Managing a chronic disease is always a challenge. Managing one for a loved one can be even more of a challenge. And when that disease is Alzheimer’s, it’s even more challenging. I note all of this not really for sympathy, as that won’t do anyone much good. I note this because I want people to understand what this disease is really like.
I want people to know the suffering that goes on, because so many people think it’s just “memories go away, then they become vegetables, then they die”. It isn’t like that at all.
Every single case is slightly different, obviously. What happens to one patient with the disease doesn’t always happen to another. But it can happen. And when I started this journey with my family in 2023, none of us knew this was even a possibility.
Yesterday evening, my grandmother could not find her house keys. This was because last week, we had a long discussion with her. After her most recent seizure, everyone – including her – agreed that she should not be walking outside alone. It is too dangerous. So, we moved her keys from where she used to have them, to a different place. That way, when she went to look for them, she would remember that she needs to have one of us come with her.
Of course that didn’t happen, because Alzheimer’s is a memory disease, so she had no memory of why they weren’t there, only that they weren’t there. We tried to calmly explain to her what happened, and she threatened to hurt herself on purpose. “If you’re going to take away my keys because you’re afraid I will be hurt, then I will make sure I am hurt right here and now.”
She then proceeded to call my mum a bunch of horrible names and slurs. I couldn’t even take it any more. I had to go to Petco to buy cat food and when I arrived, I slammed the car door so hard it made an echo through the parking lot, just out of frustration at the situation.
The most aggravating thing is that I know it isn’t her fault. It’s the disease. But the grandmother I knew, the one who taught me about history, the one who guided me with photography and writing, the one who sat across from the table at gatherings, is gone.
And what she has been replaced with, I don’t even recognise.
I continue to hope and pray that we will find a facility where she can be more comfortable. I’m really hopeful that there is one around here that will be peaceful, understanding, and provide her with activities that would keep her occupied and hopefully help her find some happiness and comfort even through the process of this terrible disease.
But I don’t know if such a place exists, and even if it does, I don’t know that they will take state assistance – and if not, we simply wouldn’t be able to afford it.
Uber went pretty well last night. I even wrote a bit of Arc 13. But none of that matters to me right now. My heart isn’t in any of this. It’s barely even in my Library work. If this continues, we are really going to need a respite, though I don’t know how that could work. There’s nobody else that can really care for her.
People keep talking to me about their regrets of the past. And I feel like the biggest regret I have would be calling the paramedics back in October during the first set of seizures, which turned out to be not seizures at all, but a heart disorder. Had I not done that, she would have not had the pacemaker installed. And without the pacemaker, well…
She would have passed on peacefully, without suffering the decline she is presently facing. She is terrified of everything now, and out of that fear, she is angry at everyone. She doesn’t live, she only exists. And it feels absolutely miserable to know that there’s nothing that can be done to make any of this better. This is truly one of the cruelest diseases I know.
And I’m at a loss, dear reader.
Not just a loss of what to do. There isn’t much to do. Continuing to converse with the doctor openly and honestly, and trying different medical interventions where appropriate, is about the only thing that can be done in that sense.
But I’m at a loss of how to do. How to act. How to feel. How to make this better for anyone. I certainly can’t make it much better for my grandmother, but I’m thinking about the rest of my family going through this as well.
It’s a rhetorical question for which I know there is no answer.
But it’s still what increasingly weighs on my mind, every single day.
All we can do is hope her remaining time isn’t too painful…… Hang in there.