Elderly Parent early onset alzheimers
Discussion
One of my parents has been recently diagnosed and situation escalating a bit and likely to be needing more care soon,
Hoping I might be able to reduce hours/days to offer assistance to their partner whose unaffected by it, another option might be giving up work to become a carer for a while to offer help
They are fairly well off and I don't need much money to live ( have my own savings) perhaps should focus on what is important rather than work?
Even if I get only a derisory carers allowance or money for petrol from them....not sure if allowances are tested against savings
Wonder if I should be concerned for myself too as I'm not a spring chicken either although its not meant to have hereditary factors.
I quickly composed and posted a message to something and I realised in the context of my sending I had automatically typed the word "work" instead of the word "worth"....hope that isn't a tell tale?
Hoping I might be able to reduce hours/days to offer assistance to their partner whose unaffected by it, another option might be giving up work to become a carer for a while to offer help
They are fairly well off and I don't need much money to live ( have my own savings) perhaps should focus on what is important rather than work?
Even if I get only a derisory carers allowance or money for petrol from them....not sure if allowances are tested against savings
Wonder if I should be concerned for myself too as I'm not a spring chicken either although its not meant to have hereditary factors.
I quickly composed and posted a message to something and I realised in the context of my sending I had automatically typed the word "work" instead of the word "worth"....hope that isn't a tell tale?
Sorry to hear about your difficulties, its tough watching your parents become old and vulnerable.
I was at the GP myself yesterday for a memory / dementia type discussion.
Based on my conversation with the GP it certainly does appear to be hereditary as that was a significant part of the conversation.
If you have concerns I'd recommend booking an appointment with your GP and asking for them to complete a cognitive test (it only takes 2 mins) and then run some blood tests. I had to ask my GP to add low testosterone though after reading an article the day before linking low testosterone to memory loss (in both men and women).
I was at the GP myself yesterday for a memory / dementia type discussion.
Based on my conversation with the GP it certainly does appear to be hereditary as that was a significant part of the conversation.
If you have concerns I'd recommend booking an appointment with your GP and asking for them to complete a cognitive test (it only takes 2 mins) and then run some blood tests. I had to ask my GP to add low testosterone though after reading an article the day before linking low testosterone to memory loss (in both men and women).
Edited by Help78 on Thursday 2nd July 10:49
daytonavrs said:
One of my parents has been recently diagnosed and situation escalating a bit and likely to be needing more care soon,
Hoping I might be able to reduce hours/days to offer assistance to their partner whose unaffected by it, another option might be giving up work to become a carer for a while to offer help
They are fairly well off and I don't need much money to live ( have my own savings) perhaps should focus on what is important rather than work?
Even if I get only a derisory carers allowance or money for petrol from them....not sure if allowances are tested against savings
Wonder if I should be concerned for myself too as I'm not a spring chicken either although its not meant to have hereditary factors.
I quickly composed and posted a message to something and I realised in the context of my sending I had automatically typed the word "work" instead of the word "worth"....hope that isn't a tell tale?
Sorry to hear that. Hoping I might be able to reduce hours/days to offer assistance to their partner whose unaffected by it, another option might be giving up work to become a carer for a while to offer help
They are fairly well off and I don't need much money to live ( have my own savings) perhaps should focus on what is important rather than work?
Even if I get only a derisory carers allowance or money for petrol from them....not sure if allowances are tested against savings
Wonder if I should be concerned for myself too as I'm not a spring chicken either although its not meant to have hereditary factors.
I quickly composed and posted a message to something and I realised in the context of my sending I had automatically typed the word "work" instead of the word "worth"....hope that isn't a tell tale?
My Mother was diagnosed with the same at the beginning of the year.
She lives on her own - we live nowhere near her.
My biggest concern is her forgetting to take her regular medicines and we are at the point of getting in private carers for 30 minutes am and then again pm to watch her take them and do other small jobs as requested.
I’ve no doubt that this time period will need extending.
Once someone has more than £23,750 or so in savings the local council won’t want to pay themselves and will either ask for a financial assessment or you can self declare and just pay up !
Private care can be anything up to £40 or so per hour.
You can apply for attendance allowance which is not means tested in any way and also is paid net with no tax.
This usually comes in 2 amounts with the higher only being given if their needs are much greater than just am needs ie care throughout the night etc.
I am a 50/ 50 whether we get this on her behalf ( for the lower amount )and it would only offset some of the cost .
Great care needs filling out the 32 page form. Don’t lie but just answer as if “ it’s their worst day”.
Carers allowance is also available but I know very little about that.
Good luck.
Contact Age concern.
I did on behalf of an 89 year old friend who is a full time carer for his bedridden wife who also has dementia.
You apply for forms after making an appointment for a visit, usually a 4 week wait, and the visitor will explain the benefits you are entitled to and fill in the relevant forms.
They also got her care team reviewed, which he had failed to do in 3 years. Not through lack of trying.
I did on behalf of an 89 year old friend who is a full time carer for his bedridden wife who also has dementia.
You apply for forms after making an appointment for a visit, usually a 4 week wait, and the visitor will explain the benefits you are entitled to and fill in the relevant forms.
They also got her care team reviewed, which he had failed to do in 3 years. Not through lack of trying.
daytonavrs said:
One of my parents has been recently diagnosed and situation escalating a bit and likely to be needing more care soon,
Hoping I might be able to reduce hours/days to offer assistance to their partner whose unaffected by it, another option might be giving up work to become a carer for a while to offer help
They are fairly well off and I don't need much money to live ( have my own savings) perhaps should focus on what is important rather than work?
Even if I get only a derisory carers allowance or money for petrol from them....not sure if allowances are tested against savings
Wonder if I should be concerned for myself too as I'm not a spring chicken either although its not meant to have hereditary factors.
I quickly composed and posted a message to something and I realised in the context of my sending I had automatically typed the word "work" instead of the word "worth"....hope that isn't a tell tale?
Sorry to hear this, I lost my mother a few years ago to this. Do you have a power of attorney for health & wealth, if not are they with it enough to do this. also you should get them to do an Advance Directive because even if you have PoA on Health doctors can still overrule you as they did on treating my mum Hoping I might be able to reduce hours/days to offer assistance to their partner whose unaffected by it, another option might be giving up work to become a carer for a while to offer help
They are fairly well off and I don't need much money to live ( have my own savings) perhaps should focus on what is important rather than work?
Even if I get only a derisory carers allowance or money for petrol from them....not sure if allowances are tested against savings
Wonder if I should be concerned for myself too as I'm not a spring chicken either although its not meant to have hereditary factors.
I quickly composed and posted a message to something and I realised in the context of my sending I had automatically typed the word "work" instead of the word "worth"....hope that isn't a tell tale?
Thank you all
I already have the power of attorney, need to check the details but think it may be both if not only financial
Respectfully considering the longer term situation he's been in with a very supportive long partner, seeing what we can do to help her for now I think and going to doctors altogether which should resolve even if the attorney thing isn't health specific that we can be involved in discussion.
They aren't even aware of the downturn yet as I wasn't able to convey the message yet.
I already have the power of attorney, need to check the details but think it may be both if not only financial
Respectfully considering the longer term situation he's been in with a very supportive long partner, seeing what we can do to help her for now I think and going to doctors altogether which should resolve even if the attorney thing isn't health specific that we can be involved in discussion.
They aren't even aware of the downturn yet as I wasn't able to convey the message yet.
Depending on how you approach it you may be able to obtain medical records from your parents GP with or without use of the LPA ( whether Health or Financial ).
I wanted to see Mum's and spoke to the GP and surgery and said I had full LPA and wanted to read through timings of various meetings with them when I compiled the AA form but they said whilst that was ok they also needed her permission to let me see them.
I managed to get her to walk to the surgery ( 5 minutes away ) and do just that and 5 minutes later I got the whole record sent !
it was much easier than arguing about the right of the LPA.
I wanted to see Mum's and spoke to the GP and surgery and said I had full LPA and wanted to read through timings of various meetings with them when I compiled the AA form but they said whilst that was ok they also needed her permission to let me see them.
I managed to get her to walk to the surgery ( 5 minutes away ) and do just that and 5 minutes later I got the whole record sent !
it was much easier than arguing about the right of the LPA.
Medical stuff is all sorted, they are ahead of the game now but there are scans to be taken further etc in terms of progressing
Bit of a downward shift lately ( not very worthwhile conversations, sitting about without trousers on and general downturn)
Out of interest anyone heard about this Trontinemab in the news
Bit of a downward shift lately ( not very worthwhile conversations, sitting about without trousers on and general downturn)
Out of interest anyone heard about this Trontinemab in the news
Make sure you or your parent's partner apply for Attendance Allowance or Personal Independence Payment as appropriate, as soon as possible. If the partner isn't working they may be able to get Carer's Allowance. If you are currently working you probably won't qualify for it. They or you can't get this without your parent getting AA or PIP first, and Carer's Allowance takes a while to come through.
If you are considering becoming the carer yourself, look into applying for a Gratuitous Care Payment or Family Care Payment, This is a regular payment for a family member providing care that would otherwise be paid to a professional carer. It is capped at 80% of the rate a professional carer would receive, because it isn't taxed (Note: This is not the rate a care agency would charge to provide a carer). It is paid from the assets of the person receiving the care and must be at a sustainable rate. You can search carer job adverts in your area to get an idea of what carer's pay rates would be.
I say this every time a question comes up about dementia, so I'll say it again; watch Big Clive's 'A proper Alzheimer's Video'. He doesn't pull any punches and gives a very accurate description of what caring for someone with Alzheimers is like.
My girlfriend and I moved in with my mother and looked after her for 3 1/2 years until her death. You get used to it and if you have someone who can help you share the load on a regular basis it is a massive help. Occasional help from family members is generally unsatisfactory; the person with Alzheimers will be concerned by 'the stranger' and the family member will often get stressed by their inability to remember anything said moments before.
With regard to regular medicines, it is worth talking to your parent's doctor. My mother was on about nie different pills a day that had been prescribed at various times. Once the doctor reviewed them and what the implications were of not taking them, she soon whittled them down to the essentials only, which made things a lot less stressful for both Mum and us.
If you are considering becoming the carer yourself, look into applying for a Gratuitous Care Payment or Family Care Payment, This is a regular payment for a family member providing care that would otherwise be paid to a professional carer. It is capped at 80% of the rate a professional carer would receive, because it isn't taxed (Note: This is not the rate a care agency would charge to provide a carer). It is paid from the assets of the person receiving the care and must be at a sustainable rate. You can search carer job adverts in your area to get an idea of what carer's pay rates would be.
I say this every time a question comes up about dementia, so I'll say it again; watch Big Clive's 'A proper Alzheimer's Video'. He doesn't pull any punches and gives a very accurate description of what caring for someone with Alzheimers is like.
My girlfriend and I moved in with my mother and looked after her for 3 1/2 years until her death. You get used to it and if you have someone who can help you share the load on a regular basis it is a massive help. Occasional help from family members is generally unsatisfactory; the person with Alzheimers will be concerned by 'the stranger' and the family member will often get stressed by their inability to remember anything said moments before.
With regard to regular medicines, it is worth talking to your parent's doctor. My mother was on about nie different pills a day that had been prescribed at various times. Once the doctor reviewed them and what the implications were of not taking them, she soon whittled them down to the essentials only, which made things a lot less stressful for both Mum and us.
Edited by GliderRider on Tuesday 8th September 21:11
Edited by GliderRider on Tuesday 8th September 21:17
I agree on the Attendance Allowance suggestion ^^, it's upto about £100/week and is paid to cover their costs such as needing someone to come over and help around the house, cut the grass and do some of the things they can't do anymore.
My mum received it (we submitted the claim for her) when she was diagnosed with fibrosis (terminal) and in the early days we would visit her and help her upstairs, cook a meal etc. As time went on she needed full time care but the attendance allowance continued being paid to her up until she died.
Oh, and see if its not to late to get Lasting Power of Attorney (financial and health) for both your parents
My mum received it (we submitted the claim for her) when she was diagnosed with fibrosis (terminal) and in the early days we would visit her and help her upstairs, cook a meal etc. As time went on she needed full time care but the attendance allowance continued being paid to her up until she died.
Oh, and see if its not to late to get Lasting Power of Attorney (financial and health) for both your parents
Thanks but going into full time paid care at their expense I think shortly, too difficult now for home for anyone this was already tried. I don't believe there is a shortage of funds.
Yes do have power of attorney but don't need it myself at the moment - there are enough parties including their living partner who is managing for now but I can tap into if an urgent situation arises.
Yes do have power of attorney but don't need it myself at the moment - there are enough parties including their living partner who is managing for now but I can tap into if an urgent situation arises.
daytonavrs said:
Thanks but going into full time paid care at their expense I think shortly, too difficult now for home for anyone this was already tried. I don't believe there is a shortage of funds.
Yes do have power of attorney but don't need it myself at the moment - there are enough parties including their living partner who is managing for now but I can tap into if an urgent situation arises.
Irrespective of the shortage of funds still worth applying for attendance allowance which if by then in a home are virtually guaranteed to get the maximum of the 2 different amounts offered which I think is now about £115 pw. Yes do have power of attorney but don't need it myself at the moment - there are enough parties including their living partner who is managing for now but I can tap into if an urgent situation arises.
Makes a small dent in the weekly charge at least.
The Gauge said:
I agree on the Attendance Allowance suggestion ^^, it's upto about £100/week and is paid to cover their costs such as needing someone to come over and help around the house, cut the grass and do some of the things they can't do anymore.
My mum received it (we submitted the claim for her) when she was diagnosed with fibrosis (terminal) and in the early days we would visit her and help her upstairs, cook a meal etc. As time went on she needed full time care but the attendance allowance continued being paid to her up until she died.
Oh, and see if its not to late to get Lasting Power of Attorney (financial and health) for both your parents
100% on the LPA. Health & Wellness is arguable the more important, but get Finance & Property as well. My in-laws are both f*cked, but having LPA for H&W saved both of their lives 3 years ago.My mum received it (we submitted the claim for her) when she was diagnosed with fibrosis (terminal) and in the early days we would visit her and help her upstairs, cook a meal etc. As time went on she needed full time care but the attendance allowance continued being paid to her up until she died.
Oh, and see if its not to late to get Lasting Power of Attorney (financial and health) for both your parents
Also agree on Attendance Allowance. Non-means tested, £114/wk. So a couple gets c£1000 month. With carers at £14-17/hr, it covers a lot of care.
TheHeadhunter said:
100% on the LPA. Health & Wellness is arguable the more important, but get Finance & Property as well. My in-laws are both f*cked, but having LPA for H&W saved both of their lives 3 years ago.
Also agree on Attendance Allowance. Non-means tested, £114/wk. So a couple gets c£1000 month. With carers at £14-17/hr, it covers a lot of care.
For having to deal with both my Aunt and now of late my Mum I’ve found it’s actually the Finance LPA has been more used than the Health one but obviously equally important to get both done at the same time and in plenty of advance time- better to have and not need rather than try to deal with without !Also agree on Attendance Allowance. Non-means tested, £114/wk. So a couple gets c£1000 month. With carers at £14-17/hr, it covers a lot of care.
On both having the access code capability has certainly made life much easier particularly on the Finance one.
Average charge for private carers seems more around the £25 ph though and then some charge for mileage on top and have a minimum time.
Literally just received the care assessment done on Mum.
Doesn’t tell us anything we didn’t already know.
Seems more akin to covering themselves and ticking a box.
Happy to supply a list of potential private carers but won’t make any recommendations.
I guess this is all down to her having to pay for everything herself.
Doesn’t tell us anything we didn’t already know.
Seems more akin to covering themselves and ticking a box.
Happy to supply a list of potential private carers but won’t make any recommendations.
I guess this is all down to her having to pay for everything herself.
alscar said:
TheHeadhunter said:
100% on the LPA. Health & Wellness is arguable the more important, but get Finance & Property as well. My in-laws are both f*cked, but having LPA for H&W saved both of their lives 3 years ago.
Also agree on Attendance Allowance. Non-means tested, £114/wk. So a couple gets c£1000 month. With carers at £14-17/hr, it covers a lot of care.
For having to deal with both my Aunt and now of late my Mum I ve found it s actually the Finance LPA has been more used than the Health one but obviously equally important to get both done at the same time and in plenty of advance time- better to have and not need rather than try to deal with without !Also agree on Attendance Allowance. Non-means tested, £114/wk. So a couple gets c£1000 month. With carers at £14-17/hr, it covers a lot of care.
On both having the access code capability has certainly made life much easier particularly on the Finance one.
Average charge for private carers seems more around the £25 ph though and then some charge for mileage on top and have a minimum time.
Mind you, that is engaging directly. Going through an agency, it's at least £25/hr, but the carers usually only get £13-14/hr.
TheHeadhunter said:
Not sure where in the UK you are, but we now employ 4 different carers to provide 8-10hrs care a day for my in-laws. We pay up to £17.10/hr (the local council (Cheshire East) recommended upper limit) and don't struggle to get applicants.
Mind you, that is engaging directly. Going through an agency, it's at least £25/hr, but the carers usually only get £13-14/hr.
Interesting - Mum is in East Sussex so maybe I’ll do some research on going the direct route rather than use the list provided. Mind you, that is engaging directly. Going through an agency, it's at least £25/hr, but the carers usually only get £13-14/hr.
alscar said:
TheHeadhunter said:
Not sure where in the UK you are, but we now employ 4 different carers to provide 8-10hrs care a day for my in-laws. We pay up to £17.10/hr (the local council (Cheshire East) recommended upper limit) and don't struggle to get applicants.
Mind you, that is engaging directly. Going through an agency, it's at least £25/hr, but the carers usually only get £13-14/hr.
Interesting - Mum is in East Sussex so maybe I ll do some research on going the direct route rather than use the list provided. Mind you, that is engaging directly. Going through an agency, it's at least £25/hr, but the carers usually only get £13-14/hr.
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