Alzheimer's and living with it.

Ann, as you rightly say, many of us are/were in similar situations. It does help to know you are not alone but you definitely need to have meaningful conversations, either on here or with others. Having had my mother with Alzheimer's living with us for over 5 years (now in a care home), there are times when I worry that OH is heading that way too. As others have said, get as much help as possible from Alzheimer's Society, local council, family, friends, etc and look after yourself.

Oh annsixty, I do feel for you. My mum had this horrible illness and, yes, it does get you down. I now volunteer with the wonderful Alzheimer's Society and, as silverlining said they are a great source of support. As well as phoning, there is an online Forum, Talking Point, which was my lifeline during the dark days of my mum's illness. You can share absolutely anything on there and get a supportive answer. There are also people on there from the Alzheimer's Society itself who can help with anything which needs more expert knowledge. Sending hugs and thoughts. xx

If it makes you feel better to unload on here, you go for it! And please don't feel guilty about it.

Hi Ann, my husband had dementia: Posterior Cortical Atrophy like Terry Pratchett (sadly passed away last year aged 71 after 15 years with the disease). I have been where you are now and I need to say this: 1) How you are feeling is a normal reaction to an abnormal situation - don't feel guilty! 2) You must get as much respite as you can! Does he go to day centre (my husband wouldn't), but I organised for an Age Concern person to take him out one day a week, and later a friend did the same. Are you getting support from the Alzheimer's Society? Is there a local Dementia Action Alliance (an Alzheimer's Society initiative under the umbrella of 'Dementia Friends'). Are you in touch with your local Carer's Association? Take all the help you can get to recharge your batteries. As a friend of mine (who was looking after his wife) said, this is the job you didn't apply for, didn't want, aren't qualified for, but you are doing it nevertheless. The disease will sadly take its course with your husband, but you must try to stay healthy for yourself as well as him. 3) See if you can get some counselling to deal with your feelings. I had some which proved very useful - I was tortured by watching a man with a PhD from Cambridge deteriorate to the point where he was like a toddler following me around the house. I needed the space to talk to someone entirely neutral. Now that my husband has gone, my tribute to him is working on the committee of the local Dementia Alliance to make ours a dementia-friendly community, so that things will be easier for others living with dementia in our community than they were for us. I'll be thinking of you - pm me if you think there's anything.

annsixty I am sorry to hear that some friends have dropped you, it's as I said in a previous post, they are embarrassed, don't know what to say, think there's no point. What they fail to realise is that you will feel more supported and not so alone if they just did what friends do, which is to be there.

I am glad your women friends are still around for you, And know all too well how lonely it can to be a carer, it's a very difficult and demanding role which none of us want. Be of good cheer and hope today has been better than yesterday. My thoughts are with you and anyone and everyone who is in this sad frustrating and exhausting situation.

My friend has not as far as I know made any arrangements to deal with his finances or anything else. He told me he was going to the bank this morning but I don't know what about or how he coped. Unfortunately I can't rely on what he tells me as he gets things wrong . At the moment I am waiting for his sister and nephew to return from their holiday and I will speak to them and pass on your advice. I know they are concerned .

My mum is in a dementia home now and I hate every visit as she now doesn't know me on a good day she ,Sy say 'friend' it's so hard and she has been slipping away for over three years now and God forgive me but I hope she just goes in her sleep peacefully and without any more pain. She is I continent and can barely feed herself she just sits in a chair sleeping most of the day. No life. I feel for you I really do I couldn't bear to watch my husband go through this but know if it did happen I would give it my best but it's not just their lives that are taken but iurs too . I wish you strength and hope x

I really don't know how you all do it. You are amazing and selfless.

I am sure that if my husband became a sufferer I wouldn't be able/prepared to look after him and I certainly don't want any of my family to look after me if I become a sufferer.

I don't know what the answer is, but assisted suicide whilst fit to make any decision looks an attractive option to me. Our generation has always taken control of our life, surely we need to take control of the manner of our decline/death?

Ann don't feel guilty and to all you looking after loved ones with this horrid illness you deserve a medal I had two colleagues who were only in their forties and fifties when they showed signs of this both of them died well before retirement age . I looked after people with Alzheimer's and saw how and it was for families seeing their deterioration and how hurt they were when mum,dad didn't remember them . I found it hard but I got to gohome at night . Bless you all x

I care for my Dad who is 88 and was diagnosed as having Azheimers 4 years ago and the disease has progressed significantly over the last year. He is a widower and lives alone 10 miles from my home. I can sympathise with Annsixty as she is with him 24/7. I visit him 5 times a week spending a few hours with him each time. My sister calls on him on the other 2 days. I am finding the visits so wearing as he tells the same stories over and over and will argue with every thing I say or suggest. I have to control his medication as, although I put them in a box with the days of the week on them, he never knows what day it is and on at least two occasions has taken them twice in one day. I have to leave clean clothes out for him or he would never change them and then he often puts the clean clothes back in his wardrobe so I have to keep pulling them back out. He flatly refuses to change when I am there as he dresses when he gets up from bed at 5am.
I know there is help out there which I have been trying to get from the local authority for the last 12 months. To date, the only help they have given is to take him to a community centre for a few hours on a Wednesday. Then I had to call on him to make sure he had had his lunch and was clean, tidy and ready to be picked up by 12.15pm as he would forget he was going out. That lasted 3 weeks when I was told that if he wanted to continue to go he would have to arrange a taxi even though they are aware he is not capable of arranging anything. He has now started to have meals on wheels which is a help as I had to have his cooker disconnected over a year ago as he was leaving the gas on so had to get to him by 11.30am to re-heat the lunch I had bought or prepared earlier. I could go on and on about the problems I have with my Dad and although people I talk to sympathise I don't think anyone can really understand unless they have experienced caring for someone with this horrible disease. Unfortunately, it has got to the stage where I am so stressed and anxious it is affecting my relationship with my husband and family. So Annsixty, I am not sure if it is better to live with someone with Azheimers or worry about them 24/7 when you are not with them and don't know what they are doing.

I have only just now been able to follow these moving posts. My husband of 64 years was diagnosed with Alzheimer's five years ago and for the first two or three years life continued almost the same. The medications kept him on an even keel. And I did not realise how dramatically life could change so rapidly. Medications were adjusted several times , his driving license was, rightly, given up.

He now has taken to walking out on his own even at six in the morning. Fortunately we live in a small village, the people in the shops are amazingly kind, and neighbours guide him home if necessary. I have to watch him in the house all the time and cannot even garden without being followed. He needs constant help with everything. I found shaving him very scary and tried an electric razor but it doesn't really cope with his stubble. He hates showering and cleaning teeth, is sometimes doubly incontinent. If I get enough sleep I can cope with most things and with help from our children life I usually do but it is tough.
OH cannot cope with TV, read books or papers nor follow a discussion. Does not recognise family members but does know "They are nice people" so I'm thankful for that. He has no idea I am his wife and showing him photos doesn't strike any cords..mind you, when he commented on our wedding photo "you don't look like her" I said he'd changed a bit since then too. We compared wedding photos taken 1952 and wedding photos taken on our Diamond wedding , looked in the mirror and both laughed. Laughter was good medicine.

His world centres on walking round the village, eating meals, especially cake, and talking to people. I am lucky to have someone to come in most days to take him for a drive so I can do a few chores, etc or even get my hair or nails done. And catch up on Gransnet!

I have found that :
NEVER ARGUE
ALWAYS TRY TO AVOID CONFRONTATION
AND TRY TO KEEP A SENSE OF HUMOUR.
ALSO MAKE SURE KEYS TO OUTSIDE DOORS ARE WITH ME AT BEDTIME,!!

Reading all the posts has done wonders for me. The words of encouragement and advice helped me enormously. I do not get much time to follow all gransnet posts but I'm so glad I managed this one.

Bless you all, and thank you.

PS. we saw a psychiatrist at a memory clinic recently who said we should NOT have a glass of red wine. In fact, no alcohol at all. Anybody else been told that?

Dementia tends to creep up - one minute you are with someone who is a bit forgetful and you soldier on; then suddenly you realise that this person barely recognises you and is truly sick.

I send all my good wishes to all of you who are struggling with this cruelest of illnesses. I watched my mother go through this, and my OH has PD and some days there are signs that cannot be dismissed that his cognitive functioning is struggling to cope. I am lucky to have very supportive family nearby.

moybenmar sincere condolences in how your husband has deteriorated. It is two and a half years since we got our diagnosis but of course the symptoms had been there two years before that. My H is not as far on as yours and like you the first two years were not bad and you get lulled into thinking Oh we are going to be lucky, he isn't going to be too bad. My H is on Memantine but it does nothing for his memory which is very short indeed. Because he will watch the football this afternoon I went for a bath, just relaxation, he was looking for me within 15 mins and then is calling upstairs are you coming down, when will you be down? It is so wearing day after day. He does know all the family still but doesn't remember details of their lives and I get weary telling him over again but of course you know all this.
We have the paranoia about phone calls, letters ,conversations, as he says you are talking about me again.
I have asked about alcohol and told it is ok in moderation but whatever I am certainly not telling him he can't have a G&T and a glass of wine with a meal a couple of times a week, and if he doesn't need it I do!!
Do keep posting and tell us how you are coping, we will all support each other.

Thank you Annsixty. Husband just popped out for yet another stroll so am able to pick up yours early.

He is on 20mg memantine in the morning and also 15mg mirtazapine at night. The nighttime pill must be dissolved on the tongue and not swallowed which took a while to get right. They first tried 3.75mg Zopiclone tablets at night but were not a success, but mirtazapine seems to settle him at night for a few hours.

Have no trouble about phone calls as his hearing is incompatible with phones and he refuses to have anything to do with mail although always asks about the contents. Never remembers anything, just says "you deal with it". He used to cope with all the paperwork but not anymore. At first I was all at sea with it and providing he doesn't "help" by tidying everything up it's fine now. He's fanatically tidy and everything is straightened, tidied and put away, sometimes ending up in very odd places! You have to laugh, or you'd cry, but seriously there are times when it is possible to work out why he put things there.

Husband too wants me in his sight all the time - reassurance that he is not alone, I guess. I too get weary of answering the same questions time after time (usually in the evening after 8.00) when I would prefer to read or watch TV. I recently discovered that playing some old records and tapes of 1960/70 music gives me a few minutes peace, especially in the morning.

We were quizzed at the memory clinic on our diet. I said we had a glass of red wine with our evening meal and were a bit taken aback when told it was not a good idea! We have found a Sainsbury's non alcoholic wine (about £2.50 a bottle!)which looks the same which we produce whenever we get the opportunity - at family gettogethers, etc. He has also lost his sense of smell (which was actually first noticed many many years ago) and he no longer seems to taste anything; not even when the potatoes "caught" in the pan. (Yuck, they were horrible, as were the carrots).

Just quickly, my H's loss of sense of smell and taste were one of the first things I noticed.
Also he would eat chocolate and ice-cream all day if I would let him which he never ate before!!

Annsixty
So sorry to hear of your husband's dementia, and all the other GN'S who are caring so well for their families. Don't know if you have Admiral Nurses in your area but they specialise in helping people with dementia. They also have nurses who assist carers to manage things. Alzheimer's Soc will know if they are in your locality. Remember to care for yourself too and don't feel guilty at taking some me time.

It's sad to read of so many caring for a loved one with dementia, please never be afraid to have moan...after all it's not really moaning it's just saying it how it is and being honest enough to share how that feels for you. Hopefully folks responses are helpful and supportive, after all none of us knows when we might need to sound off ourselves about something.

I went to see my newly diagnosed friend this morning. He seemed cheerful in spite of being told to stop driving, which surprised me. He has been prescribed pills by the memory clinic doctor, don't know their name but assume the are standard. Anyone have any experience of these ? Are the likely to help ? If he remembers to take them of course ....

That's interesting about the sense of smell/taste. My DF suddenly developed a liking for brown sauce, strong flavours etc, which we put down to an age thing rather than the dementia. Prior to that, he wouldn't have touched them with a bargepole!

Strange things happen with language too. My dear mum spent her first 24 years speaking her native language before coming to the U.K., after the war. She spoke perfect English for the next 65 years, so much so that other British born friends would check spellings/correct English with her. However very shortly after diagnosis she completely lost her English. I think it happens sometimes, but it was very unexpected and made things quite difficult as the staff in her nursing home were unable to communicate or understand her. Made what is a stressful situation even worse.

My dear brother is about to go into a dementia care home. My SIL has done all she can but cannot cope any more. My brother had no idea of what is going
on or who anyone is. However, (please note all those who are having problems with loved ones) although my bother has no idea on a day to day basis what is going on and cannot make any sense in any way, he knows who my SIL is and shows love for her. He doesn't know her name. Gets angry cross and can be aggressive but he still loves her. You can se it in the odd moments when for a few seconds he returns to the person we know and love.

My brother has advanced dementia now. Has not idea what is going on or where he is but the love he once had comes through for a fleeting second. To all those who are going through this terrible disease please remember the love you once had is still there. It may be buried deep under the loss of memory, but it is still there. My thoughts are with you all

I send my very best wishes to you and all your family Crafting. I have had a very difficult few days with H, he has suddenly starting saying things like" I am stupid, I am thick" when things go wrong and being so dependent and following me from room to room that I am almost screaming. My GD has been today and cooked a meal for us but he treats her like she is 5 instead of 17. Fortunately she is mature and copes with him which is good as she is coming to sleep while I have my TKR .
I confess I have had half a bottle of wine tonight to try and wind down. I know it isn't the answer but it helps.

My heart goes out to you ann and all impacted by this terrible illness. When I worked we would often tell each other "whatever gets you through it, as long as it's legal". Do what you need to.