Looking back to early stages
- Thread starter BirthBlue
- Start date
We already had finance and health LPAs in place beforehand, for both Mum and Dad. Having tried (and failed) to arrange CoP for my Granny, I’d recommend getting LPAs in place while they’re still feasible. Apart from that, I don’t think we would or could have done anything else differently.
We were aware there was a problem with Mum - probably dementia - for several years before an emergency hospital stay triggered temporary delirium and an official diagnosis from the Memory Clinic. Ever since the initial test results, she hasn’t knowingly engaged with any kind of dementia care or services, and has to be tricked into attending regular checkups and medication reviews.
It might have helped her to start the Alzheimer’s medication earlier in the disease’s progress. But as she wouldn’t have believed she needed it (she still doesn’t), that would never have happened anyway.
We were aware there was a problem with Mum - probably dementia - for several years before an emergency hospital stay triggered temporary delirium and an official diagnosis from the Memory Clinic. Ever since the initial test results, she hasn’t knowingly engaged with any kind of dementia care or services, and has to be tricked into attending regular checkups and medication reviews.
It might have helped her to start the Alzheimer’s medication earlier in the disease’s progress. But as she wouldn’t have believed she needed it (she still doesn’t), that would never have happened anyway.
Hi @BirthBlue
My OH started getting symptoms 12 years ago. My top tip is to get help and support before you think you need it. I tried to do everything myself without any help and ended up with carer burnout which meant that I became totally unable to care for OH and ended up in hospital. OH had to go into respite for several weeks until I felt better and at that point we had to have carers coming in (even though he didnt want them). I also have a Home Help to help with housework and gardeners to keep the garden vagally under control. I wish I had insisted on getting people in earlier
My OH started getting symptoms 12 years ago. My top tip is to get help and support before you think you need it. I tried to do everything myself without any help and ended up with carer burnout which meant that I became totally unable to care for OH and ended up in hospital. OH had to go into respite for several weeks until I felt better and at that point we had to have carers coming in (even though he didnt want them). I also have a Home Help to help with housework and gardeners to keep the garden vagally under control. I wish I had insisted on getting people in earlier
Hi @BirthBlue
I’m in year five with my mum who was diagnosed in 2019. I spent three years looking after her at her home. She’s now living in a nursing home.
Looking back, maybe I could have organised LPA soon after my mum’s diagnosis - or even before that. I did try, but my mum always fiercely protected her own financial independence and never understood or accepted she was unwell. When I tried it was already far too late. If you can get LPA organised then definitely do that as soon as possible.
If I could re run the past knowing what I know now I would try harder to invest more in my future. By that I mean spend more time and energy keeping in touch with friends and maintaining more of a life outside a care role. I would say plan to do that very early after taking on care for someone with dementia. The demands of care can become extraordinary and overwhelm all other aspects of life. It can happen slowly over time, or due to a crisis which changes things very quickly.
I’m in year five with my mum who was diagnosed in 2019. I spent three years looking after her at her home. She’s now living in a nursing home.
Looking back, maybe I could have organised LPA soon after my mum’s diagnosis - or even before that. I did try, but my mum always fiercely protected her own financial independence and never understood or accepted she was unwell. When I tried it was already far too late. If you can get LPA organised then definitely do that as soon as possible.
If I could re run the past knowing what I know now I would try harder to invest more in my future. By that I mean spend more time and energy keeping in touch with friends and maintaining more of a life outside a care role. I would say plan to do that very early after taking on care for someone with dementia. The demands of care can become extraordinary and overwhelm all other aspects of life. It can happen slowly over time, or due to a crisis which changes things very quickly.
one of the things that i missed was with the LPA. I knew what it was and proceeded to get one some time before my piglet lost her power of comprehension, good so far, while it was being processed ( why are solicitors so slow) I found out that there are two, financial and health and welfare, nobody had told me about the health and welfare until it was far to late and piglet had lost the understanding so could not sign. Hopfully not a great problem but a worry I could do without.
Hello @tonebear I do not have POA for health and welfare and it did not cause any issues when my husband was in hospital last year.
This was our experience with my Granny, too. We never disagreed with the decisions being made by medical or care staff. It was the finance LPA which would have been more useful.
Thank you so much for your reply. That makes so much sense. There is the feeling we should ‘power on’ but it is interesting to think about getting external help now so we are not having to do it in a panic later on and can (possibly) discuss with my mum too.
Thank you so much for replying. Wise words. If already feels all-consuming, so a good idea to think about those other factors which will help us as carers.
I had both finance and health LPAs for my partner. I had been told the health one isn’t really necessary but when he went into a care home they wanted it. Also it means that the GP will talk to you about your person so I recommend you get both. A good idea to get them for yourself too, and that sometimes helps to persuade them if they are reluctant. Everybody should do it for themselves, it’s as important as a will.
💗 Hello
I wish I had recognised that things were not just 'older'age and maybe things could have been a little better although the outcome would be the same. Defo get LPA for health and finance, attendance allowance you name it go for it. Politeness but determination and persistence when dealing with professionals. They will disagree with you at times potentially but stay true to being your loved ones advocate. Don't give up. oh and take care of yourself because this is a long haul flight ...xx.
Don't promise to never put pwd into a care home. Say you will always care in their best interest, but that it might not be at home. None of knows how this disease will progress and there are far too many carers feeling guilt about not being able to manage alone.
@maggie6445 Definitely that. And don't think of a care home as being an admission of defeat. For both mum and her family, a care home turned out to be a really positive and happy experience.
I'd also suggest accepting every offer of help you can, even if you don't feel you need it right at that moment. Get on the local Carers' Centre list, and make sure you're on the radar for help now. Don't wait until you're at breaking point, or a crisis hits.
Keep a notebook - record things like meeting with doctors, nurses, social work; medication changes; -it helps you to remember what's been said by who. Also note down behaviour changes, safety concerns - the little details that build up a bigger picture of how someone really is.
I'd also suggest accepting every offer of help you can, even if you don't feel you need it right at that moment. Get on the local Carers' Centre list, and make sure you're on the radar for help now. Don't wait until you're at breaking point, or a crisis hits.
Keep a notebook - record things like meeting with doctors, nurses, social work; medication changes; -it helps you to remember what's been said by who. Also note down behaviour changes, safety concerns - the little details that build up a bigger picture of how someone really is.
