Dementia

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.

(((hugs)))

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

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

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.

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)

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.

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.

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.

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

I've pm'd you annsixty

Minder and Annsixty

So sad that those years were stolen from you both

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.

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

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.

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.

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

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

I do blame the press for winding these things up. They have, as you say, discovered that the huge jump will not continue but the a smaller rise will.

I imagine the "huge" jump was because of the under diagnosis previously and the continuing smaller rise is because of the larger cohort living longer. Simples - but not for the "how can we frighten you today" press.

What should we make of this. If you were going to get dementia if you lived long enough in the past, you still will. If you were not, you will not.

Some good news folks - apparently the report that suggested that level of peop!e suffering from alzhiemers will get worse was probably incorrect, by at least 22%! So we can rest easy!!

cherrytree

My MIL was diagnosed with Alzheimer's 20 years ago. In terms of the progression of her care, it went like this: her husband looked after her at home till he could no more. When he died, she was more or less at the stage you describe and had a carer come in in the morning. It took a while for the penny to drop (with us, her family) that she could no longer live alone. She then moved in with one of her daughters and has been there ever since (about 12 years). Although in an advanced stage (in a wheelchair with eyes closed and no speech), she is physically strong because she loves her food. She will open her mouth to be fed.

're the white lies, it makes it easier if you play along, or "become the person" she thinks you are. We used to like play acting with my mother-in-law. My husband (her son) was at various times her brother, her father and "the doctor". The most difficult but was when she would embarrassingly and openly flirt with any (non-family) male that came into the house! You need to keep a sense of humour.

It can be a long haul. Good luck.

It depends on the stage they are at usually, though. Those with times of lucidity can be very good at seeming totally capable when being assessed, much to the horror of their frightened DCs.

Just read this.

theconversation.com/we-all-know-about-dementia-but-the-lives-of-the-most-vulnerable-make-for-sobering-reading-44605

Apparently 25% of people with dementia live on their own. I fond that thought quite frightening.

I went to visit my mother-in-law on Monday, and she was asleep most of the time. They lifted her out of her chair and put her in a wheelchair to take her through to the dining room. She never opened her eyes, never ate or drank anything for the time I was there in the dining room.

I've sent a message to my brother-in-law to find out what her wishes are as far as being fed in this state but have not had a reply about it.

My mother has been on it for 3 years although I had read it looses its effect after about 18 months. If you have been told two years hildajenniJ then there is a good chance no one actually knows. She could only go on the lower dose - we had the most awful (aggressive) week when they tried the higher level. The nurse said "oh yes, it can over stimulate the brain" ... she got that right.

UTI's are a definite problem and they seem to increase with older ladies. They certainly cause confusion.

I used to telephone mum morning and evening Cherrytree and it was a little hit and miss but then she had a TIA and I knew we could not rely on the phone calls. When I asked about carers to give the meds I was told we could not get them through the local authority. As I understand it, if she had a medical condition that stopped her taking them she would get the help but not for a mental condition [growl emoticon]

Because of this we pay for carers (mum does but I have POA) for 15 minutes. Originally, on leaving hospital after the TIA we had them morning and evening but I realised the hospital had altered her meds - adding one - moving when she took them so she was only taking one in the evening. I rang her doctor who is also her practice care coordinator and asked it was possible for that to be taken in the morning. It was so we only have carers in the morning plus a longer one once a week when mum has a shower. The carer gets other jobs done for her while she is there as mum has a wet room and can manage - although it's extremely exhausting for her but she likes to do it herself, understandably.

One thing I keep telling people as I didn't know I didn't know until recently - three years after mum's diagnosis - is that most people with it are exempt from Council Tax under the Severely Mentally Impaired Person's Discount. The council will contact your doctor to check there has been a diagnosis and the person needs to be receiving one of a list of benefits - Mum was on AA. We did get a refund and not paying this helps to pay for the carers.

I hope this helps Cherrytree. It is such a minefield and by swapping information on here we should make it a little easier for one another. Mum will be 95 in a couple of months by the way and is generally happy - as long as we don't disagree. Not always possible if you are to care for her real needs but it is amazing what you can say that means one thing to you and another to her and I love your "oh just the same" harrigran