I can't visit the care home

[bernadetteo]

DM was admitted to care home a few months ago after struggling at home with carers. She had a few infections and delirium which accelerated her dementia rapidly to the point of needing 24hour care.

I have been in a few times but I find it utterly traumatic and it leaves me struggling for days afterwards. I feel so relieved now she is safe after years of worrying about her, she doesn't know me, or anything really, and I am satisfied with the home overall.

I feel horrendous guilt though. I feel like I have abandoned her despite her being in a better position now than she has been in at least 5 years. I feel judged by the staff, I feel they think I don't care. The truth is I care so much it is giving a trauma response (I do have c-PTSD - unrelated to DM) and I can't face putting myself through that regularly for someone who knows no difference.

There are no other relatives.

Does anyone have any advice on how to manage going in or how to manage feeling so awful for not going in?

I know she won't be here for years to come, but I have already lost her - it's not one of those 'you will regret it in the future' situations. She has already left me and I'm grieving for the person who no longer occupies the body.

One parent with alzheimer one parent with dementia, discussed this a lot with my parents, so yeah - I have an idea

My parents had the same neighbours for 35 years and are good friends, they visit every few months actually so please don't aim your post at me as though I don't have a clue how OP feels and that i'm just spouting shit

Your feelings are perfectly understandable. The more often you visit it'll get easier. The residents who get regular visitors are prioritised for personal care. Unfair but true.

Just a thought, but is there anyone who would go with you to support you? I mean a friend who could just give a hand hold so you aren't having to be by yourself? They might be able to chat to your mum if you are upset, but also extricate you if it's too much.
It's really an awful situation for you, give yourself permission to do what is best for you.

@notnormanI’ve worked in many and I know I never want to end up in one.

You are obviously not a nice person the tone and nature of your reply is evident of this.

Safe, warm, well fed and looked after. No thanks. I am not a pet. I never want my children to witness me being treated like one either.

If I end up in a home, so be it. My children know I never want them to visit me in such a place no matter how warm, fed and looked after I am. Prisoners are warm, well fed and looked after in comparison to many other humans in the world.

You are truly a despicable person who believes you are right and just in calling people names for their own personal views on how they want to live out their lives.

Your poor MIL having someone as toxic as you in her life.

I don't know how you have decided I am not a nice person because I commented that I never want to be in a care home (after working in one) and now it makes my oh ill when he visits because mil is scared of him, her dementia is so bad.

Weird.

And I haven't called anyone names??

I hope I never end up in a care home, too. I hope I don't need to. I'm approaching 70, and everyone I know of my age feels the same. We're all terrified of losing our independence, of not being able to do and cook for what WE fancy eating for our next meal, of not being able to go for a walk when we want to, losing all those very simple, taken for granted, choices in our lives. And most of all we fear the dementia that could one day lead to this.

If you consider your MIL to be a bitch for feeling that way, you can write virtually all of us, her peers, while you're at it.

I'm a nurse in a nursing home. I don't judge how often people visit at all. I do judge people who don't check if they need anything or if they're ok though. And if they don't respond to my attempts to communicate with them. We completely get that visits can be distressing to both family and patient.

A once a week phonecall with the staff to ensure she doesn't need anything and if there's anything to update on is enough. Maybe once a month short visit to drop off toiletries/clothing. Ensuring they still get Christmas/birthday cards and gifts. If they go into hospital, an offer to sit with them in a&e is always nice too.

I think that poster was referring to the person she quoted, and tagged you accidentally.

Apologies @notnorman my post was meant for @diddl

@diddl this is meant for you not @notnorman

@saraclara i agree @diddl is not a nice human being. Nobody is judging their choices but they feel justified in judging everyone else. Calling her MIL a bitch just because she expressed her wish not to go into a nursing home is wicked. I dread to think of how their MIL is treated by them in real life. Shockingly awful person.

No worries- I wondered what I had said that was so awful!

This is a good suggestion. Visits are difficult when the patient can't interact, but if you go along with a friend you can sit beside your mother, hold her hand, and talk to your friend about your life, what you are up to etc. I have done this for a friend whose father was dying slowly and she wanted to visit but found it hard to either talk to him when he couldn't respond, or sit in silence.

I would show my face often enough that staff are aware your mother's care is being observed, and check in by phone when you can't make it.

@diddl this is meant for you not @notnorman.

Yes I know it was pretty obvious that it was meant for me.

I might be nasty but I'm not stupid.

Although she doesn't know you, does she know what's going on, i.e. is she getting anything out of your visits?

You've got to make a decision (that you'll go every 2 weeks / month / 6 weeks / not at all) and then stop beating yourself up. There's no benefit to your mental health if every day you don't go you're feeling horribly guilty. Do what works for you and make your peace with it.

@diddl at least you admit you are a nasty person that is a win for a stupid ridiculous person like me.

I would say seek help to deal with your emotions and anxiety and then you can see her

at least you admit you are a nasty person that is a win for a stupid person like me.

My friends & family are obviously OK with me being nasty so that's ok by me.

@diddl your MIL is okay with you calling her a bitch?

Not sure your perception of warm, well fed and well looked after would be the same standard as mine.

We are obviously very different people.

I'm afraid we all have to do unpleasant things in life, that's the nature of being human. I think you should continue to visit your mother and not put your own trauma at the centre of the situation - unless it's so severe that you are likely to negatively affect the staff and other residents. As for the staff judging you, I doubt it very much as you are keeping them in a job (albeit an underpaid one). I think they are far more likely to judge relatives who never visit at all - I know I would.

As a past activity leader in an elderly care home please know that staff do NOT judge you! You however are judging yourself please stop! You did what is right for your DM she will have social activities a routine and friends in the home and 100% you have chosen to have her looked after with love. I know that to have a parent living in your home 24-7 with dementia is VERY difficult and without a large circle of support it's not the best move for them or you. If they get a UTI they can become VERY violent and I've seen sweet old ladies try and bite chunks out of carers. They may have 'sun downing' where they are very lively at night, may become sexually inappropriate and walk around naked, swear, cry, get frustrated and confused and be prone to leave the house... then you have the repetitive behaviours where you are repeating and explaining yourself 1000 times a day which can be exhausting for both parties. You will have to give up work because you'll be exhausted and get minimum help from SS they will possibly be double incontinent too. In the res/nursing home environment staff are trained in Dementia and the care work is shared. Go see your DM when you can and share a cuppa and a chat and maybe a family album too as I know she'll remember some of the folk in the pics. You really should NOT feel guilty or judged.

Only read OP's posts.

What do you want? To learn ways to not feel so traumatised or to not feel guilty?

My MIL recently died of dementia in a nursing home. My FIL is still there (he has Parkinsons). While the home had a certain smell associated with it, now when I visit FIL I associate it with the last few weeks of MIL's life. It's really hard.

I felt that it was/is easier to spend time with them as they are my IL's, we don't have the long childhood history/emotions.

I do believe your DM will be comforted by your presence - touch and your voice mainly.

I have found the dementia care staff to be really lovely. Can you talk to them about how you're feeling? If you do want to visit your Mum they will be able to help you find ways.

Guilt is a wasted emotion. Your Mum is being cared for and dementia is a fucker.

Don't go often if it traumatises you OP. How often did you visit before they had dementia? If it wasn't that often, don't do more than you did.
Maybe it's harsh but if they don't know you it will distress everyone.

If you consider your MIL to be a bitch for feeling that way, you can write virtually all of us, her peers, while you're at it.

I have only just seen this part of your comment.

I thought of her as a bitch at the time for what she said just after my dad had to move into a home due to dementia.

I would like to apologise for calling you ridiculous for feeling how you do.

It's an emotive subject!