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Mumsnet has not checked the qualifications of anyone posting here. If you need help urgently or expert advice, please see our domestic violence webguide and/or relationships webguide. Many Mumsnetters experiencing domestic abuse have found this thread helpful: Listen up, everybody

Original poster

Partner in care home - finding this hard

38 replies

Fauxwidow · 19/11/2024 18:43

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.

OP posts:
healthybychristmas · 19/11/2024 18:45

That sounds really really tough. Could you allocate one evening a week where you called to see him and then you go home and do something enjoyable for you? It doesn't sound like it would benefit him at all if you went in every day so I wouldn't be considering that.

Were you married to each other?

TomatoSandwiches · 19/11/2024 18:48

I agree with pp, pick a day of the week and allocate it to him, after a while youll be able to compartmentalise this limbo situation.
Never feel guilty though, no point, it is what it is for now so just do your best but be kind to yourself also.

UpUpUpU · 19/11/2024 18:49

That’s hard OP. My friends husband had a massive stroke and is in a similar state to your partner/husband. She too find it’s really hard.

How long has he been like this?

Hercisback1 · 19/11/2024 18:51

OP I feel for you so much. My aunt was in a similar situation for 9 years and is now free. The one saving grace was that by the time he died, she'd grieved and was ready to live again.

I'm so sorry and have no advice, but you are not alone and your feelings are valid.

Do you have your own "life"? I mean totally away from him, shared friends. Is there anything that is yours?

Analysisandparalysis · 19/11/2024 18:52

Gosh, that sounds incredibly hard.

i know this gets bandied around a lot. But have you considered some therapy type support for yourself to help you cope with the range of emotions you must be feeling.

Prior to his illness was he a good man? Good partner? Do you have good memories? I think this makes a big difference to how you figure out coping.

What you should try not to do is stop having a life yourself and not feel guilty for living. There are no medals and no satisfaction in giving up your own life here. Dont be controlled by the worry of what anyone else thinks, or what you think they might think, because they are not you and not in your situation.

Please try and make a new life for yourself if you can x

tsmainsqueeze · 19/11/2024 19:06

I am very sorry for you both.
It sounds like neither of you gain much from your visits so perhaps it is time to visit less and spend your spare time doing things for you , you still have a life left to live and whatever you choose to do in your own time i don't think it will have any detrimental effect on your husband.
Have you thought about seeing a councillor ? you are both affected by his difficulties in different ways, your life possibly more so .
I really do hope you find some happiness in what must be such a heartbreaking situation.

Original poster
Fauxwidow · 19/11/2024 19:41

Thank you all for your kindness.

Yes, we had a good life together, ups and downs of course, but our priorities were aligned and we had lots in common. Though I do find it hard at the moment to remember the good times

OP posts:
Uricon2 · 19/11/2024 20:00

I'm so sorry for your situation which mus tbe so hard. Try to think about what he would have wanted for you when he was well and able to express it, which I'm sure would be for you to be OK. If roles were reversed, would you want him to be stuck and unable to start rebuilding a life for himself?

Please, whatever you do, be kind to yourself and don't judge yourself harshly, because this is not of your making or in your control Flowers

Original poster
Fauxwidow · 01/11/2025 20:45

And nearly a year on….he’s still in the nursing home. No speech now, no facial expression, no physical abilities at all other than moving his head.

Nothing that reminds us of the person he was. I can’t believe this has happened to a fit, active, sporty, funny man. The only good thing is that I don’t think he has ever known this has happened to him

OP posts:
Ineffable23 · 01/11/2025 20:50

It's an incredibly hard thing to watch OP. I watched this with more distant relatives and it was still an awful thing. Have you got supportive friends and other family? Stuff like that is, I think, made more painful by the fact it's over such a long period.

PermanentTemporary · 01/11/2025 20:52

I’m so sorry.

How is your social life? Have you found a way to start to live a life that has good times?

Original poster
Fauxwidow · 01/11/2025 20:53

Thank you for responding @Ineffable23 , I do, to some degree, but it’s mainly me. It’s also hard dealing with their reactions. “It’s so awful seeing him like that” from some family members.
Yes it is - especially if you visit several times a week and not just 3 times a year!

OP posts:
Pancakeflipper · 01/11/2025 20:55

My heart goes out to you.
A friend of ours husband lost his memory after an accident and it caused other issues and he was moved into a care home. Our friend went through mental hell dealing with their marriage

I hope you are OK and you have support.

Original poster
Fauxwidow · 01/11/2025 21:00

Yes, @PermanentTemporary , I have - and selfishly I would like to enjoy that more and not to have to visit him
I know that sounds dreadful but I can’t say that anywhere else. Not a new relationship, just old and new friends and activities / trips / holidays

OP posts:
Pancakeflipper · 01/11/2025 21:14

There's a podcast called The Affair. One of the episodes is a really moving one about a woman whose husband becomes ill and she has relationship for sex. It was very thought provoking.

Ineffable23 · 01/11/2025 21:35

Fauxwidow · 01/11/2025 21:00

Yes, @PermanentTemporary , I have - and selfishly I would like to enjoy that more and not to have to visit him
I know that sounds dreadful but I can’t say that anywhere else. Not a new relationship, just old and new friends and activities / trips / holidays

Is there any possibility of him recovering? If not, I know it might not be a very standard stance, but I think if he's not going to recover then I would cut my visits down to an amount you can deal with emotionally. You shouldn't have to sacrifice your whole life, including the chance of future relationships, for someone with whom you can no longer have a relationship in the same sense you did previously.

cestlavielife · 01/11/2025 21:41

Have you explored with a bereavementt counseellor ? While he has not died you have lost the person he was and you can grieve that and explore moving on in the way that works for you eg weekly visits
It sounds like he is well looked after

StrongLikeMamma · 01/11/2025 21:47

You don’t sound unreasonable at all op. What a terrible situation to find yourself in.
Sending you only good thoughts and hugs X x

RandomMess · 01/11/2025 21:54

I agree about grief counselling. I think it’s worse than your life partner dying.

Your life is on hold.

Be very kind to yourself Flowers

Stressfordays · 01/11/2025 21:59

I work in this area and have seen this many times. You need to find a life outside of visiting the home. Find hobbies, meet friends, go out. Grab onto life because as you know more then anyone, you don't know what's round the corner.

Please don't feel guilty about not visiting your husband as much as you think you should. Make sure he has nice clothes, toiletries, take him treats when you visit. Engage with the nursing staff about his care needs and tell them how hard you are finding it. They will support you too. But they absolutely will not judge you for finding your way again in life. No one will. Life is for living.

Suffolker · 01/11/2025 22:00

It sounds incredibly hard OP, but I think you need to prioritise your own mental health and wellbeing. Would it help you to think about what he would want for you if he could express it? If the roles were reversed, what would you want for him? It sounds as though you had a loving relationship, and I’m sure he would want you to take time for yourself and do your best to enjoy life. I would also suggest you seek some counselling or emotional support. Best wishes to you.

Thelondonone · 01/11/2025 22:06

Slightly different as it’s my mum that is in a home with dementia. My dad has some female friends that he goes out to lunch with, sometimes just two of them, sometimes a group of widows (my dad obviously isn’t a widow). He is terrified what people think. I think he’s lonely so any joy from a lunch is fine. He goes to see my mum far too often, at least 5 times a week. He has male friends too but is still lonely. I wouldn’t care if he did meet someone else-it’s not like my mum would ever find out or understand. Do what is right for you. Go in sometimes to check on him but rebuild your own life. Good luck x

PermanentTemporary · 01/11/2025 22:26

A friend of a friend is in a similar situation and has been for a long time. She has a new partner and a social life. I believe she visits either weekly or fortnightly. My great grandfather visited my great grandmother in an institution from about age 40, I believe twice a year. I wouldn’t want you to do anything that makes you feel bad or uncomfortable, but I don’t think you should feel bad about visiting less.

Visiting parents is very different emotionally, but I see my mum weekly. I don’t find it easy at all. I go mainly because I want the staff to know that she has visits. Once in a while I see a glimpse of the woman she was, which is more than you get.

justasking111 · 01/11/2025 22:45

Pancakeflipper · 01/11/2025 21:14

There's a podcast called The Affair. One of the episodes is a really moving one about a woman whose husband becomes ill and she has relationship for sex. It was very thought provoking.

I have known that happen both to friends and family. It did seem to work okay. People understood.

AutumnAllTheWay · 01/11/2025 22:47

Stressfordays · 01/11/2025 21:59

I work in this area and have seen this many times. You need to find a life outside of visiting the home. Find hobbies, meet friends, go out. Grab onto life because as you know more then anyone, you don't know what's round the corner.

Please don't feel guilty about not visiting your husband as much as you think you should. Make sure he has nice clothes, toiletries, take him treats when you visit. Engage with the nursing staff about his care needs and tell them how hard you are finding it. They will support you too. But they absolutely will not judge you for finding your way again in life. No one will. Life is for living.

What great advice.

So sorry this has happened to you op