My 82 year old father had a massive stroke 7 weeks ago leaving him paralysed, unable to swallow feed, little ability to speak, and with significant brain damage. He has had repeated pneumonia which has caused lung damage and weakened him further. He is currently on a stroke rehabilitation ward in hospital but has been moved to palliative care / end of life care and they have said he life expectancy is up to 3 months and he is being fast tracked for discharge as they cannot rehabilitate him.
His quality of life is terrible. He has medication for pain and confusion/ agitation, but basically it seems there is nothing that can be done and it is about caring for him until he dies.
His care needs are too much for a return home, as she chokes and needs suction regularly and also he requires 24 hour care and pain management. He was refused a hospice place which would be our choice for him. They are talking about extra care nursing care home care for him, but I am concerned this is not suitable as they are not experts in palliative care for someone as sick as my father, and do not specialise in this area as far as I am aware.
I would be grateful for any information or shared experiences in this complex area of end of life care please. The family are so scared that the wrong decision is made and my father suffers more than he has too. It’s a horrendous situation to be in.
Welcome to the community. I am so sorry you have had cause to join us following your father’s massive stroke and subsequent prognosis.
Your situation is very difficult and you will be going through lots of emotions and possibly stress as you come to terms with lies ahead over the next few months.
Hopefully you will get some help and guidance from this forum above and beyond what you may already be getting from the healthcare team looking after your father. As I understand it, the healthcare team has determined palliative care / end of life care as the way forward as per their assessment of your fathers condition.
Firstly and importantly, I would suggest you do not take what they say as gospel - they may be right, or they may not. In our experience and that of most others who find themselves in your situation with an elderly adult, the healthcare team (I will use NHS henceforth for simplicity) does not see any value in trying to rehabilitate patients above a certain age. They will give you no encouragement or hope whatsoever. They may be right in doing so, or they may not - I do not have any statistics to support what I am saying, but we as stroke survivors or carers have to take matters in hand and take control of the situation.
To do that, you must remain positive and be prepared to challenge decisions and information that you do not agree with or that which makes no sense to you.
I don’t know how you feel about your father’s prognosis. Do you agree with the NHS or do you think with support and help your father could make some sort of recovery? Also, would he want to make that recovery or would he accept that perhaps palliative is the way to go?
Care for stroke survivors in your father’s condition is not easy to get. There are so many factors that affect this including where you live, what sort of facilities are available what you can afford etc.
Help is available (they will call it palliative) and certainly it should help to make life comfortable for your father.
Your concerns about the suitability of the “extra care nursing home’s” ability to care for your father in the way you/he would like are probably well founded. Without seeing the home I cannot say for sure and caring for your father at home would be the best option.
If it was possible to get the equipment to help care for your father at home, would you and your family be able to provide the care? We are talking 24/7 care and which will likely come with some stress ?
My mother was in a similar situation to your father. This was six years ago and today she is still in palliative care and has improved and continues to improve.
When she had the stroke, Mum was:
given little or no hope of recovery by the stroke consultant
she was put on palliative care whilst in hospital. Spent some time in acute stroke ward and then transferred to “rehab”.
Whilst in rehab little or no progress was made as she was mostly lying in bed and unable to engage with the OT/PT/SaLT etc.
The Family stayed with her all the time and tried to support and encourage her as best as we could
She as in drip for a month or so and with her being tagged as “nil-by-mouth” she had no food given to her during this time.
I don’t know exactly what the drip did apart from keeping her hydrated and possibly her electrolyte levels normal
After a month or so and with no encouragement from the NHS, we questioned why Mum was not being given any nutrition (food). We asked how she was supposed to respond to tests when she was likely to be weak having had no nutrition for over a month and lying on her back in bed all this time.
This resulted in her being put on food supplements via an NLG tube (for a month) and then onto PEG tube.
Mum started to get stronger with the feed and started to respond to some of the physio tests but the hospital was not wanting to encourage this as they had already planned her discharge from hospital a week after the stroke!
We were asked to look for care homes that would be suitable for Mum but we found none and told the hospital that Mum would not be going to a care home and it was her wish to be cared for at home - this was something that had been discussed before she had the stroke and when she was able to make her own decisions.
Home was not ready for Mum and the equipment she would need and so we had to clear out a room for her
This gave her a base but further home adaptations would be needed if she was to be properly cared for and for her to have the best quality of life she could get.
Mum was eventually discharged to care at home supported by “Care in the Community” - there were a few failed discharges i.e. she picked up infections and had to stay until they were cleared.
Family tried to keep her in hospital so she could get the physio that she needed and which she was beginning to respond to, but the hospital had other ideas and to cut a long story short they won.
Mum was conditionally discharged to be cared for at home but with all the access to equipment and support she had in the hospital - again the hospital failed to stick to their end of the bargain i.e. broke conditions such as not providing the physio apart from a token few sessions where they did some simple movements and then told us to carry on doing the same.
Once at home, that was the start of another chapter.
Just so that you know @LAHC, what I am saying is that it is possible to care for your father at home, but can you get the support you need to do it?
I am happy to follow up with Chapters 2, 3, … if required.
To an extent, you can get the care you and your father would like/deserve, but it will take courage and determination to push back and challenge all the way. You will need to develop a thick skin and you have to know when you are right (and realistic) and be prepared to take your arguments further.
Help is available, for example there are complaints procedures that can be tapped into if you are not happy. Financial help is available - means tested and non-means tested e.g. Attendance Allowance, Carers Allowance etc.
In summary, you are not alone, nor the first to experience what you are experiencing. In fact, right now there are others facing similar challenges to you and they are working towards their desired goals.
Please feel free to contact any of us on this forum if you require anything. There is usually someone who has walked in your shoes and you do not have to reinvent the wheel. But be prepared to also find that what I have available to me may not be the same as what you have available to you. This is because there are huge variances across the country and UK and when things are left to interpretation then anything can (and sadly does) happen.
@LAHC hi & welcome to the community. Really sorry to hear of your father’s stroke & the situation you now find yourself in.
@ManjiB has provided a lot of information for you & has been in a similar situation & I can’t really add much to that.
What I would say though is however desperate they are to discharge your father if would not be safe for him then you need to push back and keep telling them that. Caring for someone at home, particularly if they are end of life, is a full time job & very stressful & is not for everyone.
You could try speaking to PALS if you feel the drs aren’t listening to you & there is always your local MP if you need to raise it further.
Hope you manage to get the right outcome for you all & your father.
Welcome to the community, I’m so sorry to hear about your fathers stroke and subsequent prognosis. This must be a really difficult time for you all as a family.
I can see you’ve had a lot of advice from @ManjiB who has been in a similar situation and I’m sure there will be some others along to offer their advice too. In the meantime I would suggest giving our Stroke Support Helpline:0303 3033 100 a call. They have a wealth of information and have helped many people in similar situations with advice.
Please do make sure you look after yourself too during this time.
If you need anything whilst you’re using the Online Community, please don’t hesitate to tag me using the @ symbol and my username.
Thank you so much for the information you have all shared. It is good to hear from others.
@ManjiB can i ask how old your mother was when she had her stroke? My Dad has just turned 83 and the medical team seem to think he is so severe he will not recover. His left side is very twisted. Also he is 6 foot 3 and not easy to handle. He pulled out feeding tubes and IV’s repeatedly. The damage being done trying to reinsert these was traumatic so they decided to stop. They kept going into his lung.
He is being fed food and water by mouth now but he takes in so little. He is skin and bone now. Also it takes 2-3 nurses to care for Dad due to his size, strength and agitation. He can get aggressive now. I live over 300 miles away and I am traveling back and forward weekly when I can, but I have a daughter to care for also. My brother lives closer but is 59 and unwell so can’t care for Dad at home. They said he would need 24 intensive care and Dad’s money would run out fast as they will only pay for carers to come in 4 x day and not at night / 24 hours.
As he is palliative care they are refusing to give IV’s for fluids because of this. It feels like he is being slowly left to die. One minute I feel like he has no quality of life and is suffering so much that it would be a mercy for him if he passed away. Other times I wonder if I should fight for him until the end or whatever happens. We do not have power of attorney, so decisions are best interest by the medical team, and Dad lacks capacity and often has no idea where he is or what is happening.
I want him to be comfortable, safe, cared for and not to suffer. I fear he is not going to have this, and I am so confused about what is best for him.
@Anna_Moderator i did try and call the helpline a few times but couldn’t get through. I will try again tomorrow.
Hello @LAHC - I am happy to help you as much as I can. There are similarities between your situation and the situation we had six years ago when Mum was admitted.
Mum as 89 years old when she had the stroke.
Prior the stroke she led a healthy, happy and active life and she lived with me. Effectively, this means even though she was fully independent, I was there to help her as needed and due to her age, whilst she would not own up there were occasions when she needed things doing e.g. help with laundry, cooking etc.
As she was very healthy and apart from diabetes and possibly high cholesterol, she was on no medications. This was her lifestyle choice and we respected her decisions.
We also discussed what might happen if she was to be taken seriously ill - she had friends who had suffered from stroke and having seen what might happen, she had expressed to us she would prefer not to be put in a nursing home. Having had these conversations we were prepared for what we might have to do, but we had not expected the severity.
There was no LPA (lasting power of attorney or will in place) and Mum had a stroke “out of the blue” though with hindsight there were signs we missed. With no LPA and with Mum’s desire to fight on after the stroke (she was fighting all the time she was in acute stroke and rehab stroke wards (not really rehab for her).
We knew Mum’s health, physical and mental conditions pre-stroke and we knew she was a fighter and had a will to live. So despite the severity of the stroke, and what the experts were telling us (same as what they are now telling you about your father) we knew what Mum would have wanted and we advocated for her (initially as her next of Kin).
We insisted (as much as we can) to make decisions for Mum rather than let the experts make the decisions, though ultimately they had the power to override us if they felt it was in the best interest of Mum. You can read into that what you will. All I will say is we never accepted what they told us and we always explained how Mum was before the stroke and what she would now choose to do and say if she could communicate. So all the time we advocated for Mum and asked she be given as much help as possible. They also pushed back saying she is weak, elderly etc. but we countered. We took the view that we knew Mum better than they did and it was/is true even today.
Once the NHS team realised we were not going to give up, they continued to look after Mum in hospital and she got limited access to physio etc. but she was weak and her communication was very poor which ultimately worked against her, but nevertheless she is still here today and still surprising many in the medical world.
Key points to note.
Mum’s age at time of stroke 89 - she was “written off” by the healthcare professionals but we pushed back and asked she be given a fair chance by not being discriminated against on ground of age.
Whilst the stroke came out of the blue, we had been planning ahead for such an eventuality simply based on needs of the elderly.
We had discussed how she would like to be cared for (if possible - it is not a guarantee). She was already being pseudo-cared for.
Two of Mum’s children were prepared to do as much as possible to care for her (and this was to be cared for at home)
Once commitment was made, we were able to honour it. This was partly because we knew nothing of what it means to be a stroke survivor. We foolishly believed it was like some other illness from which you recover in weeks or months and return to normality - this is the only major surprise and difficulty for us. We simply cannot understand why there is not as much expertise and support for stroke survivors as there [appears to be] is for other illnesses.
We are all (the family) strong minded and we do not give up easily and usually until all avenues have been explored.
Mum’s (stroke survivors) wishes were known and so it was easy to make decisions on how and where to care for her.
Carers (children) were carry on as long as they could.
Mum already “living in the home where she was to be cared for” but with some adaptations required.
Biggest and most important - Mum has a will to live and has never given up despite all the challenges faced.
In summary, we are able to care for Mum because she wants to allow us to care for us and she wants to live.
She never fought back when she was being poked and prodded in hospital when it was explained to her what was being done and why.
She allowed the NLG tube to be fitted and NEVER attempted to remove it, though precautions were taken and other patients were routinely removing theirs.
By allowing others to care for her helped her to get stronger and it also helped others to help her i.e. healthcare professionals could not refuse our requests when Mum is clearly cooperating and we are being proactive and helping them to do their job.
I am sorry I have gone on for much longer than I should have but I got carried away
Things for you to think about.
The above comment from Ann @mrs5k is very important. Please take heed.
That paragraph is 100% true - this is not for everyone and many have told us they could not have done what we are doing and some have told us that their loved one (your father and my Mum) had already expressed their wishes with some choosing not to be “kept alive”.
Seeing your father in the condition he is in is difficult and difficult choices have to be made.
What did your father want or what would he want?
Was he a fighter and would he be fighting?
What quality of life might be achieved and would he want that?
Who can realistically support him (it is a 24/7 job and it is not easy)
I hope this gives you something to think about.
I should add that we the family are the primary carers and do a lot of the caring.
We do get double-up carers 4 x a day, but sometimes they cause more work for us than help they provide, nevertheless they are needed as you get some respite.
I end this by saying, Mum is being cared for at home because she wanted it and she is doing as much as she can to help by being cooperative under very difficult circumstances at times e.g. poor quality of outside carers.
I hope you will be able to work out what is best for your father. I would say that ultimately, this is what you must think about. What is best for your father and if he could choose what would he choose?
Mum was not expected to survive and to have a quality of life. She was in a similar, possibly worse condition than your father (communications, fully right side paralysed etc) but she has fought to live and that is why she is here today.
No expert can tell you how long your father has got to live. If your father wants to live and he shows willing, you should try to advocate for him. There is no reason why he could not live for another X years. X being determined by his will to live and the quality of support he can achieve.
I’m sorry to hear you haven’t been able to get through to the helpline. Some times they are busier than others. Please do try again today, they are open 9-5.
Let me know if you still have trouble getting through.
