What/who to tell about DH's Dementia.

for all you brave souls

It is definitely the little things that are problematical - and that others notice and don't quite know how to react. My poor OH is trying very hard to organise all his tablets for the holiday and is getting in a bit of a pickle. I do not like to interfere, but it is critical that he takes the right ones with him and in sufficient quantity. The need to respect his autonomy has to be balanced against the outcome of not having the right tablets with him. It's a subtle balance to be sure.

My sympathy Granny23. My grandmother had vascular dementia and for six years I was responsible for an aunt and uncle who both had it.

But I am puzzled why you think that having a diagnosis for your DH's problems means fixing a 'label' on him. Would you feel the same if he had been given a diagnosis of cancer or motor neurone disease?

My feeling is that it is always best to be upfront with people and tell them that your DH is developing memory problems and could have dementia. That way, people close to you, whether family, friends,tradesmen or the lady in the post office will understand and make allowances for him and also let you know if he does or has to be discouraged from doing something that may lead to him harming himself. Many people in the early stages of dementia can look and sound rational when actually their thought processes are muddled.

I cannot thank you all enough for your best wishes and insights which have shown me that it is best to be open and up-front about DH's illness. We have had the 'conversation' and he does understand what is happening to him, has said that it is me he feels sorry for as I have had to shelf many of my own interests in order to undertake all the household tasks he used to do and to keep him company 24/7. He has also very reluctantly accepted that he will have to stop driving (but not yet!) For himself, he is happy as long as I am there and enjoys long chats about times past, his favourite home made food, our cat, sitting in (but not working in) our garden. He loves a good joke or funny story and with his memory loss, I can recycle old ones and he enjoys them afresh every time.

When DH was 17 and an apprentice joiner in his Grandfather's firm he contracted Polio and was left with a pretty useless left arm and missing muscles in both hands and shoulders. He returned to work, a 7 stone weakling, and suffered many unkind comments from his fellow workers and customers (was called a spastic and worse.) He could no longer swim or play tennis, lost many friends and his girlfriend, so took up drumming as therapy and has been playing in various bands continuously ever since, occasionally attracting comment because his style is very different from most drummers. Similarly, he was a successful joiner, using his ingenuity to overcome difficulties. Hence his objection to 'labels' such as disabled, deaf, polio survivor etc. and reluctance to be seen in public with a zimmer or wheelchair after his accident.

Annsixty I understand why you question your DH having Alzheimers rather than Vascular dementia as being a good thing. I know that this diagnoses means that our path will be shorter and steeper than yours which makes it easier to commit to making these years as sweet and happy for DH as I possibly can.

What lovely post G23! y

I presume that you have applied for all the benefits and assistance that is available?

Luckygirl, my friend had dementia and diabetes. She needed to take several different pills and her husband got the pharmacy to make up a 'pack' day by day in the order she needed to take them. I can't remember all the details but can ask if you want.

No - no benefits or assistance because of the prevarication with a diagnosis. Officially, DH merely has MCP (mild cognitive impairment) according to the Consultant's report. We were not sent this report but the GP was and gave us a copy. Apparently the Consultant told DH this during the consultation but as I had been 'pit oot' for the sin of 'prompting DH', I was not party to this or anything else that was said. DH, of course, could remember nothing of what was said, except that Consultant had told him he 'passed' the memory test. According to the report he scored 14/26 in the memory part of the Cognitive Testing tho' better in the other sections. Problem is that currently there is a vacancy

Hit Post too soon!

a Vacancy for a Mental Health Team for Older Adults such that DH was seen by a Locum this year and a different Locum last year - who diagnosed PTSD!. GP has now taken the matter in hand, made a provisional diagnosis and will write to Consultant with background information and involve CPN service.

After looking after relatives with vascular dementia I have always said, that if I had dementia that is what I would choose.

I have worked with people with Alzheimers and the thing that makes the difference to me is that patients with Alzheimers seem to lose their personalities completely and cease to be the person they were, unrecognisable and unrecognising. It is distressing often for the patient and certainly for their family.

My aunt and uncle with vascular dementia never lost their inherent personality. My uncle completely lost his short and long term memory. All we could talk about when I visited him towards the end was what we could see in the garden, through the window and what was in the room, but he would then talk rationally and was inherently the person he had always been, very courteous and curious. My aunt, although more prone to moments of confusion was the same. She had always been a very sociable person and always greeted me delightedly when I appeared, even if I had to remind her who I was, and she always offered me tea or coffee, although she had no idea where the coffee station was.

Thank you for that Monica DH has indeed remained as loving and lovable as ever. He still recognises and welcomes close family and friends but often forgets names so we all get called sweetheart, wee one or pal.

Granny 23, do take care of yourself. Easier to say than do. I am in a similar position to you. My heart goes out to you and to all those who care for loved ones with any form of dementia. Everybody around us, and there are many, know about my husband's diagnosis. A few can't cope and have gone under cover. The majority have been as fantastic as I expect they would have been if he had cancer or a broken leg. If people don't know or only know half the story they can't support you. My husband is a private person, but he is content for people to know. He is much loved.

I feel quite sad reading these comments as my H has had a complete change of character/personality and that is so upsetting and very hard to come to terms with. He is not the man I married. He is cantankerous and argumentative and not a loveable man at all. I have said before if I met him now we would not have got beyond a first date, It is my duty to look after him but increasingly hard to do with good grace.

Oh Ann that is so sad and it must be very, very difficult.

I agree with Anya, ann and I do feel for you and wish we could actually do more.

I assume you and G23 are receiving (or are applying for) Attendance Allowance which is NOT income dependent. If you haven't applied for it please ask AgeUk for help applying. They have volunteers who are training in using the right 'buzzwords' when applying.

It is worth over £80 per week at the highest level.

annsixty I do feel for your plight, as I said in a previous post I think those dealing with family member's with Alzheimers have the hardest row to hoe.

We were told, back in the late 1960s that my grandmother had vascular dementia, but with the greater knowledge I have now I think it was far more likely to be Alzheimers. The greatest sorrow to her daughter who devoted herself to her mother was that her mother had disappeared to be replaced by someone who didn't know who she was, who ceased to be the person she had been and was lost sad and alone in a world no-one could enter.