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

Would you tell feminists they are projecting and dismiss them when they bring to light sexist attitudes?

Oh ok yes that's a good idea concrete. I could try that yes. It's very hard talking to someone who can't engage with you. And if he does try and talk I can't understand and it makes me feel all awkward and anxious again

Ken - life is one big guilt trip when you're a caring person. Just take that as a crap compliment to yourself that if you're feeling bad then it's because you're a nice person!

Concrete - you may well have valid points, but this is not an appropriate thread. If you started your own thread to debate your points of view then you may get a better response but at the moment you do come across as attacking a vulnerable person (ironically pretty much the very thing you are saying needs addressing)

There was no disclosure until near the end of the first page, I am not a mind reader.

Each to their own. My DF has dementia and is bed bound and in a nursing home. I live 1.5 hours away and see him twice a week. My DM and DSis live locally and see him every day. It is heart breaking.

I used to work in a nursing home, most of our patients had dementia of one kind or another, if a relative came to me with your feelings of guilt my answer was almost always the same... Come in, tell the relative that you love them and tell them your best memories of them and you, hold their hand, be kind and leave. You have nothing to feel guilty about, the person that you love is no longer there, make your peace, and when the time comes smile and remember the good times. Take care my lovely X

When my ancient paternal DGM was in a care home with advanced dementia, it was very difficult for family members to visit, most of us live too far away, but her daughter and DiL who lived nearby did go in. My maternal DGM also went, as they were mates from church. Towards the end, mDGM was the only person she could recognise because she had no memory of anything after 1960 and most of us weren't born.

On that basis there was no point in visiting because even in relatively lucid moments she had no idea who any of us were. Sure we felt guilty, but it meant nothing to her iyswim.

Concrete you are so out of order me-railing this thread. You clearly are not in the same situation as the OP's father so quit trying to hijack with your nastiness.

OP I am not going to comment about my situation on this thread because pieces of work like Concrete are not going to fucking judge me but do pop over to the Caring for Elderly Parents support thread where there is absolutely no judging.

Ah ok seeyamonday you've just made me cry (I never cry). In a good way. Thanks

I stopped visiting my Nan for this reason (I can't imagine how hard it is with a parent). She didn't know me and the other residents frightened me as I have issues with social and personal contact. I kept going until she stopped recognising me. I'm sorry you're going through this It is such a cruel disease.

Thank you I will perfume. Am going to have to pop off for a while now my phone is almost out of charge.. I'll be back though

My grandfather died in similar circumstances. I know that I would carry immense guilt if I hadn’t visited him but similarly I’m almost four years down the line now and I still can’t picture him before he was unwell. My automatic ‘memory’ of him is how you describe and that is incredibly painful.

There isn’t a good outcome here unfortunately OP and it’s absolutely shit so you have my sympathies

As for ableism - I have a severely disabled daughter who has been that way since birth. I’m surrounded by disability every day of my life, 1:1 24 hours a day 7 days a week. I still found visiting those care homes and dealing with the environment fucking difficult

Chin up sweetheart X

I used to take in a newspaper and read out some of the articles although I skipped the really depressing ones. Often I wouldn't get any reaction sometimes there was s glimmer and his carers always said that he was a bit brighter after a visit.

I know how hard it is and how awful these places are but it did give me some comfort that he was a bit brighter after a visit, tbh that's what kept me going.

Thank you from me too seeya

My father had dementia , and was the same as your Ddad ( bedbound , or winched out to a chair , doubly incontinent , had to be fed , drank thickened liquid from a sip cup )

I went to see him once a week or less, he couldn't hold a conversation, didn't know who I was , and often was sleeping all day

He died last year , I don't regret not going more often , I just regret all those afternoons I wasted sitting with the shell of a man I no longer knew

I dreaded going there , had to wash my hands as soon as I got home , I couldn't even drink a glass of water there

Don't be pressured into going more often because someone else thinks you should

My grandad died of leukemia and dementia, the last time I saw him he didn't know me, I told him how he used to take us for long walks on a Saturday morning, he used to wear "segs" on his shoes, and the crunching noise they made on gravel, also he took me and my brothers to the Christmas lights in the town that we lived in, he didn't remember any of it but I DID, I felt so much better, I never visited again, he died 2 weeks later, I'll never forget him.

Not visiting him is understandable, don't beat yourself up about it. It's tough, very tough, to have a relative with dementia and you need to think about yourself as well.

I'm not sure I can add too much more to this post, but I couldn't just read and run. My grandmother was in a very similar situation. It got to the point where she was too unwell to go out anywhere, so I would just sit in her room with her. She couldn't say anything, but her face lit up when she saw me. She didn't know exactly who I was, you could just tell she recognised me as someone she knew. It didn't matter if it was 5 minutes before work, or hours spent with her. She appreciated it. Try and go and see your dad. It'll be so hard, I know, but just sit and tell him about your day. The carers are not going to judge. They understand. I was there when my grandmother passed away, and yes it was a relief, but only because I didn't want her to be in pain any more. I had already mourned her. And with hindsight, I can see that spending time with her helped me get closure.
And for any carers reading this: you are wonderful people.

I agree with seeyamonday. Go and see him, talk to him and tell him you love him, give him a kiss and say goodbye. You don't have to stay long. Just a brief visit even five minutes will do. He won't remember if you've been or not.
My dad had dementia and was in a care home. He stopped eating and eventually stopped drinking too. He used to tell me he'd had a lovely dinner but the care home monitored his food and he hadn't had anything to eat..I used to hate visiting. As much as you hate doing it if you don't go and say goodbye to him you might regret it.
Thinking of you and hope you can do what's best for you
Hugs xx

I'm so sorry you are having to deal with this and see your Dad that way Ken. Dementia is such a cruel illness, it almost feels like losing your loved one twice as they battle with it.

My Grandad passed away earlier this year at the age of 93 after a long, horrible period with dementia. On the day he died, I was due to travel to his care home with my 3 month old son to introduce them to each other. As his care home was 5 hours drive away, I hadn't seen him for a few months because of late pregnancy and then not wanting to travel with a newborn. I am still racked with guilt that I hadn't seen him, but if I am truly honest, it was a relief to not have to visit him. It was no longer my beloved Grandad we were visiting, he had already gone. I used to pray he would be asleep when we visited, because I found it easier to sit beside his bed and hold his hand whilst talking about memories as he slept.

I think I am trying to say I completely understand why you don't want to go. It's heartbreaking, every time. But, if there is some way you can go for short periods every few weeks if you feel you want to at some point, personally I would. Take a piece of music to play, or a photo, talk about it with him for 10 mins, even though it is likely to just be you talking, then give yourself the peace to leave knowing you have seen him. But if you can't, switch off the guilt, support your Mum as you are. It's a horrible journey, you are in my thoughts.

It is nice to see the attitudes on this thread changing, the language is a lot kinder.

I understand you are going a challenging time and I am sad for you.

As I am sure many now recognise, subtle abilism is disliking someone for their symptoms because they give less than a "normal" person. I understand this is due to the UK issue of lack of education and scapegoating of people with disabilities.

At the beginning some posters comments reminded me of this.

m.youtube.com/watch?v=hWDvcVEZiGc

I understand OP, I'm in a similar position. Would our relatives want us there knowing how upset it makes us, I really don't think they would. I've told my son, if I ever get like that to have no guilt what so ever about not visiting. I wouldn't want him to go through this like I have.

Ps, like someone up thread said, I too have a problem with drinking anything there, I feel uncomfortable sitting on the seats. Like you said, the unpredictable touching, commenting, staring, I can't wait to get out of there.

Having been in a similar situation with elderly relatives, 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.