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Dementia and Alzheimer's

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Original poster

Fucking dementia

234 replies

MegGriffinshat · 29/10/2022 17:11

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.

OP posts:
thebestsellingshow · 29/10/2022 17:14

You are not evil at all. What an awful thing to say. Dementia is a slow and terrible death and much worse to watch a loved one go through than to lose them suddenly.

rookiemere · 29/10/2022 17:20

I hear you OP. It's a horrible illness and I fail to understand why we can't allow people to pass away with dignity.

My DPs are living in their home, in their 80s. DF is starting to show mild signs of dementia and at age 89, I find myself wishing that he passes away peacefully before he deteriorates and ends up in a care home.

ZydecoLaydee · 29/10/2022 17:28

I’m in the same situation with my Mom, a year ago she was fully functioning, now can’t remember how she knows me. I’m 39 and she is 73, it’s so unbelievably cruel. I often talk about what my ‘real Mom’ would want, I’m left with this shell of a person who has lost all ability to be rational. She was always so loving and generous, but that has totally gone. I also hope her pre-existing heart condition gets worse before the dementia leaves her like a newborn…

Lentil63 · 29/10/2022 17:30

Your so called friend can do one. I think you have to love someone very deeply and know them extremely well to be able to come to the place where you wish them to have their release from their suffering.
Dementia is a first class bitch, you lose the person you love but they are still animated and show flashes of their former selves. My poor mum was so confused and upset too. I wish I could make it better for you. I’m so sorry you and your dad are having to suffer this horrible, horrible disease. X

TheHappyLoser · 29/10/2022 17:30

Going through pretty much the exact same thing. Just wishing it would end and the torture would stop.
Nothing that can be done.

TheHappyLoser · 29/10/2022 17:33

But your friend is a twat.
My friends completely get my situation and that none of us would chose to be in this place, suspended not living.

Original poster
MegGriffinshat · 29/10/2022 17:39

Thank you.

I’m so sorry for everyone going through this. We’ve not had a great life anyway me and my dad, but for it to end up like this, it just takes the piss. I don’t want to life to be this way. I am so bitter about it.

OP posts:
Xmasbaby11 · 29/10/2022 17:43

I understand. Mil who is 80 has dementia. It is so hard to watch, it is killing everyone around her. Dh wishes she'd died of covid.

Original poster
MegGriffinshat · 29/10/2022 17:44

TheHappyLoser · 29/10/2022 17:33

But your friend is a twat.
My friends completely get my situation and that none of us would chose to be in this place, suspended not living.

Yes she is a twat.

Her dad died five years ago. She said I was evil as she would do anything to have her dad here, even if he was riddled with dementia like mine.

She also said that I was terrible for putting him in a home. We tried having him live with us. My youngest was 15 months. A dangerous situation occurred due to the dementia that could have harmed her. I had to put the safety of my baby above him.

I don’t think you know how horrific it is

OP posts:
Mischance · 29/10/2022 17:44

You are not evil; you are compassionate. You know that this was exactly what he did not want and you care.

It is cruel. I refused treatment for my OH when he got pneumonia, as I knew his existence was torture for him. He had been a very well-respected professional man reduced to nothing. If you are evil, then so am I!

Original poster
MegGriffinshat · 29/10/2022 17:46

Sorry,

I meant I don’t think you know how horrific it is until you have been though it.

OP posts:
StillSmallVoice · 29/10/2022 17:51

Have been through this too. It's grim. There are no upsides. Now MIL is heading the same way. Flowers

Emelene · 29/10/2022 18:07

I’m so sorry.
My Dad has very recently been told it’s likely he has dementia … he’s 64, I’m 29 and we are all feeling terrified.

Please don’t feel bad about not keeping him at home. You have to keep your family safe and your own well-being/sanity intact. I also have young children and I’ve told my parents I want to help but I can’t give up work and be his carer. It’s so hard.

Id be re-evaluating a friendship if my friend said something like that… but it sounds like maybe she’s coming from a place of pain and missing her own Dad?

Would it help to tell us a bit about what your Dad was like when he was well? Flowers

Soontobe60 · 29/10/2022 18:17

I completely understand how you feel. It’s absolutely no life to live this way. My stepfather is just like this. I got really upset the other day because he got very angry and hit out at a nurse who was trying to give him a flu vaccine. I just don’t see why he had to go through that. He sits slumped in a chair for 12 hours a day, is doubly incontinent, can’t see, can’t speak, can’t feed himself. And they want to make sure he doesn’t get the flu because it might kill him!

Original poster
MegGriffinshat · 29/10/2022 18:23

Soontobe60 · 29/10/2022 18:17

I completely understand how you feel. It’s absolutely no life to live this way. My stepfather is just like this. I got really upset the other day because he got very angry and hit out at a nurse who was trying to give him a flu vaccine. I just don’t see why he had to go through that. He sits slumped in a chair for 12 hours a day, is doubly incontinent, can’t see, can’t speak, can’t feed himself. And they want to make sure he doesn’t get the flu because it might kill him!

My dads doctor called me for a catch up and said how lucky we were that he was so healthy and that he’d be around for a long time yet.

Dh had to take over the call before I said something I would have probably regretted. Same when he had covid a couple of months back. The home were so happy to tell us he’d only had a light cold for a few days.

It’s like a big, horrible joke.

OP posts:
Cantthinkofadifferentname · 29/10/2022 18:23

You aren't evil. 2.5 years down the line I'm relieved my Mum died of Covid early on. Horrible we couldn't be with her and wasn't the funeral she deserved, but she didn't have to exist with the horror of dementia.
Much love ❤️

Original poster
MegGriffinshat · 29/10/2022 18:25

Emelene · 29/10/2022 18:07

I’m so sorry.
My Dad has very recently been told it’s likely he has dementia … he’s 64, I’m 29 and we are all feeling terrified.

Please don’t feel bad about not keeping him at home. You have to keep your family safe and your own well-being/sanity intact. I also have young children and I’ve told my parents I want to help but I can’t give up work and be his carer. It’s so hard.

Id be re-evaluating a friendship if my friend said something like that… but it sounds like maybe she’s coming from a place of pain and missing her own Dad?

Would it help to tell us a bit about what your Dad was like when he was well? Flowers

I am so sorry. 64 is no age for this to start.

He was lovely. Lived for his grandkids.

OP posts:
bluebellinthewood · 29/10/2022 18:26

Hugs to you. I just wanted to say that I totally know what you're going through. My mum similarly well kind of had a stroke and she lived a life like this for about 18 Months in total. She had to be hoisted from the bed to a chair, she never went outside, she was doubly incontinent she couldn't talk, barely communicate and didn't really want to eat. As a living daughter seeing her live that life (existing as you say) is the cruelest thing. She was a proud woman and would have hated the state she was left in. I look back now and really the stroke should have killed her. Would have been so much kinder.

She passed away 6 months after she came home to be cared for by my dad. He was utterly amazing to the end, but he did promise her. It broke our hearts which are still very fractured to this day but like you I was glad she spent as it was agonising, not to mention the extra grief you go through. People will simply not get It until they go through such a loss. I'm so sorry x

RampantIvy · 29/10/2022 18:27

I hear you. It's like having a double bereavement.

mypoorheart · 29/10/2022 18:33

Oh @MegGriffinshat I know exactly how you feel. We lost a close relative recently who had lived for 19 years with it. I used to pray they would just die. It took so long. It was horrendous.
They become unrecognisable. Now we have another close relative descending into it. And It is fucking soul destroying. Watching them struggle. I'm very close to them and I have cried so much over it lately. They are already gone. Just not there anymore. My heart hurts thinking about it.
I don't know why we allow people to "live" like this. It is so cruel.
Ignore your friend. She had no idea. Not a clue. I hope it doesn't go on too long for you. Feel free to PM me if you want someone to vent to.

MrsAliceRichards · 29/10/2022 18:34

I'm so sorry OP, your friend is clearly living in complete ignorance to the horror that is this disease. My lovely father in law passed away in April after an almost decade long battle with it. He was in a home for eight years and when he first went in they didn't expect him to last a year. Dh and the rest of the family breathed such a sigh of relief when he finally passed. He had been non verbal with zero signs of recognition for years and it was cruel. I totally understand you hoping he passes peacefully some night in his sleep, dh used to pray the same. Much strength to you.

itsjustnotok · 29/10/2022 18:39

My gran had vascular dementia and it was so hard watching her slowly fade. It sounds like your friends reaction is more to do with her own grief over her dad. People often don’t realise just how awful the reality of living with dementia is. Don’t get me wrong she could just be vile but it’s also possible it’s a reaction to her own bereavement. She should never have called you evil because you’re not. Sending hugs.

AluckyEllie · 29/10/2022 18:42

She’s not a friend, cut her out. You have my sympathy, it’s a hideous disease. And you are grieving for the patient you have lost while their body is in front of you and then grieve again when they die.

Original poster
MegGriffinshat · 29/10/2022 18:46

itsjustnotok · 29/10/2022 18:39

My gran had vascular dementia and it was so hard watching her slowly fade. It sounds like your friends reaction is more to do with her own grief over her dad. People often don’t realise just how awful the reality of living with dementia is. Don’t get me wrong she could just be vile but it’s also possible it’s a reaction to her own bereavement. She should never have called you evil because you’re not. Sending hugs.

I know. I understand how hard losing her dad was for her.

We are all different. My mum died when I was a child, but I would never call anyone evil for saying something similar about their own mum.

it just hurts because he’s in a home mainly because of stupid decisions I made. We tried to move him closer, by the time his sale went though, he was so confused about moving to a new place. We should have stopped it, let him stay where he was 3 hours away, had carers come in. He would have been better in his own home, it was respite care in a home while waiting for his house sale/buying the new one near me that made him worse.

So I am surrounded by guilt too, I could have handled it all better but no one would help. His dr, SS, no one, even when I was begging them to help me.

I didn’t know what I was doing, every decision was born out of sheer panic.

If I could turn back the clock I would do things so differently. I honestly hate myself.

OP posts:
Calminacrisis · 29/10/2022 18:50

Hi OP,

I am so sorry your friend is a twat. It sounds like she is very much projecting her grief on to you.

My mother had Alzheimer’s for seven years, slowly slipping away, losing all her skills and intelligence and sense of humour. I know she would have hated how she was. It was absolute agony to watch, losing her by inches. By the time she had a stroke and I was able to ask that she receive only palliative care, it was a huge relief to know her suffering was finally going to end. When she died, I felt relief and sadness but no real grief, I had already grieved.

You aren’t evil, OP, just a loving daughter in a horrible situation.