Hi @Boyce73 lesley,my advice take down the contacts of every person present I had a MDT meeting at the rehab hospital I was at I was moved to a nursing home against my wishes,where my rehab unless I’ve paid for it came to a grinding halt.i have no contact with the ICB and the care home couldn’t care less about my needs as long as the NHS is paying for my keep.
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Hi David.
Thank you for your message.
2 weeks ago the plan was to send him to a rehab and thereafter he would likely need 24 hour care.
He has not really been engaging with the therapy team at all. He won’t do the physio. I am now wondering if at this mdt they will say ‘no point’ rehab as he won’t engage and straight to care home.
They’ve already placed a dnr on him and a ceiling for treatment. Only antibiotics, oxygen via face mask or nasal. Fluids. That’s his ceiling.
I just feel for him in all of this.
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Hi.
Yes I will.
I was told 2 weeks ago he will need 24 hour care. They were going to send him to rehab first. I’m wondering if this plan has changed as he refuses to do physio. It’s all about money and if he won’t engage then they may well think he’s not worth investing in. Of course this is just me surmising. He will ultimately end up in a nursing home I believe
Hello Lesley - I have followed your story from the start and have shared my thoughts with you. It’s never easy since each case and each person is different, but we can try to take some pointers which hopefully will help us toward making the best choices for our loved one.
My belief is never say no and never accept no in situations like this, however, if the person saying no is the person who we are looking out for then we have to listen. This is the only time I would make an exception as another of my belief is we have to do what the person we are looking after wants, within reason.
I don’t have fist hand knowledge of your ex and so I cannot definitively say one thing or another, but as far as I can tell and from what you have shared and what I have understood (and I am not saying I have a full understanding of this case), I feel the time now is think about exactly what your ex wants to do now and how best to help him towards that.
I am going to try to summarise based on my undestanding
- His condition is severe - the doctors/care team have shared their thoughts and they are suggesting “palliative” i.e. keeping him comfortable with 24 hour care support required.
- As per above any rehab, physio etc. would almost certainly be not on offer - this sadly, as you have already noted, does come down to money and they won’t see this as money well spent.
- Your ex is refusing or unable to accept the help offered wrt rehab/physio. This will only steer the team towards “palliative” and you have explained ceilings have already been set. Whilst these can always be challenged and overturned, they would have to come from your ex i.e. your ex would have to be seen to be fighting for his corner rather than what family/friends would like or even what he himself might have liked but is no longer able to show willing.
This is sadly the reality of it all.
I note that myself and others have said (or may have said) fight/don’t accept no etc. This only works if it is what your ex wants. I will use @Mich-mm as an example. Michelle is saying these sort of things, but the difference here is she is saying it (though she may not have been listened to) but it is very much an important consideration in this. Michelle et al wanted to fight on and were able to demonstrate their willing and this is what kept them going and led to the recoveries they made.
Please don’t think I am suggesting your ex can’t do the same. I truly believe he can (and I am sure others on this forum would support that view) but he has to want do do it and he has to show willing. Refusing rehab is not going to help his case.
One other thing, is the timing of all of this.
We all recover at different rates, but as you will have seen, the doctors and nursing teams don’t work that way - they have set timescales. Almost from the word go, they are working toward a discharge from their care and that is all they will be focused on. For that reason, the patient has to show willing and progress to be offered the sort of help you would hope for and which in an ideal world everyone would get. We do not live in an ideal world 
These just my thoughts and they may sound unsympathetic, or harsh but they are mean to offer help and set realistic expectations.
Please take on board the advice and suggestions as you prepare for the MDT meeting and stay calm and focused. Take notes, especially if you have disagreed on anything. And try to remember it is your ex’s interests and on-going care that is most important.
I wish you and your ex all the best.
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Hi.
Thank you for the message.
If the truth be told, if it was about his wishes or best interests he would not be here. That may sound harsh but in my opinion it is the truth.
Unfortunately he does not have an LPA and I could only tell his NOK what his wishes were verbally. It was something we had both discussed many times. The NOK chose to not go with what I had told her.
Unfortunately before this he had major surgeries in the past and has never been ‘ the best patient’ or had the will.
I don’t think he will fight to try to recover, that’s not his nature even without the damage from the stroke.
I have only ever had his best interests at heart from the day this happened.
I feel it will be out of my hands and hard to try and change anyone’s minds when I have witnessed day after day him refusing meds, refusing physio, throwing the bed covers off, lashing out at nurses trying to do his observations.
I just feel he now gets to exist like this when I know in my heart this is not something he would have wanted. He would be devastated if he understood how he is now. He was a very clean, proud and dignified man. Not violent in the slightest very gentle tactile man.
I will attend the meeting and do my best for him. After that there is not much more I can do. That’s how I feel at this point.
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I feel a bit awkward commenting on this as I don’t have first hand knowledge and I am going by similarities between your situation, what happened when my Mum was in a similar situation to your ex and what other contributors on this forum have said, but I feel if we (contributors to this forum) share our experiences, maybe others can "learn or benefit without necessarily having to go through some of the pain themselves.
And so going by your comment about your ex not fighting to try to recover, I personally see this as his way of expressing his current wishes. I feel that his brain/body are communicating to us, but perhaps we are unable to understand or accept what we are seeing/hearing, perhaps because of what we think might be the situation now.
This is a very difficult time for us (the carers / loved ones) and we are “helpless”. Whilst we may not like it, it has come to a stage when decisions will be made by the medical / professionals and they will be acting in the best interest of the patient. This has already been flagged by some of the things they have down e.g. the ceilings, DNR etc. Whilst we can push back, equally they may well also push back and ultimately, this will come down to a “team decision”.
I wish you all the best and I am sure you will continue to do your best for your ex as you have been doing from the start.
Stay strong and know you have done your best and more than that you cannot do.
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It sounds that he has very much given up. He has obviously convinced himself that no recovery is possible and he hasn’t got the strength to go on.
Yes, the people currently treating him will be thinking there’s no point in providing further rehab if he is not engaging, but if in he’s in more of a rehab setting and he has more rehab and sees other patients recovering it might make a difference. Without this, he will remain as he is and go backwards.
At the CHC meeting push for him to be given a chance to come back from what has happened to him. Don’t let them tell you he has no rehabilitation potential. Say that as well as being better for him it will be cheaper in the long run, particularly for the NHS, if he has more rehab and it will reduce the cost of whatever ongoing care support he needs.
In the past, as a social worker working with stroke patients on hospital wards I have had to battle for more disabled survivors to have more rehab. Recovery, any recovery, requires time and continuous rehabilitative therapy.
I hope the CHC meeting sees sense.
Take care
David
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Hello Lesley @Boyce73,
My own experience of stroke taught me to NOT take everything you are told by hospital staff as gospel, because improvements DO occur, often against all the odds. I was told I’d never walk or talk again, but with extensive (and costly)therapies, I did begin to speak and swallow again, and eventually actually walk again, albeit with sticks. And here I am 5 years later and still slowly improving.
So, please don’t give up hope ! But brace yourself for possible long-term problems.
All the best for your ex’s future recovery and look after yourself !
Bob
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@bob.isle and @Boyce73 I was also told:”you won’t walk” and “you probably won’t speak again, and “you’ll spend the rest of your life staring at the ceiling “ those so called health professionals can go to hell!yes my life is very different and i rarely experience joy.but their are occasions,i recently went out for the luminescence concert at Westminster Cathedral.that was utter joy!we stroke survivors are human beings and talking and walking are human facets,we can and we WILL!
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Warning to anyone reading this …
This is an extremely sensitive topic and what I am about to say are my personal thoughts which some of you reading this may not agree with and indeed feel strongly about. That is totally fine as we can and do think differently on matters.
I am responding to the original poster @Boyce73 and to comments by @Mich-mm, @bob.isle and @DavidHearnden and I am thinking only of the person who is affected most by this and who is not here to represent themselves - Boyce73’s ex.
Please do not read this if you might get upset or take offence - these are my views based on my experiences and as a carer, I have personally done this or would do this for the loved one I care for.
We are all different and so are are views and thoughts.
Final warning - only read this if you accept I have a right to share my thoughts on this topic.
Only click here if you have read the above warning and accept what it says
I think we all agree in principle on all things including not accepting what the doctors tell us as gospel and there is always potential.
For me, the biggest challenge we are facing here how to advocate for the patient.
I am taking this as the ex here unable to communicate his wishes. I don’t believe @Boyce73 has
- had any confirmation or indication from the ex as to what he wants now
- confirmation he understands his current condition and what he wishes to do (we know he knows, but has he been able to communicate this)? Going by his actions, perhaps we can conclude as @DavidHearnden has said that he has “very much given up”.
- Given we believe he knows what has happened and is indicting (by his actions) he does not wish to continue, should this be respected?
I know this is all difficult, but I am trying to see it from the ex’s perspective and if he is making a choice, should we be respecting that.
My question to Bob and Michelle (@bob.isle and @Mich-mm ) is when you were in this situation, which you both say you were
- how did you communicate this (your wishes to fight on)?
- to whom did you communicate this?
- how did you behave? Did your behaviour suggest you had given up (which might be something we conclude with the behaviour of the ex here) or did you show fight?
This is important to establish, because to me what Bob and Michelle are saying is that it was their wish and they did not believe or accept there was no hope for recovery.
Can we say the same about the ex?
Of course I am not suggesting we “give up on him” - absolutely not, in my view, but we have to accept his wishes.
We don’t know the full history (medical) of the ex and what other medical conditions there may be that would affect the overall quality of life.
Please don’t get me wrong here - I have been through this and we fought long and hard for Mum, but we had
- established what she wanted to do (just like Bob and Michelle, she wanted to carry on living)
- she showed willing (despite the fact we was not given many opportunities to do that).
The for us in our fight was to get Mum to show willing and it was only after that the medical team started to offer some help - but by then some damage had already been done.
To summarise
- I think we need to ascertain from the ex what he wants to now
- Get him to acknowledge this and then demonstrate to the MDT
- He will fight but only if he wants to and he will do it in his way.
Life is worth living, but you need to want to live it.
The only person who really knows what they would do now is the ex, and right now he is not here to tell us or if he is telling us, we may not be understanding him.
Writing this and choosing to respond has been one of the most difficult things I have chosen to do in recent days, but I feel I must share my experiences if I am to be an active member of this forum. I am so sorry if I sound cold and heartless, but I am saying this having been through this with Mum and also having seen what has happened to other patients in the time Mum has been in care and visiting the stroke unit for follow-ups. I have experienced the difficulties, the pain and the pushbacks and if by sharing my experiences, others might not have to experience the same, then more than that I cannot ask.
I have also experienced some tremendous joy and happiness as a result of the decisions we have made on behalf of Mum as we have had to advocate for Mum after the stroke robbed her of the ability to communicate in the traditional manner.
I hope everyone involved in the MDT meeting has clarity of mind and are able to act as advocates in the best interests of the ex.
I wish for the best outcome for Boyce73’s ex.
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what do you mean by the above statement?
Hi David
Thank you very much for the explanation and advice.
It is most appreciated.
Can I just say that Lesley said that her ex.“had suffered a massive stroke. Please help” and I do not think a public spat is going to help: I was only trying to help when I posted to Lesley and encourage her. If I said anything out of order, I apologise unreservedly. The poor lady is an awful situation and has my deepest sympathies, but I am not ready to be cross-examined in a public forum. I do not do religion, as I have said before, but I fervently wish Lesley and her ex. a happy outcome from a terrible situation,and I’ll comment no further. Bob Isle.
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Bob - What’s going on here?
What makes you think there is a spat or some sort of public cross-examination going on? Who do you think is having a spat and who do you think is being cross-examined?
Please be assured, there is no spat or cross-examination going on here that I see.
As far as I can tell, everyone who has responded to Lesley’s post are doing their best to help her. No body is arguing or cross-examining. If questions are being asked it is to try to find out how Lesley can be helped.
If you feel you are being cross-examined then I am sorry you feel that way, but I can assure you it is not my intention, nor do I think it is anyone else’s intention to cross-examine. Questions are asked to understand how an outcome was achieved. And so when I ask you and Michelle how you did it, it is with a view to learning from your experience and then to see if Lesley or others can use the same to help her ex.
Once again, there is no spat or cross examination that I am aware of and I don’t doubt for one second that we all would like for Lesley to benefit from our input.
Jim
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Hi Bob.
Thank you for all of your kind words.
I personally don’t do religion and I am also looking to not be cross examined. Like you said, I came here looking for help and not to be judged.
I’m not saying anyone has judged me and especially not you.
It’s been so hard and some comments have been extremely helpful and insightful, including yours
I’m sorry you have been made to feel this way.
Please know I am personally grateful for your input.
Take care
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Thanks. If you feel inclined, please let me know how the meeting goes. If the outcome is not what your ex / you want, I can help with an appeal. Kind regards - David
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@Boyce73 its me again!you are possibly tired of hearing from me,but you said something very profound and important above.About 15% of hemorrhagic stroke patients do not survive long enough to reach the hospital.He is still alive despite craniotomy and haemorrhaging so that tells me is a very strong person,he hasn’t given up and that’s the most important part of all this,he may not be engaging in rehab/physio because he just isn’t able to.one thing I will tell you is that a few weeks in a medically induced coma and subsequently PDOC caused my leg muscles,tendons and ligaments to contract reversing my chances of walking.i had to have surgery to lengthen my tendons,but I should have been given the opportunity to cycle as soon as I came round or emerged.but it was 44 months after my stroke that I was given the opportunity to cycle. If you are wondering there is a cycling machine called a motomed for wheelchair users.
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