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.

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.

I absolutely feel for you OP. The worst thing with my dad is how agitated and yet hopeless he is. Today he was telling me that they are torturing him at the home. When I asked what I could do to make him happy he said ‘believe me’. I said ‘Dad, I do believe that’s how you feel’ and he just looked at me and said ‘Real belief, not manufactured belief’. I just don’t know what to do. I know they’re not torturing him, but he’s in pain ( he falls a lot) and the dementia makes him think that the staff are causing the pain ( I think). I tried saying I would speak to the manager but he just said they wouldn’t listen to a ‘layperson’.
Its so bloody unfair that he’s so unhappy and I feel utterly helpless.

It’s so brutal.
Sending you a lot of sympathy.
i was in a similar position, cared for a grandparent with this. He was still at home, I was trying to sort out a home for him but he got angry when we talked about it. Refused to leave his home. Didn’t really know why but he knew he wouldn’t leave. I was at my wits end, driving an hour and a half to see him most evenings after work and then having him down to stay with me at weekends. No one else in the family had anything to do with him. I also work full time and have 3dc at home. Dh, like yours, was so supportive but ultimately everything was down to me. I was totally done in and at the end of my tether with it all. The appointments were endless, the phone calls squeezed in during my lunch breaks, taking leave so I could make it to hospital appointments with him, meeting social workers, interviewing cleaners to help me out…
a few months ago he was knocked over by a car and killed.
I felt so torn. I miss him dearly. Bitterly. Despite all the shit times we also had the best times. When he was lucid we would laugh so much together. And now that he’s gone I feel guilty that it’s a relief. It’s all done. Horrible. I know I’m not a bad person for feeling this way, it’s just so confusing.

Please, please. Don’t hate yourself. I have walked in your shoes and when there’s no obvious support signposted you just ping pong from one thing to the next. I know all the decisions you have made had the best of intentions. You did what you could under pressure. Nothing is your fault. Please be kind to yourself. No one understands unless they’ve walked this path themselves. And when they have they know you aren’t to blame for any of it.
💐💐💐

Tell your ‘friend’, from me, to fuck off. There is NO WAY that she can possibly begin to understand how horrific it is, unless she has been through it.

I’m also going through this with my mum. I’m slightly younger than you, OP. It’s a horrible thought to realise that the best thing for someone would be for them to drop dead of something else. And also the situation really holds a lens up to qualities I dislike about myself, as I don’t have endless patience and resent the impact it is having on me just living my own life. It’s outrageous that so little support is available and that it seems like there is still a taboo surrounding open discussion of dementia.

I understand.

I understand how awful it is, and you're not evil. Or alone.

Df died 10 years ago of dementia, after being in a care home for 8 years, wasting away. He eventually starved to death after he stopped eating. My poor mum spent a good 12 years before he died caring for him, first at home then visiting him daily in the home. Not long after he died, lovely dm started with symptoms. She's now fairly poorly but just about managing at home with multiple carers visiting.
I feel dementia has robbed her last 20 years when she should have been enjoying retirement. She's fairly content now but it breaks my heart that she doesn't know who my children are. Both she and df would have doted on them and been such good grandparents.

I'm also so sad I don't see her more, despite living close. But like you I work, have Primary age dc to look after, and 'd'p is completely unsupportive both practically and emotionally so makes it hard to bring her round to ours. Feels like my entire adult life has been spent watching them get iller one after the other.

Sorry to moan on about my issues, but also feeling a bit down about it all tonight. But yes, it's a complete bitch. And nothing wrong at all with wanting a loved one to be out of their suffering.

I'm so sorry. My MIL has dementia pretty severely now, not yet in a home though, and I'm hoping she will die before she gets much worse. I doubt it though, it's fucking awful, you wouldn't make a dog live like that yet it's ok for people?

My MIL had alzheimers. Her decline was not noticeable at first and then rapid. It wasn't gentle or kind, and she was aware of things not being right but at that point wasn't really able to communicate. This coincided with covid lockdowns. It must have been torturous for her. I wouldn't wish that experience on anyone.

You have my sympathies @MegGriffinshat and you absolutely arent evil. You know your father didn't want this, and there is absolutely nothing that can be done really. Existing, not living, with dementia is truly horrible.

I am an only one too and I am dreading these days if they ever come. All I can send you is a big hug.

You have all my sympathy op.

It was so painful watching my intelligent, lovely mother declining until she recognised no one and just sat staring into space.
Dh and I have made ‘living wills’ saying that we don’t want antibiotics or to be resuscitated but there are plenty of people who live for years with dementia not needing antibiotics.

You are not evil at all, far from it. What a bizarre thing for your friend to say.

I wouldn't wish Dementia on my worst enemy.

Do you know what makes me laugh. My cat is 17. At his last vet check up we spoke about how he sometimes gets disoriented and confused. The bet said that over the next few months, if he gets worse and especially if incontinence starts we should think about euthanasia as it’s not fair on an animal to carry on like that in possible pain and no dignity.

But it’s okay for a human?!

I know some people find that offensive. But I wouldn’t put my cat through how my dad is expected to live.

Oh you poor thing, I am so sorry you are going through this. It's true, dementia takes a terrible toll on carers and it must be so hard to watch a rapid decline.
Your love for your dad shines through, he is lucky to have such a caring daughter.
Please don't feel guilty. You did your best and that's all there is to it.

I agree, we know about the quality of lives of animals and yet we can’t spare the same for humans.
it’s heartbreaking 💔

I'm sorry Op, 64 is s young age for that diagnosis. My Dad was in his eighties but still physically fit and that was hard enough and I wasn't dealing with young children tho am an only child. Him having to go into a care home because my Mum couldn't cope any longer at home was a heartbreaker as I didn't before then think we were a family who could do that.
But once there it was looking at what we could do. Small wins. Being with him. Holding his hand. Stopped working and visited as much as possible. (No regrets as he went to home in September and passed by the next February, having changed meds, lost a lot of weight and got pneumonia, which effectively took him out.) Fighting his corner when necessary. Making a cd of his favourite music and taking in a cd player. Getting over that although he was a super bright man, we were now where we were and he was transitioning toward end of life. Taking in smoothies and sweet things as he would always eat those. Eating with him if you can. Taking him for a walk in the garden. Always saying your name and that you are his daughter when you go visit, as all the other people around gets confusing. Labelling his clothes with markers so he got to wear his own clothes most of the time. There are different stages and also good days and good moments so cherish those if you can. Sometimes he would stand up and sing a Vera Lynn. He was still the same person inside and would use alternative words as his brain couldn't access the right one. Talk to the good care staff as they are gold dust and thank them as they are on rubbish wages mostly.

Sorry Op, I hear your pain and can't wave a magic wand. Our society not doing enough yet, it could and should do better for the family as well as anyone with this diagnosis.

It's a horrible disease. I've heard people describe it as having to grieve every for your loved ones twice. Once during the disease and then again when they die.

I'm 43 and my mum has Alzheimer's she was diagnosed 6years ago (when I had my youngest son) and went into a home 2 years ago.

It's been a hard few years, mums disease is difficult, the family don't all agree on how to do things, so we've had some massive arguments with social services, drs and DOLs assessors involved.

I didn't have the greatest relationship with my mum as she wasn't always the nicest person however that person has gone and she's now rather sweet and very vulnerable so I have had to let everything go and get on with helping her.

Care at home was an awful battle but thankfully she's now in a lovely care home with fab staff. She's fairly settled and ok although she sleeps much more now than she did and can't really string a sentence together.

Recently with all the ridiculousness of politics I keep catching myself, when I think I should call her because it's the kind of thing she would have in the past had a good rant about. Now I do tell her what's going on when I seen her every week and occasionally you see a spark in her eye but it's not the same.

Sorry I was replying to another poster saying her dad is 64.

My dad is 85.

He’s lost interest in everything. He used to love music, he always had 50s and 60s music playing - no more. Won’t have any on. Same with TV. He used to love the soaps, he used to record them when he was working shifts, wouldn’t miss an episode. He doesn’t care now.

OP like so many on here, I completely understand. I have seen it with my Great Aunt.

The thing is you don't want your 'Dad dead' you want your old Dad back. You want this version of your Dad, to not suffer like this. It's not him /- the disease has already taken him. People just don't seem to understand the difference.

My dad was an ardent anti royalist.

When the Queen died, I thought it would have raised a reaction. I told him and he just looked though me and started talking about something that didn’t exist.

He has no clue about anything now. He makes up te news in his head, it’s usually that one of has been on the news for having a car accident.

Op Dementia is a cruel brutal illness.
Your friend has no clue, she's obviously never seen someone in the later stages and thinks is just a bit of forgetfulness.

The persons mind, their soul, the bit that makes them them, dies slowly, then the body follows.

You did the right thing putting him in a care home. There hits a point where someone is unable to be cared for at home or live alone.

And I've thought the same thing for years if a cat or dog could barely move out their bed and had no clue you'd be classed as cruel for not putting them down. Yet people have to 'live' even if the mind is dead until the heart gives up, and pay for the blinking privilege.

I hate dementia and I am so sorry you are in this situation. My DM had mixed dementia for 10 years. it was horrendous. Like you there was only me left. The system is awful from trying to find out what was wrong with DM, to diagnosis, to trying to get care and support in place. Having to juggle a young family, stressful full-time work, as well as Dementia and the many many issues it brings is overwhelming. You just start to feel like you're on top of it, then Dementia throws another massive curveball and you start from scratch again. It eventually takes everything, their memory, ability to eat, ability to go to the toilet, their mobility and the hallucinations are always there, they come and go, often when least expected. Until someone has experience of dementia (and I pray no-one has to experience it) it is impossible to know the relentless reality of what it's like. Ignore your friend she does not have a clue. Dementia takes our parents from us long before death does.

Op
No way are you evil, I'm a nurse and I work in a dementia unit I've had to watch very intelligent people deteriorating rapidly, not even recognising there loved ones and crying out for their dead mothers .
Sending much love and strength to you

Sorry Op, it's just bloody sad then and it's ok to feel that. Are there any other medications that could be tried? Read them up first, avoid the one with weight loss side effects
Had to do a lot of reassurance with mine when he kept asking same questions or wondering where we were.

Huge sympathy. My dad died from vascular dementia this morning after 4 years in a care home. They were brilliant and it was the best death possible but his life had been terrible for the past couple of years.

I'm sorry, your friend is blissfully ignorant about dementia.
I lost my DM a few years ago to cancer. It was heartbreaking to see that destroy her and take her from us all.
I was furious that it was her and not my DDad as she loved life and didn't want to die.

Now I have seen my DDad suffer the alienation dementia has caused him, I thank everyday that my DM didn't have to go through this. I'm not very close to my DDad, but it's horrible seeing him reduced to this, and for potentially years and years. I hope somehow it ends soon for him while we can still remember how he was before.

I’m so sorry x