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.

@maeveiscurious lots of love, I’m so sorry to hear about your mum ❤️

@maeveiscurious I'm so sorry. Xx

I took DM shopping yesterday. Took her to a family party Saturday and didn’t spend much time with half of the family (ie the men) because I was still clamped at her side and due to being assigned her carer despite their being other close family there. I make sure she eats every day. I manage her social life and schedule all the groups she goes to. I get up to 20 calls a day and answer most of them. I was having a moment to myself reading my book and she called me to have a go and say she was bored, I was deliberately keeping her in her house and then the paranoid nonsense starts up. I ended the conversation. But now I can’t fucking think of anything else. I can’t relax, I’m so annoyed. I do everything I can for her but I am not responsible for her happiness. I never expected life to be this fucking shit. Fuck Alzheimers. Fuck Dementia. It’s a cunt of a disease and I pray I die of anything but that.

Can relate to virtually everything on this thread.

Glad the taboo of saying that sudden/quick illness leading to death is preferable to dementia is now being challenged.

You are not 'evil', how cruel and ridiculous.

I was flummoxed during Covid, particularly, about the drive to save the lives of so many very elderly people with advanced dementia. What happened to the old saying that pneumonia was the old person's friend? Can't help feeling that it would have been a blessing for so many of them.

My DF has been in hospital the last week with Pneumonia, hes been on high dose antibiotics and then IV. I visited Sunday as I live over 100 miles away. Risked getting caught in the snow etc I told him we had driven all that way and he said "oh poor you" in a sneering way. He also tole me he didn't love me, my mum is a liar (she was told 48 hours in hospital max, but they discovered another problem) and a load of other insults. I can take no more of him, I'm absolutely done. Today he was discharged with no care in place back to DM instead of being moved to rehab, he has been vile to her and DSIL today. I actually have nothing more to give nor does anyone else in the family. But this nasty man is back home again treating everyone like crap. Yes he has dementia but he was nasty before now people just make excuses for him.

No one was put in the planet to be a punchbag for the abusive and insane. It does DF no good either.

Don’t visit for a while.

Don’t.

💐 to you and family.

I totally get it. My lovely DM has been in a care home 6 years. She’s now doubly incontinent, completely bed-bound, asleep most of the time, only eats or drinks a very small amount every couple of days and is now on end of life care. I pray every time I see her she could just slip away peacefully. It is the cruelest of illnesses and my mum is alive but it’s not living, just breathing. We wouldn’t let animals linger like this. I have already grieved for the mum I had but know I will have to grieve again when she finally goes but I will also have relief that she’s realised from this prison of existing as a shell of the person she once was. It is so so cruel and no one can understand the absolute desperation of it unless they’ve been through it themselves.

@Turquoisesea I could have written this post word for word, identical to my darling mum, we lost her in October after a week of end of life care it was horrendous watching her basically die in front of us. When it happened I felt devastated but relieved that our awful dementia journey was over and she is now free. I know exactly how you feel it's such an awful disease and I lost the mum I knew five years ago. When she died I grieved all over again for the mum she was before the dementia. We wouldn't let animals suffer like this it's awful.

I lost my mum to dementia several years before she actually died.
She was in the early stages but had her 80th birthday at home then went into hospital a few months later and was discharged to a care home and later to a nursing home where she spent the last three years of her life, dying three months short of her 90th birthday.
We were lucky in one way as she was eligible for continuing health care under the NHS in the nursing home as she had complex health needs as well as dementia.
(We had sold her home to pay for the residential care home fees she incurred for the first few years. )
I have to say she was well cared for in the main although it wasn't perfect but luckily I was able to advocate for her. She didn't know me for the last few years, and even more heartbreakingly, didn't remember her darling grandson at all, and he had been the light of her life from the moment he was born.
It's beyond words how cruel this disease is. In the end she passed away peacefully with pneumonia and although I grieved, I was also relieved. It had been a hard time.

DF has apparently been asking after me and asking when I will visit. I dont know if he's forgotten he's been do nasty or is feeling guilt in a lucid moment but he never actually felt any guilt or responsibility before he had dementia when he was nasty so I'm a bit baffled by this.

He was deemed capable enough by Dr's to understand he may choke on his food now he had dysphasia as part of his decline so its all very confusing. I would love things to be right between us before he passes but he was never bothered before so I just don't know if this is to make him feel better or me

THIS IS THE OP.

I logged out and couldn’t log in, never got sent a change password email, so I re registered, again (that’s happened to me so many times).

Im struggling.

I can’t take another year of this. I’m suffering from panic attacks over the worry. I’m on medication but it’s not taken away the problem.

This year his money will run out, in about october. No one will tell me what to do then. I’m scared to ask if any of it can be kept incase I am accused of being a money grabber again.

I’m going to pore pay for a direct cremation for his bank account (i have POA). I’ve been told that SS won’t like that when they assess when his money has gone but I have nothing. The 1,400 that costs would mean I would have to go to a loan shark, I can’t get credit. I’m not doing that, so SS can shove it if they don’t like it to be honest.

Chriatmas was shit. He came here but he didn’t know what’s going on.

He hates me for doing this to him. But I couldn’t look after him. My baby wasn’t safe with him here.

I can’t take another year of this. All i’ve done is cry for the last few days.

Meanwhile, his body is healthier than ever. This is going to go on for years more and it’s killing me.

I love him and I can’t do it anymore. I want a dad. I‘ve got no other family, my inlaws are racist wankers who hate me.

And all I had was people telling me how lucky I was that he was here this christmas, they wish their mum/dad/grandparent was still here.

What, shitting themselves? pacing and screaming that I had put them in prison? Trying to climb out of the window to escape when we took them back to the home? Him tearing down the christmas tree in the care home lounge? Yes, it was fucking wonderful for him and all of us to be here this christmas.

some useful advice here:

If your savings run out

If your savings fall below the upper capital limit of £23,250 (or £100,000 from October 2025), your council might be able to help with the cost of care.

Contact your local council about 3 months before you think your savings will drop to below the limit and ask them to reassess your finances.

Councils provide funding from the date you contact them. You won't be reimbursed if your savings are below the limit before you contact them.

Paying for your own care (self-funding)

Thank you.

I’ve spoken to the care home. But they keep parroting that the council will expect family to top up. They charge 1,300 a week, the council will only pay 900.

Theres not a hope I could even put in a tenner a week so no top up is going to happen.

So I assume they will move him to a council funded place?

Put a claim in for attendance allowance and PIP If he’s not already receiving the benefits

Sorry I’ve just realised he is over pension age, you could try applying for attendance allowance the only problem is it will stop when he is no longer paying his care home fees.

If he gets a pension I think that would be used to top up his care home fees.

I’d also speak to a charity such as dementia Uk

He gets attendance allowance at the moment. I’ve got a reminder set to cancel it when he gets to the 23k.

I was told that pensions weren’t allowed to top up fees. It wouldn’t be enough anyway.

Could have wrote this myself OP

It's so so hard

My dad is 87 and now in a care home
We tried our best to keep him at home with support

Now we try to take him out a few times a week
Today he just kept trying to get out of the car
It's just the hardest time ever

Hi OP. I’ve been in this situation and I had to accept that my parent couldn’t come home for visits, as it wasn’t safe for my kids. I visited the care home regularly instead. Apologies if you’ve already discussed this, but it sounds like your dad could be eligible for NHS CHC funding. It is hard to get but if you download the checklist (initial assessment) and the Decision Support Tool (full assessment) you can see the criteria. Insist on being at the assessment. Everyone says it’s impossible to get, but not if you prepare your evidence. Ask for a copy of all the care home records; they should be recording all incidences of falls and aggression, violence etc. I’m so sorry you’re going through this, it’s so dreadful.

Ah, I’ve just read that he will get a personal budget when the council assess him and if he wants to live in a more expensive care home that friends/family or a charity can top his fees up. And that his pension will be classed as income and a contribution from that is taken into consideration.

One of my friends is in a similar situation, she had to sell her DMs home to pay for her care home and didn’t realise that she could apply to the council for help with the fees when her money was running out, so all the money from the house has gone now.

this article is helpful How moving into a care home affects your pension

His pension wouldn’t be a enough to top it up.

So I guess he will have to move to one that the council will pay for.

I’ve been offered to visit mum this week and I’m in a panic . I desperately want to see her but I want to see my mum - not who she is now . She looks a little bit like my mum in photos, but not really, she’s grossly underweight and her eyes don’t look right anymore . I still get flashbacks to the the last couple of years where I tried so, so hard to care for her. One day she had a generalised seizure on the stairs, two weeks before she was taken into hospital once and for all - she fell back on top of me, and I thought she was dead - and I keep replaying that day over and over.

I feel terrible as I haven’t been since September . Other family see her all the time (cousins, her siblings) . She doesn’t know me and won’t know I haven’t been but I keep worrying that she doesn’t know me because I haven’t been, if I’d kept her at home would she still recognise me? I tried my absolute best for years. I never wanted her to go into care, I tried so hard, I tried and tried.

when she went into hospital she was so angry the nurses had to hold her back because she was going to go for me, and she told me it was ‘all (your) fucking fault’ . In the ambulance when they were taking her the paramedic made a joke and I smiled, and mum looked at me so cold and said ‘and what the hell are you laughing at?’ My mum never looked at me or talked tonne like that . And I can’t get over that, all I have is everyone else telling me it was just the dementia, but I wish my mum could tell me she wasn’t angry with me . I’m scared that she really was for whatever reason .

And going to see her where she is so hard, they’re all so old there, my mum’s not even 60, even a good day for her is a really bad day in reality and it hurts so much . They say she’s had a lovely day and I think, but she’s still going to die of this, she can’t have many lovely days left .

Stupidly I imagined yesterday what if they cured her . What if they found a drug or said they’d made a mistake and she woke up fine and I’ve got rid of her house and most of her posessions. So stupid because I know that wouldn’t happen in reality.

I do want to see her, but I’m so scared to go. The last time I went in I nearly blacked out from panic . I don’t want that to happen again .