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.

Dementia is brutal. My Mum does still recognise me so I can only try to imagine how hard it is for you.

I enjoy my visits to my Mum but I mourn the person she was. It is hard to leave her as she always wants me to stay.

You need to look after yourself. Don't underestimate the impact this is having on you.

She might not know exactly who you are but she might find you vaguely familiar or know you are someone she loves/is loved by so if you can manage to go at all you should.

@Wishimaywishimight That was harsh.
@bernadetteo It's hard. I did eight years and I recognise everything you say. People cope differently. I wouldn't voluntarily cross the threshold of a care home any more.
Just a thought.

Do you feel unable to see your DM in this state because of her becoming someone completely different or is it the actual care home setting that brings on your stress?
It could be just both.
If it's the care home, then there may be a very occasional solution..
Is your DM able still to transfer into a wheelchair and remain in a wheel chair for 30 minutes? Do you think if care staff wrapped your DM up in a warm coat, shoes, blankets, hot water bottles if necessary etc, you could meet her in the garden and not actually go inside the care home?

Or could the care team pop her into your car and you drive her somewhere pretty and just park up for 15 and drive back?
When DM was in a mental health unit it was too upsetting to be there. We just disappeared to a half decent layby and ate Marks and Spencer's sandwiches together.

I am sorry that that post upset you and I am sure it wasn't what you wanted to hear BUT it isn't judgemental or nasty

I completely understand how you feel. You have already lost the person you love and it is heartbreaking seeing your DM like this. No judgement here.

However, it will make a big difference to your DM’s mental well being if she has regular visitors. If you can’t cope with the toll on your mental health, there are volunteers and paid for services that visit the housebound or those with no family in nursing homes. Perhaps you could try to organise something like that? It might help you feel better about the situation, as well as being good for your DM. Care packages and letters are also good.

It is very judgemental.

Talking about being judgemental, my oh feels the same about his mum, it makes him ill going to see her and she is scared of him now as he is a big man and she doesn't know who he is. Others go and visit instead

The social worker has had a go at him saying he has to go to visit her!!!

I never want to end up in a nursing home. I would rather be dead. I would not want my children to visit me. EVER. My children know this now because I have made it clear. Hopefully, euthanasia will be legal when it is my time. Nursing homes are dreadful.

Totally agree with this too

Bring on assisted dying

I think you might regret not going more, when she's gone. Guilt is a very hard thing to live with. Thinking of you both

I know how you feel OP. When my mum went into a home I hated visiting. We would visit on a Friday afternoon and from bed time on Thursday I would feel the heaviness and it would consume my thoughts all morning on Friday. I would feel so sick I couldn't eat. Then when I got home I would be tearful all evening because it was so difficult and I felt so sad.

For myself, I'm glad I kept going because it got easier. We formed relationships with staff and other residents and became part of the family and socialised with other residents and joined in activities. I never woke up in the morning and thought "Hooray! I'm going to visit mum!" I always felt anxious and sad but getting to know the routine, spending time with other residents and staff, made it easier and less like visiting a hospital.

Strangely for me it was easier when she lost her speech and no longer knew me. She no longer begged for me to take her home and I no longer had to defend myself and explain that the decision was out of my hands.

Can I urge you to see if there is counselling available in your area for people in your situation. I found it really helpful when mum was diagnosed.

Whether you visit or not the sense of loss is real and painful.

Please don’t feel like you have done the wrong thing. We may have to do the same soon and I have been filled with guilt. My mother is up at all hours and both my sibling and I work full time. He has moved back to live with her and works from home but she cannot be alone ever.

My mother’s brother is in a home and I can see his pictures on their Facebook posts and he looks happy, my cousin said she cried for weeks but my Aunt who is almost 80 couldn’t cope. They go and spend time with him regularly and take him out to the Garden centre if he feels up to it.

There are people on hand 24/7 so night waking can be dealt with by someone who is paid to be awake and isn’t getting up the next day facing a full day of work on 3 hours sleep. There is always someone nearby for them to have a chat and overall it’s more focussed care.

@Wishimaywishimight i hope you feel better making out that people who need to put a relative into a care honestly are uncaring. My mother will need more care than we can offer eventually. I want her to be safe more than anything.

OP@bernadetteo are you having any therapy for your ptsd? The reason I ask this is that, your mum aside, have you thought what your response may be in future if your OH was needing a care home? How about when you yourself need hospital care or a care setting? If you are having a strong response then actually perhaps it’s working on aspects of why you are responding this way, with a therapist….I had a trauma response when I was in hospital after giving birth, it unexpectedly brought up an awful lot of past childhood stuff ….hence why I would advise you to see this as an opportunity to work on the ptsd. The whys and wherefores of whether or not to visit your mum are very individual, I would never say someone has to put themselves through a situation if it’s too much but equally you may, at the end of her life, want and need to be with her when that time comes.

In addition to the supportive comments above, have you considered (or are you already getting) any kind of support or therapy for your mental health? It sounds like that could benefit you especially whilst you are trying to deal with this very difficult situation. It’s very hard to be resilient and have perspective when you are mentally unwell and struggling with your own health.

If you hate visiting, imagine how it is to live there. You need to stop making it all about you and go and visit your mum.

see now that one could well be seen as judgemental and nasty

I have been in the position of having to find nursing home care for my late husband - it was hard.

Please talk to the home manager. Tell them what you have told us. Discuss her care and ask them all the questions you need to feel happy with the care; and talk about how traumatic you find it and about ways you can be helped with that. In my experience they wish to accommodate everyone's needs, the resident and the family.

If you are satisfied that the care is good, then you need to ask yourself the purpose of your visits. Are you aware of any benefits that this might bring her? Can you ask the staff how she reacts after your visits to give yourself an idea about this?

Top priority is that you need to set aside the idea that you are being judged - it is irrelevant really to your Mum's well-being - but if you discuss with the home how hard you find visits then they will be able to understand and not judge. They are used to these situations - they know how hard it can be for some famines.

Just be upfront with them.

The staff where my DH was were great - I would walk in the door and the next minute there would be a cup of tea by my side and a smile.

My own experience with dh gran and mine is that no or less visits led to lack of care.
DH’s gran was left for a few days in deep pain they just ignored (she wasn’t making sense then so assumed there were ‘normal’ moans). Turns out she had a broken collar bone! Then doctors didn’t want to give her string painkillers because ‘it could shorten her life’….

My gran was left to get dehydrated. It was just pure luck it was around Christmas and we went to see her, insisting there was something wrong. They maintain she was ‘fine’ but knowing we were there, they had a doctor coming over which then resulted in an immediate hospitalisation….. she died not long after (different reason).

My gran was in what anyone would call an excellent care home too.

OP please go easy on yourself. I'm currently receiving threapy to help deal with my DM's dementia, I feel like I've lost her even though she still kind of knows whats going on and who people are she just isn't the same. She's forgot how to cook and what food she likes etc. She can still look after herself but thankfully I have a large family so we all check in with her.

From what you've said you've fully lost your DM already and it is a grieving process. Only you know how the visits impact you and its you that you need to think about now. I think PP had a good suggestion about going every so often to check toiletries and that she's been treated OK but doing something nice for yourself after. If you can't do that then don't be hard on yourself. Think about what your mum would want if she wasn't ill and weather she would want you to go through that.

Threapy is helping me process whats going on with my mum and if you can I would recommend trying to see someone too.

I hope you find some peace with all this soon

Would some counselling be an option? Whatever you decide and manage to do wrt your mum, there will be really difficult feelings to deal with.

Do you have any friends who could come with you if/when you visit?

Please try not to take on the perceived judgements of others. They don't know your life. They don't know how you're feeling. They don't know your past. There are a great many more people who understand how complex and difficult these things are, and how different it is for different people.

I understand how you feel. I did visit my mother in her care home but always felt a sense of elation when I got away. The situation, not the care home itself, was just so upsetting. If she hadn't been able to recognise me I don't think I would have gone.

It's really, really hard and I sympathize with you a lot. What I can say is that after my mum died, I was glad to have made the effort and still felt guilty about everything more that I could have done. But I'd have felt worse if I hadn't made the effort when she was alive. Only you can know whether you are likely to feel worse visiting her while she's alive or worse when there's no longer anything to be done and guilty that you didn't see her when you could. It's a horrible choice.

Unfortunately Assisted Dying as projected won't apply to dementia. The person has to have capacity to make the decision and have less than 6 months to live. I know I wouldn't want to live on in the state my mother was in. You wouldn't subject a dog to it.

I plan to tell my DDs that if I don't know them any more, then they shouldn't visit. I don't want them to see me like that, and I know that at least one of them will find it traumatic.

But what I would want them to do is use some of my money to pay someone (we have no other family) to visit me once a week to check on my welfare and my treatment. I think that's important.

These homes vary enormously. My mum's BUPA one was grim. No-one seemed to give a damn. My MIL' s council one was lovely, and the staff would instantly make me a cuppa and try to feed me. The warmth and affection that they showed to MIL and to us hugely helped me to cope with the visits, and I absolutely trusted them with her care.
But I can't assume I'll be as lucky, so I want someone checking in on me. But it doesn't need to be my daughters.

You sound as ridiculous as my MIL.

"Ooh, I hope I never end up in a place like that"

said the stupid bitch just after my dad had had to move into one.

It was a fabulous place and he was very happy there.

Safe, warm , well fed & well looked after.

What would your DM of 10 years ago have said she wanted?

Would she have understood and want you to be happy and released you from the guilt of not visiting?

Would she have insisted you visit regularly regardless?

Then go with that.