Hi my name is Gerard I live on merseyside and I am caring for a long term partner with dementia. I moved out of the house some 5 years ago,however since January last year I have been staying with her because her condition has deteriorated. I still rent a council property which is quite local. However I have had to finish work to look after her. I do hope I can keep my flat and not loose out on benefits because of given up work voluntary. Hope to apply for carers and attendance allowance, hope the authorities will allow me to keep my flat as it provides a little independence for me As I am new to this site I am not familiar with rules of engagement so please forgive me if I get it wrong. I like most people I have come across feel isolated and lonely, more so now I have had to leave work. Hopefully these forums will allow me some down time to discus my concerns, and hopefully I can contribute to any discussion which might be helpful to others based on my recent experience.
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- Thread starter Gedmac
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Hello Gedmac and welcome to Talking Point.
I know what you mean about feeling isolated - social stuff can be tricky when you are caring for someone with dementia.
Have you tried carers groups, dementia cafes etc in your area? It can be a good way of meeting other people in the same situation as yourself and getting a little circle of friends. Would your partner go to day care? Lots of people with dementia enjoy this and it gives you a bit of "time out" and this might be used for some social activity.
Keep posting on here - we are only virtual friends, but the help, support and advice has been invaluable to me.
I know what you mean about feeling isolated - social stuff can be tricky when you are caring for someone with dementia.
Have you tried carers groups, dementia cafes etc in your area? It can be a good way of meeting other people in the same situation as yourself and getting a little circle of friends. Would your partner go to day care? Lots of people with dementia enjoy this and it gives you a bit of "time out" and this might be used for some social activity.
Keep posting on here - we are only virtual friends, but the help, support and advice has been invaluable to me.
thank you
Thank you so much for those suggestions. As far as trying to get her to events,she is very reluctant to attend anything outside. She used to work voluntary in a number of charity shops and had took a active role for more than 20 years. Sadly that came to a end quite recently. She used to read quite a lot and would get involved in books mainly local and Irish history She doesn't even take interest in any news papers anymore and pays little attention to the tv. I find she listen to the radio a lot and can relate to discussion programs particular LBC radio a London based station.She appears to lost interest in any tv soaps and shows no interest in films. It is very difficult to get her motivated.I was in pursuit of a degree in astro physics but had to abandon that pursuit to take on the care role. I don't have a problem taking that role on, I see it as my duty. I used to be a community care manager some 20 odd years ago, that was in the time of Thatcher, which I and many more fell victim because of the cuts. How history repeats itself so much.
Thank you so much for those suggestions. As far as trying to get her to events,she is very reluctant to attend anything outside. She used to work voluntary in a number of charity shops and had took a active role for more than 20 years. Sadly that came to a end quite recently. She used to read quite a lot and would get involved in books mainly local and Irish history She doesn't even take interest in any news papers anymore and pays little attention to the tv. I find she listen to the radio a lot and can relate to discussion programs particular LBC radio a London based station.She appears to lost interest in any tv soaps and shows no interest in films. It is very difficult to get her motivated.I was in pursuit of a degree in astro physics but had to abandon that pursuit to take on the care role. I don't have a problem taking that role on, I see it as my duty. I used to be a community care manager some 20 odd years ago, that was in the time of Thatcher, which I and many more fell victim because of the cuts. How history repeats itself so much.
Hi Gedmac
a warm welcome from me too
Your partner appears to have lost interest in the visual media (it may be that it requires too much concentration and may also be sensory overload for her) but still retains some interest in the spoken word ie LBC. I must admit I'm not a great music listener instead I love Radio 4 Extra as it has a variety of 'vintage' programmes and repeats of current ones eg the News Quiz, I wonder if your partner would enjoy this - and of course there's Radio 4
sorry if you know all about these - I do come across quite a few people who had no idea there was anything else but Radio2 (not that there's anything wrong in being a dedicated Radio 2 fan) and music does seem to help settle my dad (he loves his jazz and swing)
There are also talking books - have a look in your local library and ask what other services are available, and lots are available online too - and how about this for news to listen to
http://www.tnauk.org.uk/
Is she amenable to a bit of 'emotional blackmail' to get her out - and equally importantly for you to get out. I mean, how will she respond to 'I'd love to go to this coffee morning but I'm a bit shy of walking in on my own, would you mind being a dear and coming with me?' This way she feels no pressure on her and she's doing you a favour so she feels good? Same with day care - it's not for her, it's a favour to you so you know she's having a good lunch and a bit of company on a day when you need to ... (here make up or take up an activity - something to do with your astro physics maybe). I know my dad was happy to do something to help me out, but baulked if it was just for him - but he's been like this all my life, going with me to museums and such when no-one else was interested.
I do hope you've contacted your LA for an assessment of her needs AND for a Carer's Assessment for you - you may well be eligible for some support eg a sitter (maybe someone to read to her) and some respite. And do check with the council as if she is officially living alone and has a dementia diagnosis she may well qualify for a Council Tax reduction (dad didn't pay any at all).
do let us know how you go on
best wsihes
a warm welcome from me too
Your partner appears to have lost interest in the visual media (it may be that it requires too much concentration and may also be sensory overload for her) but still retains some interest in the spoken word ie LBC. I must admit I'm not a great music listener instead I love Radio 4 Extra as it has a variety of 'vintage' programmes and repeats of current ones eg the News Quiz, I wonder if your partner would enjoy this - and of course there's Radio 4
sorry if you know all about these - I do come across quite a few people who had no idea there was anything else but Radio2 (not that there's anything wrong in being a dedicated Radio 2 fan) and music does seem to help settle my dad (he loves his jazz and swing)
There are also talking books - have a look in your local library and ask what other services are available, and lots are available online too - and how about this for news to listen to
http://www.tnauk.org.uk/
Is she amenable to a bit of 'emotional blackmail' to get her out - and equally importantly for you to get out. I mean, how will she respond to 'I'd love to go to this coffee morning but I'm a bit shy of walking in on my own, would you mind being a dear and coming with me?' This way she feels no pressure on her and she's doing you a favour so she feels good? Same with day care - it's not for her, it's a favour to you so you know she's having a good lunch and a bit of company on a day when you need to ... (here make up or take up an activity - something to do with your astro physics maybe). I know my dad was happy to do something to help me out, but baulked if it was just for him - but he's been like this all my life, going with me to museums and such when no-one else was interested.
I do hope you've contacted your LA for an assessment of her needs AND for a Carer's Assessment for you - you may well be eligible for some support eg a sitter (maybe someone to read to her) and some respite. And do check with the council as if she is officially living alone and has a dementia diagnosis she may well qualify for a Council Tax reduction (dad didn't pay any at all).
do let us know how you go on
best wsihes
Thank you so much for all your advice and tips as I am writing this reply she is watching bbc news and making comment on Rupert murdocks wedding,which is quite a breakthrough to say the least. I will investigate what you suggest and thank you for taking the time, I will keep you posted with any progress. One again many thanks. Best wishes Gerard
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Mum couldn't cope with TV and as she progressed through the illness she would shut her eyes when the day got too much for her. It was, as has been said, as though too much visual stimulation overloaded her.
As she reached the end of her journey with the disease she would hear my voice and recognise it but not the visual me so audio skills seem to last a lot longer than others with Mum. Classical music seemed to calm her down, not spoken word.
As she reached the end of her journey with the disease she would hear my voice and recognise it but not the visual me so audio skills seem to last a lot longer than others with Mum. Classical music seemed to calm her down, not spoken word.
Thank you for your reply,so sorry to hear about your mum. It certainly appears to be the case that audio skills seems to last a lot longer than anything visual. Although not at the stage yet she recognised everyone ok and certain characters on the tv. I suppose we have those stages to come. She is not aware what's happening to her. She suspects there is something wrong but is not sure. Her brother died a few years ago with the same condition, I don't think she has recovered from that. Thank you for your help and advice. Best wishes,Gerard
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Sent from my iPhone using Talking Point
