Partner in care home - finding this hard

[Fauxwidow]

Wondering if anyone else is in this situation.
Am mid fifties with my partner of 30 years living in a nursing home with brain damage.
Very little of his personality left, limited speech, no interest in anything. Sleeps or stares into space most of the time. Might sometimes be able to engage him in a TV programme, but not often.

I have two adult DC in mid 20s, fortunately living away from the area so they are able to
live their lives as they should at that age, just coming to visit their dad from time to time. It has been and is still really tough for them, but I’m glad they are able to have a normal life for their age when they aren’t home.

Whereas I now live alone, am neither a partner nor “widowed”. Every day I need to decide whether to visit him. I do only when I feel I can, but then I feel guilty. I am grieving him but yet he’s still there.

I can’t move on as he may live for years.

Sadly hard decisions are made in life. I would find another partner, and friendzone the partner in the care home. It sounds harsh but you must visualise what is best for you.

You are caught in a long term limbo , he could go on for decades with you living a twilight life . Good advice given and if it were me I’d allocate one evening a week to visit and then forge ahead living my life fully with family and friends . What has happened is tragic and no-one’s fault but whilst his life has changed it doesn’t mean yours should also suffer .

This! Good luck Op.

I'm so sorry OP. It sounds really hard. If he was a fit active sporty man, I feel as if he'd probably want you to be getting out and doing things and being active yourself.
So please take some holidays, visit friends and do stuff for you. Put your own oxygen mask on first ... and if that means taking a step back from visiting for a bit. So be it.

Best of luck OP

Also sending my sympathies, this sounds so hard.

Does he gain any pleasure from your visits? Does he recognise you?

Thank you for such wise and caring responses.

I have found it very interesting that almost all of you have suggested I step away a bit, whereas none of the people who know us both have suggested that.

Undoubtedly, those are mostly people around our age - perhaps there is an element of “if it can happen to them”…who knows.

I assume he still recognizes me, but he’s no longer able to express any emotion in his face, and can’t speak.

I’m not looking for another partner, but I do need new friends ! Somewhat excluded from the social life of the couples we were friends with. Not deliberately. Just that the men miss their friend .

I am in a very similar situation. My lovely husband developed early onset dementia about 7 years ago.He was admitted to long term care about 8 weeks ago which was a tremendous relief. I visit about 5/7 days and other family members visit too. I do like the Care Home to see visitors coming and going. He doesn't know anybody but calls my name constantly. It is very distressing to visit to be honest. I keep it to about an hour. It's very nearby so I don't mind. I had anticipated when he became very unwell 8 weeks ago ( vascular event) that it might be a very short stay but he seems to be settling a bit. I have grieved and grieved the man he was, so unfair. But the uncertainty is very draining. I'm new to this I suppose but just wanted to empathise with your situation..

I suspect none of the people who know you both feel able to give you suggestions about how to handle things. They don't know your inner feelings and are probably worried they may say the wrong thing.

A friend's wife had early onset dementia and went into a home aged 55. Her husband visited daily initially, slowly reducing to weekly. She didn't recognise him. It was hard. But he also rebuilt his life, got a new social life, and actually met a lady who was travelling a similar path with her husband in a home with brain damage. They were an incredible support for each other, as I guess noone could understand them better than each other. Over time it gradually developed into a romantic relationship. Both families of the partners in the care homes fully welcomed the new partners. Absolutely noone who loved any of the four people begrudged the partners this tiny ray of light. You might be surprised. Good luck OP.

@Megjobethamy I’m so sorry, i can imagine just how very very hard this is

@Megjobethamy That must have been such a tough decision after you have been caring for him for so long. But at the same time a relief to have others to do the caring. Such mixed emotions, I am sure. And the roller coaster of wondering whether deterioration is temporary, a further decline, or might be the end of their lives.

Thanks so much to Fauxwidow and all for your lovely comments and hopeful posts.

@Megjobethamy
I also used to visit everyday, partially because he was difficult at that time but also, I guess, like you, to make sure the staff knew he family around. (So many of the elderly residents have no visitors ever )

However, during the time I have visited - different days/ times, in the lounge, going straight to his room, outside in the garden I have never once seen any member of staff be anything other than kind, caring and patient to any resident. Amazing people doing that job.

Hopefully you will also get that experience