suggestions for coping with dementia and husband

www.dementiauk.org/get-support/dementia-helpline-alzheimers-helpline/

The above is the link to the Admiral Nurses help line.

Kittylester
Lots of people caring for dementia sufferers don’t know about the plateau
I’ve not long witnessed my friends mother going through one.
I support a neighbour who is in the early stages of the disease and it’s very obvious from incidents last week that she is going through one.

sorry for long delay in replying but i have taken your advice and spoken to my own gp today and said help required now and some sort of ongoing assessment result admiral dementia nurse and consultant coming tomorrow. Amazing what money will do, also physio coming next week and hearing team. I would never have been brave enough without all your kind encouragement so many thanks.
I dont think i said in original post, husband is completely house bound so unable to visit groups or go for respite days which is a shame but at least something is happening now and thank you all again you have given me new heart and i am most grateful

also look up your local carers' centre, sometimes called princess royal centre.
they are for family carers like you and can advise on many aspects, they know the local provision and have contacts.
and may have low cost sitters who could come in to give you a break.
good luck.

I second the Alzheimer’s Society Talking Point forum. For several years it was a lifeline for me.

Whatever you’re going through, someone will have been there. There aren’t often any easy answers, but at least you can always offload to others who know exactly what it’s like.
So few people who haven’t had to live with it, ever have a clue.

All too often they think they do, though, and like to give you the benefit of their ‘wisdom’ ?

yes, like the relative who only sees the person once or twice a year, telling the carer, don't keep on at him, don't tell him what to do, there's nothing wrong with him, you;re too bossy etc.

Exactly, Welbeck - not to mention ‘a healthier diet would make a big difference (never mind that she simply wouldn’t eat it) and ‘You should make her do that herself - use it or lose it.’

No comprehension of the fact that she had already lost it!

Oh, and the aunt from Canada who said it was no wonder, when she was just watching TV all day. Now, if she was only more like the sprightly 91 year olds at her church…

Bugger off!

Canarygirl1 - day centre or respite are still possible even if his mobility is impaired. OH went to respite in the local hospice - we organised a suitable wheelchair taxi. You can get a wheelchair via local occupational therapist (ring social services) or hire from local Red Cross.

I agree about the useless advice that sometimes used to wing its way to me. I had to ring 111 for my OH because he was in acute abdominal pain caused by severe constipation - they sent an ambulance.

The very young girls who arrived sat down and lectured him about intake of roughage, fruit, liquid - what a joke.......
- my OH was a doctor so this information was entirely superfluous - the constipation was caused by his illness slowing his gut.
- my OH was weeping in pain - hey - have an apple - that will do it!
- he had a serious impaction that needed immediate treatment.

Eventually I managed to get an on-call GP out (it was of course the weekend) who did a manual removal.

welbeck

yes, like the relative who only sees the person once or twice a year, telling the carer, don't keep on at him, don't tell him what to do, there's nothing wrong with him, you;re too bossy etc.

Oh yes! ?

...and the people who try and correct them every time they something papably incorrect or feel that they should always be told the 'truth'.

When in care my uncle, who had designed and built his own conservatory, in his younger fitter days, kept looking at the conservatory in the care home and telling people he designed and built it. Some of the carers would always contradict him, which caused upset and confusion. I always agreed with him, and did my best to make sure everyone else did. What did the 'truth' matter, compared with his mental comfort.

My BIL had Parkinson's and a carer came to his home one morning per week in order to provide my SIL with some respite. They also had someone come in mornings and evenings to get my BIL up and put him bed.

My own Mother developed pre senile dementia when she was 53. A few years later it was diagnosed as Alzheimers. In the early stages she realised that something was wrong but she thought that she had cancer. At first people realise that they are ill and as they reach a plateau and then deteriorate some more they gradually lose their reasoning and sense of what is happening to them. Watching someone with this disease is dreadful for the family as they lose their loved one but can be a relief too because the loved one is not aware.

My Mother was assessed over a two week period at UCL and then referred to a geriatric doctor in her home town. When I visited him I discussed what we should do and his response was that you'll know when the time comes. Very helpful! But he also warned against trying to care because it was very difficult and, especially when a relative is the sole carer, after the Alzheimer's sufferer died it was often necessary to then care for the carer. Or "pick up the pieces" as he said.

My Mother lived for about 10 years after the UCL diagnosis.
A large part of that time was in a residential home and they kept there and cared for her rather than send her to a nursing. The staff were very kind. When I visited I used to take my two dogs and most of the residents were very pleased and vied with each other to pet them. One or two moaned but most of them had had pets of their own and loved seeing them.

I was in my early thirties when she had her UCL diagnosis. My father had died of cancer two years earlier and we were all very glad that he did not live to see my Mother deteriorate.