Asking if it was going to be a pretty day.

“What’s for breakfast? “She inquired..

“I’m making you an omelet with bacon, toast, orange juice and coffee. How does that sound?”

“Ooh, great,” she replied enthusiastically, almost with relish. Mom always loved breakfast more than any other meal, at least it seemed to me then. And I do as well.

“Guess who’s coming this morning?” I asked.

“Judy“ she said.

“Yes!”

“I’m so glad.”

I was, too. (You cannot imagine just how glad. Mom loved the caregivers, and they were like family.)

The door opened and my relief was there. How very glad I was to see her. I proceeded to take mom’s blood sugar, give her insulin, take vitals and fix breakfast after Judy got her up and ready for her day.

Mom didn’t remember a thing from the night before. But I sure did.

“Are you my son?”

“Yes, Mom,” I replied wearily and with sadness. The person Mom used to be is no longer. I knew that before, but it’s just been this week when the reality of it all truly hit home with a finality that seemed to close a lot of doors on the past, and make me very anxious about what lay ahead.

But before I could dwell on any of that, I had to be out the door and on my way to work. What a relief work was. But oh so fleeting and temporary. My work days fly by very quickly now.

A friend in my writing community wrote this comment to me after she had read the Dementia Journal entry.

HUGS. Sundowner’s Syndrome is very real. Psychologist son says the growing belief is that it is the brain trying to put order to thoughts (much like we do in dreams), so constant rearranging of dresser drawers, endless questions, etc. is their way of coping. I feel for you, though. Every time I had to tell Mom that her sister had died a few years earlier, I had to see her relive that sorrow. Near the end, I just told her that Aunt Emily would be by for a visit soon. One man with the beginning stages told me it was like looking through a lace curtain: some things are clear, other things are kind of clear, and still others are just blanks.
I found a good place for Mom. Try looking for a facility that goes for “Eden Care”. Non-profits are usually best. Affordability: get your mom on medicaid if she qualifies. And yes, the expense is astronomical. Medicaid will open a few more doors.

I replied:

Thank you for the wise comments. I can tell you’ve “been there.” It’s just about every evening with sundowner syndrome now. Tonight all Mom could talk about was how her mind is normal again and she’s getting back to her old self. In some ways she’s right. Her mind is fiercely struggling for what once was and some semblance of a return to normalcy. In many ways she does know only too well what’s going on. That’s why it’s doubly hard even contemplating putting her in some facility. I’m not even sure how this is even done without her consent. I know she would resist a move every step of the way. As unbearable at times as the status quo is getting, it still seems better than the alternatives, including me lying in bed awake every night worrying about her if she was not here.