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
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.
I’ve been told that dementia changes your personality: if you were a sweet angel you turn into a mean unhappy witch. With my mother it was just the opposite: she turned into a sweet little old lady whereas she had always been a mean unhappy witch. I always used to think the my “real” mother was buried inside this sweet little old lady, screaming to get out.
Sundowners is very frightening — I’m so sorry you had to go through that!
@ghostdancer How did you cope with a mother like that in her mean period of life? And so strange that as dementia progressed she became so sweet. There’s go to be a reason for that, seems to me.
@oswego I didn’t cope for years. Sometime in my 40s, probably as a result of being in Al-Anon, I finally realized there was nothing I could do to change her, or make her love me (in any reasonable resemblance of love.) So I gradually became more and more impervious to her threats and manipulations.
Finally came the day when I had had enough; I got up and walked out. She said “I don’t care if you are mad.” I said, “I’m not mad, I’m just leaving.” And I didn’t contact her for several years. Eventually, the social worker at the elder day center she went to every day contacted me and said my mother wanted to repair the fences. I agreed but I never had much feeling for her after all those years of meanness. She went into a nursing home, and I went once a month to see her until she died. I didn’t mourn her — I was relieved that I no longer had to deal with her.
In her defense, I have to say that she came from a VERY dysfunctional family. Rampant alcoholism on both her mother’s and her father’s side. Both sides of the family lived in the same little town in Kansas so there was an abundance of people to warp her life. Her sister took the opposite road: she was the “normal” one all their lives (and my grandmother delighted in playing one off against the other); my aunt became shrill and bitter after her husband died and she lost her eyesight.
I often wondered how different it might have been had they been born in another era, where counseling and mental health options were available. My aunt once told my mother that she needed psychiatric help and my mother belted her one.
I think the reason their personalities change so much is that their brain cells are being messed with by the dementia/Alzheimer’s.
@ghostdancer What a sad, but poignant story. You somehow got through it all, but were not not able to reconcile with your mother. It was a similar story with me and my father. Even in his last months he could not bring himself to ask forgiveness for the cheated me. I have come a long way in forgiving him because I understand so mymuch better in old age the dynamics that were in play.
So it’s quite understandable how difficult it would have been for you after the way she treated you and others. Forgiveness is one of the hardest things for us humans. I struggle with that all the time. I could write whole essays on the subject, and I might just do that.
bd it’s true your mother needed help, but that apparently was out of the question for her.
@oswego es, I often wonder what she would have been like had she been young in another era when psychiatric help and counseling was readily available with no stigma attached, as it was in her younger days. But of course we’ll never know.
And I’ve never t6hought about forgiving her. I’ve accepted that she was who she was, and why, but it never occurred to me to forgive her. I’ll have to think about that …
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I get a lot of what you experienced with caring for your mother. My mom is still around, and is only 79, but her memory and ability to follow thru with things is slipping. Luckily for now she is able to live on her own, and I am not far away from her. My grandmother made it 94, as did two of my great aunts. But none of them suffered from a traumatic brain injury as a child as my mom did. That has radically changed her personality over the years and not in a good way. On the job I see this sort of thing all of the time, as I am also a paid caregiver. Dementia, as well as physical disabilities caused by age, can definitely be very challenging to family members. Luckily you were able to afford some help caring for your mother. My grandmother had to go into a home because I was living in California at the time and my mom and dad could not care for her at home anymore. But my mom visited her every day to make sure she was being properly cared for. I do not know what will happen with my mom, but at some point she will likely have to go into a home as well. But I do know it’s terrible to watch someone you love get worse off and there is really nothing you can do to stop it.
@schrecken13 The fact that we had such good home-aide/caregivers made a huge difference. I would have had to quit my job for sure without them. But with the help I was able work until I retired at 66.
The ideal situation is when there are loving family members nearby, but families are so spread out now. My sister lives in Seattle. If she had lived here, the job of caregiving would like have been split between us. I have a brother who lives here, and while he called most days to see how Mom was doing, he rarely came over and was of no practical help to me. That will always be a mystery.
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