I can't visit the care home

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

Totally agree with this too

Bring on assisted dying

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.

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 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.

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

@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.

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.

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.

Even if you do visit, you will probably feel bad for not visiting often enough.

I have found this too.

I sympathise OP. My mother has dementia and has been in a care home for many years now. I expected her to die long ago. She has no idea who I am and my visits make no difference to her. I was not allowed to visit for well over a year during the pandemic and that broke any memory or connection she had with me. Every few weeks I go in and sit next to her and chat for half an hour (no response).

I found it very very hard to visit the first year or so. The environment is such a culture shock. But as time went on, it became easier, in the sense that I knew the staff and some of the other residents, and I knew what to expect.

As the previous poster said visits now are a welfare check really. But I do get something positive out of it. The staff are fantastic, and I enjoy talking to them.

I don't think there is anything anyone can say to make you feel better about not visiting. Even if you do visit, you will probably feel bad for not visiting often enough. You just have to find a way to make peace with it.

@bernadetteo I agree that post was very judgemental. And a very different situation that has no bearing on your and your mothers situation.

@Wishimaywishimight perhaps reflect upon the privileged position you were in with a grandmother, surrounded by a large family all sharing the load of caring.

Then consider it being a mother, as opposed to a grandmother, and you being the sole relative / carer who has coped alone for 5 years.

Honestly, your post added no value. You seem to think the two situations are similar when they are absolutely not, and basically kicked OP when she was down.

@bernadetteo I can understand the relief of her now being somewhere safe and it not being on you 24/7.

What a huge weight of your shoulders.

Give yourself some time. Go easy on yourself.

@bernadetteo massive hugs.

you have to do what’s right for you.

im sure you are aware that your ptsd is likely colouring your views very much in this.

Very much doubt that staff are judging you. When I worked in care I accepted and empathised with all families. It takes all sorts and everyone has a story we don’t know so who are we to judge. Most staff are the same. We are too busy to sit there judging you.

At the end of the day you need to find a way to be able to live with this mentally and emotionally. It is going to take a toll whatever you do but you are the one living with it.

I hope you find the balance and path that is right for you and ignore those in here and in real life that judge you for they do not walk in your shoes.

My DM has dementia and doesn’t know who I am but seems to like me.

I find little and often works for me, I visit for an hour, max 75 minutes. My DM is always in her room, I play her favourite music, rearrange her wardrobe, check toiletries, basically keep as busy as I can. I chat to her as I do this (when I say chat I use the word loosely).

The journey takes an hour on the bus so I use this as a bit of me time and buy myself a nice drink in the town centre near the home.

I don’t think the staff judge if you don’t go, I worked in care homes and was a carer in the community and soon sussed out there’s all sorts of family dynamics at play.

Perhaps try one more visit with a strategy and see how it goes. If it’s not right for you then regular phone calls and emails to the home is an option.

Go for short visits, well spaced out to keep an eye on her and ensure the care stays good.
My grandmother and great aunts all had dementia and all knew we were family. Not sure who or how they were related, but knew family. It must be familiar facial structures and mannerisms.

I've worked in several care homes and I would definitely be going in and checking on your mum. Alot of them are understaffed so the care is not great and if you don't go you don't really know how she is being cared for. Dementia patients are often confused and upset and it is extremely upsetting for all families involved I feel for you op. X

OP this sounds very hard. Can you research charities and organisations that will have resources for help with dealing with a parent with dementia? Alzheimer's UK etc?

Something I always remember from dementia training is that even though people don't necessarily know their reality or the people around them, they can still feel feelings - laughter, joy, comfort. Even if your DM does not know you, she can still benefit from your visits and if this is something you feel you can do, it might help to know that she is still benefitting from those feelings. It doesn't have to be conversation. You could put on some music, dance with her if she's able, try some singing, or show her funny programmes. You could get her fidget toys or things to fiddle with. It sounds odd but things you might do for or give to a small child, she may still find joy in. Teddies, blankets.
Can you take her out anywhere for a walk, or in her wheelchair for some fresh air? Care homes lack the staff to do this and she might benefit from the fresh air.

I work in healthcare and one of the main things you can do that helps if you can't face visiting is providing the things she needs, particularly anything the care home might not provide. New clothes, luxury toiletries, nice foods like chocolates if she can enjoy them. Also just being the person to advocate for her when it comes to any decisions in healthcare etc.

I hope that helps a little. Don't visit if you feel your can't, and you could always explain this to the care home if it will help the guilt feeling (though you shouldn't feel guilty, even though you do!).

Your mum won't know any different if you don't go, so I wouldn't put yourself through it if it's too hard. She wouldn't want you to suffer. Seek some support from the care home, they might have some advice or know where you could get support, especially if they look after people with dementia.

Hugs x

Having worked in a care home, I can't say if they are truly judging or not. I worked with some of the best and some of the worst so I wouldn't even give them a second thought.

Might be unpopular, but, you know she's safe. You know they will be in touch if you're needed. I wasn't related to any of the clients but it traumatised me for the first few months. You don't see people, in that way, out in general, obviously as they're the ones in the homes or cared for at home. It was a shock to the system. I couldn't eat for a few days and they were on mind at night time.

Do not let anyone make you feel guilty. Everyone is just doing what they can. If you don't feel strong enough, if it's having a detrimental effect on you, if you know she's safe, then you need to consider your own welfare. I won't work in another care home. It affected me massively and obviously still bothers me these years later.

Do what you need to do, only you know what feels right for you. Know that however you may feel down the line, right now, you're only doing what you NEED to do, what's best for you in this moment. And that's all there is to it.

I don’t think you know what her MUm wants …….. but shit for OP to fob off the visiting on old neighbours if she doesn’t do it herself

It's hard. But I think you should still go when You can.

@Wishimaywishimight your post is completely unnecessary and unhelpful.

Every time I visited my dad in the care home, he used to verbally abuse me from start to finish. He had severe dementia and didn't know who I was. After 3 visits, I never went again. I regularly called the care home to see how he was and if he needed anything. He died 6 months later. No judgement from me.

My dad has recently moved to a dementia care home too so I understand what you are going through I think. I don't get anything positive out of going at all and I live 3.5 hours away so the plan is that I only go once a month over a weekend. He sometimes knows who I am, sometimes not. I try to not think about it as deaths waiting room but instead I go to make sure he's not being abused, that he eats, that he doesn't have sores etc. More of a welfare check than anything else, and it feels more practical than emotional.

If you don't want to go don't go. Yes, you will feel guilty and judged. But you have to cope with your emotions and how you feel.

Your mum is just surviving now and would she want you putting yourself through this if she could see you or know how you feel - no she wouldn't.

She sounds very advanced, I would maybe try and visit one last time.

I see you said she has no relatives but does she have any friends, old neighbours etc that would visit?

What will make you feel ‘better’ OP? I mean now, like if you visited her tomorrow, but also in the future after she has died. You need to balance both things. No point in visiting regularly and neglecting your mental health but also no point making choices now knowing you will be filled with regret when it’s too late. So I’d think about it from that point of view, what will be helpful for you to be able to live for the rest of your life? You say you are satisfied with her care and she no longer knows you, so visit/don’t visit for your own mental health.