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.

I know people always say "ah, but she/he doesn't know me" etc but for me that is not really the point. My grandmother had dementia and we were 'lucky' in that there were several siblings, including my mum, who lived nearby and one aunt who lived with gran so she was able to remain in her home, although bed-bound for the last few years, with daily carers. Also, several cousins lived quite close and we all visited her regularly.

I loved her very much and continued to do so even when she was very incapacitated. I did and do believe that when I just sat with her, holding her hand, chatting about day to day things, when looked in her eyes there was recognition / love there and that she knew on some level who I was. Whether or not this is true, it gave me comfort and we all told her we loved her when we were saying goodbye, even when she couldn't answer us, she still could smile a little.

I cannot imagine just leaving someone you have loved and who has loved you without support / visits in the most difficult years of their lives however I have no idea what you have been through in your life to make you feel this way but, whatever transpires, I hope you fine peace.

I hope my post does not sound judgmental, I truly do not mean it to be. Everyone is entitled to feel how they feel and to live the way that makes most sense for them.

I hope my post does not sound judgmental,

It sounds judgmental alright.

You make out you would never do anything so awful yet you are hardly a good person when you couldn't wait to wrote paragraphs basically berating me.

Dress it up however you like, your post is nasty and unnecessary.

My experience is that it's really hard to go if you don't do it regularly - all the difficulties you mention feel insurmountable. I really don't think the staff judge. I was the last person my mum recognised and she doesn't know me either now. It is very hard but I get something from visiting.

I understand OP. I know how hard it is to brace myself to visit and how much I grieve afterwards. It’s exhausting.

I visit my parent once a month (I am 2.5 hours drive away) but they do have regular visitors who live nearby

I don’t know what the answer is. I go because even though he doesn’t know who I am, I love him. I want to do that for him

also slightly selfishly I have come to terms with the fact that I might not be with him when he dies because of the distance and me being there telling him I love him every four weeks helps hugely with that.

I understand. it’s so hard.

I spent a total of 15 years visiting my parents in care homes (8 for one, 7 for the other), although only one had dementia and not as badly as your DM. It’s shit. I am an only child, so I was the only regular visitor for the second parent, too.

I don’t think anyone finds it easy to visit relatives in these places, but personally I think it is really important to go. Over 15 years I went to each of them once a week, oftener at first for DM but I couldn’t keep it up that often for so long. I think it did traumatise me, yes. In my case my parents did know me, but even in yours it may be that your DM does know you are there in some level. But even if she doesn’t, I do think that visiting often enough that the staff know who you are is really important for your DM’s welfare. Both the homes we used were pretty good, but staff are always overworked and underpaid and of varying skill and niceness, and there have been many occasions when it was a bloody good thing I was around to advocate.

I agree with @Alonglongway that it’s worse when you do go if you don’t go regularly. I would sometimes reward myself with a little treat for going. It’s so hard, I wouldn’t wish it on anyone. My advice would be to push yourself to visit, but at a frequency that you think you’re able to sustain. You can only do what you can do.

hope this helps a little.

Its really hard I struggled everytime I visited my mum, it did get easier, but my brother could just not go, it traumatised him.

Sending hugs

So difficult. I have said to my daughters that if I really don't know who they are, not to visit me as it's too upsetting. I obviously hope I never get like that or end up in a home. You are making sure she is safe as can be so you need to also look after yourself.

Could you go in once a month but for an extended visit, say over lunch?

There will be some people with visitors everyday and some with none at all. Most will be somewhere between the two!

What you can commit to and feel able to do is really dependent on everything else in your life. The important thing is that her needs are met, so she has what she needs in the home, whether that's more toiletries, replacement clothes or someone keeping an eye on the situation. None of those have to be provided by you, or they can be done by sending things in rather than going yourself.

I have one (distant) elderly relative in a care home and I don't visit (too impractical) but someone visits and reports back once a month.

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.

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?

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.

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.

@Wishimaywishimight your post is completely unnecessary and unhelpful.

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

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

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.

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

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

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.

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.

@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.

@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.

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.

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

I have found this too.