Having mother home- I feel guilty.

[speakout]

My 89 year old mother has lived with us for 6 years, but had a stroke 3 weeks ago, she is still in hospital on a stroke ward, it could have been worse, but looks like she has lost a lot of mobility and strength in one leg. The care is great ( NHS), she as daily physio and taken to a specialised "gym" in the hospital. Her mobility is improving, but slowly and she can't yet walk without a frame and staff, needs help to get to the toilet etc.
I am terrified about the next steps. My family is pressuring me to have her home now as soon as possible but I can't sacrifice my life like this. We have narrow winding stairs and could move her into a room with a toilet next door, but am guessing she will still need supervision including during the night. I will be having to cook, bring trays of food, and I feel afraid of the impact this will have on my life.
I work full time from home, and I also care for my adult son who has severe mental health problems, situautions with him can often mean night wakenings for me ( he is at times at risk of suicide).
My OH sister and daughter feel my mother would recuperate faster at home- and that may be true, but I would worry about her safety, I would need to learn how to handle her, how to help her shower and toilet etc.
Interesting to note that those family members urging me to have her home are not the ones offering care.
My sister lives abroad- long haul fight- and last visited home eight years ago. My OH works full time- long hours and travels a lot, so is gone two weeks out of every four. My daughter lives in her flat 40 minutes away but also works full time, and has a part time job too ( which feels more like a paid hobby than work) but nnot a lot of spare time.
I tried to have a conversation with my OH last night about the situation, but after listening to me said " I think you can get special chairs, you would manage somehow" I was just in despair that he wasn't listening to me at all, and took myself off to bed early where I lay crying for an hour.
It all feels so hard, I feel very alone, and guilty for just not wanting to suck it up.
Any words of wisdom would be appreciated.

And if you do make her officially homeless they'll just keep her where she is while they scramble and do find her a place urgently.
They won't tell you that though, as they want to emotionally blackmail you.

Hi @speakout others have given lots of good advice. I just wanted to say my mum is in a similar position to you, she's been a carer all her life. She's now 70 and still caring for my sibling with MH problems and my 93 year old Nana with dementia. I would absolutely be against her taking my nana into her house in this situation. The stress and worry has already probably taken years off her life. I think your daughter will understand when she thinks about it, she's just used to the status quo and is thinking things will go back to normal somehow, when that is not the case.
I've lurked on one of your other threads for years and your words have helped me. I know you have a good relationship with your daughter and care deeply for everyone involved. I'd talk frankly with your daughter about this.
Good luck and some positive energy (or unmumsnetty hugs if you prefer) from me.

Is self directed support good? How much will it pay? Enough for private carers?

Your plan seems great in theory OP, but I'm not sure it will work in reality.

@TUCKINGFYP0 has given kind explanations as to why she may not want to go out even if things are organised for her, and on the other side she does not care or understand that you need a break from her - and it seems like no one else in your family does either.

If she needs to go to the toilet and the carer is not there, what will you do ? Ditto if she starts waking up in the night.

I met a dear friend for lunch at the weekend. She has been through the mill with her DM and advanced dementia.Thankfully her DM is now in a home and she says she feels overwhelming relief, as she was getting phone calls all through the night and having to do personal care every time the carers didn't arrive.

It's no picnic either way and I don't envy your situation. If you are determined to have her back then insist the care package is in place before she is discharged.

This sounds like a good plan to start with. I assume the POC will include a morning call that will make sure she is up and ready in time for any day care.
I think the key is always being totally clear about what YOU are able to offer as family and let POC plug the gap that is left. That is fair to both you and your mum.
It would be good to discuss with SW what options are if things deteriorate or are not as great at home as in hospital, or is there a back up plan. Or what will happen if she refuses the day care or find it too tiring.
I think it is also good to be clear with your mum why you need all these things to happen for her to return home to you, so she understands that they are not all just being set up for her fun and entertainment but also because you are trying to work from home, have other carer commitments to and need to look after your own needs.
Hope it all goes to plan and well done for standing your ground but not just insisting she does not come home.

The difficultly with self directed support @speakout is that it’s wonderful in theory & brilliant in practice for some people but it brings a ton of paperwork. You have to keep track of all the expenditure and account for it back to the local authority.

individual budgets are usually much lower for older ppl because ageism is inbuilt into the system so a younger person with disabilities will be assumed to need things like work and socialising and leisure on top of personal care, with older people it’s much more as long as their basic care needs are met they don’t need much more

Self directed care:

They can assess as needing 24/7 care but not provide it because they can't afford it.

You can have the budget and then not be able to find enough people/anyone to work it. The carers go on holiday or are off sick, who is going to cover it?

No. You need to look for a nursing home who will have trained staff to look after her personal needs and hoists to lift her when needed. It's very difficult to move a grown adult alone when they are immobile x

Given my recent experience with FIL who is currently awaiting a care placement and is in a "step down" community hospital, I would add to the chorus of people telling you to proceed very carefully here. With my FIL, we needed a crisis for someone to recognise how great his needs were and until he had a fall, his "independent" living was supported by his daughter, his daughter in law, multiple neighbours who kept checking in on him, carers 3 times a day, even this taken all together was completely insufficient and everyone around him was burning out.
You have stated your boundaries but it doesn't sound like there is anything in place to help you enforce these boundaries once your mum is at home. You're saying you will not provide personal care but what happens when your mum needs the support? What will you do at night when she calls for help to go to the toilet or when she has soiled herself? You have said you will not provide lifts or support for socialising but it is very likely that these tasks will be dumped on to you. Realistically, what will happen if you say no?
Unfortunately, your mum's needs will only increase and it sounds like you are already the designated carer. If you take her home you are very likely to end up in a position where you are doing increasingly more care and waiting for inevitable crisis because that will be the only way to get the support you need. You are now in a position to bypass some of that burden and heartache by making it clear to the hospital you need to step away from providing support.

She needs to go onto a home where she will receive proper care.

Sorry no one is listening to you OP ❤️ We are listening.

Absolutely this.

To @coffeemonster28

I also think that your mother should go into a home. She would have company there and you will retain your sanity. I speak from experience.

A nursing home is not an option.
The LA won't finance a place she doesn't qualify.
She/I don't have the money to pay for one privately.

Absolutely this.

Through first hand experience I can tell you this is exactly what happens. Even with supposedly live in care, we still ended up shouldering the bulk of the care for my MIL whilst she was charged nearly £7000 a month by an agency.

MIL was also ‘hosting’ too. She was able to short term convince outside agencies that she had mental capacity, but we knew her well enough to know she was very, very confused, wasn’t aware that she was even paying for care - she thought she had a ‘friend’ staying and was adamant that she had been regularly going out by herself (she was virtually immobile) We repeatedly asked for a mental capacity assessment but were fobbed off and told by social services she was perfectly capable.

In the end, to get any results, we had to withdraw total support ourselves so they could see just how much we were covering. It was horrible to have to do this, but the only way we could convey how serious things were. DH had always handled her finances so we stopped even paying her care bill. When SS contacted us regarding this, we had to tell them that they needed to talk to MIL about the non payment as they assessed her as mentally capable therefore, it was nothing to do with us. As expected, MIL had no idea she was even funding her care or even how payments were being made.

If the authorities can offload anything on to relatives, they will. I know just how tough it is to be deliberately unhelpful and uncooperative, it goes against everything we’ve been brought up to be, but if you accept any responsibility for her care it will crush you. I’m sorry that sounds dramatic, but believe me, I’ve been through it with both my Narc mother and MIL and it was hell.

@speakout just to re-iterate pp's. DO NOT agree to discharge before care package is in place.

I also wanted to mention hospital social workers as support for you and Mum, not sure if you've approached them?
https://www.myhsn.co.uk/top-tip/what-is-a-hospital-social-worker

A couple of ideas regarding company for her if she returns home

www.befriending.co.uk/about/find-a-befriender/
Also the church your Mum attends may be able to offer extra social interaction for her.

You're doing a great job, do remember to take care of yourself first. 💐

beetr00 thanks, that's really helpful.

I was a hospital OT for over 20 years and honestly a patient who could wash and dress themselves with minimal supervision, mobilise and make hot drinks and snacks would be unlikely to receive any more than a morning care call.

One thing they do is offer a higher package of care through reablement teams on discharge for 6 weeks, they then assess care needs as being lower and reduce the package of care.

The level of carers available in the community is shockingly low. The hours are brutal and the pay is awful. The expectation will be that you as her ‘main cater’ will be meeting her needs with day care as respite.

I would advise you have an advocate for you in any planning meeting and the level of care is firmly agreed upon and is long term not ‘discharge to assess’.

*carer

Also would she wear pop socks instead of full tights? If she wears longer skirts you can’t tell that they are knee length.

When I was a district nurse I saw carers leave the engine of their car running whilst they ran in and did the bare minimum with clients as fast as they possibly could. I can almost guarantee they are also exaggerating how much your DM can do, just to get her discharged. Have seen that many a time to the families dismay.
I still can't quite believe your DM is happy to do this to you.

My 86 year old mother recently broke her arm . She lives alone . She wasn’t offered anything at all just expected to go home and cope. I phoned social services who said there are no carers available for months Even the private carers organisations have long waiting lists. I wouldn’t even assume your mother will get a carer once a day. You will be expected to do it all. If she’s living with you she will not be a priority. Think carefully before you have her home.

Thanks, this is all really useful.
I will speak to my carer's support worker tomorrow- I have a long list of questions and points I need to discuss.

It comes as no surprise to know my mother is not thinking about the impact of care on me.
She flutters about saying " I wont be a bother to anyone".
My mother's consideration of others stops at the end of her nose.

So who is going to put your mother's tights on?

Who would pay for the home?