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Dementia and Alzheimer's

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Not visiting my dad . Advanced Dementia. Care home. Guilt . Guilt and more guilt

62 replies

Kenworthington · 10/09/2017 19:02

My dad has very advanced dementia- Alzheimer's and vascular. He's been in a home 2 years now. My mum still lives in their marital home. She visits him about 3-4 times a week. When he first went in the home he wasn't too bad ( hindsight is a wonderful thing right)- he could walk around, talk, recognise us etc etc.
He's gone massively downhill, mainly since Jan this year when he developed pneumonia and remarkably survived it. He looked horrific. I was shocked really really shocked. He was in bed and grey and so frail looking. Anyway so he got 'better' but really he shouldn't have. They gave him 3 lots of antibiotics to kick the shit out of the infection. Which yes worked but he's now no quality of life. He now can't walk, he's doubly incontinent. He has to be winched from his bed into a massive wheeled armchair and then back again later in the day. He can't move himself . He hardly speaks and what he does say is in a whisper and makes no sense. The thing is I can't go and see him. I know I know I should. There's nothing physically stopping me. I just can't face it. I've not been since June. I'm so ashamed of myself. It's not my dad lying there. I can't cope with the other residents there either. In fact that's a massive thing for me. I. Any cope with the unpredictability of them, they sometimes get too close or touch me, they make noises and they're up and walking around and being fine and my dad is just lying in a foetal position in bed. I just can't do it. And I feel so so guilty about it. I know I'll regret it if he dies and I haven't been. But partly I'm inwardly angry that they gave him those antibiotics. He could have been bloody free from all this. I'd signed a dnar when he went in and in addition they were meant to ask us (the family) what we wanted to do in the event of an infection as and when it happened which obv they didn't do.
I don't want to complain about it and obv time has passed since then . I don't want to seem heartless. The carets said they 'weren't ready for him to go' because they love him. I just feel like they are working with these dementia sufferers night and day and are almost blind to how much my dad has changed since he went in and how it would have been the kindest thing to let him go.
I'm waffling. I don't feel like I can talk to anyone in RL about this at all. No one really understands.
I've got to visit haven't I. It can't go on. He's not going to go on forever. I have no idea how you know when it's near the end. I even google it and look for signs. It's awful. I feel so guilty. He's my dad I love him but he's not my dad at the same time. I don't know what to do or how to feelSad

OP posts:
Puppymouse · 11/09/2017 15:59

My DM went through this in recent years with my DGM. Dementia is such a horrible horrible disease. I wasn't really allowed to visit but did go to the home fairly near the end. DGM had stopped eating anything much and her whole bed smelt of faeces. I was so upset seeing her lying there. But I went. And I sat with her. And I told her I loved her and when she died I felt at peace as much as was possible that she wasn't suffering anymore and I'd had the chance to say goodbye. How does your DM feel about you not going? Flowers

Samsara123 · 11/09/2017 16:01

I do think that it is good for the care home staff to know that their patients have regular visitors who are proactively interested in their well being. That shouldn't make a difference to their care.

BigSandyBalls2015 · 11/09/2017 16:10

Don't feel guilty about this, do what you need to do. Like you've said your dad isn't there really, you lost him a long time ago.

My mum is in a similar situation, and my visits have decreased from twice a week or once a fortnight or so - she has no idea who I am or any recollection of my visits.

My DD(16) sounds a lot like you re: the touching/noises/smells (even the lack of crying!) and she absolutely hates visiting, it's traumatic for her. I've told her she doesn't have to go. Mum has no idea she's there, so why put DD through that. Same with you and your dad, I'm sure he wouldn't have wanted you to feel like that.

TopBitchoftheWitches · 11/09/2017 16:19

Op

I have the same with my mum. She's only 63 but has been in a dementia home for two years now.

I've had to write a dnr request as I have POA for both finances and health.

She isn't my mum anymore, she doesn't know me. She is as pp said just a shell, just there.

It's so very hard Flowers Flowers

crumpet · 14/09/2017 11:42

Samsara, I agree, it shouldn't...

tn126dp68 · 22/04/2019 17:32

I realise this is an old thread. I found it by accident whilst feeling dreadful guilt about not wanting to visit my mother who has severe dementia. It was comforting to read that other people who care have this same problem nevertheless. Thank you. Stephen

cptartapp · 22/04/2019 18:10

My GM died aged 89 in a care home with dementia. She was a feisty, funny character who had previously lived for her foreign holidays, and at 87 was flying abroad on her own after 67 years of marriage when my grandad died.
The last time I saw her she was in a nursing home, was talking to someone from the past who wasn't there and wetting herself. That's my last memory. Devastating.
I've been nursing almost 30 years and think sometimes we preserve life at all costs. These are the issues we face when people live too long.

GETTINGLIKEMYMOTHER · 25/04/2019 12:57

I do sympathise, OP. Please don't feel bad. My mother was in her dementia care home for very nearly 8 years and for the last few she was in a most pitiful state, mostly just slumped in a chair, no longer knew me and was incapable of any kind of conversation, or even of any response at all. I did still visit perhaps once a week, but would sometimes miss - she wouldn't be aware anyway, and I knew she was well cared for.

I don't blame you for being angry about the ABs. Having seen so much of dementia (my mother had it for around 15 years and FiL had it too) and after countless hours spent in care homes, I think far too many people are kept alive when so often it'd be far kinder to let Nature take its course.

If they're getting any pleasure out of life that's one thing, but so many are not - I have seen far too much of distress and anxiety that nothing and nobody can relieve - not to mention incontinence and the attendant complete loss of dignity.

More than once in my mother's CH I saw some poor old thing with advanced dementia being badgered and pestered to eat and drink when they no longer wanted to. I know it was done with the best of intentions, but really, WTF is the point?

I made up my mind that I would never allow it with my mother, and thank goodness the question never arose. Plus, by a certain stage of her dementia we had agreed with the CH that except for e.g. another broken hip, anything but palliative care would be verging on cruelty - and as for hospital, drips, etc., hospital is usually a terrible place for anyone with dementia past the early stages - noisy and confusing, especially when they cant possibly understand what's going on, or why they are there.

Presumably it will be largely up to your mother, as next of kin, to be consulted about any future treatment, but some people do want absolutely everything done to keep someone going, no matter how pitiful a state they're in.

Dora26 · 05/05/2019 11:30

My Dad has advanced Parkinsons with associated dementia and is on a similar journey as yours OP. It has challenged me on many levels and made me think very deeply about life and its meaning. We always had a difficult relationship but deep down I knew he would cut off an arm for any of us. In the past few years as things worsened physically and then mentally we seem to have found a new bond for which I am eternally grateful. For me I look at him and ask if it were me what would I like. For me human touch, kindness and love whether I actually recognised the giver or not would be what I would need. So this is what I do - just a half hour or so - touch and talk and if he’s up to it his favourite ice cream ( from Mc Donalds). On a bad day I leave in tears, on a good day just emotionally exhausted. The staff are fantastic and we chat both about Dad and about their families. I am lucky I share the care with 4 other siblings and we chat a lot on Whatsapp - only one local. I have realised this is my dad and I will be there til he draws his last breath. It has been a revelation for me. Op try make peace with yourself and just what you are able to manage. It was helpful for me to realise that Even though he was still alive I was actively grieving the loss of my strong opinionated feisty dad. Good luck!

saraclara · 06/06/2019 21:14

We're all different. My MIL, who I adore, is at the advanced stage now. She doesn't know us, and she can't converse. She babbles a bit like a baby. Sometimes she's smiley and happy and sometimes she's a bit tearful..

Surprisingly I find myself still wanting to visit and feeling comfortable doing so. There's still something of the essence of the person I love there, somehow. My younger daughter is also comfortable visiting. But my eldest finds it hugely difficult. She's a different personality and has some anxiety issues. So i don't judge her or try to persuade her to go. It makes no difference to my MIL at this point. This daughter used to make herself go when it gave my MIL pleasure to see her (and it really did) and I appreciated her courage in doing so. But now I see no issue at all in her not going. It's fine.

Weejb · 28/07/2019 22:55

My mum has late stage vascular dementia and is immobile following a hip fracture. It's a six hour round trip to visit her in her nursing home but I go every two weeks. She still recognises me but is much diminished - she has frightening hallucinations and is eating very little. I love her very much but the person she used to be is no longer there. Worst of all she often thinks I'm still a teenager and I've gone missing from home. This causes her terrible distress. I'm now at the stage where I don't think I should see her too often if seeing me triggers such an awful reaction. Like other posters I feel gulity if I don't go and, quite wrongly, that I'll be judged by the carers if I don't stay for at least an hour when I do visit. The people looking after her are kind and caring which is some comfort. I do get fed up with people who have no experience of this horrendous condition suggesting that the person is still your loved one and you should visit regularly. I just feel in my situation that visits are good for either of us. Sometimes, in more lucid moments, she remarks on fellow residents who sleep all day and says they're not living just existing and she'd hate to end up like that. It's so hard - I miss her terribly

Girasole02 · 06/09/2019 19:53

My nan has gone from living with dementia to existing with dementia. She doesn't know anyone, where she is, who she is, won't eat or drink, has seemingly forgotten how to walk, is incontinent. My mom died over 20 years ago and nan keeps asking where she is, what she's doing etc.I hate seeing her like this. I find it helps if I don't just sit staring at her or trying to have a conversation she's not capable of holding. I try to busy myself organising her stuff, talking about what's on the TV and keeping the visit short as it's more unbearable the longer it lasts. I feel incredibly guilty but take some comfort from the fact she's 93 and, up until recently, she's had an amazing life, married for over 60 years. Those are the things i try to hold on to, not the way she is now. I am her only family and all the decision making involved makes me feel more guilty, as if I could do more.

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