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.

Visiting a care home when your loved one has dementia is really tough, it's normal to feel out of sorts afterwards but the more you go the easier it is. It's really not a nice thing to do but we go because they are a loved ones. Without knowing anything of your reasons for ptsd I know know if they past trauma is a factor but I think it's a mind set situation, not a pleasant experience but not everything in life is nice

My mum was in a home for several months after a massive stroke. Her mind had gone and she didn’t seem to register when me and my brothers visited and just lay there, paralysed and unable to talk.
I didn’t have a car and did the 4-hour round trip by train every week to be with her.
It was heartbreaking to see her like this but no way would I have stayed away. I’m so glad, now that she’s gone, that I was able to be with her at the end of her life.
You say she’s gone already but I find your attitude difficult to understand, especially as you say that you had a good relationship.

Can you find out who her Key Worker is? You could arrange to call her once a week to ask how she is?

Thank you.

It's one of those things that doesn't hit you until a certain point in life, when suddenly the possibility becomes very real.
Your MIL's timing might not have been good, but I defy you to find someone of her age who doesn't feel the same way. As you will one day.

Sometimes we have to do hard things for the people we love and who love us.

I don't want to go into a care home but I accept that it might be inevitable. I don't want my family who have their own jobs and families to have to deal with double incontinence, violent temper and refusal to eat or drink if, God forbid, I end up like my mother.

My Dad had to be persuaded to let my mother be cared for by people who knew what they were doing. He had promised never to let her go but sometimes it's the best thing. When she went into the home she had her first bath in months (she refused any personal care and would fight viciously) and they got her to eat again after weeks in hospital eating nothing. I'd rather be dead than be like that but it isn't an option.

I really enjoy reading opinions on MN but it seems very sad that posters often get really uptight and abusive if people dont give them the view they would like or have a different opinion, especially on what is a very emotive subject.

Hi OP I care for DH who has Lewy Bodies dementia. I understand fully how hard it is to watch someone you love go downhill with dementia. Could I suggest speaking to the Admiral nurses? They are very good at just being there to talk to. Also consider some counselling for yourself. This is a lot to take in and it hits you quite hard. I am some years in now but every so often I still wake up thinking why him? why us? and there even is a part of me that thinks maybe it will all go away. Of course it does not. In terms of visits, dementia patients can often be very confused but there are still lots of things they can enjoy. DH still likes to walk, eat certain things and likes music. I understand that many of these things will still be there right until the end of life. If you can I would visit, but I know it is hard.

Why are people being so over the top horrible?

Re @diddl I'm reading it as she's calling her MIL a bitch, not because the MIL doesn't want to go into a care home, but because she made that comment right after @diddl had made the, presumably very difficult, decision to put her father in one.

I think most people would prefer not to end up in a care home, but for many people it is the only option. And I don't think it's nice to make a comment like that to somebody in that position.

OP, I totally understand how you feel. having just spent 2 and a half years visiting my stepfather in his care home, I found it incredibly difficult. He absolutely didn’t know me at all for the last 18 months.
I ended up visiting every 6 weeks or so, on a Saturday about 1/2 hour before lunch when he tended to be at his best. I would phone every week for an update though.
Its bloody tough!

God I completely get how you feel

I moved my dad into a residential care facility and it has been amazing for him and given him a new lease of live

My visits have massively dropped off recently, and now I have flu and can't go, and I realise a few things that may be true for you too:

• I am exhausted
• I am exhausted with the stress and worry and only now realise that for the past 5 years I have used up all my holidays to go and care for him and I need a break, I deserve a break
• he is in good hands now so I can breathe and think about myself again a bit
• I am due some radical self care as I almost went under with stress (I also have a DH and DS with serious health and mental health problems)
• I am allowed to feel how I feel
• I do go and visit at regular intervals because he gets better care the more visitors there are
• but if I do not feel up to it I give myself a break

You don't need anyone's permission OP.

Don't worry about others judging you.

Just do what's right for you.

That's how I read it too. The MiL was effectively criticising the decision for @diddl's Dad to go into a care home rather than just expressing her feelings. It was tactless of MiL.

OP I'm sorry. I know it's a miserable position to be in, beating yourself up if you don't go, traumatised if you do. I don't know how to deal with it either. I would not judge you at all. I would tell my own DD to do what is best for her, take care of herself, and know that I love her unconditionally.

That's how I read it too. That was a really insensitive comment to make to someone who's father had just gone into a care home. As this thread has shown its a very sensitive and difficult decision for people and that wasn't the time or place to be making that comment.

My DH found visiting his DM really tough. Definitely impacted his mental health.
I think when our relatives don't recognise us/are really unhappy it's very tough and upsetting.
Having been through this not long ago, I think that your ability to advocate for your Mum is key here.
If you can't visit, you can ring the home regularly for an update. My MIL didn't always recognise DH but he would also write to her and the key worker would read the letter with her. She would then keep the letters and re-read them.
I think if you can find a way to connect and keep informed that's good.

@devongirl12 @diddl does not know me. She insulted me by calling me ‘as ridiculous as her stupid bitch MIL’ just because I never want to go into a a nursing home or have my children visit me in one.

Not sure why you feel justified in saying I am the horrible sensitive one!

As I said different people with different ways of how we treat our families.

2025istheyear

I owe you an apology for reacting as I did to your comment.

I did at the time think that my MIL was very awful for making the comment that she did.

However that has nothing to do with what you would want for yourself.

Apologies for not apologising earlier I mixed up who had said what within the embedded quotes.

If you don't live too far away, keep your visits short. Most CHs have protected mealtimes (it may not apply to those with very severe dementia but usually covers the whole home) so you might want to consider a twenty-minute visit before these, when you'll have to leave. My mother has passed the point of saying hello to me or asking about life 'outside' - I think she thinks I live or work there, and just pass through occasionally. She seems very flat and underwhelmed by everything, including family visits, but that's very characteristic of dementia. As others have said, try to focus on the practical - check her bathroom cabinets, sort out her clothes, cut her nails, chat to staff about how she has been, etc. The most important thing you said in your post is 'she is safe' and that is what you have to focus on; I daresay you have been struggling for years to maintain an illusion of independence for her and worrying about her wellbeing. I don't think anyone wants to end their days in a CH but you have exhausted all other options by that stage.

@diddl I understand it is such a sensitive subject. I have looked after elderly relatives. I don’t judge anyone for choosing for relatives to go into a nursing home it is honestly just one of my worst fears in life. My statement they are all dreadful was insensitive and I do respect the care the staff give it is just hard for me to ever imagine myself in one. I could have worded that to reflect my opinion of them which, is personal to me and my feelings.

I want my children to live free and without any guilt in relation to me and my future care. This is something I am sure of. I can’t control what will happen or how they will feel if I do end up in a nursing home but they know how I feel so I hope that helps them if they find themselves with the same feelings as OP.

This poster was not being unpleasant at all!

I don’t judge anyone for choosing for relatives to go into a nursing home it is honestly just one of my worst fears in life.

I made the age old mistake of feeling criticised for making a decision iyswim.

I don’t judge anyone for choosing for relatives to go into a nursing home it is honestly just one of my worst fears in life.

Lots of people don’t make this decision for their loved ones, social services and medical professionals go above their heads and take over due to danger the elderly person is causing to themselves and those around them.

I think this is a great post,@bernadetteo , I hope it helps you 💐

I think it's worth it if you possibly can, and perhaps counselling might help. Other than that, maybe consider

• taking a friend (doesn't need to be the same one each time, and you may well find that five more visits in, it starts getting easier)

-have an ongoing list of things to tell her about whilst you're there, whether family news or a squirrel you saw outside the home. It saves that horrible silence and makes it easier to distract yourself a bit with cheerful chatter.

-take along something to do, whether music to listen to together and maybe dance to if she can, or a favourite treat to eat, or some old photos you can tell her about, or a puzzle if she's up to that, or knitting.

-plan something lovely for afterwards. Coffee with a friend, or a swim or reading under a blanket, whatever would be comforting for you.

I realise it can be traumatic. I don't want to underestimate that. It usually gets gradually easier over time, and relatives are usually very glad they kept visiting. Wishing you strength and peace and comfort.