Aargh!!! *Headdesk* *Headdesk* *Headdesk*
Feb. 16th, 2018 12:31 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
davidgillonDamn! Damn! Damn!
My mother asked my sister to go along to a meeting about my Dad's care this morning. It's just as well she could go because it turned out to be with Social Services, who want to discontinue Dad's care funding (it's not clear if it's just the nursing element - c£100 a week, or the entire £600 a week). I'm fairly confident neither of them knew that going in - my sister definitely didn't, my mother might possibly have been told, but hadn't understood anything beyond 'this is something I want my daughter to make the decisions on'.
For those who weren't around when this was an issue three years ago, Dad had a major stroke, which left him severely aphasic (without speech), paralyzed on the right side, with swallowing difficulties, completely incontinent, and having regular seizures, it also affected him emotionally, meaning he can occasionally lash out. Some days he is completely compos mentis, other days not. He's in a good care home. local to my mother, and his care is completely funded by the state due to the severity of his disability, or at least is has been until now.
Their argument is "he's not having seizures, he's not as violent as he was", apparently she actually said "he slipped through the net," implying he should have had this withdrawn ages ago.
The truth is that Dad may not be having major seizures any more, but I'm damned sure he has absences on a regular basis, because I've seen them, and I really don't see him that much. And as for violence, he hurt one of the care staff quite recently. There was a point made about him no longer being on lorazepam, but it's more complex than that, there's a continual balancing process going on between keeping his dosages high enough he doesn't have seizures or become agitated, and low enough he isn't completely sedated. On top of that he is no longer able to stand (all transfers are hoisted) or really feed himself, his swallowing has gotten worse, he now needs all food pureed and because he can't clear his throat has regular choking incidents (several a day), and is spending significant amounts of time on bed-rest because of pressure sore issues - it's only because the nursing care is so good and so proactive that they've been able to prevent skin irritation turning into actual sores.
I think they're taking the position that he's able to direct his own care because he can say whether he wants to get up in the morning, but I've seen the opposite process and it can take six versions of "Billy, do you want to go to bed? Yes or no?" to get a response. And we have to remind the care staff to ask him, not us. The truth is the nursing staff would need to spend a lot more time with him but for my mother, who manages the majority of his one-on-one care when she's there (she's there so much she has an official staff badge).
There would be a real health risk if his nursing care was pulled, in practise we could pick that element up, but his situation is actually far more dependent on nursing care then when it was first awarded, so why should we? If they want to pull the entire package, then that's basically Dad's half of their savings, including the house, wiped out.
Apparently there will be a further meeting about this, so I may have to disappear North at short notice. I'll probably stay on line - in fact I should go order a data SIM for my MIFI right now - but that side of things has fallen through before, so if I go silent, that's what's going on.
My mother asked my sister to go along to a meeting about my Dad's care this morning. It's just as well she could go because it turned out to be with Social Services, who want to discontinue Dad's care funding (it's not clear if it's just the nursing element - c£100 a week, or the entire £600 a week). I'm fairly confident neither of them knew that going in - my sister definitely didn't, my mother might possibly have been told, but hadn't understood anything beyond 'this is something I want my daughter to make the decisions on'.
For those who weren't around when this was an issue three years ago, Dad had a major stroke, which left him severely aphasic (without speech), paralyzed on the right side, with swallowing difficulties, completely incontinent, and having regular seizures, it also affected him emotionally, meaning he can occasionally lash out. Some days he is completely compos mentis, other days not. He's in a good care home. local to my mother, and his care is completely funded by the state due to the severity of his disability, or at least is has been until now.
Their argument is "he's not having seizures, he's not as violent as he was", apparently she actually said "he slipped through the net," implying he should have had this withdrawn ages ago.
The truth is that Dad may not be having major seizures any more, but I'm damned sure he has absences on a regular basis, because I've seen them, and I really don't see him that much. And as for violence, he hurt one of the care staff quite recently. There was a point made about him no longer being on lorazepam, but it's more complex than that, there's a continual balancing process going on between keeping his dosages high enough he doesn't have seizures or become agitated, and low enough he isn't completely sedated. On top of that he is no longer able to stand (all transfers are hoisted) or really feed himself, his swallowing has gotten worse, he now needs all food pureed and because he can't clear his throat has regular choking incidents (several a day), and is spending significant amounts of time on bed-rest because of pressure sore issues - it's only because the nursing care is so good and so proactive that they've been able to prevent skin irritation turning into actual sores.
I think they're taking the position that he's able to direct his own care because he can say whether he wants to get up in the morning, but I've seen the opposite process and it can take six versions of "Billy, do you want to go to bed? Yes or no?" to get a response. And we have to remind the care staff to ask him, not us. The truth is the nursing staff would need to spend a lot more time with him but for my mother, who manages the majority of his one-on-one care when she's there (she's there so much she has an official staff badge).
There would be a real health risk if his nursing care was pulled, in practise we could pick that element up, but his situation is actually far more dependent on nursing care then when it was first awarded, so why should we? If they want to pull the entire package, then that's basically Dad's half of their savings, including the house, wiped out.
Apparently there will be a further meeting about this, so I may have to disappear North at short notice. I'll probably stay on line - in fact I should go order a data SIM for my MIFI right now - but that side of things has fallen through before, so if I go silent, that's what's going on.
no subject
Date: 2018-02-16 05:45 pm (UTC)