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.

Dementia is pretty horrific. My Dad had to go into a care home aged 75. He got Covid 2 years ago and was bed bound ever since. The care home kept saying how well he was doing. I dreaded every call - he coukdnt sit unaided, walk, feed himself, know who anyone was, double incontinent. How was that doing well??? It was just an existence for those last 2 years. I refused all Covid boosters as I couldn't bare for him to survive it again and be worse off still. He died peacefully a month ago and I am so relieved for him that he is no longer suffering. He would not have wanted to go that way, had he known he would have been horrified.

There is a brilliant book by Luucy Pollock, a consultant gerontology that helps place younger people's views on dementia and ageing into perspective.

Most 85 year old feel they are in comparatively good health.
Most people living with dementia aren't necessarily wanting everything to end and feel value in their altered life.

It is not for us to judge the quality of someone's life. Rather it is an individual's right to feel.

@MegGriffinshat you sound like a thoroughly decent person doing their best in an unbearable situation. Please don't feel guilty. Your dad (pre-dementia) would not want you to feel guilty about anything. Your so called friend must have the emotional IQ of a lettuce. 💐

I'm so sorry you are going through this and your friend has absolutely no idea how awful dementia is.
I lost my dad in July this year to vascular dementia. He was 75 and up until August last year was independent and lived a happy life. He started having falls and then forgetting things, we got him carers at home and within a month if it starting, he was sent to hospital for further testing as at that point the doctor still didn't know what was wrong with him. Three weeks later, he had deteriorated so much that he was discharged into a nursing home. Watching him slowly slipping away, not recognising people and losing the ability to walk, hallucinating was horrific. You are right, we don't allow pets to suffer like that so why do we let humans. He would have absolutely hated to see himself and thankfully had very few moments of clarity. I was the same that I wanted it to end for him as it was torture seeing him like that.
Thankfully he passed away so peacefully, with me and my brother holding his hands and talking to him. I also lost my mum as I child so in understand exactly how you feel.

But do not feel guilty for how you feel. It's normal. No one wants to see their loved one suffering like that and losing their dignity. I take comfort in the fact he is at peace now and knew how much he was loved.
I'm so sorry you are going through this and sending you lots of love and strength xx

Oh and as for complaining about the council person.

For some reason, everyone in my life seems to speak to me like i’m a piece of shit. And when I try to stand up for myself, I am then accused of being there unreasonable one.

I didn’t complain, as a few weeks before I had made a complaint about a social worker who said to me that I was harming my father by moving care homes.

the one he was in for respite, we couldn’t see him for 8 weeks due to covid out breaks and when we did, he had lost 5 stone and had sores and bruises on him. Complaint about the home and SW got involved because she put him there, SS and council wouldn’t hear of any complaints because that’s the home they discharge to basically and I have since found out, pressure people who are self funding to then stay there.

It was all a horrible mess even with the new care home involved who agreed with me that he hasn’t been cared for properly (he gained 2 stone in his first month at the new home, it turned out that the other place hadn’t been feeding him if he slept though meal times, the admitted that, so some days, he didn’t eat, he’s been back to full physical health and weight in the 8 months he has been at the new home, I maintain that the last place would have killed him).

Ended up with them trying to say I had harmed him by moving him and that I had taken years of his life with the upheaval. Their own dr agreed, other drs wouldn’t touch it with a barge pole. A private GP stood up for me, but the NHs and social care wouldn’t accept his findings. It was such a huge mess, I was actually suicidal at one point.

So my ability to cope with any of this is on the floor.

So this next hill with the funding is already causing me stress.

Oh and the home wasn’t actually shut for 8 weeks due to covid. It was 4.

They told me that to stop mw
visiting and seeing the state he was in. They had to admit that. But still nothing happened. We just got a refund for two weeks that we paid for after the 6 weeks respite funding ended.

I was also told that if I contacted other families there to warn them, I would be arrested.

Just to be clear - we moved him the next day after we saw him. The home he is in now is fantastic.

OP my heart absolutely goes out to you. I lost my darling mum to dementia a month ago. It was the most awful time but we were lucky enough to have a wonderful care home where she was cared for and loved when I couldn't be there. The last year was so hard when I visited as she had become bed bound and didn't recognise me, she just lay there snoring with me looking at her ! I would sit there willing her to just go and be at peace as I couldn't stand to see her in this way, she was a strong, vital woman reduced to a little old lady just awful. Her last week of end of life we took it in turns to sit with her, I wanted to be there at the end but she died early hours of the morning. I feel relieved she is free but also a great sadness, I grieved long ago for The mum I knew. I agree that we wouldn't let animals suffer in this way and it's disgusting that humans are allowed to. Sending love

You are definitely not evil.
Dementia is a living death and like you hope the phone rings to say mum has died.
She doesn't know who me or my brothers are.
Keeps telling everyone to f* off.
My mum never swore.

Your friend is clueless and shouldn't have said that. Dementia is terrible. It's as though the person has been replaced by a complete stranger, one who cannot communicate properly or do anything for themselves. It's very cruel.

I used to be a carer for people with Dementia and saw the devastation it does to families. My brother's wife has got Alzheimer's (she's 69) and has changed beyond recognition. I hope, for your sake but mainly your dad's, that the person who use to be your dad goes soon.

I bet you comforted your friend when her Dad died and she grieved. How dare she repay that with cruelty, not only to you but to wish a hellish existence on her own father just so she gets to keep him in her life. What an utterly selfish thing to wish. What a terrible person I hope you haven’t spoken to her again.

I also bet that you have been doing the best for your Dad, any panicked decisions are because as a society we don’t allow for any kind of planning and react only to a crisis situation. You have been doing brilliantly for your father.

I know what it’s like. Only child. Divorced parents. My Dads started when he turned 50 and my Mum in her early 60’s. They were both young parents, they just got ill young too. I spent 10 years navigating Dads care needs despite his extreme resistance to any kind of help, I finally get him into a good home and then my Mum starts forgetting things. I am in my 40’s, have kids, can’t work full time now due to caring responsibilities, no chance of an inheritance and no way of preparing financially for my own retirement. No one acknowledges the trauma of watching a loved one deteriorating for YEARS, until they are basically kept alive against their own will. We are just told off for hoping it doesn’t drag on for decades and guilt tripped by insensitive arseholes with no personal experience of dementia. I am willing to bet that Council worker hasn’t lost a parent to dementia. My friend who was a nurse and carer for much of her professional life was totally shocked by how much it affected her when her Mum started showing signs, nothing prepared her for the toll it has taken on her. We both agreed this is the worst thing that has happened to us, and neither of us is exactly a stranger to personal tragedies!

OP I bet if your dad knew what you had done for him he would be incredibly proud of you.

Thank you so much for your kind words and I am sorry your parents went through this so young. That’s heartbreaking.

My friend hasn’t spoken to me. She was very angry with me.

I’ve not had the easiest life but this situation has been the straw the broke the camels back. There is just no end in sight for me at the moment. It’s all one slog after another and watching him get worse.

People do underestimate the trauma. They think care homes are just full of doddery old people playing cards. They don’t realise the living nightmare these people are trapped in and the toll it takes on the people who love them.

My friend hasn’t spoken to me. She was very angry with me

I'm really sorry that they are being so shitty with you. Very hurtful but I'd be tempted to see this ad the end of the friendship.

My mum has very advanced dementia. It’s an evil disease and you friend is an ignorant fool who has no idea what she is wishing for.

I’m so sorry you are going through this. I completely agree that people should be able to choose their own end of life.

I’ve read all your messages now and I am really angry for the way that you have been treated.

You’ve done a sterling job in a shit system that has treated you with decency, compassion or even practical support.
I’m so sorry you are going through this.

I just want help and good advice and I don’t know where in RL to turn.

Everything I’ve been told is conflicting. I’ve contacted all the people who are supposed to help. Everyone has something different to say. I feel like the one who is losing my mind.

And we got the DOLs papers today to sign. Like
someone else said, what is the point in all this when you are basically paying your life savings to be held against your will.

@SinisterBumFacedCat I'm so sorry to read about your parents.
Honestly thank goodness they had their family young. Like so many people are in their 40s having kids the thought of taking dementia in 50s or 60s absolutely terrifies me.

So sorry you're going through this. Whatever you do, it seems there's guaranteed to be some clueless twat waiting to judge you. You wish this was all over? Then you're callous and heartless. Looking for a care home? Why, you lazy sod, why can't you look after them yourself, after all they've done for you. Caring for them yourself? You just want to make sure your inheritance doesn't get spent on care home fees. And all the while, you see the people you love stuck in this living nightmare for fuck knows how long, and it breaks your heart.

I hear you, my mum’s 57 .

I absolutely don’t want her to die, I don’t want my mum to go . But she’s suffering beyond imagination, and it’s hell . She can’t talk much, she can’t make eye contact, she can’t eat without help, she can’t sleep properly, she can’t really engage in anything at all .

How is that any sort of a life? So in that sense I do want the end for her .

She’s extremely well cared for and very safe .

We’ve had to go through the process of handing her house back, packing her belongings up, her phone’s no longer an active line . Most days I’m finding I can get up and get going and I’m unbelievably sad but I can still sort of live .. today’s not been one of them, I’ve not wanted to move at all .

I’m so sorry you’re going through this too

Op, I fully understand. My wonderful, highly intelligent and extremely sociable dad died from dementia almost 3 years ago. Like your dad it came on fairly quickly and was lasted about 2 years. It was so difficult seeing my lovely dad wasting away like that. My parents were married 59 years and had a wonderful marriage but because my mum and I loved him so much we used to pray he would be given peace. My dad would have absolutely hated to have lived like that. Dementia is an horrific, deeply cruel disease and my hope is that they find a cure soon.

My mum has it 12 months in a bed either sleeping or demented. It's a cruel end to a wonderful life.

She would hate it,

Oh gosh @tomissmymum, at 57 that must be so incredibly hard. It's such a cruel disease anyway but to have it so young

its truly awful mum will be admitted into a care home wednesday She has had 2 near falls and 1 actual.fall today alone Her brain cannot remember how to walk much if the time
It's no life whatsoever and she needs 24hour care now. It's all such a worry Its dreadful so many go through this

It’s awful. I’m so sorry. Noone gets it unless they’ve been through it. It’s hideous, nearly broke me (but didn’t). Keep talking. It helps to talk to people who understand.