Fucking dementia

[MegGriffinshat]

I hate seeing my dad waste away.

This time two years ago he was totally normal. Living alone, driving. Nothing wrong.

Today he’s in a care home, confused, talks a lot of shit but mostly just sits staring ahead.

It all came on so suddenly. April last year he started hallucinating and by december he had to live in a home.

He’s not living, he’s existing. He saw his much loved SIL gi through this, he begged me to tell me to kill himself if it started happening to him. It came on so fast he didn’t even know to do that.

Why do we let people exist like this? He’s had moments of clarity over the last year where he’s begged to be euthanised or for them to let him end his life. Their solution was to put him on antidepressants.

I hate this. I really hate it. I’m an only child, my mother died when I was a kid. There’s no other family. My husband does what he can but ultimately, it’s all down to me. Getting him help was horrendous. Selling his home has almost finished me off, there’s been so many problems. He had me later in life, everyone expects me to be in my 60s with grown children, but i’m 42 with a toddler and other young children.

It would have been so much easier if he had just died one day. At least that’s final and I wouldn’t have to watch this horrific, slow torture until he dies.

Every time the home calls for some reason, I pray that they will tell me he passed away in his sleep.

My friend said I was evil for wishing him dead. But he’s not living. He hates this. He doesn’t deserve this living hell.

Im sorry i am just so upset today. He was here today just staring and talking gibberish. That isn’t my dad anymore.

Oh @Alonglongway i’m so so sorry 😞
just no other words really. It’s shit. 💐

Anyone who’s seen the terror dementia causes would be evil to wish it not to stop. Your ‘friend’ is stupid and cruel.

The big unmentionable is The Burden. The scale of serious damage to families’ lives is huge and lasts for decades. Half carers have breakdowns. Finances are ruined. There’s no provision for care, unlike, say, a very seriously disabled child arriving in the family - no school, no medical specialists, not even a playground for a break outside with coffee.

My grandma passed away from dementia she was only 76, it was horrible she was so independent and sharp beforehand and seemed so young for years- driving, helping out with grandkids, busy social life, super organised. She saw her older sister go through a few years prior and had always maintained she’d rather die than suffer the same fate, it was seeing the lack of dignity that terrified her the most, so it was awful seeing her worst nightmare unfold and happen to her.

I don’t really know what else to say except huge sympathies. I really hope one day they find out how to treat this horrible disease.

Another one saying your friend clearly has no clue about the reality of dementia.

My DM has vascular dementia. It's brutal. And devastating to watch.

Sending sympathy to everyone on this thread with a loved one with dementia.

💐 to everyone.

In the same situation! Take care! One day at a time.... just think of it as the long goodbye. x

Don't blame yourself for decisions made in the beginning, with no support from outside authorities how were you supposed to know what to do for the best? Sounds to me like you did your best to leave him in his own home for as long as possible and then bringing him to live with you because you had his best interest at heart. Don't hate yourself for doing what you thought was the right thing at that time.
Dementia is so so cruel and it comes on thick and fast sometimes before you even know what's happening. I have to say that I agree that 'you wouldn't keep an animal alive like this' it is a horrible, heartbreaking disease

Op sorry but I'm going to pull you up on this.
If I could turn back the clock I would do things so differently. I honestly hate myself.

Dementia is a cruel terminal illness.
You did the right thing moving him closer to you.

It's one thing having carers popping in as an assistance to you. But Dementia patients wander, and have accidents. They need their main carer close by.

I know 2 ladies who lived alone with Dementia both wandered, the paid carers would put it back to the family, "Gone to give lunch but she wasn't in" the family would then have to go on the hunt.
One would walk to her mother's then get confused because the streets have changed in the last 60 years and keep walking.
The other would got to Woolworths and wait for her friend, as she did back in the day.

The families would also get the call, she's fallen / injured herself, and they'd need to deal with the then necessary medical care.

But even having a main carer close by they do hit a point where its simply not safe for them to be alone.

And as you found out the hard way living with them isn't easy either. I know another who became frustrated, and voilent when she couldn't get out (the key was hidden to prevent Midnight wandering) or find get purse.

You 100% did the right thing moving him closer. The home was going to be needed sooner or later.

Please don't hate yourself for the decision you made.

I thank god every day that my darling Mum died suddenly a few years ago . It was absolutely shocking and heartbreaking at the time and I absolutely adored her .
I have so many friends who are going through this nightmare with their parents dementia and I think it’s bloody wicked that these poor old people are basically lingering with all the indignity ,and for many the fear they experience…bloody shocking.
As so many millions of people have said..you wouldn’t let an animal suffer like this !

Another going through this. I’m in my early 40s with a job and two primary aged kids. I tried for my mum to stay at home with carers but she wasn’t receptive to them and would lie or tell them to leave. After several falls and other incidents, I moved her into a home and the burden it took from me was enormous, I had been becoming ill with the stress. However it’s eating through every penny she worked for all her life. I worry the money will run out before she dies and she will be moved to somewhere inferior.

Yes to those that say they feel grief whilst losing the person they knew. People are sympathetic but they don’t really get it unless they’ve been through it.

She’s now incontinent and barely mobile but can still speak, although she spends most of her time asking me where her mum is (who died 44 years ago). I fear she has years of this left, the healthy mum I knew would not have wanted to live like this.

BananaSpanner. I think that you're right, lots of people have no idea how brutal a disease Dementia is. I must admit that until DMIL started with it, I thought it was just being forgetful. How wrong can you be?

OP, like others have said you need to be kind to yourself about decisions made in the past. Having someone with Dementia is a bloody steep learning curve and you made those decisions with the information available to you at the time. If further information became available later that would have changed that decision, it's not something to feel bad about.

sending big hugs to everyone
I am currently going through this with dm and its truly awful and the lack of support etc just adds to it
my sister and I need to decide on a home this week for mum sadly
18 months ago she was living a normal life
Today she is doubly incontinent losing her ability to walk can barely string a sentence together and is clearly and visibly distressed and upset
She is 80 I wish she would just close her eyes and that would be that. There is very little of my dm left and the strain and stress on us all is unreal. My children are grown up but my sister has a four year old who is now petrified of her nan as she simply doesnt understand
we lost our dad 7 years ago to cancer he was very I'll for six weeks then he was gone although awful in many ways it was easier than this
The amount of people with this and going through this with their lived ones is truly horrific

too add and care homes can be 1600 pounds a week so every penny they have plus their home is taken to pay for their care. my parents saved their whole lives and now it will all be gone truly awful thank goodness my df never saw what is happening to my mum

Yes, he scrimped and saved his whole life to leave me something to make up for the shit life we had when I was growing up. We had nothing. He always said that at least one day he would be able to leave me his house.

Half of that has already gone this year. The other half will be gone in 15 months. He will leave nothing.

I don’t think he really realises. He often says that he may be useless now but at least when he dies I won’t be struggling for money. I haven’t got the heart to tell him that £1,300 a week leaves his account for him to sit and be miserable in a place he thinks is a prison.

Same here, my mum was a single parent and worked full time as a primary school teacher. She managed to pay off her mortgage and built some savings. She lived really moderately in her retirement apart from some foreign travel. Her care home fees are £6k a month, the house is sold to pay for it and the savings have pretty much gone.

My mum doesn't have dementia but she lays helpless in a bed in a nursing home all day after a devastating stroke 8 years ago. It's torment to see her so unhappy. I sincerely wish she would pass away quickly and painlessly - because I love her so much.

And I am scared of what will happen when his money dwindles to ward 23k.

Does he get to keep any? Or does he have to give over every penny?

I keep getting told conflicting things.

Someone at the council laughed and said, “oh, you are one of those money grabbing family members then?” I had to hang up, I was so upset.

I’ve spoken to solicitors who are supposedly specialists - all told me conflicting things.

The care home are useless with it. they just keep saying “don’t worry” when he gets near that we apply for funding. but that can take months the council said.

I just want to know if I can bury him when he does. We can bearly keep ourselves going, we won’t have a penny to bury him.

The care home have said don’t pay for a funeral plan now (we have POA) as SS will come down on you like a ton of bricks when they do a financial assessment. And he only just has enough for the 2 years he needs to stay there so they can try to keep him in the same place when it runs out.

Citizens advice we’re no help, two people at age U.K. told me different things.

I don’t know where to turn.

Our care home have said similar things but it’s not clear. I don’t know what happens to be honest.
You should make a complaint about that council worker, that’s a horrific thing to say.

When he gets down to 23k government funding will then take over paying for your dads care. He may have to pay with his pension to top up but the 23k will be left alone.

But what happens if he goes below the 23k while they are still trying to sort the funding?

This is what no one will tell me and why they person at the council accused me of being money grabbing.

I just want to know.

One solicitor said that as I have POA, I should move 23k of his savings into an account in his name with his bank.

Another solicitor said it was illegal.

Its all so confusing.

As long as the funding is applied for before it reaches 23k then it should be back paid if it isn't in place in time. Speak to the care home manager and ask what usually happens as I'm sure they deal with this a lot.
My DM went onto funded care and it was all sorted, I didn't have to worry about any of it.

I posted on your thread about my dad dying yesterday. My mother also has advanced dementia and is in the same nursing home so we've been through lots of this.

Did you call Age UK nationally or locally? Our local service has never been able to advise but I called the national advice line on a finance matter recently and found them very good and clear. You get a generic service first who offer you their leaflets but when I said I had already read those and wanted more advice, they referred me onwards to their advice service. 0800 032 0451 but I can't remember if that was the first or 2nd tier of advice

Our experience was that we started to run low on money (both parents in the dementia unit for 4 years) around this time last year. I stopped making payments, advised the care home and approached the council. They did a full assessment before asking me to do the finance paperwork. It has taken forever - many of the delays on my side to be fair as it's painful and we're only just getting there now. They both had an occupational pension lapse as paperwork went to their old house which was sold 3 years ago, and the calculations can't be completed till I've reestablished their eligibility. I got dad's done a few days before he died. Working on mum's now. We also had mum assessed for CHC funding and some was awarded - that was very difficult process but the care home did most of the work.

Council notified me that the gap between their funding threshold and the care home fee was too high to be bridged and they would be moved and likely separated. Very distressing. I later got a call out of the blue from the care home manager saying that she'd made out the case to her head office for the council level of funding to be accepted. She hadn't told me as she wasn't confident but it was finally accepted.

The care home resident is entitled to retain the £23K and then £29 per week from their income. It's not money grabbing to be rigorous about this. We bought dad an expensive wheelchair when his mobility declined. They both needed glasses. Haircuts and podiatry are extras. etc etc

My parents already had funeral plans so I can't speak about that with any experience.

Sorry this is a bit long but I thought a recent example might help.

When there was talk of my dm going into a nursing home, about 4 years ago, our care manager advised us to take out a funeral plan. We had poa.

OP you are not evil for wishing him dead. I'd argue dementia is the worst way for someone to slowly pass as the suffering is horrendous. I can relate as my grandma had dementia. Like your dad, she deteriorated so fast. She was such a proud woman and she was at the point where she was scared confused and unable to do anything. She was eventually sedated and passed with sepsis (she was never in a care home and had other illnesses). I was so relieved, but obviously devastated, when she passed. I remember thinking that of she stood in that hospital as her younger self looking at the state of her at her worst, she would be horrified. I so wish there was a humane way to end this. Something you could sign to say if I ever reach this point, end it. Sending you love. Be gentle on yourself, this is really out of your control.

Op, please do not blame yourself and think you made his dementia worse by your actions - it's a disease that carries on no matter where the person lives or how.

Also you asked, "Am I kidding myself thinking that it will be easier when he does die?

That there will be a relief? Because this is so horrible. It’s ehe worst kind of grief because the person he was is long gone but he’s still in front of me."

My dad died last December after almost 3 years on a care home, I felt little other than relief along with some pity that he had to end up as he did. Having lost my mum 20 years ago (I'm early 50's) my response to the two bereavements has been totally different. I think I grieved for dad as he faded away and I couldn't agree more about the irony that we won't put our pets through it.
I really hope euthanasia becomes legal before I reach that point