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

[Kenworthington]

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 feel

Oh god sorry just realised there's a dementia topic. I'll ask for it to be moved there

My grandma died of dementia and it is hard, I do aympathise. When she died I did not miss having to go into that home and I did not miss her, I had already lost (and was missing) the real her.
Dhs grandma had dementia and hefelt a lot like you and only saw her a handful of times in the years before she died.
Does your dad recognise you (either has his daughter or just as someone he loves)?

((hug)) No one in the Elderly Parents section is going to judge you for feeling this way - I know I certainly don't see the person who inhabits my mums body (iyswim) as my mum. She doesn't recognise me, or interact in anyway, and I realised recently that I very much think of going to visit Dad or it being dads house. And I know that when my mum ends up in a home it will be massively hard to visit her.

So, be kind to yourself. Decide what you can cope with - popping in with a gift for him, a chat with the carers, change the photos in his room, then out after 30 mins and go for a coffee and a cry or whatever works for you. But don't feel ashamed.

You know I'm not sure. I don't think so if I'm honest. I'm not sure how well he can even see me really. His eyes kind of look glassy. They've taken all his medication away now as apparently it's no longer beneficial to him.

Thanks CMOT. It's bloody shit isn't it

What I'm going to say might sound brutal, but you're right it's not your dad lying there. Its a shell that looks a bit like him. Your dad is gone, and as long as his shell is being cared for properly you shouldn't feel bad about not visiting. Be kind to yourself, and to your mum.

When he does die, its ok to feel relieved about that as well.

So again, be kind to yourself

My grandma's in a care home with dementia at the moment. We weren't close but I go when I'm at my parents and it's bloody awful - horrible place. I can't imagine how much more awful and upsetting it would be to try to visit a parent there and see them like that. You have my utmost sympathy. But I think you should force yourself to go because as you say, you'll regret it if you don't

What does your mum want you to do?
If she wants you go to with her, then I think you need too. Your mum needs support too.
As others have said, you've already lost your real dad, but you still have your mum, who may need you.

Don't feel guilty.

My enduring memories of my dad are of seeing him dying in a hospice. And though it was a wonderful place, and the staff were magnificent, I watched him become a death's head and try as I might I cannot get rid of those images. And the smell. Just the smell of lots of very ill and weak people. When someone you love so very much is dying, and they have no idea who you are anymore - well, spare yourself that level of pain.

UnMN hugs (())

I am truly sorry that this is so distressing for you.

As someone with poor health, I get distressed that others like me are expected to die, to ease others discomfort with disability, rather than they get therapy to help them with their abilism.

I think that's unfair concrete,, I think she wants her dad to die for his sake mainly

Concrete this isn't the same situation- you surely can see that)!

oP I'm so sorry for what you're going through

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.

OP may have to go through this again with her Mum, therapy working on why she has abilist feelings may help everyone. Sadly society is so abilist in the UK right now the United Nations has us on a watch list, we are one of the worst societies in the world for abilism, so I understand its hard for you to comprehend.

This is why carers can do this job - because they didn't know your dad before.

Yes I think in an ideal world you should force yourself to go, so that your mum can have a day off if she would like that, maybe to go with her. Also maybe to double check what would be done if another infection started - is there a plan in writing and known to his GP?

But I don't think it makes a difference to your dad or not. I'm really sorry.

OP my dad passed away 2 weeks ago, just 11 weeks after my mum died. I sat and watched my mum die, my dad was very ill very quickly - diagnosis to death 4 weeks. In his last few days I dreaded visiting, it broke my heart seeing how he had physically changed, from a big chunky man to a frail, thin curled up one. I couldn't be there when he died, I couldn't watch him go. My DH did instead. I sat downstairs in his nursing home just watching his bedroom door crying. I still don't know if I did the right thing, my thoughts on it change every day. I just want you to know that I know how you feel. You need to do what you think is right xx

I really understand- your dad has gone but is still there. Dementia is a horrifically cruel illness. I also understand having visited dmil in a care home how awful it is. What does your mum think? Can you focus on supporting her? And give yourself time to grieve. On the elderly parents board there are lots of veterans including cmot and many others who understand and can offer sympathy and a space to vent and say the unsayable.

That's cruel concrete. I don't know either of you, but even I can clearly see your situation is vastly different. You are still able to type competently and have thoughts you can clearly express. This posters father cannot speak legibly let alone type. His mind appears to be muddled by his illness and can no longer command his voice or body.

My uncle was very ill with dementia for 9 yrs and being aware of the deterioration was painful even though I learnt of it from afar. To live it with a close relative must be awful. My mother has very severe mental health problems and can now largely be considered to have ceased being my mum as her mind has been taken over and confused beyond belief. She talks nonense (although it can be understood in itself) and doesn't interact much at all. That in itself is painful so to experience what the OP is...well that sounds horrendous

OP I am not living what you are, but I have and continue to experience my own families struggles and I genuinely express my sympathies and hope you can find a way to cope with such a distressing situation

ok I do have issues with smells, touch and unpredictable behaviour and unpredictable situations. I have had investigations into whether a high functioning autism diagnosis is appropriate or not. In the end it was decided it prob want 'necessary' and I may have or I may have not. I didn't mention it in my op as it wasn't about 'me' as such. I don't think I'm ablist, I means I might be but I think it's more a basic inability to cope with this kind of stuff. The smells in there are so strong and my sense of smell is very strong, and it's so hot and I feel like I'm inhaling germs and well, illness.

I'm all my mums got. I take her out a lot, sometimes I go with her but she's happy to go on her own. I think she would like me to go without being forced iykwim. This has been a very very long road. And until he was in the home I was doing a lot for them. Both of them. He was diagnosed 8 years ago now but had already been very forgetful for 4-5 years so it started in his early 60s. I eventually gave up work in 2013 to take care of them, my mum can't drive (she lost her licence due to having a diabetic hypo at the wheel one day). Do there was lots of ferrying as well as helping my mum just cope with him. He would be very aggresssand violent. Which wasn't him at all. So eventually she agreed to two weeks of respite in the home and when he went in they basically couldn't let him out again due to safeguarding issues for my mum. She finds it really hard I know, she's almost in denial about how deteriorated he is now. For along time she kept saying of I could have him home and look after him and Worrying that he wasn't wearing nice shirts and chinos. When it's obvious to everyone that he needs to just be comfortable now. As comfortable as he can be anyway. Well anyway now apparently his swallowing reflex is starting to go now and he is having thickened liquids through a straw so he doesn't inhale it. I don't think she realises how this is at the end really, I don't WANt him to die, I am DREADING it to be honest. Properly dreading it. But that's what his body needs because this is NO life. And we are all in limbo as well

We do not know concretes situation and this may be her future

Do you understand what abilist is?

Insert another protected characteristic saying you don't want them near you or touching you and tell me if you would go around shouting it in public!

en.m.wikipedia.org/wiki/Ableism

I think it's not me being cruel, I think it's others that are cruel due to their discrimination.

Thank you to everyone who has been so kind and understanding. It's such a relief to just get it out. And I'm going to try and visit tomorrow (though whenever I have gone I always seem to time it wrong and he'll be asleep) and I then worry I haven't stayed long enough and the carers will be judging me 😩

Ok, we crossed posts there OP. I understand now why you felt that way.

You may have to deal with this again though in the future, so finding a coping mechanism is wise in my opinion.

People with disabilities can be abilist too. As the UN states, it's an abilist society.

Concrete you are projecting your feelings about your own life onto a very different situation. It's not fair or helpful or kind.

OP I feel for you. How would you feel about taking a book with you and reading him a couple of chapters each time?

I don't want ANYone touching me, friends, family strangers! ANYONE. But I can't control what the other people in the home are doing and the fact they might touch me makes me very anxious

Oh and I crossed with you sorry can't type very fast