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.

Your situation sounds so, so like mine ❤️❤️❤️

I had to get to the stage of telling the police if they didn’t intervene I was terrified I was going to harm us both . Even after that it took another ten days of hell before I rang 111, a nurse came out and watched mum banging her head off the wall, and told me she was admitting mum. From there it was taken out of my hands, she was sectioned and I was told within 48 hours she would never be coming home to me again.

My GP also told me when mum was admitted ‘please don’t take her home’ - to the point I was advised to pack my belongings and leave my mum’s house (I have student accommodation 150 miles away) which I did, very very hard to do .

social work were also absolutely useless with us . As were adult psychiatry . Social worker only got interested after that incident with the police but even then all she did was send a carer out at 8pm to check mum was settled - even if she was whilst carer was there as soon as they’d gone she was either stripping off or pacing the house again .

I went to visit her this weekend, first time since September . When I walked in on the the first visit she stopped, stared at me and said, ‘oh! I know you, you’ve been here before’ - I said ‘you do, I’m your daughter’ - to which her face lit up and she gave me a cuddle.

Went in another twice, second visit she was less receptive but still settled-ish. She’s also doubly incontinent, can’t eat without spoon being held to her mouth. It’s so weird as you expect her to laugh or tell you to stop being so silly with the spoon feeding. Very hard .

Third visit she was very cuddly, kisses, sitting beside me and let me stroke her arm and her hair for a bit . It’s so hard . I keep sitting tonight wishing I could call her , we always talked to each other before bed and I miss her like crazy . The thought of life without her in it terrifies me .

I came away with a bundle of her stuff - birthday cards and old scrapbooks and some colouring in she must have done when admitted, I can’t bear to throw it away.

Leaving mum was so, so hard as I’m scared the next time I visit she’ll have deteriorated even further and won’t be able to recognise me or cuddle me again. It’s like all the ‘grief’ feelings come back so much stronger for seeing her again, and having a positive visit, don’t know it that makes sense . Its so hard seeing her somewhere where everyone is 80-90 and mum’s 57, in her room was a book for people born in the 30s and I felt like saying to them, even my granny wasn’t born in the 30s, my mum grew up in the 70s and 80s !!!

my aunty was very much in the car, ‘you couldn’t have her at home, that isn’t her normal, she can be very violent and aggressive and you wouldn’t cope with that’ which makes sense but it’s so hard.

I’m so so sorry that you’re all going through this utterly horrendous situation too . It’s a living hell, I’m being treated for PTSD - every time my flatmate gets out of bed I jolt upright in case it’s my mum . How stupid is that .

It's awful for everyone; it's awful for us, but when I see the odd patient my own age on the same ward as MIL, and think, God, their DC might be the same age as mine, like @tomissmymum ...it's heartbreaking. It's hard enough to handle at that age when it's your grandparent.

Oh OP I totally get it.

My dad was diagnosed in 2020 just before the pandemic hit. He is not longer a person I recognise. He is still at home, only through the gargantuan efforts of my mum. He is confused, shouty, paranoid, thinks bad men are coming to get his car or break into his house. He's changed beyond all recognition and it's so hard to come to terms with that fact that the person you know so well has gone and isn't ever coming back.

You just don't know what to do for the best. I think this time next year, Dad will probably be in care as he is deteriorating more quickly. It's an evil, awful thing and I absolutely understand the thought that a quick heart attack is preferable to this long, slow decline.

@Alifra last night we had my dad sectioned, your post eloquently puts exactly how hard it is. I'm full of guilt at doing it as yesterday he loved me again for the first time in months he wasn't calling me names or scaring me. He hated everyone else though I had to see him off and it broke me. I'm so tired, I act felt relief today to not be on my phone. I have to say our social worker who witnessed the worst possible behaviour when he visited last week was amazing. The MH nurses who visited were so kind and only 1 day after they came we said we can't do this and they said OK we are going to section him. I'm hopeful he will get a bit better, the place he is in has been quoted as outstanding. I think we have been very lucky in the team that have supported us. I will visit him as soon as I have recovered from this as I'm not sure I could cope if he's angry again

Oh love. I’m sorry it’s so, so hard.
I am glad they helped you.

@HufflepuffRavenclaw I have a friend who lost her dad in the pandemic and couldn't say goodbye. She's still devastated, always posting things on Facebook about it and how grief stricken she is and how unfair it was. She is of course entitled to her grief and it'd not a competition but I just feel like telling her to just stop because I say goodbye to a bit of my dad everyday, ive had to have him sectioned, ive been sworn at, threatened and then he cries and hugs me. I would love this to be over for my dad, for it to end quickly, him to not be scared and confused, in a strange place with strange people, it sounds awful but she doesn't know how lucky she is. I don't know why it makes me to angry but it just does.

I completely understand @Tara336 . Dementia is horrendous. Like you say it’s not a competition and sudden loss is traumatic too. But seeing someone slipping away bit by bit is so hard. Take care of yourself.

How is everyone getting on?
Still waiting for a nursing home place for MIL, so she remains on a psychiatric ward, adamant that we've all conspired to keep her there. The violence and agitation don't seem to abate, no matter what they give her. She simply won't rest now, which, as she rarely eats either, is wearing her down to nothing. She still has the bones of language and a compulsive kind of mobility, but her functional memory is non-existent, ie she'll begin doing something, then within a matter of seconds she forgets what it was, whether it's going to the toilet, having a drink, walking into her room, going to bed.
During Covid restrictions, I was unable to visit a very much loved aunt, who was in a nursing home with dementia and various comorbidities. After she died, I remembered her as she was, as a warm, loving, nurturing woman who enhanced our childhoods. My cousins, however, had to lose her by degrees, and their last memories are very different. Nobody deserves that.

My DF is still sectioned it ends the eeek after next. He seems to fade in and out, when he's present the smart sharp man thats still there asks questions and is very sarcastic still, then he disappears and the scared confused tearful man comes back. DM visited last night and DB informed me that she believed DF was heavily sedated. He has been aggressive on visits but thankfully only verball, he keeps asking to come home but we just can't go back to how it was. DB videoed some of what was going on and it's quite disturbing but more so because that was one of the calmer days! There have been some lighter moments DF told DM he was on hunger strike, while simultaneously eating a box of malteasers and a patient escaping and running round the car park with the psychiatrist and a nurse in hot pursuit. I don't know ow what happens next but all local care homes turned DF down because he was so aggressive we have been kicked, pushed, threatened and sworn at I assume they will either give DF a clean sheet if they think he's safe now or keep him longer.

I hope they come to the right conclusion for your DF. MIL's section was moved on to a section 3, which has a much longer shelf life, as it were. Will you be able to attend any meetings about this?

@DahliaMacNamara we are hoping for section 3, we have a meeting on Friday as the section 2 is nearly 28 days now. Do you know if they make that decision quickly?

I only have our own case to go on, but yes, MIL was moved seamlessly onto Section 3, ie for treatment rather than assessment. We had the impression the team had already come to that conclusion beforehand.

@DahliaMacNamara thank you.l, that gives me some hope that I won't have to battle to get the help he needs

Was that meeting today? How did it go?

@DahliaMacNamara yes it was, 2 hours and 7 members of the hospital team, the room was packed. DF now has a DOLs order as he lacks capacity (deprivation of liberty) and we are awaiting them deciding if he needs a nursing home or care home. I think it will be nursing home from what they said and sounds like that gets funded whereas a carehome would be self funding. They said his dementia is now considered severe. I saw DF after the meeting and he's got worse in the last week, he cried, didn't speak and didn't know DM name and I'm not sure he recognised us. We have a DNR and no treatment order now so if he gets another chest infection they will let nature take its course. The Dr said it is what he would have recommended if DM was unsure but she already knew what she wanted fir him. It was awful sitting there and effectively discussing my DF dying. I was ok in the meeting but when I left and called DD I broke down. I felt like we had signed a death warrant.

I feel for you. Give yourself a few days to process this, but try not to wear yourself out feeling guilt. What else could you have done? The situation isn't something you wanted, or could possibly have prevented.
Try to think of the DNR as something that avoids inappropriate intervention.

my mum is at end stage dementia cant talk is bed bound and we have a DNR for her plus a peace plan which means she wont be sent to hospital
Personally I feel at this stage of this awful disease it's the right decision
Hopefully you will be able to get your head round it and not feel guilty x

That's so so sad

It's awful isn't it

It was my father'a heart problems that went in the end
His speech had gone and each week he was getting weaker and weaker

We tried to keep him at home for as long as we could 😢😢😢😢

@orangetriangle that's the name I couldnt remember "peace plan", my DM didn't hesitate in saying yes as she's thought it all through and maybe has had it mentioned to her before. I just wanted to know what it entailed and the Dr explained and assured me it was kind and DF would definitely not suffer. If it ends this hell for him then it is the right decision and deep down I know its what he would ask for if he was able too. I definitely need to have some downtime today. I don't think I'll visit DF today as seeing him cry it's just so awful and I think I'd make it worse for him if I get upset. We did have a little laugh afterwards though as my DSIL was with us and one of the patients (a sweet old lady) kept walking up to DSIL and putting her hand in the small of her back and saying "it was so kind of you to come, have a safe journey home" and guiding her to the door. DSIL was shown out about 3 times and came back to us before a nurse intervened.

the awful thing about it is you feel so helpless as there is nothing you or anyone can do
I have no idea how long this last stage of dementia will go on for
In my head I think how can anyone go on like this literally unable to move talk sit up and eating literally a few mouthfuls of sloppy food each day and a few mouthfuls of fluid literally
She has been like this since Christmas now I honestly dont know how she is keeping going but apparently all her sats are as expected for her age so who knows
sounds awful but she has no quality of life just sleeps and or groans most of the day so for her sake I hope she isnt too long like this
Does anyone know how long this goes on for she is barely eating and drinking but we have been told technically she is not end stage of life so???

@orangetriangle I'm so sorry it is bloody awful isn't it. I was told DF is at the beginning of severe dementia now and the Dr said it "won't be years" before it's over so I'm guessing a year for him. He's put on 7lb apparently since arriving in care but we are mystified as he looks frailer and has deteriorated in our eyes. But maybe he's drinking more and they arecable to get him to eat more then we could although they did say there's days she he won't touch a thing.

MIL is at a similar stage according to her doctor, @Tara336 . It's confusing because you read about patients like @orangetriangle's mum going on for ages with no speech or mobility, and MIL's definitely not there yet. However she's on a very steep downward trajectory; you wouldn't have anticipated anything like her current condition this time last year. Every setback like an infection or a fall sends her spiralling even further, and there's never any reversion to how she was only the week before.

Tara336

Yes it's awful mum was only diagnosed two years ago and has gone from having a few memory problems to this which is end stage dementia stage 7 is the last stage I think which is what this is
we kept her at home for as long as possible gradually upping the care until carers were there virtually all the time but it became too much for them and the stress of all the falls and difficulties etc was quite hard. So in November we made the difficult decision to put her in a home which has relieved the stress but even since being in there she has deteriorated
I really cant see mum lasting a year like this she is so thin and frail when they weighed her in hospital a couple of weeks ago she had already list ten pounds guessing she has lost even more now and she wasnt big to begin with
I'm amazed your dd has managed to put on weight

Dahlia I would say my mums been at this awful stage since just after xmas so about 4 weeks at xmas she had limited words and was not bedridden but it was still hard to understand her and she didnt really understand us and couldnt walk
going into the home in november she could speak in sentences though wasnt very clear knew who we were could walk just about and was awake all day and slept all night was incontinent though still and having frequent falls and couldnt remember things from one minute to the next
I would say the stage my mum is at is end stage dementia and it mimics end of life as my dad was when he was dying of cancer
However we have been told it is not end of life as hers sats blood pressure wtc are all ok
so have no idea how long this is going to go on for