To find dementia statistics frightening

[Collins567]

Having done some reading yesterday , it was stated that approx 1 in 1000 under 65s will develop it. That's really quite a high number, pretty much one pupil from each high school roughly.
After 65, that number shoots up, I think it was 1 in 20, which is terrifying.
65 is really no age at all.
I am thinking about Fiona Phillips who has recently revealed her diagnosis, and I have known of a 56 year old lady with late-stage dementia.
I have worked in dementia care homes so know exactly what it is, I have seen a lot of things that wouldn't be very pleasant to describe.
It just seems like a bit of a lottery. My Grandma currently has it and my other grandma who is no longer with us was starting with it before she died at 84, she became vey paranoid.
As it's in the family, it makes me even more worried.
I don't smoke, don't drink, exercise and so on.
Does anyone else worry about this a lot? I know there are now treatments which are supposed to really slow the prognosis but still no cure.

Thank you so much for writing this - it is the first time I have really cried about how my husband is and how it is going to go on. Sorry I can't write more as I am in bits but thank you.

I think we are going back to the concept of a "good death". For me, it's a BIL's mother's. She got up and got dressed ready for church. Her dd was coming to take her, and she was a little early, so she sat and waited for DD to arrive, and fell asleep. We all would like an exit as smooth and painless.

@Carpediem15 total support and unconditional sympathy. I hope you have friends and family buoying you up through this horrific stage of your life.

Yes, I worry about it. My own mother died from mixed dementia (vascular and Alzheimer's) when she was 71. Was diagnosed at 64, but had probably had it for around 5-10 years previously.

Thank you for that - my Dad did the same, aged 94 - take his morning tea into him and he never answered me so gave him a little shout and nothing - best way to go.

This is literally an inspirational quote for me. The women in my family tend to live for a LONG time but with no quality of life for the last decade or so (89 onwards).

Dementia in my grandparents has led me to push very awkward conversations through with my mum and Uncle. Clear living wills, care plans, circumstances set out for when I'm to take POA and their personal choices for end of life care. I've no need to make horrific DNR choices now because they have set their choices out for me.

I'm incredibly glad we've had those conversations now and we have a clear path.

All of the women in our family are fierce and independent and this disease (alongside just plain old getting older) robs them of everything.

I will be doing the same as you @iloveeverykindofcat and I've everything in place to make sure my children aren't burdened.

My dad had a minor operation for something recently which involved a general anaesthetic, which can be risky in older people (he’s 85). I was really worried about him and so glad when I heard it went well - but at the same time a small part of me thought that if he didn’t wake up, it would be a good death. He’s mentally totally sound so far but getting frailer physically. After the misery of my mothers last 6/7 years of paranoid and miserable dementia, I’d much rather he lost a bit longer of a good life than that he (and the rest of us) had to go through similar.

I haven’t read the whole thread but from where I stand right now, yes it’s very frightening. My mum has Alzheimer’s and until she was diagnosed, I’ll be honest, I had no idea the hell which is dementia.
It has reverted my lovely mum back to a toddler and this wicked disease doesn’t just affect the patient, it ruins everyone’s lives who are involved. We are at rock bottom and the added stress I have is that I have convinced myself that I will succumb to this horrible disease too. I do not want my children involved with my care if I do get dementia, it ruins lives.
So, yes, I am very frightened by the statistics.

I'm reading a book on it ATM and it states that people with end stage dementia have the developmental age of a baby under 2. That's heartbreaking.

My mum is 6 years into her diagnosis and it now feels like she is 5 years old. When I take her out, it literally feels like I am reliving my life with my dc when they were young, yet it’s my 80 year old darling mum instead. It’s just heartbreaking to watch.

Been there, my heart goes out to you.

Whostolemyporkpie
My mum has Alzheimer’s and until she was diagnosed, I’ll be honest, I had no idea the hell which is dementia.

To be fair, I don't think this is unusual - I certainly didn't consider how horrible or difficult it is to watch your loved one succumb to dementia and reality of what that means.
Plus we don't have many accurate portrayals of it in the media (probably with good reason as it's awful, and something most people fear for themselves) so I think a lot of people see dementia as something quite passive, like the benign old lady in the rocking chair, smiling and drooling a bit, but generally happy and content, when the reality is very different, and so distressing for everyone involved.

Farmageddon And in some ways I am grateful that up until now there has been little about it on the tv and media because my mum, luckily, believes she’s has a ‘mild’ case of dementia and that it won’t get any worse. It’s the rest of us how sadly know the raw truth, see how much she is deteriorating and know what is to come. It just very much gets to me when I am at rock bottom (I help my dad care for mum) and my friends just don’t get it, they think I’m being overly dramatic when I say it’s destroying our family.

@Farmageddon, I agree - I don’t think anyone who hasn’t lived with it has a clue of what it can often mean in practice. My FiL had it, some years before my DM - we took him to live with us and were frankly blithely clueless.

We had no idea that he’d be up in the night, banging and shouting and demanding to go out at 2 am, or that he’d hide things and then go mad because he couldn’t find them, or that he’d ask the same question over and over (I once counted 35 times in one hour!) or that he’d refuse to bath or shower or wear clean clothes, or (worst) that the tiniest thing could precipitate a truly terrifying rage - he was still physically fit - so bad that I would have to leave the house and take the petrified dog with me. (I could go on.)

Eventually we found a very good care home for him, but when it came to my DM, several years later, there was no way she was moving in with us - TBH she’d never been exactly ‘easy’ anyway.

This is why I get livid when sanctimonious people who’ve never lived with it, say oh so piously that they’d never put a parent in a care home, and how nasty we Brits are for ever doing such a thing.

I'm sorry - it's awful. And you're right it's better that she has some comfort believing that it's not that bad.

I remember when my dad was first diagnosed, and a doctor told my mother that he would get violent eventually, they all do, and prescribed some anti-depressants for him. She was so upset by that, my dad was such a gentle man (I never heard him swear until the last year or so, now he swears at everyone lol!) and we never believed that he would get aggressive, it was just not him.
Even in the early days, he was confused etc. but didn't lash out.

Until one day he did. Now it's just part of what he is like these days. Very angry, frightened and aggressive.
We spent a few years trying to keep him at home until we couldn't cope anymore and he went into a nursing home 6 months ago. It nearly destroyed us, and even though he's in the right place, we still worry about him.

And yes, friends don't really understand - most of my friends' parents are 10-15 years younger and enjoying their retirement.

Yes, the sundowning and the fact that their circadian rhythm is all screwed up. My dad used to get up in the middle of the night, go downstairs and just sit there, staring at the wall, and refuse to go back to bed. We couldn't leave him, as we were afraid he would try to go out, or turn something on etc. So nobody slept.

Or sometimes he would get up at night to go to the toilet and not make it in time, so many times I was scrubbing piss off the floor at 3am while my mother tried to change him and get him back into bed while he's freaking out.

And the anger and lashing out, he was and still is physically fit and able (although has recently lost weight) but can give a good punch when he wants to. I remember a few times trying to get him up the stairs, he just stopped halfway and tried to pull us both down the stairs, shouting and ranting about something. I have no idea why...

Honestly, I'm still fucking traumatised from it all.

And you're right - people an fuck off with the their judgement about putting a loved one in a care home, mostly said by people who have never had to care for someone with dementia - the majority of us are devastated to get to that point, but we just can't cope anymore.

Farmageddon I am so sorry, isn’t just horrendous? My dh worked with a lovely man, he was heavily set and around 6’4” but a true gentle giant. He was diagnosed with dementia shortly after retiring and sadly passed away last year. But he was sectioned in the end for beating up his wife and breaking her jaw. He had never laid a finger on her ever before, they had been married over 40 years. It was a truly awful time for the whole family. These things are just not talked about, like it’s a shame brought upon a family. No one sees the absolute complete change in a person with dementia, only those close to us.

@LMNT maybe you need a sign up in M&S cafe about this. I go in a few times a week for a coffee and the number of people my age (61) gorging down huge slices of cake is not small- and I see the same faces. Many older people eat poorly- I know when my MIL was alive they had cupboards full of biscuits, cake and nibbles but actually not that much healthy food in fridge or freezer to make actual meals . I'm not sure if it's living on their own in some cases and not being arsed to cook . I do know it's not always the case but it seems really common. All this carb and sugar being used in some cases instead of proper healthy meals can't be good for you long term .

I'm in a support group for people caring for someone with dementia and some of the stories are horrendous. Especially with hallucinations.
One person had her dad living with them.and he had frequent hallucinations that the house was under attack and the only way they could calm him was for everyone to identify behind the sofa, sometimes for an hour at a time. These were almost every day.
My friend's mum had her mum living with them until it got to the point she couldn't safely leave her unattended in the living room to go and strip the beds/put the washing out etc. The final straw was she decided to make a cup of tea and put a plastic electric kettle on the gas hob. Friend's mum was upstairs doing chores when she smelled burning and the kitchen was on fire. By this time her mum was back on the sofa having forgotten she'd gone to make tea and completely oblivious of the fire a few feet away.

@Farmageddon Honestly, I'm still fucking traumatised from it all.

This really struck me. M mum died almost 14 years ago and it’s only struck me recently that I think I have been seriously traumatised by what we went through

My poor DM once had a vivid dream that she and her cleaning lady had taken my DF’s dead body in the cleaning lady’s car, and just dumped it in a graveyard 100 miles away. I was staying with her at the time and knew what had triggered it - something on Who Do You Think You Are? the night before.

To her it was real, and for over 48 hours she was beside herself with distress - nothing I said could convince her - that I was there when he died, I was there at the funeral - he was cremated, etc. We even rang the cleaning lady, who told her she’d never taken her anywhere in her car - even that didn’t work.

Eventually it sort of subsided, but she still insisted that someone had come to the door and given her a dead body to get rid of!

Looking back, I should have told her I knew about it, but it was all right, not to worry, he’d been properly buried now. What they call in dementia circles ‘love lies’.*
Hindsight is a wonderful thing. 🙁
*over the years I must have told her hundreds of them.

When a friend's dad died in hospital she took her mum to be with him at the end. He died late at night and my friend was woken 7am the next morning by her mum phoning to ask what time they were visiting him. Absolutely distraught to be told he'd died but had forgotten again an hour later. Once the funeral was over she just kept telling her mum he'd gone to visit his brother for a few days as she got so upset to be told he had died. Had to keep that up for 2 years.

This is why I get livid when sanctimonious people who’ve never lived with it, say oh so piously that they’d neverput a parent in a care home, and how nasty we Brits are for ever doing such a thing.

Oh I agree with this so much. Dad was hospitalised (and later died) with a different medical issue but he was at the stage we were very much considering care for him. Refusal to get out of bed and get dressed. Paranoia about "bad men" in the house and constant wandering from room to room looking for the bad men. Up at all hours of the night and unable to differentiate between day and night. Shouting out randomly and LOUDLY. Accusing mum of trying to poison him when she was trying to give him his medication. Putting on his coat and wanting to go "home" at least 3 times an hour. Suspicious, rude and aggressive to visitors (who were also thought to be the bad men). Constant questions about who owned the house, how long he'd lived in the house, where the money was. Inability to dress himself - would not know what his socks were, or where to put them.

It's like having a toddler with all the why why why and refusal to do things. But a massive, strong toddler who can't just be picked up and plonked in their cot to calm down.

Both my parents have / has dementia , and sadly a lot of my fathers family .I suspect far more of my family would have gone on to develop it had they not died of other causes. Whilst new drugs are hopeful I fear our more sedentary lifestyles , high fat, high salt , micro plastic ingestion etc mean it will almost certainly be the biggest killer of my (50+) generation

This really resonates with me. We’ve just returned from visiting MIL, who now sometimes doesn’t know who I am. She thinks the other residents at her home are having wild parties every night. We wanted to take her photo with DD and she stuck up her middle finger and turned away. She’s always been averse to having her photo taken, but the elegant woman I met 35 years ago would be horrified.

@countrygirl99 , we had similar with FiL. He was staying with us at Christmas when he suddenly asked where MiL (dead 10 years) was. We explained as gently as possible that she had died but he was terribly upset and cried - only to forget and ask again 20 minutes later.

So we started saying she’d gone to the shops, or was visiting Auntie So-and-So. The good old ‘love lies’ again, but they kept him reasonably happy.

Similar with Dm, when at over 90 she started saying she ought to go and visit her parents (dead 30 odd and 50 odd years) because ‘they must be getting old and could do with some help.’

‘Well, I can’t take you today, because my car’s being serviced/there’s been a bad accident and the main road’s closed/any other excuse, ‘but maybe we could go tomorrow?’

Always kept her reasonably happy, but she forgot everything I said within a minute anyway, so could rinse and repeat such things ad infinitum.