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New and in need of wisdom - Carers UK Forum

New and in need of wisdom

For issues specific to caring for someone with dementia.
Hi everyone
I don’t suppose my issues are new, but they are to me and I sorely need some of your thoughts.
My mum is 90 years old. She has been suffering with memory loss which has become substantially worse over the past year. She doesn’t have a diagnosis beyond mild cognitive impairment but that was quite a few years ago. Mum lives on her own and has had carers in the morning and for part of each day. She rarely eats, although meals are delivered and her memory is now little more than a minute before she asks the same question again.
Over the very hot weekend we had three weeks ago mum simply did not drink water and the result was a hospital admission with acute kidney failure. We nearly lost her. The hospital discharged her to a nursing home and she believes she is there for convalescence. She has always been so determined that she doesn’t want to go into a care home. In my heart I know she needs to be looked after but I feel so guilty. I am so exhausted and the worst thing is I can’t visit at all at the moment. My sister is our nominated visitor at the moment. Mum keeps asking when she can see me and I keep saying soon.
Financially we would need to apply for funding for mum, I am trying not to get ahead of myself, but my head is just full all of the time. I know I need to focus on what mum needs and not what she wants.
First a foremost I want her to be safe, with everything we had in place for her at home, she ended up in hospital. I just can’t see myself coping if she goes back to her flat. So many times I feel like getting in the car and driving in one direction away from it all. Is this normal??
It’s a horrible time for you Susan and I’ve been there. Sounds very much to me like she has dementia like my Mum. Are you going to seek a diagnosis?

We did all the thing of having carers come in in the mornings to help her shower, dress etc and that worked OK for several months as we both would have preferred her to stay in her home. However, when she forgot how to use her microwave and could no longer operate her reclining chair she was not safe. We were also terrified she would have an accident on her stair lift as she kept hanging clothes on the banisters which then fell into the mechanism (sometimes when she was using it) and we were paying £100+ for the engineer to untangle it all at regular intervals.

At least if you think your Mum is eligible for funding that’s something. My Mum had to sell her modest house and is paying £900 a week for her care and she gets no help whatsoever. It breaks my heart that she and my Dad worked so hard and went without to buy their ex council house.

You haven’t said that your Mum is unhappy in the care home so that’s a positive thing.
Susan_200812345678 wrote:
Sat Aug 29, 2020 4:30 pm
So many times I feel like getting in the car and driving in one direction away from it all. Is this normal??
Yes, perfectly normal, and in retrospect you'll find it the most sensible option. There is no need for any feelings of guilt, it is nearly always too much for one person to cope with if they want to have any sort of life for themself.

Your Mother is nearing the end of her life, at a guess her cognitive impairment is considerably worse than when she was tested - she has already demonstrated this by nearly killing herself through lack of drinking.

Apply for funding by all means, (check out CHC funding) but don't get roped into contributing yourself, it's not necessary and you can't be forced to pay - not even "top-ups". Neither can you be forced to do all of the caring duties.

You are completely correct in that you have to focus on what Mum needs, not what she wants.
Completely normal.
Realistically, even if mum gets over this current crisis, she is nearing the end of her life, and her needs will just increase and increase until she passes away. Sad, but true. You role is making sure that mum has the care she needs. You have done your very best, as I did, but one person can never provide the 24/7 care in a nursing home.
As regards finances, things are a bit odd at the moment, because of the virus etc. I believe that if the hospital put mum in the home, then the NHS is responsible for funding her care.
You must NOT sign anything at all at the home, however much they press you to do so. If you haven't signed a contract, you are not responsible!
Does mum own her flat outright?
Google NHS Continuing Healthcare - it's a postcode lottery but mum might qualify, then free care!
Take this weekend off, recharge your batteries, and then gather together all the financial documents you can find and put them in order.
Thank you all for your comments. I really appreciate your taking the time to read and reply.
It is a cross between snakes and ladders and a roller coaster ride. Try to look after yourself too, easier said than done. If you are not sure that officials are being open and honest, telling the truth, feel free to ask us "Is this right...?". I reclaimed £8,000 from the LA when they didn't apply the rules properly!