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.

I'll look for this book, but to be honest, I don't recognise this picture in my own DF's situation and the many similar situations described by others in this thread.

My DF, now 88, diagnosed with Alzheimers 5 years ago, has spent most of the past 7 months in hospital. He is distressed, confused, agitated and upset. He cries out for help - please help me! Asks - what's wrong with me? He is unaware of his own body - doesn't recognise his own foot if he sees it sticking out from the blanket. Can't move his own body. Has to be manhandled by at least 2 staff for every bodily function, has to be hoisted into a special chair which he can't fall out of, doesn't recognise food or drink or know what to do with it.

It is horrific, and I, like the many others here who've experienced this, really do hope and pray that he will die soon and this dreadful ordeal will be over. I would not wish to live, or rather, exist like that, and no-one else who's seen it would either.

You’re assuming I haven’t seen it. Incorrectly.

Hi op you have my sympathies as well. It’s completely shit. My dad is 83 and it’s a very similar story and he’s now in a home (an extremely depressing place). I too am only 40, also with 2 young children and I’m an only child. :( it’s all too much and it’s so undignified for the sufferer. I too wish he’d died of Covid. And I don’t think that makes any of us evil.

So, having seen the effects of dementia (which are not the same as the effects of another healthy old age, with the usual aches, pains etc which come with it) what positives do you see? Do you feel reassured by what you have seen that you will find value in living in permanent distress and confusion, unable to make sense of what is happening to and around you, dependent on strangers for your every bodily need?

^. These are genuine questions, btw. I’m not being sarky. I’m in my mid-50’s and I appreciate that our attitudes can and do change with our life experiences, but I really cannot see that I would ever be content with the life my DF is currently enduring.

There’s no upside.

Totally agree no upsides I can see whatsoever

I know that Alzheimer's and dementia can look slow at the beginning and we all accept those changes and it becomes easier with a diagnosis. Lost keys and forgotten names are part of the course.

Watch a loved parent unable to speak, articulate pain or eat. Have double incontinence, suffer bed sores and muscle wastage is unbearable. All that is normal life gone.

I miss my funny kind DM and I go and hold her hand and hope in some level it brings her comfort.

18 months ago there was nothing wrong with my mum apart from slight memory problems bit nothing much they diagnosed alzheimer's and mixed vascular dementia. Today she is in a home doubly incontinent loosing her speech and her mobility unable really to have any kind of conversation with you and cant remember things from 5 minutes to the next sits there crying and or wailing for much of the day

@ Seeingadistance. I watched my mother in a semi-comatose limbo between life and death for two years following a stroke. She was denied the peaceful and dignified death that she should have been allowed; sometimes some relatives try to hard to force medical staff to prolong life beyond the natural point it should be allowed extinguish. I understand fully dementia can be hard to watch. Artificially prolonging life is rarely in someone’s best interests.

That is wholly different from deciding to end the life of someone who is not actively dying because they no longer fit the image we want to have of them. We judge the v of life when we have not walked in someone else’s shoes. When we cannot understand what they are feeling or enjoying. I have met hundreds of people with every stage of dementia. Many are living active and content lives - albeit not in a way we want them to.

Many others are suffering from poor care. With the best will in the world an untrained career going in twice a day for half an hour cannot possibly be expected to meet their complex needs. The tragedy is less dementia and more how we care for people with dementia. Pain is not recognised or treated - we assume distress is dementia related when decent analgesia administered routinely can transform someone. Pain management for people with dementia is appalling. Treated they are less likely to exhibit distressed behaviour and more likely to engage. They can feel contented again - but we don’t have enough Admiral nurses to provide direct care and expertise.
There are many successful strategies to improve the care of people living with dementia. Euthanasia isn’t one of them.

My mum’s not in any pain, we know that, she sees a consultant every week, she’s under a huge medical team .

But she’s doubly incontinent because she doesn’t know how to use a toilet now . She doesn’t eat much . She can’t speak much . She barely recognises us . She paces constantly . She can’t sit down and relax . Can’t watch the TV . I can’t tell her things and have her listen . I can’t show her photos and chat about the old days . Can’t do crafts . Can’t ping her nails . Can’t really comfort her beyond very basics . She can’t engage on a meaningful level for more than a few seconds . She has fits . She’s been incredibly distressed by hallucinations we think but she can’t communicate them to us because she can no longer talk much or understand spoken language .

99% of the time has no idea she’s my mum, or indeed who she is, as far as we know .

She could live another ten years like this, just wasting away . No real improvements, no big gains, no massive recovery, just getting worse and worse and worse .

And that’s with 24 hour 1-1 care from highly specialist nurses - there is literally a nurse by her side 24/7 - and doctors and a huge family who all love her to bits and would do anything for her . Family of health and care professionals who bend over backwards every single day to try and give her some semblance of a quality of life .

She’s not even 60 . She will never see me marry, or have a baby . I have to visit her in a home full of 85 year olds .

Hard isn’t even the start of it, it’s the single most distressing thing I hope my family ever face, I wouldn’t wish it upon a living soul .

Seriously, if you have any ideas about how to make this better then please God tell me, because I’ve got nothing ?

Name change fail, that was meant to go under my username re my mum !

@CaronPoivre sorry I disagree. At the end my darling mum was bedbound, wasting away, not eating and doubly incontinent. We wouldn't let an animal carry on like that. I honestly believe that when someone reaches the point of no return they should be allowed to die with dignity surrounded by those they love. I had to watch my mum on end of life for a week struggling to breath it was horrendous and in the end I wasn't there when she went as it was in the early hours. It's cruel. I'm glad she's at peace now but surely we can do better as a society for the dying??

I agree totally
I watched my mum die, I knew she was dying, so did the staff but we had to just watch and wait for it to happen?
It just seems so wrong

@PeloFondo the staff fully agreed with me when I said how awful it was waiting for her to die. While I was at her side they kept popping jn to see if she was still here ! It's bloody awful really.

I hear you. I'm 43, an only child with a high-needs disabled child, and both my parents have dementia. My mum is declining at a far quicker rate than my dad, who lost his short-term memory over a decade ago but is still able to hold a lucid conversation.

I first noticed about 5 years ago that my mum started saying hurtful and inappropriate things, which was out of character for her. She then started forgetting words or obliviously using the wrong words. Just before Covid hit I started recording a family oral history for posterity. Due to lockdown, we had to pause this for 6 months, and by the time we resumed it I was gobsmacked rapidly she had gone downhill. She had no recollection of memories she'd spoken about vividly to me as I was growing up and she couldn't even answer basic questions such as where she was born. By the time I finished I had over 30 hours of family history audio but it all ended up being my dad talking on behalf of them both - I so wish I'd started the project sooner.

An avid reader, Mum reached the point where she was unable to enjoy books, watch the television or take part in conversations because she couldn't understand what was being said, let alone contribute. She stopped seeing friends, or even answering the door because she was too embarrassed by what was happening to her.

She's always been stubborn but dementia has exacerbated this greatly. Dad got her to see the GP who referred her for an official assessment, which included an MRI scan of her brain. She was insistent that she wouldn't go because she was convinced the MRI was going to kill her. Somehow, my dad persuaded her to go, and afterward, having obviously not died, she became convinced that the MRI had 'cured' her and therefore she didn't need any more help because it was a waste of everyone's time.

My dad was in denial because she was still able to cook and clean (he is completely undomesticated and reliant on her in this way) and do all the physical things she loved such as gardening. Mum and Dad would visit regularly to help me with my garden but it reached the point where Mum couldn't see all the real work that needed to be done and simply spent hours cutting the hedge with a pair of scissors, despite the fact we had a hedge strimmer.

For their 50th wedding anniversary, Dad spent a lot of time and expense planning a trip to a 5-star hotel with visits to country gardens which he hoped she'd love. On the morning they were due to set off she point-blank refused to go because she didn't want to leave the house. Mum and Dad's closest friends who they've known for decades planned to come over from Sweden and stay with them but at the last minute after they'd booked their flights Mum turned round and said she didn't want them staying, which was mortifying for my dad to have to explain.

My daughter was critically ill earlier this year and spent a month in hospital, but by this point, Mum couldn't even remember her name, let alone grasp what had happened.

Mum stopped coming with Dad to visit me, so I now only see her if I go to her house and half the time I visit she hides away upstairs, refusing to come down because she has 'important' things she needs to do, such as ironing my dad's shirts and washing her hair. It breaks my heart that my 4-year-old can name everyone in my wedding photos except my mum because they don't have a relationship.

It became apparent during a recent visit that Mum has stopped cooking and Dad has been living off cake and cereal because he doesn't even know how to work the microwave. Mum used to be so houseproud now she just doesn't notice things and there's dust and mess everywhere. She's started hoarding - on my last visit I found over 30 packs of mouldy cheese in the fridge, enough olive oil, and washing liquid to survive the apocalypse, and an entire room filled floor to ceiling with toilet roll.

Dad is insistent that for as long as he is alive they will live together in the home they have shared all their married lives and he will take care of her. I don't know how realistic this is but every time I try to speak to him about what the latter stages of her decline might involve he buries his head in the sand and says he doesn't want to talk about it. At present, he is in good health but he is 4 years older than her and I worry about how the strain of their situation is taking its toll on him. I try and help as much as I can but as I said, I'm a carer to a disabled child and I cannot clone myself. I'm facing a very real possibility that if my dad passes first or becomes unable to cope I will have to move my family into my parent's house so I can care for both my daughter and my mum under one roof. This means I will have to give up my part-time job and my husband will be the sole breadwinner.

Of course, we could look at nursing home options but Mum was always very vocal about how they'd have to take her kicking and screaming from her home - she lives for pottering about in her garden and if that was taken away from her, there would be nothing left to live for. Her own mum got dementia at the same age and existed for 11 miserable years in care, staring into space. At the time, my mum begged that if she ever got like that I should put a pillow over her head because a living hell was worse than death.

Mum is only 73 and is extremely physically fit, so it terrifies me how many years she has left of this cruel decline. She was a highly intelligent, capable and articulate woman and now she is a husk of her former self.

I feel the same as you - it would be so much easier if she just died one day. To anyone who thinks that sounds cold, they clearly haven't watched a loved one deteriorate before their eyes. I've long since come to terms with losing my mum. I've grieved for the person she once was who will never return, no matter how long she survives. In rare moments of clarity, she asks: Why aren't I dead yet? I wish for her sake and all our sakes that she passes soon and can finally be at peace.

An hour in a room with a mobile dementia sufferer should be a compulsory meeting for all new Health Secretaries.

@CaronPoivre you say some dementia sufferers are thought to be happy.

That’s not the lived experience of anyone, everyone, I know who has seen the disease at work. Anyone with or without dementia.

The hallucinations, aggression and constant terrified misery are so horrifying that typically it takes adults a few days to recover from a visit.

Children aren’t allowed to see their demented grandparents or great-grandparents because contact is traumatising. I don’t use that word lightly.

You wouldn’t let a five year old see an 18 cert film - you sure as hell don’t let them in the room with Grandad.

Adults who have prolonged contact with DS have a 50 per cent chance of mental breakdown.

I can't argue against the notion that there are those who can live in reasonable contentment with dementia when they have the right support. But then there are those like relatives described above, and MIL, who can't follow her own train of existence for more than a minute, and is for the most part seriously depressed about it. And angry, and violent, and paranoid, and who the hell could blame her? It's a life of strangers constantly coming along and making her do things: take strange pills, eat strange food, put on clothes she doesn't recognise, get showered. As far as she can tell she has no say in anything that happens to her. She does get to make choices, of course, but instantly forgets what she wanted, so it still feels as if everything is imposed upon her.
She's on a secure ward, and gets the best of care from professionals around the clock. There are other patients there who, while they obviously need 24 hour care, seem to my untrained eye to be perfectly content with wandering around the communal areas doing imaginary things. MIL is always, always unhappy. She can't focus on distractions like TV or music. If she could live another ten years blithely polishing non-existent silver or doing a quickstep with an invisible partner, I'd take that. But right now there is nothing whatever that leads me to believe she has any quality of life.

Can I just thank you for this post, it was such a relief to read that the way I am feeling is normal

Flowers 💐 for you too, sweetie. It’s a tough one for members of this club, don’t we know it.

I agree, my fathers life far more fear and anxiety than anything else these days. He is trapped in his own hell, and I've realised that the vast majority of his life now is us trying to get him to do things he doesn't want to do (get dressed, bathe, eat something) while trying to reassure him we are not trying to attack him while he shouts at us and fights us.
It's so sad, and also exhausting to watch. I can't imagine how horrible it must be for him.
We have tried him on several different anti depressants, and the first few just made him worse - crazy paranoia, pacing around at night time that men were coming to get him, they were hiding in the garden - he would shout 'there they are' while pointing behind a cushion... Thankfully the new ones seem to be calming him somewhat, but it's still difficult.

I'm sorry OP, it's so hard, and your friend has no idea what she's talking about.
I'm 38 and my dad is 81, in a way I'm glad that I'm a bit younger and don't have kids of my own to worry about, because it's mentally and physically exhausting taking care of him. My mum is 78 and has her own health problems. My dad is also physically very fit, so as his brain declines, his body just keeps going.

I dread the future, and have had days where I hoped he would just not wake up one morning. I love my dad so much, and miss the person he used to be.

My DF has descended rapidly until Dementia after an accident, he had it before but undiagnosed but became much much worse after the blow to his head. It is so bloody cruel and there's nothing we can do but watch him deteriorate, he is doubly incontinent, doesn't eat and doesn't really communicate much this has happened over the space of 6 months. One of my friends dad's died during COVID and shes grieving so badly because the loss was so sudden, but watching the suffering my DF is going through I know which I'd prefer for him and it certainly isn't this long drawn out undignified decline.

My dad died of dementia. It's horrible.
He went from fierce intellectual to grinning mute in a matter of 12 months.

One of our coping strategies was to delineate him to dad before and dad after dementia. That helped. It's been a few years since he died and I can finally have fond memories of him before.

In terms of care I changed my view and now firmly believe that specialist dementia care supplemented by caring family days out, snacks and visits is best for all. The care home staff were lovely and patient, there were nice activities for him to do. The food was excellent.

They did all personal care with a cheery smile which kept his dignity (he would have hated the idea of his family doing that). And the most important thing was that he was safe and sound with 24/7 supervision.

I too longed for it to be over and felt bad about that but I think it's natural. Love means we don't want to see them suffer, even if they are mostly unaware that they are suffering.

My advice is to go with the flow of your feelings, talk to others who understand and keep visiting him and chatting. I know that my dad got good happy vibes from our visits. He smiled and held my hand and even danced with me one Christmas (he hated dancing!). Some special memories despite the circumstances.

He knew he was loved and you can give that to your dear dad too xx