Bit of a rant. Apologies in advance. No answers expected, just needing to share with people who I know will understand!
Dad is 91 with mixed AZ/VD. He still lives at home with my mum (84) who is main carer. They are about a 50-mile round trip from me so not too far. I went down to a 4 days week last year so that I could help more and I visit at twice a week, sometimes more, and stay over when I can to help mum. A carer comes for 2 hours once a week to take Dad out (if he will go). As of this month Dad gets the higher attendance allowance rate. With the help of the local branch of the Alzheimer's Society we should shortly get a carer and a financial assessment.
Since Xmas dad's evening/night time agitations ("going home") have got worse and worse. He is on memantine (since mid-December) and risperidone (started just over 2 weeks ago). When the consultant prescribed the risperidone he also advided mum that we needed to begin thinking about respite care for both their sakes.
During the day Dad is mostly fairly high-functioning considering that the consultant says he is now in the advanced stages: he looks at his newspapers, works on his stamp collection (for 2 hours at a time sometimes), can engage in unchallenging conversations, will watch some of his WW2 dvds. He is currently continent and can dress/undress with a bit of guidance re clean underwear etc.
The evenings are the bad times. I feel sick all day thinking about them. I have suggested to mum that we try to get an evening visit from the carer to help in dealing with some of the repetitive questioning during those bad times but she says she doesn't want "visitors" in the evening. She says the same about morning visits to help her sort breakfast etc. When Dad had a bad night last week I went over to stay and mum and I had a long conversation about not questioning him or contradicting him (eg. "THIS is your home!" "What do you mean?") during the bad sundowning. She's trying to go with lines like "we are staying here tonight" as she knows she has been trying to pull him back to a reality he can't grasp - though that still leads to dad asking whether the owners know and that's a tough one to answer.
The only thing I haven't tried is moving back home for good. I am unmarried and childless so could do that in theory. Mum insists she doesn't want that but if she will not let carers do more what else can I do? I can't let her struggle on alone, face Dad's agitation and verbal aggression alone. I have visisted 3 care homes with a view to respite and long term care. Two were good in their different ways though the second said that that Dad was too high-functioning at present fot the level of care they provide. But Mum is not ready to agree to either respite or full-time and my brother does not think we have reached that stage yet either. In my heart I am not sure myself, I'm just desperate to ease the pressure on mum. The carer is very supportive and happy to go in whenever she is asked, or try taking Dad to day care - but as she says, she cannot force help on my mum - mum has to accept it - and that is a struggle in itself. Sometimes she tells me not to nag her. I don't meant to but I am the one that she confides in and I cant help trying to do everything I can to make things better.
I feel there will have to be a crisis before anything changes and I hate myself for sometimes almost wishing that - wishing that Dad were worse than he is so it would all be a bit easier for me - which is what it seems to come down to.
I went to my doctor this morning meaning to ask to be signed off work as I felt last week that I could not go on with trying to do my job and giving mum the time and help she needs. In the end I couldn't do that. So here I am ranting on TP instead.
Thanks for listening.....
Dad is 91 with mixed AZ/VD. He still lives at home with my mum (84) who is main carer. They are about a 50-mile round trip from me so not too far. I went down to a 4 days week last year so that I could help more and I visit at twice a week, sometimes more, and stay over when I can to help mum. A carer comes for 2 hours once a week to take Dad out (if he will go). As of this month Dad gets the higher attendance allowance rate. With the help of the local branch of the Alzheimer's Society we should shortly get a carer and a financial assessment.
Since Xmas dad's evening/night time agitations ("going home") have got worse and worse. He is on memantine (since mid-December) and risperidone (started just over 2 weeks ago). When the consultant prescribed the risperidone he also advided mum that we needed to begin thinking about respite care for both their sakes.
During the day Dad is mostly fairly high-functioning considering that the consultant says he is now in the advanced stages: he looks at his newspapers, works on his stamp collection (for 2 hours at a time sometimes), can engage in unchallenging conversations, will watch some of his WW2 dvds. He is currently continent and can dress/undress with a bit of guidance re clean underwear etc.
The evenings are the bad times. I feel sick all day thinking about them. I have suggested to mum that we try to get an evening visit from the carer to help in dealing with some of the repetitive questioning during those bad times but she says she doesn't want "visitors" in the evening. She says the same about morning visits to help her sort breakfast etc. When Dad had a bad night last week I went over to stay and mum and I had a long conversation about not questioning him or contradicting him (eg. "THIS is your home!" "What do you mean?") during the bad sundowning. She's trying to go with lines like "we are staying here tonight" as she knows she has been trying to pull him back to a reality he can't grasp - though that still leads to dad asking whether the owners know and that's a tough one to answer.
The only thing I haven't tried is moving back home for good. I am unmarried and childless so could do that in theory. Mum insists she doesn't want that but if she will not let carers do more what else can I do? I can't let her struggle on alone, face Dad's agitation and verbal aggression alone. I have visisted 3 care homes with a view to respite and long term care. Two were good in their different ways though the second said that that Dad was too high-functioning at present fot the level of care they provide. But Mum is not ready to agree to either respite or full-time and my brother does not think we have reached that stage yet either. In my heart I am not sure myself, I'm just desperate to ease the pressure on mum. The carer is very supportive and happy to go in whenever she is asked, or try taking Dad to day care - but as she says, she cannot force help on my mum - mum has to accept it - and that is a struggle in itself. Sometimes she tells me not to nag her. I don't meant to but I am the one that she confides in and I cant help trying to do everything I can to make things better.
I feel there will have to be a crisis before anything changes and I hate myself for sometimes almost wishing that - wishing that Dad were worse than he is so it would all be a bit easier for me - which is what it seems to come down to.
I went to my doctor this morning meaning to ask to be signed off work as I felt last week that I could not go on with trying to do my job and giving mum the time and help she needs. In the end I couldn't do that. So here I am ranting on TP instead.
Thanks for listening.....
