To say dementia is fucking shit

[Toffeesgirl]

I lost my Mum to it a few years ago and now I'm losing my Dad.

its an awful, awful disease, it turns wonderful people into absolute shells of themselves, diluting them day by day,

It is SHIT!

Thats all.

Lost both my parents to it. It’s an absolute fucker.

How lovely for you to know that you are bringing a brief moment of joy to those who suffer with it. What a privilege for you. And thank you for what you do as I imagine it weighs heavy for you at times.

And yes OP, it's beyond utterly, despairingly shit. On year 4 with my DM. DF and I are struggling massively with what we need to do; it's relentless and so bloody sad.

My mum has just been diagnosed, although I think in retrospect I can see things have been unravelling for the past 3-4 years. It’s only now she is further into the disease and has become quite passive that we were able get her to memory clinic. I hate seeing her fade bit by bit. She seems quite content, but I miss the old her. I miss being able to tell her my worries. It’s shit. Hugs to all of us going through it.

Go to https://www.mumsnet.com/talk/elderly_parents
For hand holding to help with problems to rights and obligations of tax funded services for the victim and carers

And

https://www.alzheimers.org.uk/

or local organisations may be able to help.

And there are now meds which can slow not stop the progress

🌻

The NHS prolong existence but reduce life - that’s the reality of dementia in today’s uk.

It’s beyond wicked, especially for families.

It is awful. You see your parents go through it and then worry about it happening to you. I am sure that when I was a kid I never heard of anyone having it. I know people live longer now but it does seem to be so common.

Yes it is absolutely shit. My grandmother had it. With hindsight it started when she was about 70 but because she was physically fit and strong with no co-morbidities she lived until she was 85. The last three years in a specialist dementia MH nursing home. When she died she was doubly incontinent and had forgotten how to eat and swallow. She was 4.5 stone when she died and spent her final month's on a vibrating bed to prevent bed sores. She lasted for so long because my grandfather and mother visited daily to feed her and be with her. Until she became bed bound mother still dressed her nicely and did her hair.

What is even more shit is the lack of resources to care not only for those with dementia but for those who care for them.

It is absolutely horrendous I'm sorry you are going through,

It runs through my family on my mums side and I think my mum is starting to show signs It's devastating.

@TwistedWonder what you wrote really chimes with me. My dad was super bright, very funny and quick witted. Always busy doing things, rarely sat down. Ran his own company. Dementia has ruined hi. And he went into a home earlier this year as my mum, in her 80s, couldn’t cope any more as he was doubly incontinent and couldn’t be left for a second.

Early stages. I haven't had it confirmed but I recognise the signs from when my grandma had it. I'm hoping to get out before I'm too far gone to understand. All you can do is live your best life in the meantime.

OP I hope you are ok.
It is crap. I lost my mom by degrees.
Slowly she changed, there were new stories as her older memories came to the front, but ultimately dementia and covid took her.
It broke me, it still breaks me.

OP be as kind to yourself as you possibly can.

It’s very shit. So is Parkinson’s.

Yep - I hear you
It's shit
No other way to describe it

It truly is one of the cruellest diseases. I’ve watched my Nan and MIL die because of it and my other Nan has been living with it for over 5 years now and is in a care home. She’s strong as an ox in her mid 80’s so fear we have a few more years left with her continually declining. She doesn’t know who we are anymore just knows we’re a friendly face and can no longer have a conversation.

Im terrified it will happen to me or my parents.

Agreed. Awful, awful, awful, watching your loved one disintegrate slowly and inexorably to a shell of themselves. Lost my mum just before Christmas after about 15 years of it - could do nothing for herself, no idea who we were, who she was, just sat strapped in a chair staring vacantly into space. Still traumatised by the memories frankly.

Who on earth are the people who say you're unreasonable?

I completely agree with you, OP. It's the most awful disease.

I would rather me or my loved ones get hit by a bus and die outright than this. Sorry for you op xx

💐so sorry for your loss.

lost my dad to Alzheimer’s in 2021. But he disappeared for the 8 years before, slowly. The deterioration was horrendous and the impact on mum.

Exactly what happened to me. Mum had an awful death from lung cancer and by the time she died it was clear Dad was developing dementia. He didn't know who I was in his last 18 months of life. It's absolutely awful.

WHO, by the way, has voted that the OP is BU?

I could not agree more OP, it’s utterly hell. DM has Lewy Body Dementia (after years of Parkinson’s) unfortunately due to the type of dementia she’s really unhappy and angry all the time so it’s hideous for her as well as us.

I hate the guilt I feel from those with no ‘skin in the game’ who wonder why she’s been in a (very lovely) care home for 3 years, when the reality of her life is she’s completely unsafe to be living at home. Even with 24 hour care, her behaviour borders on unmanageable.

I also hate the guilt of wishing it would all be over, as I know what that actually means.

Sending love to all of you. Try to find sometime for yourselves today and recharge your own mental & physical health a bit xx

You are right, it’s not only shit but also evil 😔