Hi all
My husband who has dementia, not sure but I'd say somewhere between moderate and severe, outreach nurse noted on his records a seven on some Canadian scale???, there was only eight left.
He had some very dizzy spells back at the end of March and ended up being taken to hospital by ambulance and having a pacemaker fitted. Unfortunately he was in there for a week before they could get it done and this left him way down on his mobility and confusion levels.
He came home after 10days and we had some care help provided and hospital bed for him. Unfortunately, he wasn't at all happy with the carers, personal care etc., and that and the hospital bed lasted two days.
I'd got rid of my bed so that the hospital bed could go in there so when he decided he wasn't going to sleep in it I did until they took it away and I bought a new bed. To be fair, he is quite a big man and did look as if he might fall out of it at anytime, his knees hanging over the edge. Also, I needed a new bed anyway, so that wasn't disastrous.
He was at the hospital again last Tuesday having a BCC removed from his back. This turned out to be very traumatic for him, and me. He couldn't lay on his front as they wanted him to, so with great difficulty, and four of us helping, we got him on his side. I don't know if this is something to do with the dementia but he doesn't seem to be able to co-ordinate his moves enough to do things like this anymore. When he goes to bed he looks very uncomfortable but turns in the night.
The wound on his back is leaking a little pusy stuff. They told me to remove the dressing after two days and leave it uncovered. This isn't very practical because when he lays on his back he rubs on it and it seems to ooze a lot.
I plan to contact the GP tomorrow to check on this.
During his first stay in hospital he became even more clingy and unable to do very much at all for himself. I spent all day with him until 8pm sometimes but he still managed to phone me several times after I'd left and in the early morning,
This 2nd visit for the tumour removal has left him in an even worse condition physically and again, mentally. He now wants me to tuck him in bed every night and sometimes gets up and asks why I haven't although I have. His walking has gone from shuffling to a kind of stuttering step, especially with his right foot, and he is very very slow. He's also taken to coming into my bedroom in the early hours asking if we are going to have a meal, 2am, 5am and once at 5am wanted to know about dinner. This morning he came in at 2 and asked why I was in bed, he was convinced we'd been up and watched television and he was waiting for his breakfast.
He uses the bathroom basin for weeing, although just a few days ago i got out a wee bottle that I'd bought a little while back and he started using that in his bedroom, big improvement, but he doesn't always want to do it. He's had a wet bed, he said he spilt the bottle but as it was right in the middle, I'm not so sure.
I am looking at my options at the moment. I've had an email conversation with his two daughters to explain the situation and asked them to get involved in planning for his future care. Waiting for them to get together and discuss then come back to me. Although I have sole POA I definitely think they need to be involved in finding the right place and making plans but if they don't want to, then I suppose I will have to.
I think during the last few weeks when his family and friends have visited they have been quite shocked by how bad he is. To me it's just been a progression so I suppose I don't notice the difference to much, apart from the utter exhaustion.
The options seem to be full time care home. Respite care for a week at a time or live in or part time carer.
None of these are things I wanted to do and not something he is at all accepting of, but then not much is. The problem is that I really, really am struggling now, physically and mentally, I can almost feel myself cracking.
I don't know, but I think the live in carer route is usually meant for people who live alone and I wouldn't really want someone here all the time while I am. Could be useful for a break I suppose.
How have other people dealt with finding the right place for their loved one and getting them to be more accepting of going. I've tried to tell him how much I'm struggling but he just doesn't know why, doesn't understand. I'm starting to get angry and I really don't want to be like that, I know none of this is his fault and that he can't really do anything about it.
I'm thinking of paying a carer for an afternoon each week to sit with him so that I can just escape for a few hours. Wondered if this may be a way of breaking through. But, and here's the big but, when we had care for the NHS after hospital they were different people every single day, twice a day, I'm sure this wouldn't help him at all.
Right, that's enough of my rambling, sometimes it just helps to get it written down.
Best wishes to all
x
My husband who has dementia, not sure but I'd say somewhere between moderate and severe, outreach nurse noted on his records a seven on some Canadian scale???, there was only eight left.
He had some very dizzy spells back at the end of March and ended up being taken to hospital by ambulance and having a pacemaker fitted. Unfortunately he was in there for a week before they could get it done and this left him way down on his mobility and confusion levels.
He came home after 10days and we had some care help provided and hospital bed for him. Unfortunately, he wasn't at all happy with the carers, personal care etc., and that and the hospital bed lasted two days.
I'd got rid of my bed so that the hospital bed could go in there so when he decided he wasn't going to sleep in it I did until they took it away and I bought a new bed. To be fair, he is quite a big man and did look as if he might fall out of it at anytime, his knees hanging over the edge. Also, I needed a new bed anyway, so that wasn't disastrous.
He was at the hospital again last Tuesday having a BCC removed from his back. This turned out to be very traumatic for him, and me. He couldn't lay on his front as they wanted him to, so with great difficulty, and four of us helping, we got him on his side. I don't know if this is something to do with the dementia but he doesn't seem to be able to co-ordinate his moves enough to do things like this anymore. When he goes to bed he looks very uncomfortable but turns in the night.
The wound on his back is leaking a little pusy stuff. They told me to remove the dressing after two days and leave it uncovered. This isn't very practical because when he lays on his back he rubs on it and it seems to ooze a lot.
I plan to contact the GP tomorrow to check on this.
During his first stay in hospital he became even more clingy and unable to do very much at all for himself. I spent all day with him until 8pm sometimes but he still managed to phone me several times after I'd left and in the early morning,
This 2nd visit for the tumour removal has left him in an even worse condition physically and again, mentally. He now wants me to tuck him in bed every night and sometimes gets up and asks why I haven't although I have. His walking has gone from shuffling to a kind of stuttering step, especially with his right foot, and he is very very slow. He's also taken to coming into my bedroom in the early hours asking if we are going to have a meal, 2am, 5am and once at 5am wanted to know about dinner. This morning he came in at 2 and asked why I was in bed, he was convinced we'd been up and watched television and he was waiting for his breakfast.
He uses the bathroom basin for weeing, although just a few days ago i got out a wee bottle that I'd bought a little while back and he started using that in his bedroom, big improvement, but he doesn't always want to do it. He's had a wet bed, he said he spilt the bottle but as it was right in the middle, I'm not so sure.
I am looking at my options at the moment. I've had an email conversation with his two daughters to explain the situation and asked them to get involved in planning for his future care. Waiting for them to get together and discuss then come back to me. Although I have sole POA I definitely think they need to be involved in finding the right place and making plans but if they don't want to, then I suppose I will have to.
I think during the last few weeks when his family and friends have visited they have been quite shocked by how bad he is. To me it's just been a progression so I suppose I don't notice the difference to much, apart from the utter exhaustion.
The options seem to be full time care home. Respite care for a week at a time or live in or part time carer.
None of these are things I wanted to do and not something he is at all accepting of, but then not much is. The problem is that I really, really am struggling now, physically and mentally, I can almost feel myself cracking.
I don't know, but I think the live in carer route is usually meant for people who live alone and I wouldn't really want someone here all the time while I am. Could be useful for a break I suppose.
How have other people dealt with finding the right place for their loved one and getting them to be more accepting of going. I've tried to tell him how much I'm struggling but he just doesn't know why, doesn't understand. I'm starting to get angry and I really don't want to be like that, I know none of this is his fault and that he can't really do anything about it.
I'm thinking of paying a carer for an afternoon each week to sit with him so that I can just escape for a few hours. Wondered if this may be a way of breaking through. But, and here's the big but, when we had care for the NHS after hospital they were different people every single day, twice a day, I'm sure this wouldn't help him at all.
Right, that's enough of my rambling, sometimes it just helps to get it written down.
Best wishes to all
x
