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.

Just wanted to add:

As for the guilt, please keep reminding yourself that you've done everything possible for your mother. A care home is the only safe place for her at this stage. The nursing staff will know that, and you know that.

I know you can't just stop yourself feeling guilty, but please keep reminding yourself that you have done the best thing for her. You have been a loving, caring, dedicated daughter. I'm sure that if she could suddenly have her mind back whole for five minutes, that would be one of the first things she would say. It ought to be, anyway!

PP's post is not nasty at all. It just doesn't validate you.
You clearly posted expecting support and encouragement to drop visits.

Edited to add - this post was actually full of love.

I'm not sure if this would be possible but when my son was away for 10 weeks we sent him a parcel and a little letter twice a week. Could you check with the care home if that would be possible and what things you would be allowed to send? Then she would feel loved and remembered and you wouldn't be being re traumatised by going there.
You could send very little things like her favourite sweets (if allowed) or get post cards made out of old photos (you can do this online) and send them. I appreciate she won't be able to write back necessarily.
Or would it be possible to phone her instead? I think it would be nice if you could phone her and read her a few pages of a book. I know she will get lost with the story line but she might like it. Or you could just read magazine articles. I'm suggesting that rather than having to think of conversation if you think that is hard.

Honestly op. Most of us agree it's really hard to visit ailing relatives whether at home or in a home but you just can't abandon her to a life with no visitors , you'd regret it for ever.

You need to do what is best op, look out for your mental health. My mum was in a dementia home for five years, she finally passed away last month. I didn’t go much, I found it incredibly tough and still have flashbacks, and that was my choice. Siblings defo went more and that was their choice. Dementia is one of those awful things where everyone has a view, and a way of dealing with it, and it’s nobody’s business how you deal with it but you. She is in the best place with all the care she needs - would she want you to even more stressed and upset about things than you already are - I doubt it. Be kind to yourself.

It's very, very hard. The things that have helped me were:

• Go for very short visits - I'm talking 30 minutes - and be prepared for a really tough time after that . I used to sit, frozen, at my desk for hours after each visit. I was totally numb. It did get better with time.
• Decide for yourself in advance when and for how long you're going and set it in your calendar. SOmehow this helps because you can see you've been, you can see you're going.
• You say there are no other relatives - is there a friend who could come with you? I've accompanied a friend in such situations and for me it was much easier than for her - but I felt I had done a really good deed and was happy to do so.
• Depending on the staff - if you feel they are open to it - talk to them and ask for ideas how to spend the time with your mother
• MUSIC - listen to music together.
• The guilt will always be there, whatever you do. Don't even address the judgment of others ("I would never put my mother in a home!" sort of comments. Ignore)

It may not be judgemental but it's unhelpful to OP. and it IS judgemental

I used to try to make a game of it when I saw my mother, as it helped me cope with it all. So I'd ask her questions about her family, and she'd tell me things like how her daughter (me) had done xyz - and I'd act surprised (while wondering who the hell she thought I was).

It's a horrible time for all concerned. The one thing to remember is that time passes differently for people with dementia...so whether you visit them daily or monthly they won't know the difference - and will probably be telling other people that you never visit them, regardless of how often it is...

I would never leave my family member without being visited. It doesn't matter if they remember you, it's about them experiencing kindness, a loving touch, communication, basic human interaction from someone who they have known and loved.
If only to keep an eye on things to make sure standards don't slip, to make sure there are no missed bed sores , those sorts of things.
If you need help, find a good therapist, but please don't abandon her, especially when you say she has know one else in the world that knows her

She needs the care home staff to know that she has an advocate, someone looking out for her.

Could you do a very short visit once a week, say 20 minutes. Just sit and tell her about your week. As pps have said, it's one of those things that is easier to do if you keep up a routine.

It's so hard (believe me, I do know).

i don’t have any advice but I want to say that you have been a good person to mind your mother all these years and I do understand 💐 it’s so complex and you have lost her already

Hi. I do sympathise with you. My mum went from hospital to a care home last December. She had dementia too but still knew who we were and still had good days to begin with.
I hated going it really spoiled my life. I'm an only one so apart from my DC there was no one else. I visited twice a week. The thing that helped me, I used to take two kalm tablets before I went, this seemed to take the edge off.

If she was in her room when I got there I persuaded her to get up and sit in the lounge. I felt slightly  better amongst other people. I used to chat with the carers if there were any about. Other than that I'd busy myself with sorting out her room. She passed away in June, I miss her terribly and wish I'd visited more.

@Wishimaywishimight FWIW I didn't find your post nasty or judgemental. You were just relaying your experience.

My mum had alzheimer's. She would "recognise" people that she saw often. By "recognise" I don't mean she would know I was her daughter but I wasn't a stranger, I was someone she knew. People who didn't visit her regularly were strangers...no acknowledgement at all. However, when she's gone, will you torture yourself mentally if you don't go regularly? The only people that matter are you and her.

What is it that affects you and why do you think it affects you? Is it the smell? Seeing the people? The way you feel about your mum?

So only posts that concur with OPs opinion yeah? happy to get blasted over being ‘judgmental’: seems that giving a contrary opinion is verboten but meh. You put it on a public site so here’s my opinion:

OP - although it’s hard for you, it’s even harder for her being there 24/7. I’ve no idea what happened in your background so can’t comment but I think on the face of it you should summon up your strength and visit your mum. No doubt she went through tough times when you were small to look after you (although please correct me if I’m wrong) so hold her hand, talk to her and give her some warmth and humility in her final days.

My Mum went into a care home 4 years ago. She was in her 70s but had dementia. My sister and I had to lie about where we were taking her and she wouldn’t unpack for the first few weeks as she was waiting to leave but didn’t know where to or who with. It’s the worst thing I have ever had to do in my life. My Dad simply couldn’t cope anymore with her erratic behaviour and it wouldn’t have been long til she came to harm. I live 250 miles away I have visited her twice. I sometimes visit my dad and don’t go to see her. My dad can’t bring himself to visit although does go about twice a year. It’s just too upsetting to see someone he loves like this.
I have a friend in a similar position with her dad and she has five siblings and large extended family and they make sure someone visits him everyday. He is about 100 miles away.
Im not sure what my point is but don’t judge yourself against what another family does. Families are complicated beasts and I too have grieved my mum already. Last time I saw her she asked who I was. It’s very painful having your mum not know who you are. As long as she is being cared for well, please do not listen to any judgement from anyone and as the awful phrase says, ‘you do you’.
I wish you all the best.

It wasn't just an opinion it was a completely different situation.

OP, can you come back at give us more information about why you find it hard and whether you want to have help with that, or whether you want to find peace with not visiting?

I agree it would be helpful if the OP could let us have more information, all we know is that her mother doesn't recognise her. Other than that there are so many variables we can't make any suggestions - how far away is the care home, what stage is her mother - is she in the lounge, is she still mobile and/or verbal, or is she bedbound and not reactive.

Of course that assumes the OP does want to be able to manage visits. Maybe she just needs to make peace with not visiting and that's something only she can do.

@Addicted2Sugar @catin8oots @Hoppinggreen @nearlylovemyusername Thank you for understanding what I was saying 😊

Extremely judgemental. You are lucky that there was an abundance of carers to assist. Not everyone has that or is willing to sacrifice their own wellbeing and family for the care of one person. I'm certainly not and I feel no guilt.

There are also degrees of dementia - we have the aggression, hitting care home staff, throwing objects and furniture - bedbound would be a respite at the moment when there are constant falls and fights. DOLS status.

Hope you are okay OP. For me they are in a safe and secure environment despite the constant falls. I cannot imagine the havoc they would reek released into the wild. You have to find your own peace. I agree talking with staff and putting your mind at rest.

My Mum was in a nursing home for two years. She passed away in July.

I visited most days. I spent the two years advocating for her. Doing my best to keep her safe, but it never felt enough.
These places are understaffed, and many of the carers shouldn’t be doing the job. Not all, but alot of them don’t care about the people, and don’t treat them like human beings. It’s disgusting.

Do what you need to do op, but please consider what I’ve said. Many care and nursing homes are not fit for purpose.

When my grandma was in a home with dementia (after living with my mum for years) my mum felt the same way OP.

I suggested she limit herself to the visits she knew she could do. Once a week (in my mum's case)? Okay, so every other day that week you know you're not going and can enjoy the day instead of trying to make yourself visit. You can schedule visits but that means giving yourself the rest of the time off.

If you go, go as early in the day as you can. Due to the sundowning my mum aimed to get there before 2, and if she ran late she'd postpone until the next day instead of getting there at 4 when it was all kicking off.

People with dementia don't always enjoy visits, my grandma found it distressing sometimes. We stopped buying her Christmas presents because it made her realise she'd forgotten Christmas and it upset her.

Don't expect more from yourself than you're able to do.

Finally feel able to return to the thread, I really regret posting it, but I wanted to thank everyone who commented.

I want to address the first reply which some people seem to think was an acceptable thing to say, it wasn't. That poster talked an entirely different situation where several family members were available to care for the elderly at home. I cared for mine alone for 5 years whilst also juggling a disabled household and fighting my own battles. It nearly broke me. They then went on to say how they could not imagine 'just leaving someone' which I have not done. And then it about 'I hope you find peace' - that's the thing, I actually have found peace and I posted here for help to manage these visits and the guilt of not going - I should have been clearer in the OP to say more regularly, I'm not an absolute monster who has just put her in a home and left her there. That reply sent me spiralling and is the reason I haven't addressed anything else in the thread until now. It pricked the exact same response I said I was struggling with in my OP. I need help here not to be told 'I would never do that'
I'm not sure why that poster thought it would be helpful to tell me of their very different situation and the fact they would never do that to their family.

Moving on

There is far too much for me to keep up with but I just wanted to say I am still going in to visit; I have obviously communicated that badly but she has been in 6 months and I have visited around 10 times. I haven't just dumped her there. I don't want to go, but I do go. I have also cleared and cleaned her entire house and got it on the rental market which was devastating

People suggesting I call the home weekly for an update - I call every few days. She doesn't need toiletries etc that is orders in by the home and paid for via her 'account' same as hair cuts etc, the admin team contact when it's low and I top it up via online banking.

Someone else asked if it's the smell I don't like - it's far deeper than that. If it was so simple I would be laughing tbh. Complex PTSD comes with deep emotional flashbacks, it's important to stress these are not visual or situational, they are emotional. It takes days to recover. I also do have and have had a lot of therapy for this, it doesn't stop the emotions or the hyper vigilance or the feeling of fear form everyday things. It's a massive mental problem and I have been working through it for many years. I actively avoid triggers but I am struggling because obviously I do want to visit my DM

Someone else said I just wanted to be validated or told it's ok not to visit, this isn't what I asked on my OP. I wasn't clear when I asked about the guilt of not going, I didn't mean not going at all I was clear that I have been going. No validation needed here.

And finally people have suggested I might feel guilt when she dies. My post is about the guilt I already feel. Tbh the only thing I will feel when she finally passes is relief that her night mare is over.

Oh no I just remember someone said I'm making it about me - yes, yes I am. This post is absolutely all about me. That doesn't mean I don't care about my DM or I am trying to take anything away from her. I have watched the woman who did her absolute best for me turn into someone I don't even recognise. I have spent years being terrified she would come to harm, fighting for the best care I could for her and she had always been at the very front of my thoughts and actions, but the other day when I posted this, yes it was all about me. I am the one living it. Oh yes it's worse for her of course but I have done everything I can for her over the past 5 years, I do need to look out for myself too. The fact that it's worse for DM should not mean I can't sake some help/support. That's quite a nasty blow as well tbh.

I know I have missed out a lot of comments it's just overwhelming the amount that's here but I want to thank again everyone who posted here - there are some good bits of advice I have taken but I just wanted to reply to the ones that made me look like a selfish bitch. I'm really not, I love her more than anything and it's breaking me into pieces to live through this.