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The state of things
4 years ago
Well. It's been two months. Guess I should say something. Caution, discussion of death, dying and dementia ahead.
I lost my dad to complications from kidney cancer on January 24th. Massive pulmonary effusion, in a coma for a week and then a slow death in hospice when he was too weak for surgery, it just built up again.
So uh. I don't know how I feel right now. Vacillating between depressed and forgetting anything happened. I mourned for him while he was in a coma, sobbed as I drove to the hospital to play him familiar music to help him wake up. I thought he never would. The EMTs performed CPR for 15 minutes before finding a pulse, and I knew nobody ever comes out of something like that quite the same. But he did, with only minor memory loss. But then to be told after all that that there's nothing we can do, we'll just set him up at home with a hospital bed and an oxygen concentrator and make him comfortable ... how do I even react to that?
So I kind of didn't. I'd already cried all I could, there was nothing left. Just a dull feeling that, oh yeah, he's not here anymore. We can't discuss the news in the morning, or talk about something we watched on Youtube, or what's playing on Svengoolie next Saturday. There was just nothing.
But I had some hope for the future. I've more or less been a de-facto caregiver for 14 years, ever since his initial diagnosis in 2007. My entire adult life I've been here, providing morale support, driving him to his appointments, going with him to support meetings. I could be free now. Maybe I could crawl out of the mental and psychological slump I've stewed in for so long.
Except ...
My dad's mother. She's been slowly sinking into dementia for years now, but has managed to be mostly independent. She's lived with us for over 30 years, and aside from giving up driving she's pretty much lived like she always had, up until about a month before dad fell into a coma when she injured her hip. That was it, that was all it took, she went from mostly functional to bedridden and 24/7 care overnight. Difficult, difficult 24/7 care. Stumbling on a cane because she'd rather die than use a walker, falling at least once a week, complaining that her meals are too large and then stumbling to the kitchen to eat five bananas a day. Her hip has long since healed, she doesn't fall anymore, but this is her life now and nothing will change her notion of that. Refuses to dress, refuses to shower, refuses to do literally anything except lay in bed. Mom and I can't go anywhere or do anything because the instant one of us leaves she'll stumble out in a half panic wondering where "everyone" is. I don't know what she'd do if we both left for more than a few minutes, we'd probably find her collapsed on the street in her night gown or something.
And we've tried getting help. We talked to her doctor over a video call. Nothing I can do, he said, unless I can see her in person. And even without Covid restrictions that would never happen. But he'll get in touch with someone that can help! Well, that never happened either. We talked to one of my dad's hospice nurses about the situation. Sure, I'll see what I can do and have someone get in touch with you! That was two months ago. We get tired of waiting, we call around, we see what's available, finally get in touch with an agency, and they at last send ... a caregiver, once a week for four hours, to clean the house. That's it. no nurses, no health care, nothing but someone who can be here for a couple hours a week so we can run errands. Someone who can beg grandma to take a shower and fail, but can at least giver her a bath in bed and somewhat mitigate the constant sour BO smell that lingers on this this side of the house.
So. That's it. That's where I stand. I've had a few people asking for commissions lately via notes. I was never much of a commission-taker, I'm especially not now, but I'm doing what I can. As long as I can distract myself and forget I can sort of power through, but that's not always easy when my grandmother tells me she wants to die and that she wants me to help her do so.
TL;DR dad died grandma's crazy
I lost my dad to complications from kidney cancer on January 24th. Massive pulmonary effusion, in a coma for a week and then a slow death in hospice when he was too weak for surgery, it just built up again.
So uh. I don't know how I feel right now. Vacillating between depressed and forgetting anything happened. I mourned for him while he was in a coma, sobbed as I drove to the hospital to play him familiar music to help him wake up. I thought he never would. The EMTs performed CPR for 15 minutes before finding a pulse, and I knew nobody ever comes out of something like that quite the same. But he did, with only minor memory loss. But then to be told after all that that there's nothing we can do, we'll just set him up at home with a hospital bed and an oxygen concentrator and make him comfortable ... how do I even react to that?
So I kind of didn't. I'd already cried all I could, there was nothing left. Just a dull feeling that, oh yeah, he's not here anymore. We can't discuss the news in the morning, or talk about something we watched on Youtube, or what's playing on Svengoolie next Saturday. There was just nothing.
But I had some hope for the future. I've more or less been a de-facto caregiver for 14 years, ever since his initial diagnosis in 2007. My entire adult life I've been here, providing morale support, driving him to his appointments, going with him to support meetings. I could be free now. Maybe I could crawl out of the mental and psychological slump I've stewed in for so long.
Except ...
My dad's mother. She's been slowly sinking into dementia for years now, but has managed to be mostly independent. She's lived with us for over 30 years, and aside from giving up driving she's pretty much lived like she always had, up until about a month before dad fell into a coma when she injured her hip. That was it, that was all it took, she went from mostly functional to bedridden and 24/7 care overnight. Difficult, difficult 24/7 care. Stumbling on a cane because she'd rather die than use a walker, falling at least once a week, complaining that her meals are too large and then stumbling to the kitchen to eat five bananas a day. Her hip has long since healed, she doesn't fall anymore, but this is her life now and nothing will change her notion of that. Refuses to dress, refuses to shower, refuses to do literally anything except lay in bed. Mom and I can't go anywhere or do anything because the instant one of us leaves she'll stumble out in a half panic wondering where "everyone" is. I don't know what she'd do if we both left for more than a few minutes, we'd probably find her collapsed on the street in her night gown or something.
And we've tried getting help. We talked to her doctor over a video call. Nothing I can do, he said, unless I can see her in person. And even without Covid restrictions that would never happen. But he'll get in touch with someone that can help! Well, that never happened either. We talked to one of my dad's hospice nurses about the situation. Sure, I'll see what I can do and have someone get in touch with you! That was two months ago. We get tired of waiting, we call around, we see what's available, finally get in touch with an agency, and they at last send ... a caregiver, once a week for four hours, to clean the house. That's it. no nurses, no health care, nothing but someone who can be here for a couple hours a week so we can run errands. Someone who can beg grandma to take a shower and fail, but can at least giver her a bath in bed and somewhat mitigate the constant sour BO smell that lingers on this this side of the house.
So. That's it. That's where I stand. I've had a few people asking for commissions lately via notes. I was never much of a commission-taker, I'm especially not now, but I'm doing what I can. As long as I can distract myself and forget I can sort of power through, but that's not always easy when my grandmother tells me she wants to die and that she wants me to help her do so.
TL;DR dad died grandma's crazy
Anyway.
Don't have regrets for anything, we are never ready to go through those things, and you will have done the most you could.
Just take care of yourslef too.
We're currently dealing something similar with my grandma (on my mothers side), though we are not currently living with her, and she is having some sort of dementia. She is still recnoises me and family but she have been increasingly difficult, usually demanding to go back home, while usually not defining what home is very well (my grandparents moved to a smaller apartment 10 years ago after a incident with my grandfather falling ill made them realize it was becoming more difficult to manage). And the most recent problem is very similar to one you have, it's being very difficult to convince her to take a shower as she's afraid of tripping and falling now. At this point my grandfather probably needs some caretaker than come and help now and then.
What memories they can recall and when seems to be very inconsistent, she suddenly took my grandfather for a stranger out of the blue once, and while she recnoses me still, she did once think i would appear in old 8 MM home movie recorded in the 60's and 70's when I was born in the mid 80's. And while she demands about being driven home, she seems to have a hard time to define where home is.
The situation with your grandmother sounds heartbreakingly familiar to me. My dad's mother fell into a similar headspace in her late 80s, and it reverberated throughout our lives for a long time. To be dealing with something like that 24/7, on top of a great loss, during a pandemic... I just can't imagine.
Really hope you and your family are able to find some form of relief. And for whatever it's worth, I'm always happy to listen if that helps at all.
*hug* I hope you can find peace.
I wish I could be of any help or advice or anything; I had to grieve through 4 losses, and they all were different. I can only say the obvious: deal with it the way you seem fit for you. It's okay to be a bit numb, or to not realise fully what it means, and at some point it'll most probably hit you and I wish you to be ready for it and/or to be surrounded by the people who can help you go through it.
We had to deal with two different people in our family "going insane" (not exactly dementia, I don't think it was an "actual" mental condition, more like exhaustion. I'm not sure) but for kind of two different reasons, and we had to deal with it differently. One we could only show them our affection and our care, and the other we had to be stern. I myself had to be stuck in bed for months and had to be showered in bed, there's no easy way for that unless you're crazy rich and have a lot of room to get the equipment for it.
Thank you for sharing all this, this doesn't sound easy both to live it, and to tell it. Hang in there.
So sorry to hear.
I'm hoping things improve and heal over on your part here.