Dementia

I should have added that this should not stop us trying to control it or find a cure. It is an awful disease.

DT online today "Middle aged are beating dementia by healthy living and lifestyle changes". Oh really!! My H couldn't have told you the name of our GP (well still can't actually but that's the other side of the story) as he never had need to go to the surgery. Never overweight, blood pressure readings always fine and as for playing sport,football and cricket as a young man, weekly squash and badminton, and then golf until a few years ago, four times a week. We took up walking in our 40's and kept that up until about 4 years ago when he started losing interest in most things which was the start of his Alzheimer's. So what did we do wrong. It was stressed when he was diagnosed that dementia can happen to anyone and then I get very upset and angry by being told we could have changed that. How?

I was" composing" my post while the last people posted but we obviously all read the same report.

It's the blame game again annsixty. The other side of "Middle aged are beating dementia by healthy living and lifestyle changes" is "those who get dementia are to blame by not living healthily or changing their lifestyle so we do not need to provide proper care".

Like you I do not believe this to be the case but rather that, as I said, I would guess the huge rise was due to better diagnosis and the continued smaller rise to an aging population. Find the cure or treatment guys ... do not blame the person with the illness. I sometime wonder just how nasty the press, and some people who like to blame, can get.

www.cam.ac.uk/research/news/dementia-prevalence-figures-in-the-uk-show-decline-over-past-20-years
This is a link to the press release from Cambridge University, and it says nothing about the fall in dementia prevalence being related to taking more exercise or eating more nutritious food, so it's safe to assume that the DT journalist made all that up. After all, 'scientists' predictions from 20 years ago were wrong' isn't a very good headline, is it?
All the scientists refer to in the press release is 'modifiable environmental risk factors' and no blame is cast anywhere.

Gracesgran I don't think it was the case that in the 90's there actually was a huge rise in the number of cases diagnosed, rather that the scientists predicted that there would be, working on the incidence at the time and the projected increase in the numbers of older people living to an advanced age.

Annsixty for you.

Hi, I'm an 'old newby' if that makes sense. I joined Gransnet quite a while ago but haven't posted for a long time.
My husband had early onset dementia, he was 50. I cared for him for 6 years and he went into hospital to be assessed because he was having 'psychotic episodes'. From hospital he went into a home. He's been there for 8 years now and was 65 last month.

I found the Alzheimer's Talking Point forum to be very informative.

Sue

Minder I never thought I would even think,never mind say, but I am horrified by how long some people live with dementia. My DH is 79 and I am 78,he has never been ill and could live years longer than me. I am so sad for you that your middle years have been stolen from you both, no happy fulfilling retirement to look forward to and enjoy. Family life must have been so difficult. for you.

Minder and Annsixty

So sad that those years were stolen from you both

I've pm'd you annsixty

I am so pleased to hear you "say", what others must often think, out loud annsixty. I care for my mother and will say as often as anyone will listen that I have no idea how spouses manage. This awful disease never affects just one person.

Minder
annsixty

www.dailymail.co.uk/news/article-3209629/Prunella-Scales-s-dementia-bad-forgot-d-just-seen.html

We've been enjoying the re-run of Canal Journeys. So sad that her condition has deteriorated.

There is a lot to say in favour of just agreeing with the confused remarks and comments of someone suffering from dementia. When my elderly mother talked about the kittens and puppies in the hospital ward, I just chatted away about how nice it was to see little animals.

However, when she was hallucinating about people who were going to kill her tonight, telling me how the nurses were going to pull out all the hair on her head, how they – whoever "they" were – knew about the whereabouts of absentdaughter and were now after her, how they were spying on her through the window (three storeys up) and so on, I don't think agreeing would have been the right option. To be fair, this wasn't senile dementia or Alzheimer's but a terrible mental state brought on by severe MRSA. I visited her every night in hospital for three months and left in tears every night after trying to allay her fears and comfort her. Then, suddenly, I arrived one night and asked, "How are you Mum?" expecting the usual outpouring of how "they" measured her poo, how "they" had ordered the flowers for her funeral, etc. and she replied, "Not so bad dear". I cried that night too – with relief.

annsixty you are so right, and so honest.

cherrytree59 the best you can do is write a list before you go, with examples of what she does and when, plus what she really needs help with.

My mum was prescribed memantine in April after a sudden really bad deterioration. It has made a big difference, reduced her desperate anxiety and determination to escape (from her own home which she did not recognise), and reduced very aggressive behaviour. No UI, but we did wonder if she might have had a small stroke. She is still on 20 mg a day which we are going to try to reduce to 10 on medical advice. Dreading that, tbh. I have researched everywhere I can find to see how long the memantine will work: all the studies only seem to have been for a year, so it seems to be anyone's guess. And then what happens? I can't find that either.

We were told that Memantine was the last thing to try and DH is doing ok on it so far.
I have said before that DH is not yet at the stage so many of you are coping with .he knows who we all are ( not neighbours or former colleagues) but all close family but he is anxious to a point of paranoia and cannot answer the phone or change programmes on the television and can't understand any post. It is a jumble to him. I could go on but I won't ( relieved emoticon from you all)

Sorry I have taken so long to reply. I was 'being admin' in other groups.

Thank you ladies, it's true, you do feel like your life has been stolen from you. None of us ever thought my husband would still be here. He's been rushed into hospital twice, one we were told by the doctor he wouldn't make it through the night. That was almost 4 years ago, 3 weeks after I'd lost my Mum. He is a shell, there is nothing there at all, he has to be lifted from the chair as he doesn't weight bear now yet he seems so strong. If he gets hold of my arm, I don't get it back until he's finished with it lol. I could be anyone visiting him, he doesn't have a clue what is going on around him. He eats like a horse though, you have to be very quick with the next mouthful, he sits there with his mouth open and you mustn't put your hand near his mouth or he will bite you lol.

I've had a DNR for him for a few years now and recently I've told the home and our GP that I don't want treatment for him should he get pneumonia again. He gets chest infections but if they can be treated at the home with meds that's fine. I want him to be kept comfortable and pain free to 'go'. I know he wouldn't want to be kept alive as he is. We did talk about it many years ago, before he was ill when we knew someone who was seriously ill.

When he started being ill, there were meds that would supposedly keep the dementia at bay for a while for some people. At that time NICE refused to give it because it was too expensive. I remember going on a little protest with the Alzheimer's Society in our town. We walked in the pouring rain with our banners up to our local MP's office.

I can believe you cried Absent. Annsixty, Anya, Gracesnan, sorry if I missed anyone out, thank you, I retired myself a year ago and keep myself busy but I don't drive so I'm usually at home, which is fine. I'm going to start using my shiny new bus pass!

Oh and there was a ' young lad' in my husbands home who had dementia and he was 44 years old and had a 10 year old son.

That was a very moving, and terrifying, post minder. I hope you have good support from family and friends x

I have two sons Anya, one is 40 soon and the other 44 but they don't live near me. We just get on with it don't we. x

(((hugs)))

My dad has vascular dementia and it terrifies me at how this will progress, although I will be there with him every step of the way.

For anyone who has or has had a parent with this atrocious disease, do you worry that you will get it too?

to all.

minder and others, you may have seen my earlier post on this thread, my MIL has had Alzheimer's for 20 years now, since she was 66. She has been "unavailable" to us for at least 10 of those years. Prior to that she was confused and no longer capable of functioning properly. Physically she is as strong as an ox, the doctors joke and say it is her Scottish constitution. Recently a doctor said she was the longest living Alzheimer's patient he had ever come across. She is now completely unresponsive and in a wheelchair or in bed.

I often wish she would die, because to me it is as if she is imprisoned.

I forgot to add, unresponsive apart from when she eats! Much the same as described by Minder.

GrannyknotI understand how you feel. Towards the end of my mother's life, when she was still living in my house, I would say to her each night as I settled her in bed, "Goodnight, God bless, sleep well, see you in the morning," and every night I came as close to praying as I ever will that I would see her in the morning but she wouldn't see me. I truly wanted her to die peacefully in the place she had come to call home surrounded by people and pets who loved her and whom she loved. Sadly for me – and her – that wasn't how it was.

Rubylady, Fortunately, no-one on my side of our family has ever had dementia but my husband has two daughters and we talked about the possibility of them getting it quite a long time ago now. They were in their early 30's then. They decided that 'if you're going to get it, you'll get it, why worry about it or try to find out if you have the gene'.

Grannyknot, it's amazing how they keep going isn't it. They must have strong hearts. Steve has had it for 15 years now. I have to say, I do wonder how long he will carry on and I agree with what you said, I often wish he would die too because he is imprisoned. I've lost count of the residents in his home who have died since he's been there and a couple who were younger than him.

Absent, I'm so sorry your Mum didn't go peacefully in your home.

X

Mum had mixed dementia. She died 18mths ago. We consider her and ourselves lucky that she only had symptoms for about 3 yrs. She already had mobility problems when she was diagnosed so no wandering or lots of other problems carers have to cope with. She spent the last 9 mths of her life on a care home. She died because she just stopped eating and drinking.
Yes I do think about whether I will suffer myself, but as another poster said "if it's going to happen it will" so I try not to worry every time I can't remember someone's name for instance.

absent I'm sorry to read that too.

When I can be objective, I wonder - what is it that eventually causes the death of someone who is physically so strong, yet has Alzheimer's? Do they develop respiratory problems from being bed-ridden? Does the disease affect their brain?

I see nina says her mum just stopped eating and drinking.

Sorry if me being objective is distressing, but sometimes I can't help wondering about it.

for everyone dealing with it.