Discharging mum from rehabilitation

[Katyy]

Hi. Mum 90 lives alone in a first floor flat.She has poor mobility due to falling and breaking her hip 3 years ago. This is her 3rd fall, this time she’s fallen down her stairs, she has a stairlift, we don’t know how she fell because she loses consciousness before she falls due to a drop in BP. She had a small brain haemorrhage and cuts and bruises which all seem okay now.
She’s currently in a rehabilitation centre. I spoke with the social worker on Friday, and she seems to think she should return home, because that’s what she wants, and there’s nothing else she can do.
I’m so scared of her coming home, she is showing some signs of dementia which I told the SW about. It’ll only be a matter of time before she’s back in hospital. She has carers 3 times a day, but as I told the SW that still leaves 22 hours alone. Is there anything I should, or can do next ? Thank you.

You need to tell the SW that you cannot provide any care for your DM, and let her fail. It’s the only way if you think she should be in a care home.

Social services see care home as last resort because of the funding. If your mother can afford to pay herself (or you can) then you should start pursuing this. Eventually the hospital will refuse to discharge her to home. My DM has carers 4 times a day but has started falling, of course not when they are there. We are now having a social services assessment with a view to moving her into a home. This is of course not what any of us want but it is inevitable. We are all in our 70s and there are only so many times we can be called out in the middle of the night, She has an emergency cord and a button round her neck. I thought that meant that someone would go round. Apparently it means that they call me to go round. Last time she fell and was in pain there was a 90 minute wait for an ambulance and we were told they would’ phone and assess the situation first’.

What does the occupational therapist say?

I have to say a lady with postural hypotension using a stairlift sounds like a nightmare.

I think it sounds like she needs to move into a care home. Have you looked at any in your local area?

It definitely sounds like you need to start looking at care homes and the organising it takes to do that.

Hi. Thank you for your replies. Mum receives housing benefits, so no real money. The OT hasn’t been in touch yet, she was on holiday for the last two weeks so might be in touch shortly, although, I don’t think there’s anything that can be improved to make her more safe.
mdh. I hear you, it’s so difficult, im 65 and still working .Mum has had 9 hospital admissions in the last 3 years. I’m an only one and being called out for emergencies day and night is no good to anyone. I’m really struggling with it all now. She won’t wear the fall alarm either which makes things even more difficult.
Permanent.
The stair lift is a nightmare. She sort of hops on it, it turns my stomach 😱 but she won’t wait for it to turn the corner on the landing, sounds ridiculous now I’m writing about it. She has some sort of dementia I’m nearly sure of it, she can’t join the dots, or see consequences now ,but refuses to go for testing. She’s had a brain scan, after the last rehab place recommended it, it showed some lesions but the Dr said it was nothing to worry about.
I just wish she’d agree to a care home but she’s adamant she’s coming home. 🤷‍♀️ Could they refuse to send her home because of the stairs ?

I would describe exactly what you say about hopping on the stairlift and not waiting for it to the occupational therapist, and also that she won't wear a pendant alarm and it's no longer possible for you to cone out at night (it must be half killing you doing that ) OTs have quite a lot of influence, or should do in a good team. It sounds as if she's medically fit for discharge, and the team are (correctly IMO) assuming mental capacity to decide on her destination of discharge as there's no reason to think she doesn't have it. If the OT does a proper cognitive assessment that might change or it might not.

My view from what you've said so far is that you've got a few more rounds to go on the falls/admission merry go round before someone stops the ride. What will speed things up is you getting your concerns on the record (hence the discussion with the OT this time) and you REFUSING to go round in the night with a fall. Call an ambulance instead or ask your mum to do it if you think she will. It sounds harsh but it may be the only way.

Hi I'm an OT and I just want to add in there's options other than home or care home. I'd be deeply concerned by the way you've described the transfers on and off the stair lift and would be assessing capacity regarding the risks of using this. A less restrictive option than 24 hour care is an extra care scheme where someone has a self contained flat with care provided internally. There's also pendant alarms for help to be summoned at any time of the day and night as there's always staff on site.

In my local authority, I can give a view on whether someone can be safe at home but ultimately if the person is assessed by the social worker to have capacity then it's up to the person. If the person does not have capacity then unless there's someone with LPA, it's up to the professionals to determine the most appropriate discharge destination.

Hope that helps.

Has the SW actually carried out a capacity assessment in respect of capacity to chose accommodation post discharge?

I’ve been in exactly the same situation with my MIL. She was deemed to have capacity to make the decision to return home despite me and DH being adamant that she wasn’t safe.
~She did return, and within 1 week had had 4 falls. The 4th fall when she was found by the morning carer resulted in a hospital visit. She never returned home after that, spending the last months of her life in a rehabilitation unit because a care home wasn’t available.

I’d agree. If she falls in the night and calls you, phone an ambulance before you set off to her flat. Every time.

Before? Instead.

When you say 'signs of dementia' has someone actually done a memory assessment?

Lots of elderly people have slightly abnormal brain scans, key is how their brains actually function.

I also see a lot of capacity assessments done that honestly aren't capacity assessments at all, just 'they were able to say what they wanted' which isn't the same thing.

If you do lack capacity, your wishes must still be taken in to account but they aren't the only thing if you have absolutely no grasp of the situation in hand, and appropriate care needs to be provided.

Thank you all so much. It really is a minefield isn’t it. Without this thread how on earth is Jo bloggs ( me) supposed to navigate all this ! It’s a real learning curve especially at the moment, as my head feels as if it could explode.
She hasn’t had a cognitive assessment. The Dr suggested it a few years back and she refused. I think I’ll mention it to the SW or OT see if she could have one while she’s still in there.
I really think I need to step back. I can’t be on call 24/ 7 any more it’s recking, my, and poor DH life. I feel so guilty on so many levels. The self contained flat sounds a brilliant idea and could work for her, but she won’t agree, she’s already said she’ll take her chances with her flat if it kills her so be it ! Then that leaves me to deal with the awful consequences.

Taking a step back needs to include the reality that she may be hoping to die from one of her falls. Don't feel a moment's guilt if that happens, I would feel the same as her.

That said, it's not really that simple because what is happening in the meantime is increasing misery for her and for you, and your husband. I had to call an ambulance for my mum despite the fact that a few hours earlier she had asked me not to do it. I called because it was not possible to literally look at my own mother rolling in her own wee on the bathroom floor for the second time in a night, obviously confused unwell and unable to speak, and not call for help. Life is difficult and we can't plan for all eventualities. It is OK to involve other people. Don't feel guilty for it.

So sorry for you and your mum it’s absolutely heartbreaking. Your right that we can’t plan for all eventualities, life’s not like that, it’s not fair either. Think your right we have a bit longer on this merry go round yet.
Just hope I have the strength of mind to carry on.

Let's assume your mum has no dementia and is capable of making her own decisions.

She knows the risks - she's clearly said she is happy to take her chances in the flat, and at 90 she must know she has a very limited amount of time left and she wants to live out what there is her way.

So a lot of this is about you coming to some acceptance and finding ways of protecting yourself. Don't be called out for emergencies day and night. She has carers, there is an ambulance service (not great at the moment but that's the choice she has made), hospitals, OT etc etc. But there is also the emotional acceptance that you cannot stop these things happening, or "fix" everything. Sorry, it's really tough.

This is partly why A&E is heaving.
You're plugging the gaps and perpetuating an unsafe situation through best intentions.
Only when you fully step back and a crisis develops will things fail and social services be forced to step in. No more shopping, cleaning, welfare checks, late night call outs etc. Make it very clear to social services if she is sent home you will do absolutely nothing. Sounds heartless but is the only way.
Surely your DM wouldn't expect this of you indefinitely anyway?!
Ex district nurse having seen this situation play out time and time again.

My grandmother was also v reluctant to move into a home. But struggling and unsafe so we got the social worker to persuade her. She did and my gm was very content in her home. The social worker was a legend.

Yes I can imagine this happens all the time. Your both right of course I do think some of the problem is me, I can’t seem to let go.
It causes me more stress not helping, so I can’t win either way. At least during the last two years I haven’t been able to go with her in the ambulance to A and E or visit apart from this time. I’m not the person for the job, unfortunately for my mum .

If you are worrying about possible dementia, it's important to talk to your mum about your concerns and see if you can visit the GP with her. Partly because there are a few reversible conditions that mimic dementia and the GP can test for them. If those are clear, GP can refer to a memory clinic and you can catch it as early as possible.

Re-read your last sentence. Why do you think your mum's wants out trump yours? Surely she wouldn't let you do the 'job' anyway. It's not what I'd want for my busy adult DC and I'd think far less of any parent who was happy to let me be burdened with it in the prime of my life.
Difficult choices.

cptartapp. Good question why do I ? Probably because I was brought up the old fashioned way, to care for everyone around me first, and putting myself last. Mum always instilled in me that children came first, then husband and parents. Mum had 3 siblings but she was the one that cared for her parents.
Not everyone is the same though, which she finds very difficult to understand in fact she told me at my last visit I was very hard hearted. Never been called that before.

The line that opened my eyes was "don't set yourself on fire to keep someone else warm". Like you, I was brought up to do that, put everyone else's needs before my own. This is not how everyone is brought up, we just think it's right because it's how we were raised. Your needs are as important as everyone else's, you have the same rights as everyone else. This is hard to believe when you've spent decades being told otherwise. Putting yourself first (or at least, not last) is something you have to practise.

Is there anything you could or should do next? All the choices here are your mother's. What you can do is be clear to the person in charge of the discharge what you can and cannot do. It is possible that in order to get home your mother will wave her hand and say that her family does all that for her. The discharge team need to know that said family is a team of one and is working. This is the point where you could draw some lines - not be called out of work to wait for an ambulance (MIL had three in one week), not be called out after 11pm. It's not your job to protect your mother from the consequences of her actions, especially not at the risk to your health, job and marriage.

Knotaknitter. All very true of course. It’s so difficult to shed years of what in fact is brainwashing. Thank goodness things are changing for the better.
I will be making things clear, with the SW and OT. I will continue to do her shopping, appointments and bills paperwork etc. This is all I can manage, and even that is too much sometimes. I’ve promised my DH we’ll go on holiday as soon as we can. We both need a break. What will be will be.