Mum won't stay in rehabilitation

Thanks MOinca good advice although I know it's going to be easier said than done.The o/t rang back to say because she's not strong enough to make herself anything to eat yet, she can have carers 3 times a day.What a relief I just hope , she accepts them coming and going , but like you say I have to be firm.I feel at the moment I'm pulled in all directions, there's only so much to give, before I'm ill and no good to anybody .

KatyjI think a bit of tough love comes in here. Speak to your mother and tell her how much help you can give. Tell her, for example, that you will call in most evenings and do a weekly shop but cannot help with getting up, going to bed, cooking, cleaning or bathing - and then stick to it.

Speak also to social services and make it absolutely clear to them, that you are the only family she has and that you cannot offer the help she needs. They are used to elderly people telling them they need no help, that family can cope, but hearing from you - and you sticking to the limit you have said you can manage - will help bring it home to them.

It may mean a day or two when your mother has to spend a day in her night dress, and live on bread and butter. But the quicker everyone, especially her, realises that she has to accept outside help, the better.

It will not be easy, and in very different circumstances, I have had to refuse to give help I could not sustain to a dear one who needed it, and it was not easy, but had to be done. The result in the end was one that was better for all of us.

You have my sympathy at this very difficult time.

Just had a call from the o/t to say mums ready for home and she doesn't want carers her family will look after her ! The family is me an only one, when she phoned I was looking after my young grandchildren in the park so couldn't talk for long, I'm at work for the next two days, so goodness knows how I'm going to manage .

Trisher I think you are very fortunate. I had to contend with two different local authorities in counties 100s of miles apart and had similar experiences.

In one case a particularly unpleasant consultant psychiatrist played silly games of intellectual brow beating and emotional blackmail with me to try and get me to take a relation into my own unsuitable home (and out of his health authority) before he was fit to be discharged. Fortunately I was supported by the Community Psychiatric Nurse attached to my uncle's GP practice, who shared my opinion of the consultant and said he would not consent to a discharge until a place was found in a suitable care home and guided me to the care homes best suited to his care (very successfully my uncle lived in the home chosen very happily for over six years).

In the second case I was joined in the care of other relations with a cousin who was herself a consultant in the NHS and we could not stop the precipitate and premature discharge of a patient with dementia back home to live with her similarly afflicted spouse, with little warning, no equipment, and into a house that was completely unsuitable for their needs. There ensued 5 days of chaos, with multiple medical and psychiatric interventions, a care work who went well beyond the call of duty to try to cope with caring for them and my almost constant presence. I then told Social Services to find me a care home with places for them immediately, which they did. My cousin and I had by then already put in an official complaint that was later upheld.

Fortunately my relations were self funding, and after a short stay in the emergency care home we moved them to one more conveniently situated and more suitable for them, with absolutely no help and advice from social services.

M0nica can I say my experience was entirely the opposite. The team caring for my mum were concerned about where she went and what provision was made for her. She was in hospital a long time and one proposal was a care home with nursing care. When I couldn't find one that I thought would suit her they immediately began looking for a care package so she could go back to her own flat. She was in hospital for almost 5 months and no-one ever suggested they needed the bed. I don't think she was an exception. A much younger woman in the next bed (possibly late 60s) was complaing loudly because they wouldn't let her go home until a new banister was fitted to her stairs. She had a broken leg

She cannot be discharged unless a suitable care package has been put in place. However, hospital doctors and adminstrators want people like her out of hospital asap, as they need the bed.

My experience is that they will use every possible wile to get an old person out of hospital, regardless of their ability to cope and when they do not cope, refuse to let them come back into hospital. At times like this the only way to get a satisfactory discharge is eternal vigilence, which is mentally, physically and emotionally exhausting. Anyone who manages to avoid ever being in a situation like yours is very lucky.

Yes were hoping a change of place will be just what she needs. She is in a first floor flat with a chairlift, but she knows she wouldn't be able to use it yet, I think that's part of the problemon, she feels isolated and doesn't want to be alone during the night.She is adamant she doesn't want to move, but she may have to if she wants to stay in her home town.

As inconvenient as 12 miles away may be, a different rehab may = a different result. Fingers crossed. You must both be exhausted by it all

If she insists on coming home unwell and dizzy she will need to live without stairs. Severe vertigo she'd be helpless on a stair lift.

She needs a walking frame and instruction not to stand up suddenly. She needs to drink water and advised how to get it down her, as water drinking can be boring.

Thank you for replying it's so difficult negotiating everything I've never been included in any meetings.The Dr asked to see me yesterday at the hospital, were he was trying to persuade mum to go home again, I'm sure if I hadn't been there they would have.I put my foot down and told them she has already tried twice in 9 days and hasn't felt well enough.She's been sent to another rehabilitation place today, but it's 12 mile away, hope they can help her regain some strength and she can come home soon.

Katyj It sounds terrible. My mum was in rehab for a long time and had the best support. Are you having team meetings?These were organised in mum's hospital. Everyone,me, mum, physio's, doctor, consultant, nursing staff and social worker were invited to attend and gave their opinion about what the next step would be. It was very useful and somewhere I could ask questions about things. If you haven't had one could you suggest to her medical staff that they call one? It sounds like your mum needs a support and care package and the social worker could do this. Good luck and hope things improve.

Sorry to hear that! Sounds so frustrating x

My gut instinct was right my poor mum came home for three hours yesterday, the physio called in to see her and deemed her too ill to be at home,and called an ambulance, she's now in hospital, and I've just had a call to say their going to discharge her today either home again or rehabilitaion. Just seem to be going around in circles.I'm not happy with her at home unless she's made a miraculous recovery overnight !

Thank you notananI've never heard of a fall cafe, I'll look into that.she has been told to be careful when standing, as you say sitting for a few minutes first. I'll get in touch with her own gp when she gets home although to be honest I don't rate them either.

There certainly are things that can be done for postural hypotension. Not least coping strategies and referrals to fall cafes. Caffine can help. Regular medication reviews can help. Planning for night time toilet trips and getting up in the morning so it allows her to sit on the edge of the bed for 3 mins before standing without being "caught short".

This is literally what rehab is for! Postural hypotension is their bread and butter! How can they not suggest strategies and follow ups?

TBF they sound a bit useless. I would go home and go see my GP instead

Hi just an update.Their sending her home on Tuesday, they've said is postural hypotension and theirs nothing more that can be done, a pacemaker won't help.Carers will be going in three times a day, but she's already said they won't be welcome if their rubbish.She was offered carers for my dad, but after two weeks declared they were no good and looked after him herself for the next 25 years ! .I'm going to buy a hard hat.

Hi Katyjmymum was in sheletred housing which I have to say was a life-saver for her in many ways. She had multiple medical problems and her hip was one of the few things she managed not to break. She would sometimes pass out if she stood for too long, although I must admitt it was also very convenient for her when she was asked to queue- "I can't stand if I have to I will pass out. You must see to me immediately!" We never really knew why her BP was so strange and I don't think the doctors did either. Hope you get something sorted.

Has she got a lifeline pendant? LA will supply these.

Hi, Trisher.Talking with my mum last night the Dr still hasn't been to see her, they have promised to ring me today.Did your mum live independently with her problem bp, was it always unstable ? Mum seems to think hers will always be like this now, and she still doesn't want a pacemaker ?

My mother had BP problems which no one seemed to be able to deal with. Basically she could and did lose consciousness briefly. Fortunately she was able to tell when it was going to happen and tried to be somewhere safe. She lived to be 94.

Just make sure she has a personal alarm, and wears it. Then if she does fall or have a dizzy spell she can quickly call for help.

I am with her, I would be demanding to be sent home. If she knows the risks and is fully mental aware then you must respect them, despite the dangers.

An ECG will not show dizzy spells/drops. They are done lying down.

Rehab should have been doing "lying and standing BPs" these last 5 weeks. Thats what shows the kind of dips that cause dizziness and falls.

When she first went in they said the usual stay is 2 to 4 weeks but some have been in there months Is it really okay though to send her home feeling unwell and dizzy, they said careers would come in 3 times a day for up to half an hour each time, there's still a lot of time she'll be on her own.

Probably might be a good idea to try and persuade her to have the pacemaker fitted - it could sort everything out and she will be safer at home. As Teetime said they probably need the bed so will want her home as soon as possible, 5 weeks is a long time - my mum was only in 4.

I should think they probably want and need to get her home asap and that should be Ok with proper community support. Of course she can discharge herself any time she likes.