I sent these texts to a friend a couple years ago and just remembered them after having the same dream AGAIN a few nights ago. Genuinely a horrifying concept that I almost actually wanna see in game.
Please delete if not allowed. My apologies for any potential rule breaking, it is not my intention. I am writing this because I do not know where else to put these feelings.
I (27F) live with my parents, (55F & 58M) and my dad’s mother (8?F, unsure but between 85-87).
For the last 4 years, we have been taking care of my grandmother following my grandfather’s passing. We were repeatedly told by friends and family that “when one goes, the other will follow”, but obviously, four years later, this is not the case.
It has been an exceptionally long road. Due to the fact that my grandfather was a junk collector, we had to completely gut & change his side of the house (duplex/two family home — grandparents lived on one side, my parents, brother (32M) and I on the other.) so that my grandmother would be able to live comfortably. We knew prior to my grandfather’s passing that she had some level of dementia, but due to her & my grandfather’s refusal to see doctors, we did not know just how bad things were until my dad became her POA/proxy.
Her mobility had changed from (poorly/improperly using) a cane, to a walker, to a rollator, which is where we are now. We have remodeled and moved her room into the bigger of the bedrooms and given her her own space, which when we did this (2023, ish) she loved and was overjoyed, claiming she “finally had her own space” after years of living with my grandfather’s junk collection.
We have had home physical therapists come to assist her, but she struggled and made no progress, so ultimately, this was stopped. She has had a few falls over the last few years, and has been admitted to the hospital and given palliative care twice. Each time following palliative care, she was in a nursing home for some weeks before eventually coming home again.
I write this as an exhausted granddaughter that no longer recognizes her grandmother. While she still recognizes me and knows who I am (and I’m grateful for this), I feel like I don’t know her anymore.
Growing up, my grandmother was always meticulously clean and tidy. Now, she showers only once a week when her aid comes to give my parents some relief. (She fights taking a shower every single time. She has to be reminded that she has not washed up in a week, and even then, she dreads the shower.) Her fingernails are disgustingly long and she will not let them be trimmed. I have never experienced misophonia before having meals with my grandmother recently, but seeing her pick food up with her fingers occasionally and hearing the sounds of her eating has filled me with dread for mealtimes. She rarely changes her clothes, and often wears the same sweater and slacks several days in a row, even sleeping in them, despite clean pajamas and other clothes being set out for her to wear.
I have cherished memories with my grandmother. Because our houses are connected, I would “visit” her and my grandfather every night growing up, sitting with them and watching TV. I have small memories of being very young and helping my grandmother water the flowers around the house. Even memories of them driving me to high school when my parents were not around.
But these memories are slowly eroding each time I see how my grandmother is now. I can’t remember clearly what it was like to see her walk unassisted. I can’t remember the times when I would sit and have meals with her when she babysat my brother and I. I’m struggling to hold on to the memories of who my grandmother was before 2022.
Dementia is a terrible disease and it has turned her into a shell. She has no quality of life. She wakes up anywhere between 7 am and 4 pm with no clear indication of when she will get out of bed. After she is given breakfast, she sits in her armchair and stares blankly at the TV until lunch (if applicable). And then she goes back to her chair to stare at the TV until dinner. And then back again until bedtime. Myself, but most often my parents, will sit with her to keep her company, and she tends to cycle through the same few phrases to have some sort of conversation, but most often she will nod off.
I don’t recognize her anymore, and I have been spending less and less time with her as the years have gone on because it feels like each time I see her as she is now, I lose what memories I have of her from the “before times”. I don’t want to look back and remember her the way she is now. I want to remember who she used to be. So, I stay away. But I hate myself for this. I hate that I am so scared of losing the cherished memories that I have. I hate that I am avoiding the woman that helped to raise me, that laughed with me, that saw me in my school plays and watched me graduate high school. I hate that I’ve lost so much of her, and I hate that, in trying to preserve as much of who she used to be as possible, I’m avoiding her.
I feel guilty all the time for not spending more time with her, but the time that I do spend with her hurts in a way that I can’t describe. Often times, I wish she would simply go to sleep, that she would let go and be at peace, for her own sake — and then I feel disgusted for even thinking this.
My whole family is burnt out from caring for her. We’ve thought we were at “the end” twice before. We don’t know when this will be over, but for her sake, and for ours, we pray it’s soon.
We’re exhausted. I miss my grandmother. I miss who she was, and I miss who I was before we started to watch her slip away.