Welcome to our community. I am sorry to read of your problems, which are not uncommon, sadly; but the good news (if you can call it that) is that things do tend to improve, albeit slowly. My stroke was quite similar to your ex’s by the sound of it. It affected my hearing, sight, continence, I could not speak, was tube -fed and in hospital 5 months. Now, over 5 years later, I can speak again and walk (with sticks), my weight has recovered and I have worked extremely hard on physio. and my incontinence issues are over.
An issue you have not mentioned - is there a Power of Attorney in place? Obviously we cannot discuss your ex’s financial situation in detail on this public platform but you may need to consult a good family lawyer, because strokes cause immense financial damage, as well as the physical stuff. and if your ex’s sister or Mum cause any serious difficulty you you may be able to refer to the Office of the Public Guardian. (but beware: they charge huge fees!)
I salute you for caring for your ex. so much and wish you well in the future.
@Boyce73 lesley I’m keen to know how he’s doing.at about his stage i had a shunt inserted in my brain to drain cerebrospinal fluid from my brain back into my body.this is when I fell into PDOC (prolonged disorder of consciousness)
i have had a lengthy chat with his consultant and it was somewhat reassuring to know that is all about his best interests. She listened to what I had to say and made notes. She wanted to speak to his nok but she would not attend for a meeting as she was ‘too busy’.
I’m trying to look after myself however, I find if I don’t go to the hospital to see him, I feel guilty as I know no one else will go.
I have tried to get his sister to visit more as well as extended family but it seems no one is going. It’s very hard to understand as he most certainly wasn’t and isn’t a bad person.
I am pleased that you have and still are recovering.
My ex didn’t have much. I do speak with his family as they want updates on how he is doing from me. I haven’t shared my frustrations with them.
My main purpose is to support my ex. I work full time and it is getting very difficult.
I understand having support is an important part of recovery. I only hope my support alone will be enough.
I’ve spoken with a social worker and a consultant about his care.
I know he has a really long road. He is 7 weeks post surgery. Eating a little himself with support. It’s very early days but I have been told to be a realist about his future.
He is 7 weeks post craniotomy. He is feeding himself soft food (when the nurses actually read the speech and language instructions). He is refusing physio most days
He is not really drinking and not eating enough to sustain living on just food alone. I think a peg is being discussed.
He can have 4 moods in an hour. Trying to talk and only mumbling which leads him to bad frustration and anger and then tears. There maybe some pain but he can’t express this. All understandable. He’s in hospital but ‘medically fit’ waiting for a place at rehab.
The nurses asked yesterday if more family could visit to help lift his mood. Unfortunately his sister said she cannot do more than her hour visit on a Sunday and his extended family won’t be visiting. His eldest sister hasn’t bothered in 7 weeks.
I find it most strange as he is not a bad person. Liked his own company and rarely visited anyone but is that a good enough reason for his family not to give an hour to show up?
The visit thing is more about themselves than about him. They fear to be reminded of their own mortality. They feel they don’t know what to say or do so they choose to say and do nothing. I’m not excusing, just explaining. Since I came home, many friends have visited or got in touch, but just as many haven’t, even those living close by as in walking distance. So it isn’t just him and it isn’t just them. Hard to deal with, but that’s people for you.
Hello @ Boyce73,
Yes, sadly many people bury their heads in the sand due to their own feelings of inability to help in such serious cases, squeamishness, or embarrassment, or whatever. All a bit selfish of course but quite common. @Dexster is quite right- that’s people for you!
I wish you all the best for the future, but remember it is a long road and you must look after yourself.
Regards.
Bob Isle.
You’re welcome Lesley,
A lengthy chat with his consultant sounds like a win to me, a major win. If you wanted to take that one step further you could put those points that you discussed in writing Which you could then email the consultant. That matters legally and clinically, because under the Mental Capacity Act, decision-makers must consult those close to the patient about what he would have wanted.
Your devotion to him, and love, impresses. But it miust be very disorienting for you … You are not just caring for a body in a bed you are mourning a person who is still alive. If the ward has a clinical psychologist it would be very useful for you. Good luck,
I do agree with you to an extent, and I think fear, not knowing what to say, and finding it all too difficult can definitely play a part. I suppose I just feel that it isn’t always the case, and every family situation is different. Sometimes there are other reasons behind people’s choices and, unfortunately, sometimes people simply choose not to be involved.
I’m certainly not judging anyone for finding it difficult — I can completely understand how confronting something like this can be. I think I’m just finding it particularly hard because I’ve been there so consistently and have seen how much he has changed, so it’s difficult to understand when people who are much closer to him don’t seem to want to be involved. But I do appreciate your perspective, and you’re right that it’s certainly not unique to my situation
This is an excellent comment and it is surprising how often this happens. I think it happens much more than one might first suspect and as sad as it is, there is very little you can do about it. Friends and family who were once as thick as thieves keep their distance and we must carry on. If there is any consolation, you can (and do) make new friends, though of course you cannot “make” new relatives.
My work have been really supportive. In the first few weeks I was given special leave (days off) and was then allowed to leave half day for another week. They have been very good if I need to go to meetings during work hours.
My job will facilitate carers leave, special leave, compassionate leave. These are more days given rather than an extended period.
I’m back to work full time and just visit when I can. I have come to realise it’s impossible to be there all of the time and to not beat myself up. I’m trying my best and that’s all that matters.
Hello Lesley - What is the purpose of this meeting and who has organised it?
To prepare for it is a must and so it’s great that you are doing this.
The primary objective is to ensure the patient (your ex) is well represented and his views are known. It’s been a long time since we attended an MDT meeting but I remember we were being steered in a particular direction that was not in the best interests of Mum i.e. the medical team who had called the meeting wanted us to agree to the discharge an care plan they had formulated without consulting us beforehand.
If the meeting is about discharge and on-going care there are things you should look at For example, if the meeting is the NHS Continuing Healthcare (CHC) Multi-Disciplinary Team (MDT) meeting, then they will be using the Decision Support Tool (DST) which will then effectively lead to the type of care your ex will get.
You may wish to check on the details of the meeting and if the DST is to be used, get a copy of it or have a look here
As well as that, depending on where your ex will be cared for and how involved the family and you will be in is day-to-day care should be thought about. The doctors may suggest how difficult it might be to care for your ex. We were told it would be very difficult to care for Mum at home due to the perceived care needs. We chose not to follow their advice because we had already committed to Mum being cared for at home as this was her wish.
Main thing to remember is the patients interests are priority #1.
Have realistic expectations - taking on care responsibilities may not be easy as it may take a lot of time, commitment and shared support. If the care needs are high (and I suspect they will be for your ex in the early days) then one person may struggle to cope even with third party carers coming up to four times a day.
Do not be rushed into making decisions
If you do not agree with anything at the meeting - put it on record.
It may not be obvious, but we found it was a “them” vs “us” at the meeting. They (the medical team) supported each other to the hilt even when they should not have. They will act as a team and they will be looking for their desired outcome (sorry if this sounds cynical, but that’s how it was for us). So when you push back they will push back and you will have to stand your corner.
EVERYBODY will have their OWN agenda and it will not necessarily be in the best interest of your ex (the patient) regardless of what they tell you (sorry if this sounds cynical)
Social services may be involved - again, they will be looking out for themselves (tick boxes)
You and the family must be as one to act for your ex (I am assuming your ex may not be attending the meeting unless something has changed).
Be cynical - don’t take anything at face value
My top tip - please do not allow you to be pushed into a corner.
They cannot discharge your ex until you (your ex) agree. If he is not ready then an early discharge would be a risk not worth taking.
These are my thoughts and it is likely others with different experiences to us will have their views. You must gather all the information you can, get the advice you can and then ultimately decide what is going to be in the best interest of your ex.
I mentioned social services above. We had a bad experience with social services from start to finish. That said, since then we have met a member on this forum who is both a stroke survivor and a social worker. He is very helpful and I am tagging him here in case you wish to pick his brain - David Hearnden @DavidHearnden is his name.
Wherever your ex (sorry, what’s his name?) is discharged to he is going to need ongoing intensive rehabilitation to make the best recovery possible. Get details of what is on offer.
The meeting next week is to decide whether he has a primary health need, in which case if he is the NHS will fund his ongoing care and rehabilitation. Eligibility is determined by the nature, intensity, complexity and unpredictability of his health and care needs. It’s very difficult to get full Continuing Health Care (CHC) funding.
If he is found not to be eligible but has ongoing nursing need then what is called Funded Nursing Care would be paid. The NHS would probably pay for the continuing rehabilitation he would need.
If he is found not to be eligible an appeal can be made on his behalf. If you go on the directgov.uk site you will find information on CHC and the Decision Support Tool which will be used to assess your ex’s eligibility.
If you want it, I’m happy to give what further help I can.
