Sorry - I think this is going to be a long post.
My dad had a diagnosis of mixed dementia several years ago. At a review meeting last year the memory clinic queried the diagnosis as he wasn't showing the 'usual' progression. He was referred for another MR scan (the first time he couldn't have the scan as he couldn't lie flat enough). We had one abortive trip to Leeds, followed by a slightly more successful trip to a clinic in London at the end of January. Dad's GP - who is brilliant - referred the report to the memory clinic for review and a follow-up appointment, but the memory clinic has a six month backlog so we're looking at July at the earliest before we find out any more. In the meantime, I'm left not knowing if we're dealing with dementia or ... what? But what we do know is that my dad has significant memory issues, with his short term memory being practically non-existent at times (increasingly so). And I guess that also means I'm not sure if posting on here is even relevant?
Dad has been coping in his own home - but needing increasing amounts of support. He had to stop driving about two years ago (still haven't heard the end of that from him) which meant that his social interaction was curtailed - although in effect what he'd been doing is driving himself to the local lake to sit and people watch. He was initially (3-4 years ago) having carers in three times a week to deal with his leg ulcers and change his compression socks. This was increased to daily visits about 18 months ago, and was to include a couple of visits to help him shower. He has refused any more help from "strangers". I've been taking him food shopping since he stopped driving, and increasingly doing his shopping for him. I've been doing all his washing for I don't know how long. We now pay his carer to do basic cleaning once a week. I deal with all dad's paperwork. Since he stopped driving, I've been taking him out for lunch on a Sunday - and over the last 18 months this has turned into lunch and shopping on a Saturday as well. To the extent that, unless I have an appointment which dad recognises as 'unavoidable' (eg hairdressers) he rings me up several times during the day on a Saturday if I don't turn up at lunchtime - irrespective of what we've discussed the previous night (he doesn't of course remember). I feel like I no longer have my own time. I go away some weekends - which feels wonderful. Dad rarely calls then, but otherwise insists that he can't cope if I'm away overnight. And often rings me up during the night just before I go away, or the night I get back. Since mum died in 2006 he's been ringing me up every night about 10.30pm to make sure I'm ok before he goes to bed. That has also served as a double-check for his medication, since he went on warfarin. But sometimes he forgets he's called. And, to be honest, the constant phone calls are driving me nuts.
In the last few months the phone calls have been increasing - during the day, late at night and for the last two or three months increasingly in the middle of the night. I work full time, spending at least three hours a day commuting.
Dad was in hospital with a UTI in February. We had trouble persuading him to stay in the hospital - he was extra confused because of the infection - and he was only in there two nights. When he came home he was refusing the extra care visits which were put in place to make sure he was applying ointment and was keeping clean - and he was so abusive to the carers one night that they complained. That coincided with half term when my brother was on holiday and he stepped in to deal with as much as he could. My dad and brother have, shall we say, a stormy relationship so it's been easier for me to have the interactions with my dad. But since half term my brother has been much more involved and has really stepped up this last couple of weeks.
Since the hospital stay, dad's GP has been increasingly concerned. That was followed by a bout with this very bad cold that has been going the rounds, and has settled on people's chests and lingered. Dad became convinced he had cheese stuck in his throat and wouldn't be persuaded otherwise. When I refused to take him to A&E he called his next door neighbour who - knowing no better - sat up at the hospital with him for a few hours and then called me when they got in at 1.30am to tell me what had happened. Dad has been calling at all hours because he's frightened he's going to stop breathing and wants one of us to go down and stay the night "just for tonight", but this has been going on for weeks. His hygiene is suffering. He doesn't want a shower, refuses to change the incontinence pads he's been wearing since the UTI and I don't think is eating as much - apart from when one of us takes him out for lunch. His carer is scheduled to take him out twice a week as well - to get dad out and about and to make me feel less guilty if I can't take him out at a weekend. It turns out that he's been sleeping in his chair downstairs some of the time - which has meant that his legs have swollen so much that his leg ulcers have broken out again.
We've been discussing care homes. Dad has always (ie I remember from being a young child) that he would never go into a home. He has seemed, recently, to be accepting that he may need to, especially as he won't be able to manage the stairs for much longer (he has osteoporosis in one hip). But the occasional rational discussions don't last long - he forgets we've discussed it, he becomes agitated, angry, and we're back to square one.
All this has been taking an increasing toll on me. I feel like I'm going mad. On one level, staying down at my dad's overnight, talking to him, doing things for him sounds perfectly reasonable - but I know that I'm dreading the 'phone going, I'm panicking at the thought of it, I'm exhausted, I'm in tears for no apparent reason, work is suffering.
We finally got dad to agree, albeit reluctantly, to go into respite care last Wednesday to give me, and my brother, a break. This was after a week of multiple phone calls from my dad, my brother, carers, dad's GP ... and me leaving work early every day for a week to take my dad to an appointment or deal with some "emergency". In the middle of all this was my uncle's funeral (which we didn't tell dad about - he couldn't have travelled). Dad seemed to recognise that I was at the end of my tether, which is why he finally agreed to go in. But we'd only been in the care home a few minutes when he started saying he didn't like it and wasn't staying. My brother left after an hour as his presence was just winding up my dad more. He first went to get dad some tea (he hadn't eaten and had missed the evening meal), which I managed to get dad to eat. But each time I tried to leave he got more and more agitated and was trying to follow me We eventually persuaded him that he needed to stay for at least one night so that I wasn't worried about him. I left in tears. Someone from the care home called later that evening to tell me he'd calmed down, was a changed person, and was looking forward to his full English! So I could relax.
But he got increasingly agitated on and off over the next few days. His GP has been involved, as has the urgent care team. They've assessed his mental capacity, with a view to getting a DOLS - but he's assessed as having capacity and understanding the risks of going home. Our minister spent two hours with him yesterday. My brother has been bearing the brunt of this particular episode as I'm at the end of my tether. We both work full time, and I've having problems at work now which are in danger of pushing me over the edge. I'm likely to be signed off sick next week. In some ways that would have been a relief as - with dad in respite care - I might have been able to get some rest. But it all culminated in dad going home last night - they could no longer keep him there against his will. I've seen dad kick off a lot over the years (not just post-dementia) and I know how hard it is to cope with. The urgent care person assessed him on his stairs, and he was ok - so had to leave him at home. My brother spoke to dad last night. Dad started ringing me before eight this morning saying how bad he's feeling. I'm ashamed to say I haven't been down. I know I'll have to at some point - but I'm at screaming point. How can he say he doesn't need help, when he's on the 'phone all the time saying how bad he feels and he can't be on his own? I know he's not reasoning properly ... but we don't know where to turn next.
Has anyone been at this point? Anything to suggest?
Thank you if you've managed to get to the end of this 'war and peace' like post.
Diane.
My dad had a diagnosis of mixed dementia several years ago. At a review meeting last year the memory clinic queried the diagnosis as he wasn't showing the 'usual' progression. He was referred for another MR scan (the first time he couldn't have the scan as he couldn't lie flat enough). We had one abortive trip to Leeds, followed by a slightly more successful trip to a clinic in London at the end of January. Dad's GP - who is brilliant - referred the report to the memory clinic for review and a follow-up appointment, but the memory clinic has a six month backlog so we're looking at July at the earliest before we find out any more. In the meantime, I'm left not knowing if we're dealing with dementia or ... what? But what we do know is that my dad has significant memory issues, with his short term memory being practically non-existent at times (increasingly so). And I guess that also means I'm not sure if posting on here is even relevant?
Dad has been coping in his own home - but needing increasing amounts of support. He had to stop driving about two years ago (still haven't heard the end of that from him) which meant that his social interaction was curtailed - although in effect what he'd been doing is driving himself to the local lake to sit and people watch. He was initially (3-4 years ago) having carers in three times a week to deal with his leg ulcers and change his compression socks. This was increased to daily visits about 18 months ago, and was to include a couple of visits to help him shower. He has refused any more help from "strangers". I've been taking him food shopping since he stopped driving, and increasingly doing his shopping for him. I've been doing all his washing for I don't know how long. We now pay his carer to do basic cleaning once a week. I deal with all dad's paperwork. Since he stopped driving, I've been taking him out for lunch on a Sunday - and over the last 18 months this has turned into lunch and shopping on a Saturday as well. To the extent that, unless I have an appointment which dad recognises as 'unavoidable' (eg hairdressers) he rings me up several times during the day on a Saturday if I don't turn up at lunchtime - irrespective of what we've discussed the previous night (he doesn't of course remember). I feel like I no longer have my own time. I go away some weekends - which feels wonderful. Dad rarely calls then, but otherwise insists that he can't cope if I'm away overnight. And often rings me up during the night just before I go away, or the night I get back. Since mum died in 2006 he's been ringing me up every night about 10.30pm to make sure I'm ok before he goes to bed. That has also served as a double-check for his medication, since he went on warfarin. But sometimes he forgets he's called. And, to be honest, the constant phone calls are driving me nuts.
In the last few months the phone calls have been increasing - during the day, late at night and for the last two or three months increasingly in the middle of the night. I work full time, spending at least three hours a day commuting.
Dad was in hospital with a UTI in February. We had trouble persuading him to stay in the hospital - he was extra confused because of the infection - and he was only in there two nights. When he came home he was refusing the extra care visits which were put in place to make sure he was applying ointment and was keeping clean - and he was so abusive to the carers one night that they complained. That coincided with half term when my brother was on holiday and he stepped in to deal with as much as he could. My dad and brother have, shall we say, a stormy relationship so it's been easier for me to have the interactions with my dad. But since half term my brother has been much more involved and has really stepped up this last couple of weeks.
Since the hospital stay, dad's GP has been increasingly concerned. That was followed by a bout with this very bad cold that has been going the rounds, and has settled on people's chests and lingered. Dad became convinced he had cheese stuck in his throat and wouldn't be persuaded otherwise. When I refused to take him to A&E he called his next door neighbour who - knowing no better - sat up at the hospital with him for a few hours and then called me when they got in at 1.30am to tell me what had happened. Dad has been calling at all hours because he's frightened he's going to stop breathing and wants one of us to go down and stay the night "just for tonight", but this has been going on for weeks. His hygiene is suffering. He doesn't want a shower, refuses to change the incontinence pads he's been wearing since the UTI and I don't think is eating as much - apart from when one of us takes him out for lunch. His carer is scheduled to take him out twice a week as well - to get dad out and about and to make me feel less guilty if I can't take him out at a weekend. It turns out that he's been sleeping in his chair downstairs some of the time - which has meant that his legs have swollen so much that his leg ulcers have broken out again.
We've been discussing care homes. Dad has always (ie I remember from being a young child) that he would never go into a home. He has seemed, recently, to be accepting that he may need to, especially as he won't be able to manage the stairs for much longer (he has osteoporosis in one hip). But the occasional rational discussions don't last long - he forgets we've discussed it, he becomes agitated, angry, and we're back to square one.
All this has been taking an increasing toll on me. I feel like I'm going mad. On one level, staying down at my dad's overnight, talking to him, doing things for him sounds perfectly reasonable - but I know that I'm dreading the 'phone going, I'm panicking at the thought of it, I'm exhausted, I'm in tears for no apparent reason, work is suffering.
We finally got dad to agree, albeit reluctantly, to go into respite care last Wednesday to give me, and my brother, a break. This was after a week of multiple phone calls from my dad, my brother, carers, dad's GP ... and me leaving work early every day for a week to take my dad to an appointment or deal with some "emergency". In the middle of all this was my uncle's funeral (which we didn't tell dad about - he couldn't have travelled). Dad seemed to recognise that I was at the end of my tether, which is why he finally agreed to go in. But we'd only been in the care home a few minutes when he started saying he didn't like it and wasn't staying. My brother left after an hour as his presence was just winding up my dad more. He first went to get dad some tea (he hadn't eaten and had missed the evening meal), which I managed to get dad to eat. But each time I tried to leave he got more and more agitated and was trying to follow me We eventually persuaded him that he needed to stay for at least one night so that I wasn't worried about him. I left in tears. Someone from the care home called later that evening to tell me he'd calmed down, was a changed person, and was looking forward to his full English! So I could relax.
But he got increasingly agitated on and off over the next few days. His GP has been involved, as has the urgent care team. They've assessed his mental capacity, with a view to getting a DOLS - but he's assessed as having capacity and understanding the risks of going home. Our minister spent two hours with him yesterday. My brother has been bearing the brunt of this particular episode as I'm at the end of my tether. We both work full time, and I've having problems at work now which are in danger of pushing me over the edge. I'm likely to be signed off sick next week. In some ways that would have been a relief as - with dad in respite care - I might have been able to get some rest. But it all culminated in dad going home last night - they could no longer keep him there against his will. I've seen dad kick off a lot over the years (not just post-dementia) and I know how hard it is to cope with. The urgent care person assessed him on his stairs, and he was ok - so had to leave him at home. My brother spoke to dad last night. Dad started ringing me before eight this morning saying how bad he's feeling. I'm ashamed to say I haven't been down. I know I'll have to at some point - but I'm at screaming point. How can he say he doesn't need help, when he's on the 'phone all the time saying how bad he feels and he can't be on his own? I know he's not reasoning properly ... but we don't know where to turn next.
Has anyone been at this point? Anything to suggest?
Thank you if you've managed to get to the end of this 'war and peace' like post.
Diane.