I couldn't hate myself anymore just now if i tried

[TheoriginalLEM]

I visited my mum in hospital today, she is being discharged into a nursing home tomorrow.

She wants to go home, she thinks she is going home.

I feel like i have betrayed her.

She can't go home, i can't cope with her. If she goes home she will likely die.

She will however be MISERABLE in a nursing home that i havent even set foot in. It has terrible reviews but we have been searching for nearly two months and nowhere else would take her. She is a very difficult person and there are mental health issues alongside early dementia.

She was begging me, it has ripped my heart out but i still walked away - hate myself so much right now

TheoriginalLEM - you really must not hate yourself or blame yourself in any way. None of this is your fault; it is the fault of her illnesses that render her so ill that she cannot be cared for at home. The carers in the home go off duty and are not burdened 24 hours a day; they have proper lifting and other equipment; they do not carry the emotional load of being personally involved; they are able to use 2 staff to transfer where necessary.

I felt guilty when my OH needed nursing home care; but I did not blame myself. I blamed the appalling neuro-degenerative disorder he was afflicted with.

Please do not ask yourself to be super-human. You cannot do this alone.

I know what an emotional wrench it is; but you need to be at peace with yourself as you have a lot of life left to live and cannot carry this guilt around for ever.

The only advice I would give is to present her to the home as your cherished, lovely Mum. Send some nice photos of her as a younger woman so that they can connect with her as a person. The homes we visited had boards up with residents biographies and photos so the staff could reminisce with them about their interests and their family etc. Send in some personal items to help her connect and always refer to it as convalescence.

I hear you about the lack of homes. My relative needed a home but we couldn't get one due to their behaviour, in the end they died before we found one. Home wasn't possible any more as 24/7 packages are not provided, you get visits a few times a day and that's not enough for someone who is a danger to themselves unfortunately.

I think you've done well to find somewhere, and as the perceptive poster above says, I'd be involved in helping her move in/be there as much as you can (given corona!) Take photos, tell them about her.

We couldn't get one due to their behaviour
This seems to be a recurring theme, people with dementia home NO ONE is able to cope with

Sarahsah4r4 there are specialist dementia places which are brilliant but places don't always come up there very often and not always in line with say suddenly needing a place because a hospital stay has ended. I think a lot of homes would rather have (wouldn't we all!) quiet compliant patients who sit in chairs a lot or like the odd activity, and they have high staff/patient ratios, so only one person on at night, so they aren't able to cope with patients who need 2/1 care or just will constantly seek attention/do dangerous things.

My local CCG was desperate to move my relative into a home for financial reasons but we never did find anywhere in several months that would take them. It's so stressful for families- what a stress for LEM to have had to contact 20 homes and have them all say no. It's a full-time job caring for someone on the administrative side/getting meds for them, let along actually doing the hands on caring. Its just so tiring fighting in a broken system.

Fighting in a broken system
I can't see how the system will ever be functional, how can society ever have the money or the will to give ever increasing numbers of dementia patients the care that they need?

The system only just hangs by a thread because it is it is mostly possible to guilt families and children of dementia patients into providing care, and the suffering and distress of these families is kept hidden
As we increasingly become aware of the horrendous toll on the health of family members who are railroaded into providing care more and more family members will outright refuse

Sarah we are not the only country who has a large dementia population, other ways to do it are to have dementia care reintegrated back into health care (rather than under council care who really struggle to regulate/work with NHS) or to fund things differently through social insurance. It is always a huge problem, but the current social care system is worse than say in Nordic countries, and that is on us, pay more tax/or insurance is inevitable (and I for one would be happy to pay an insurance of a couple of hundred a month for that purpose).

And I agree, in the UK you are just guilted into care til you go mad and then they give in, it's horrible.

As usual the Nordics do it properly and we get lumbered with the fuckup and coverup option ☹️

I think that it must be galling to be turned down by some of the other homes, but I do think that these would probably not have been the right place for her and would not have been set up to cope with more challenging behaviour. They are what I would think of as care homes "light" but the home you have got her into is prepared to accept her, with all the behaviour they've been told about, so it does sound as if they would be more tolerant and experienced and perhaps will make her more welcome and be less judgemental?

As an outsider visiting these places can be hard, but that's because we are and want to be independent, so we can't imagine what it would feel like to be there. However I do think that it can help relieve the person who does have to be there from an enormous amount of stress and decision making that they can no longer cope with and although it may seem institutional, to us, they can benefit from not getting stressed about being hungry and worrying about meals etc. Hospital life, can be noisy and stressful and she may benefit from being in a more settled environment, which may help reduce some of the challenging behaviour once she's had time to settle in.
This is so hard for both of you, but you must remind yourself that you are doing your best for her and at least the home sounds better than being in a busy hospital ward. Can you talk to someone at Age Concern or similar about some of these issues? I hope that having made this decision, it relieves you both of some of the stress.

@TheoriginalLEM I read the OP without looking at your name, and hoped it was you. This is going to be so hard for the short term, but, now, you have your life back. You have your daughter away from her, you have freedom. She is not, and ever should have been, your responsibility.

Sending love to get you through the next few weeks, but honestly, I'm over the moon for you.

Iirc this a woman who you could never please, with dementia or not. Please don't beat yourself up. You need to prioritise your own mh and give yourself a break .

Very kind and helpful stuff on here:

1. This is not a dilemma; you have no alternatives. It is a fact.

1. Your awkward relationship with your mum causes more guilt if you worry your dislike prevents you from "doing the best for her".

1. No amount of misery helps her, you or anyone close to you.

1. Your job now is to prioritise yourself and daughter.

1. Much love from me.

Sending hugs to you.

My mum died 5 years ago. We were very close over her last couple of years and she died in a hospice. I had been caring for her as much as I could. She went into a hospice when she could no longer eat and she was essentially starving to death. The last conversation I ever had with her was a row - she begged me to take her home because her husband wouldn’t agree to it. I had to say no because it wasn’t safe and we couldn’t safely take care of her there. She couldn’t stand up, she was in a very bad state. She said I was writing her off and if she stayed there she would die. After that she deteriorated quickly and she never spoke again, she died a couple of days later.

It still haunts me now. I know there was no choice but I still can’t think about it without crying.

It sounds like you have no other option - try to hold on to that, and know you’re doing your best. Sometimes there is no good option.

I really, really feel for you and I am sending you every positive thought I can. I have been through this about a year ago and I can totally empathise.

You are absolutely doing the right thing. It would not be safe or kind for her to be anywhere else than a care home now. Anybody who doesn't understand that (including your mother) just has not been in your situation.

It was the hardest thing I have ever done but looking back it was the right thing and eventually my mother settled. She is so much safer in a home and more than that it s better for our relationship because I can concentrate on just chatting and listening to her calmly. For years while I looked after her and her home and other needs I hardly relaxed with her. I rarely just sat down and gave her my full attention which is what everybody really needs she wants, especially those with dementia.

I voted YANBU because you're not unreasonable to do what had to be done. My dad had dementia, it's often impossible to handle outside of a care setting. I am sorry you're going through this, OP.

Sometimes life is just shitty, OP, and there is no solution. My mother felt exactly the way yours does. What I would say is visit lots of care homes and make sure that you, at least, are happy with the standard of comfort and care she’ll be getting. There’s a huge variation and IME it’s not always the most expensive that’s the best. All you can do is your best.

@SinkGirl I’m sorry she said that to you. It sounds like she wasn’t at peace with passing as some people are & took it out on you but you don’t act rationally at times like this.

If you’re in a hospice the drs aren’t expecting a recovery.

Sorry just read through the thread and wanted to add that I too had a very complicated relationship with my mother. Most people did because she was mostly unpleasant even well before the dementia. Nobody else was involved in her care because she was difficult to be with. Social services did the little they could and I coped alone with a FT job, needy children and 200 miles between us. It was hell.

It was very hard to find a care home and add to that the guilt of 'putting' her in there (I hate that expression as it gives the impression it's really easy to just decide, turn up and dump your relative) but honestly since she has been there she is happier, I am happier, she is safe and for the first time in my WHOLE life we have quite a nice relationship because other people are doing the practical care which leaves me able to look after my own life, my mental and physical health and it has released a small amount of energy to just relate to her kindly instead of being (justifiably) angry and exhausted.

I hope so much that things work out for you and that you get some of your equilibrium back. My deepest empathy.

I had to put my mother in a home two years ago after my stepfather died, and I still feel guilty now even though she has settled in and is now mostly happy there. So to feel guilty is a perfectly natural reaction, however you absolutely must not hate yourself for it, you are obviously very caring in spite of what sounds like a difficult relationship with your mum. As others have said, you can always look around for somewhere better if you have reservations about the home.

People often say we should look after our elderly mothers because they looked after us, but there is a world of difference between a 20 or 30-something looking after a child who will gradually become more independent as time goes on and a middle-aged person (often in their 60s, or god forbid 70s if their parent is very old) looking after someone whose needs are only going to increase.

Most of all, take care of yourself

Guilt and self hatred are pointless emotions

Anger, sadness, grief, all have a purpose, but guilt is pointless and does not lead to anything being better for anyone.

Feeling guilt is part of life though, fwiw I think you made a good decision. Try not to feel bad 💐

So many kind messages and shared experiences, thank you.

Im sad today but feel better that she is safe and being looked after. The home called and asked for more clothes for her, which is difficult because she lived in her vest! I am going to drop some bits off tomorrow, i can't see her and actually think that would be a bad idea just now but im going to make her a hamper of nice things from M&S and take them over.

The lady i spoke to sounded nice and described her room. She has en suite and two windows with a nice view that she can look at although they have scaffolding up at the moment, it will be down soon