How to deal with hospitals and occupational therapists

I have writtten on here many times about my 102 year old mother and the dreadful difficulties I have encountered so I won’t bore you again they are available to read if you search my threads

This particular comment is about hospitalisation, occupational therapists and social services. So many times my mother who lives alone with 5 care calls a day falls or just because she had dropped her fork or has a slight twinge presses her Lifeline button. Alone this week it has happened 6 times. Each time I am rung and my answer is now always the same - you try and stop her doing it because she won’t listen to anything I say. Each time this happens Life line organise a paramedic and mobilise an ambulance for her at a huge finance and resource cost to the ambulance service and NHS.

2 weeks ago she did unfortunately fall (she has been told on so many occasions by medical professionals, social service etc. that she is not to get up and try to walk around but to wait for a carer to call. Unfortunately this does mean that when she needs the bathroom she is unable to get there and has an accident - she wears special pants to cope with this but still refuses to heed any advice. She was told at the time she went back home that this would have to be one of the trade offs she would have to accept. When the medics arrived she told them she banged her head (which she always says even if untrue) and yet again they take her off to hospital. They scan her and because of the time of day keep her overnight and the next day I get the usual chirpy call from the OT saying oh your mother is transferring well and mobilising, she is able to walk with her zimmer, is fully aware of her surroundings so we are discharging her because this is really not the place for an 102 year old lady. As usual I liaise with hospital transport so that I am there to let her in etc. I have always tried to be as helpful as possible and assist even though my mother and I have a toxic relationship. She duly arrived back home, she was semi-comatose, could not even sit up let alone stand and as to walk well that was just a pure fabrication. Because of the layout of her large Victorian flat it is impossible to get a standard wheelchair into her kitchen where she spends all of her time and she refused to go to bed. So in the same old way as ever the chair she sits in is pushed to the kitchen door and even two strong ambulance personnel had major problems getting her out of the wheelchair and into the armchair - they both said they had real problems getting her into the ambulance. Their next comment was we really don’t like leaving her her here like this but there is nothing we can do and left. At which point I had to somehow push the chair and her (half in and half out) back to the place where it lives. In retrospect I should have refused to let her stay and insist it wa an unsafe discharge and they return her to hospital - hindsight is a wonderful thing.

I called her care agency (which are paid for by the local authority) who said we can’t get anyone there we have no staff (plus the fact she has been so nasty to most of them they refuse to do any of her calls now) so I was stuck there until her next regular call in 2 hours time. She was completely out of it, rambling, did not know where she was, reaching out to pick things up in midair and many other actions seen only too well by myself many times before.

I have been asking for a SS review for 2 years now as I keep saying things have changed massively. She did have yet a further very poor assessment in March 2021 as in what is your name, where were you born, date of birth, queen name, date WW2 ended - a very thorough assessment on which yet again, it was decided that she had capacity to make her own decision as to where she lived. For 6 months during lockdown she was in a nursing home as she had been discharged to assess and got caught up in lockdown. For those 6 month she looked well kempt, washed, clean and generally in a much better state but when SS finally decided it was safe for them to enter the nursing home she had this pathetic assessment and of course she said she wanted to go back home. She was told then that there would be limitations to the service she could receive and she said I agree with all of that but of course she does not and expects someone to be at her beck and call all the time.

The point to my ramblings are do not, under any circumstances, co-operate with SS, OTs etc. As soon as they realise that there is someone who is willing to take on responsibility (However small that may be) they tick their box and discharge. I have been doing this for 10 years now and despite official complaints (which have been upheld and the most useless of apologetic letters sent to me) absolutely nothing has changed. When will someone in authority finally have the guts to stand up and say there is a problem with this lady, she does not have any joined up capacity to make a decision on where she lives, she is unsafe at home and costing social care an absolutely fortune - with her constant lifeline call outs and 5 care calls a day it’s costing far more then to keep her in a nursing home. No they are absolutely scared to death that if they make that decision and apply to the Courts they will be prosecuted - by whom I don’t know as I am her only daughter and completely agree with this course of action. Please don’t get me wrong I am not trying to push her into a nursing home to get rid of a problem, I genuinely want what is best for her -I would fight tooth and nail if I felt she was the victim of discrimination or unfair practice etc. but I honestly do not feel this is the best way for her to live at her age (she is 103 inAugust). To argue constantly with carers, sit in her own excrement just because she is stubborn. She has recently succeeded in getting rid of another carer - her comment to the care agency manager - you see I always get my own way in the end now the agency are really struggling to get anyone to do her late afternoon/bedtime calls simply because they do not have as many carers who work at that time of day and those that do won’t go into the house.

Sadly this time because of the trauma and distress caused I ended up in hospital for a week even though I had made massive strides via therapy over the last 12 months. Also sadly whilst in hospital because of the meds I had been given I fell in the bathroom even after begging that someone help me there and back but that’s a whole other story.

So please if you value yourself, your family and anything you hold dear when “the authorities” ask if you can be there to let them in and settle her, or OT chirp merrily oh she is marvellous for a 102 and mobilising so well. Just say no, there is no one available to assist she is in your care you organise her rehabilitation and return home, you try to liaise with SS (if you can actually contact anyone, in our area we have to go through a contact centre and if you are lucky someone might contact you 2 weeks later). I know this sound very hard and harsh but I know that mentally I will never be the same again, my only daughter very rarely speaks to me now. My husband is wonderful but he is 91 and has a serious spine problem so is able to help to a limited degree. Please think about yourself first and don’t let this happen to you, you only get one go at life, make it your life first and help as much as you are able but don’t let the authorities use you as a solution to their shortcomings and underfunding.

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So sorry to hear this. Could you not get a GP referral for her into a home? speak with GP or district nurse to get it set up, but I’m not sure if she has any choice in the matter or not. It is worth a discussion with the GP.

I have been there a few times with the OT telling lies and due to covid lockdowns you cannot go there and see for yourself. We had an unsafe discharge and reported it and a short while later my mum was back again and I had the same OT all chirpy on the phone, I told her I didn’t believe her last time and it was an unsafe discharge and told her what I thought of her and her unsafe discharges and that she should be telling the truth this time or I will see to it that she is struck off.

In hindsight, the unsafe discharge, she said hospital transport because she is unable to get into a car - I queried that over and again and said she’s not safe to come home then, but the wool was yanked over my eyes. What I didn’t twig was they set up a homesafe(?) team to do a couple of daily visits, in hindsight that says she should not have been discharged, it is a contradiction of what the OT is saying.
The homesafe team also reported the unsafe discharge.

They spin their yarn about mobility and then about the homesafe(?) team like they are doing you a favour. No they aren’t - they are doing themselves a favour by getting the patient off their hands.

Thus all subsequent times I have stated the above and asked if they are telling the Gods honest truth because they don’t want to be struck off for unsafe discharges and malpractices.

Breezy - thank you so much for responding and letting me know of your experiences. I have tried time and time again over the past 5 years especially to get her GP to see how bad things really are. To be fair to them they have now put her on the lowest level of the palliative care pathway (because of her age and frailty - although ironically they sent out emergency meds to be kept in her home consisting of ampoules of morphine, anti sickness etc - everything to do with cancer. It seems that these things are put in place but without any communication or thought, it all just an automatic process, yes this has been actioned now we need to do that, no one seems to communicate or give it any thought at all - she’s old and frail but doesn’t actually need morphine meds - is all just a tick box system) so I now have access to Hospice at Home nurses and the community nurses. Big problem here is that when you do ring them despite their promises they always say there is nothing they can do. Her GP is a permanent member of the practice but actually lives in Spain so any contact with him is always via FaceTime or Zoom. At 102 my mother doesn’t understand any of this. His view is she is 102 and the best and happiest place for her is in her own home. To be honest she has not seen an actual GP in her home for over 5 years now. Social Services are a massive stumbling block I have tried yet again this week to get a re-assessment but when (and if) I ever hear back from them is anyone’s guess. But having been there so many many times they will say it is her choice as to where she wants to live - as I said no one in authority has the guts to stand up and say this very elderly vulnerable lady is not safe in her own home even with numerous care calls a day and we need to do something about it. My only option from now on is just to refuse to assist and as I said I shall tell them she is currently in your care and your responsibility you organise returning her to her home and ensuring that she is safe. Your reply was much appreciated even knowing there is one other person out there who has exactly the same problems makes me feel that I am not the only one trying so desperately hard to do the right thing and failing every time.

If the GP is classing her as “end of life” then has he arranged NHS Continuing Healthcare for her too? All the care she needs free of charge, either in a nursing home OR HER OWN HOME.

Bowling Bun she has only been classed as end of life due to age and fragility. She has no real physical health problems that cause her difficulties only the fact that her mobility is now almost non-existent and that is due to the fact that when she broke her second hip in 2019 she refused to do any physio unless it was provided when and how she wanted it - ie not now I’m tired but come back in an hour and I’ll do something. Its just so that she can get a little extra help from Hospice@Home and the Community Nurses which as I said the one and only time I tried to get the help I was told there’s nothing we can do. As to continuing health care we can forget that as according them them there really is nothing seriously wrong with her, she has no serious medical problems or nursing needs. Honestly if I were not so worn out by it all I’d write a book because seriously you couldn’t make it up better!

No, not CHC then, I’m just really concerned for you piggy in the middle of it all.
At one stage all four parents and son all entitled to highest DLA. Four died, and then my husband died of a heart attack at 58.
I’ll always blame caring.

Bowling Bun I absolutely agree with you. You had it much worse than me with 5 of your family to have to deal with and I admire your strength and fortitude. I too blame the care system, social services and basically any Government (its departments) the NHS and any other institution involved. There is a lot of talk but never any action. No one really cares they just want to get the problem off of their hands any way they can. Its a shame they do not see the harm that ripples out to the people trying to help their families and the impact it inevitably has on their mental health. Even trying to talk to your GP about it and the effect it is having on yourself personally is a joke - last time I tried I was told I may be able to get an appointment in 7 weeks. The system is irretrievably broken and I don’t think I will ever see any changes in my lifetime. The only thing I can do is to ensure that when I get to any stage of needing help (I am now 69) I have enough financially to at least be able to choose for myself what I want to happen. Take care.

Blimey Fluffy, the system has loose ends, it’s an open loop system by the looks of it by means of vertical silos that apparently do not speak to each other.

Soc Svs should be doing a needs assessment for your mother and for you- how it affects you giving care in terms of health and stress.

Have you tried speaking with your local councillor? If they can get any sense out of them?

Your mothers doctor lives in Spain? how on earth…how does that work? is that even legal?
How can they be a local doctor from Europe? Is that even ethical? Practising British medicine from a foreign country? it beggars belief.

You sound absolutely exasperated Fluffy and I am not surprised. Please take care of yourself.

Please try your mums local councillor(s), do a list first of
-the rigmarole/circles with the authorities - soc svcs, hospital, GP etc
-your mothers capabilities, her limitations and her health and her Dr lives in Spain

Your mother may be medically sound but physically she is not able to look after herself or care for herself, thus she needs care. This is not an exhaustive list, do your list as required.

Hospital position is xxx
Occ Therapists xxx
Soc Svs xxx
Hospice at home xxx
Her doctors xxxx and her GP lives in Spain…

My mum is:-
medically well for her age/has xxx
eyesight is
hearing is
memory is

She has xxx:-
list medical issues or tablets and reasons

list her abilities and limitations
getting drinks/snacks/meals
dispensing medications - reading the packs, taking the right meds and doses at the right time

My position as her daughter is xxxxx xxxxx eg how it is affecting you and your health is at risk.

I wish I could do more to help but this is beyond my experience and knowledge.

I hope I am not teaching you to suck eggs, but sometimes doing headings and bullet points of the situation can help with clarity on the situation and focus on galvanising the organisations involved and/or introduction to new parties eg councillor.

So get this muddled vertical silo organisations mess down in bullet points and into a cohesive order and take it from there with your mums councillor and wherever else this leads you eg hospital, Soc Svs and GP.

I hope the loop gets closed soon and your mother gets the care that she needs.