To think that the reality of Dementia is misunderstood

[TheMustressMhor]

I think that most people cannot understand what the real day-to-day challenges are for relatives of people with dementia.

Until your elderly relative is diagnosed with this, you probably only have a hazy idea of the realities.

It has only been in the recent past that dementia has been given as a cause of death on death certificates.

AIBU to think we need to educate ourselves more?

I have found this to be the most helpful website on advanced directives
compassionindying.org.uk/

there is also a link in it for an advance decision form which enables you to give specific instructions for different scenarios and helps to ensure that you wishes are conveyed accurately.

I spoke to my doctor about mine and she told me to send a copy to the doctors and it will be kept with my notes.

I 'update' mine every year.

I don't change anything - or very little, just the fact that I update it every year adds to the weight behind it that it wasn't done on a whim and is a consistent statement over years about my wishes

we have a really great support group on facebook which people might find very helpful - mostly families with people with dementia supported by professionals and other families and people who have been there and travelled the rocky road www.facebook.com/groups/dementiaconnection/

@Aurea
A couple of friends in your position managed to persuade their parent to go to the GP with them for an "older person health check" (their words, not an official NHS thing) which you would have to organise yourself with the surgery.

Nurse did BP, urine sample and bloods (to rule out UTI, anaemia or Vitamin deficiency), and GP did a MMSE (mini memory state exam) which is an NHS standard primary care thing). The score on the MMSE is then recorded as a baseline so when they go back again it can be repeated and compared.

My FIL died of dementia last year. What I didn't realise was how scary it is for the person with dementia. It often gets portrayed as being in some kind of fog, but my FIL had hallucinations, which terrified him. He tried to climb out windows to get away from whatever it was (luckily he lived in a bungalow). It was awful for his wife to deal with.

OP if euthanasia had been a legal option I am certain my dad would have chosen that way when he was still lucid enough to make the informed decision. He knew what would happen and he didn't want that at all.

@Hecateh, thank you for the updating tip. I’ll ensure I do that.

An acquaintance of mine her husband got early onset at age of 54 and it wasn’t till she involved her local MP she got any support . She continually got told that as he was under 65 the local authorities couldn’t help provide respite or anything for them . Both sides of my family have a high instance of dementia and it’s just very sad to see people go through the stages of this .

WhatAGreatDay I have known many, many people who have hallucinations when they have dementia - especially Lewy Body Dementia.

The terror they go through is appalling.

I've seen mum every day for the past 2 weeks, and she is asking more and more about her dead mother and dead husband (have they called in, are they coming, where are they etc), and at the moment I am still being truthful - if I say gently that her mother has been dead for over 35 years or that her husband died of lung cancer 12 years ago, she takes it on board but can't understand why she can't recall their funerals.

But how much longer can I be truthful? When does it cross over to the stage when I have to start lying to ease her distress? At the moment if I said that her mother had popped to the shop, I have a nasty feeling that mum would say hold on a second - if I'm 81 that would make mother about 110, why are you lying to me?

Sometimes Blue, a gentle lie is less distressing than the truth. You'll have to judge for yourself what your mum needs in the moment. I'm sorry, I know how hard it is.

Hi op I've not read the whole thread, my gf had it and came to live with us for a while. He didn't know us and kept trying to escape. He ended up heavily sedated in a home sat next to his sister who also had it. They didn't recognise each other.
I've worked in a home in my youth and seen the day in and day out living zombie and dh grandma had it.

I cannot for the life of me understand why, when someone has no recognition left, we force them to exist, more vulnerable than a baby, wide open to abuse. It's a prison sentence.

In homes the general idea is that you do lie.
People get stuck in awful places mentally. One lady kept panicking every day at 4 that she hadn't collected her children from school.
Just have to go along, reassure, they are safe.

Personally it's not a situation I want for myself. I don't want to live with it at that stage. I do not want my family to have to endure this.. I'd like to choose when I die. And I don't want my estate wiped out paying for very likely sub standard care and the care home boss latest villa in Spain and shit wages for the the poor, probably untrained person wiping my arse. No thanks.

I have worked with elderly people with dementia (years ago) go I remember a lady probably in her mid 70s, I was sitting talking to her in her bedroom space, sat in front of a mirror and I asked her how old she was, she looked at herself and she said I don't know dear I think I'm about 26.
I think of course you should lie to ease their distress, say anything to ease their distress.

agree with September, the real winners here are the care home owners, the establishment functions as a mechanism to liquidate your estate and funnel it into a villa in Spain.
Everyone else involved is fobbed off, the staff paid completely inadequate wages considering the work they do, underpaid poorly trained stressed staff are not in a position to provide the caring environment that these people need.
Care work is extremely demanding physically and emotionally, few people have a real aptitude for it, few clever talented people would want to work for those kinds of wages.
How can we expect good care for the elderly when we only pay peanuts?

My mum was a nurse. Heard plenty to terrify me enough to want to prevent it as much as possible.

I highly recommend reading Max Lugavere's 'Genius Foods'. Very interesting read and I've made lifestyle changes to do my best to keep my brain in tact. He's American but it translates reasonably well to UK food too.

The horror of dementia's reality is hidden from us, because through history no one's listened or recorded the nurses and the wives and daughters who do the caring. Sufferers can't speak for themselves.

The insane, the lower-class worker and women don't exactly get first go at the front pages of every newspaper even today.

Doctors take bloody good care not to get anywhere near the daily struggle. They do science. It's all polite conversation - but the truth of dementia is far from socially acceptable chat. The practical observation and insight of carers has never been classed as medically valuable, although it's the most important knowledge we need.

Something else - parts of dementia are so horrible that everyone self-censors. Why scare the shit out of a sane person?

I’m not sure there are huge profits in care homes any more. What would a week’s full board in a hotel cost? Add in 24/7 care, including washing, dressing and feeding in many cases. Even at £1000 a week, It doesn’t look like a very profitable business to me.

Considering the number of care homes closing, I very much doubt they're rolling in it.

So we have rising numbers of elderly people, rising cases of dementia but nursing homes are closing, we will have actual zombie hordes wondering the streets

Please don’t demean older people with a heart breaking terminal disease by describing them in derogatory terms. It’s hugely disrespectful to the sufferers and their families. Shame on you @bombomboobah.

we will have actual zombie hordes wondering the streets

WTF?

Seriously? That is an indefensible thing to say, @bombomboobah

Agreed. I haven’t reported it because I want people to see the disgraceful way people with dementia are viewed.

Agreed alsohuman

Let it stand and see if bombom comes back to elaborate.

It may be dark humour but @bombomboobah raises a very good point - we are in need of many more nursing homes yet they are closing, and this will lead to more elderly people with dementia ending up wandering the streets and even homeless if they have no family or that family cannot cope.

I've been lucky in that while both grandmothers had dementia, one was pretty contented with her Alzheimers and spent a decade in a home happily winding wool for other ladies to knit, and was unaffected when grandpa died because she swore blind she'd never married. Other gran was a bitter nasty woman until vascular dementia meant she couldn't remember why she was being so nasty and stopped - so for about two years she regained friendships with people who'd avoided her for years, and then got to the point of mostly sleeping. Could have been much, much worse. My mum is clearly in the early stages but dad is reminding her what to do all the time, just like her parents until grandad couldn't speak and her limitations became obvious.

Care in this country needs a huge rethink and I can't see it improving while families are all desperate for inheritances in order to afford a home.