My Dad wants it to end
Discussion
Hi all,
My dad has been a very physical outdoor person his entire life and still was at 89 prior to the strokes he had in early December. His back bedroom still has his stationary bike, rowing machine and dumb bells sat ready to go.
He had a small stroke in November but seemed to fully recover from this. Then at the start of December he had a big one and was taken to hospital and has been there ever since.
He had another big stroke and then various seizures, leaving him very poorly. He now looks like a tiny bag of bones wrapped in tissue thin skin.
After various treatments including a pacemaker and a PEG, he is and will probably remain Nil by mouth, he is medically stable so not dying.
His prognosis is he may get to the point he can sit in a chair outside he may with a lot of work be able to shuffle a few steps with a frame of some sort but he doesn't see that at the moment he is bed bound being barrier nursed as he is incontinent and moved around in bed to stop bed sores.
Long story short he does not want to live like this, he has full capacity as all the doctors have told us that and other than his slured speech he is fully there.
Now none of us want my dad to go, but I can not argue with his reasoning we know the type of person he has been his entire life.He has decided to refuse food and water as he sees it as the only way to get too the end.
My sister and I went to visit him yesterday and had long talks about it with him but he is dead set that this is what he wants.
I had a call from someone at social services this morning and she along with 2 psychiatrists will be going to visit him today to asses him.
From the conversation we had if they deem him a danger to himself then he will be sectioned and treated anyway.
If he is refusing food and water then I dont see how they come to any other conclusion.
What do people think about this?
Should he be allowed to decide he has had enough and has no wish to go on like this.
I am so torn, I want my dad to live forever as everyone does, but he has always been in charge of his life and his like has been outside doing physically stuff, him and his partner have been all over the world. Toured Australia for 2 6 month periods by flying over then buying a 2nd hand car and trailer tent and setting off into the country, for the last 13 years they have gone to spain over winter for 3 months.
Sadly his partner has dementia, with good days and bad days so sometimes doesn't know who he is etc.
I dont know this is mostly just a ramble as I have no idea what to do, we live 3 hours away so its not like I can just pop in all the time.
If he is sectioned and effectively force fed through his PEG mentally that will destroy him and any dignity he has left.
I just have to wait for the call back thus afternoon, I am dreading it.
Sorry for the rambling im not sure what im asking, I guess is it ok to want to respect his wishes that he does not want to go on, and would the NHS or whoever actually allow it.
My dad has been a very physical outdoor person his entire life and still was at 89 prior to the strokes he had in early December. His back bedroom still has his stationary bike, rowing machine and dumb bells sat ready to go.
He had a small stroke in November but seemed to fully recover from this. Then at the start of December he had a big one and was taken to hospital and has been there ever since.
He had another big stroke and then various seizures, leaving him very poorly. He now looks like a tiny bag of bones wrapped in tissue thin skin.
After various treatments including a pacemaker and a PEG, he is and will probably remain Nil by mouth, he is medically stable so not dying.
His prognosis is he may get to the point he can sit in a chair outside he may with a lot of work be able to shuffle a few steps with a frame of some sort but he doesn't see that at the moment he is bed bound being barrier nursed as he is incontinent and moved around in bed to stop bed sores.
Long story short he does not want to live like this, he has full capacity as all the doctors have told us that and other than his slured speech he is fully there.
Now none of us want my dad to go, but I can not argue with his reasoning we know the type of person he has been his entire life.He has decided to refuse food and water as he sees it as the only way to get too the end.
My sister and I went to visit him yesterday and had long talks about it with him but he is dead set that this is what he wants.
I had a call from someone at social services this morning and she along with 2 psychiatrists will be going to visit him today to asses him.
From the conversation we had if they deem him a danger to himself then he will be sectioned and treated anyway.
If he is refusing food and water then I dont see how they come to any other conclusion.
What do people think about this?
Should he be allowed to decide he has had enough and has no wish to go on like this.
I am so torn, I want my dad to live forever as everyone does, but he has always been in charge of his life and his like has been outside doing physically stuff, him and his partner have been all over the world. Toured Australia for 2 6 month periods by flying over then buying a 2nd hand car and trailer tent and setting off into the country, for the last 13 years they have gone to spain over winter for 3 months.
Sadly his partner has dementia, with good days and bad days so sometimes doesn't know who he is etc.
I dont know this is mostly just a ramble as I have no idea what to do, we live 3 hours away so its not like I can just pop in all the time.
If he is sectioned and effectively force fed through his PEG mentally that will destroy him and any dignity he has left.
I just have to wait for the call back thus afternoon, I am dreading it.
Sorry for the rambling im not sure what im asking, I guess is it ok to want to respect his wishes that he does not want to go on, and would the NHS or whoever actually allow it.
I'm sorry to hear this mate, how awful for him and for you and the family.
Horrible that he has been left in such condition by his deteriorating health and that he is 'forced' to carry on, if Social Services get their way.
I don't understand their thinking.
Not sure what to say or suggest but writing out your thoughts on here is a good idea.
PH has helped me when things are bad.
I don't know you but wishing for a 'good' outcome for you all.
Horrible that he has been left in such condition by his deteriorating health and that he is 'forced' to carry on, if Social Services get their way.
I don't understand their thinking.
Not sure what to say or suggest but writing out your thoughts on here is a good idea.
PH has helped me when things are bad.
I don't know you but wishing for a 'good' outcome for you all.
Thanks for the reply I appreciate it.
They may call me back and say yes he has full capacity and can do as he pleases, but from talking to the social worker its very much they know best and if he is deemed a risk to himself then they will section him.
He wants to end it so of course he is a risk to himself so I can't see any other outcome but I am jumping the gun before they have called.
The problem is he will get flustered, he knows what he wants but his speech can be slured due to the strokes he will get upset that they aren't listening to him etc.
But this could all be in my head im sure they are very nice people.
I can't get my head around it at the moment.
They may call me back and say yes he has full capacity and can do as he pleases, but from talking to the social worker its very much they know best and if he is deemed a risk to himself then they will section him.
He wants to end it so of course he is a risk to himself so I can't see any other outcome but I am jumping the gun before they have called.
The problem is he will get flustered, he knows what he wants but his speech can be slured due to the strokes he will get upset that they aren't listening to him etc.
But this could all be in my head im sure they are very nice people.
I can't get my head around it at the moment.
Cpl nobby nobbs said:
Thanks for the reply I appreciate it.
They may call me back and say yes he has full capacity and can do as he pleases, but from talking to the social worker its very much they know best and if he is deemed a risk to himself then they will section him.
He wants to end it so of course he is a risk to himself so I can't see any other outcome but I am jumping the gun before they have called.
The problem is he will get flustered, he knows what he wants but his speech can be slured due to the strokes he will get upset that they aren't listening to him etc.
But this could all be in my head im sure they are very nice people.
I can't get my head around it at the moment.
Firstly, I'm sorry you're both going through this.They may call me back and say yes he has full capacity and can do as he pleases, but from talking to the social worker its very much they know best and if he is deemed a risk to himself then they will section him.
He wants to end it so of course he is a risk to himself so I can't see any other outcome but I am jumping the gun before they have called.
The problem is he will get flustered, he knows what he wants but his speech can be slured due to the strokes he will get upset that they aren't listening to him etc.
But this could all be in my head im sure they are very nice people.
I can't get my head around it at the moment.
Unfortunately this may need directing, is there anyone closer who can advocate for him? If he's struggling to get his PoV across he needs help. If not then I think you need to be there for him
I realise you're torn but just as he's had a good life, he should have a good death and it's often the case that medics can lose sight of that.
Bill said:
Firstly, I'm sorry you're both going through this.
Unfortunately this may need directing, is there anyone closer who can advocate for him? If he's struggling to get his PoV across he needs help. If not then I think you need to be there for him
I realise you're torn but just as he's had a good life, he should have a good death and it's often the case that medics can lose sight of that.
His partners Daughter so pretty much my step sister lives much closer , going forward I fully trust her to advocate for him unfortunately she is not at home this weekend so no one could attend the meeting. Although no one was invited to attend it was just a courtesy to let me know they are going as im next of kin. Unfortunately this may need directing, is there anyone closer who can advocate for him? If he's struggling to get his PoV across he needs help. If not then I think you need to be there for him
I realise you're torn but just as he's had a good life, he should have a good death and it's often the case that medics can lose sight of that.
Going forwards I will do whatever is needed if they need to meet me then I will go up there, I have a pretty understanding employer.
From your description.
Your father is not depressed.
He has capacity.
If a Mental Health Assessment is actioned the nearest relative must be consulted and can stop the section.
You or a family member must be with him if he is assessed and family views must be considered.
He has capacity so look up "Advanced Decisions" if you are not already.
Ask him if he wants to do this .
He can refuse medical treatment even if it is life threatening.
I wish him all the best - and family.
Quickly written - Explore Advanced Decisions.
RGG said:
From your description.
Your father is not depressed.
He has capacity.
If a Mental Health Assessment is actioned the nearest relative must be consulted and can stop the section.
You or a family member must be with him if he is assessed and family views must be considered.
He has capacity so look up "Advanced Decisions" if you are not already.
Ask him if he wants to do this .
He can refuse medical treatment even if it is life threatening.
I wish him all the best - and family.
Quickly written - Explore Advanced Decisions.
Many thanks, I will start looking at this now. Your father is not depressed.
He has capacity.
If a Mental Health Assessment is actioned the nearest relative must be consulted and can stop the section.
You or a family member must be with him if he is assessed and family views must be considered.
He has capacity so look up "Advanced Decisions" if you are not already.
Ask him if he wants to do this .
He can refuse medical treatment even if it is life threatening.
I wish him all the best - and family.
Quickly written - Explore Advanced Decisions.
So sorry to read about this op. I do hope that our government brings in an assisted suicide law but that’s not looking good right now .
A chum of mine and his wife took her mother to Dignitas in Switzerland when she wanted to go. They said it all went very well with lots of safeguards. I just hope that option or similar is available when my time comes.
A chum of mine and his wife took her mother to Dignitas in Switzerland when she wanted to go. They said it all went very well with lots of safeguards. I just hope that option or similar is available when my time comes.
Not sure I should put this down on a public forum….but… I guess if it helps someone else.
My dad was in hospital, some sort of blood cancer and a few other things came to light - none of us really knew as he was the old strong and silent type.
A week or so went by, I went to visit him and he told me to get him out of the hospital now, he wanted to die at home and he was sick of the doctors (never trusted them, back story to that).
I did what he asked, doctors tried to stop me, tried to keep him alive because that’s what they wanted.
I did what my dad wanted. I did what I had to do and he died at home as he wished.
I don’t regret it for a second, never will.
My dad was in hospital, some sort of blood cancer and a few other things came to light - none of us really knew as he was the old strong and silent type.
A week or so went by, I went to visit him and he told me to get him out of the hospital now, he wanted to die at home and he was sick of the doctors (never trusted them, back story to that).
I did what he asked, doctors tried to stop me, tried to keep him alive because that’s what they wanted.
I did what my dad wanted. I did what I had to do and he died at home as he wished.
I don’t regret it for a second, never will.
Sorry you are going through this OP
I started a thread earlier this year about death and dying.
https://www.pistonheads.com/gassing/topic.asp?h=0&...
I'm of an age where I have witnessed the death of relatives. Parents, siblings. There is no easy answer, but one thing I have realised that it is up to the individual to decide.
After my Dad died, my Mum lost her zest for life. They were so close. She moved near me and my sister and I made an effort to visit at least once a week and take her out. She had a few niggly health issues which were not being addressed by the NHS. She was on the list for a stent to be fitted to her heart, but in-between I guess she decided she had enough. She had a heart attack and was in hospital. She made her intentions known that she wanted to be DNR and had another heart attack and died.
I felt terribly betrayed. I had planned stuff that we were going to do with Mum, but in time, as I have got older, I can understand and accept her decision. However, it took a while.
Currently my SIL is in a hospice with terminal cancer. She is on a high dose of steroids which are giving her a healthy appetite. She is bed bound and mostly confused with occasional lucid moments. If that was me, I would be wanting more morphine and less steroids. The outcome is inevitable. I'm not sure I would want it prolonging.
I started a thread earlier this year about death and dying.
https://www.pistonheads.com/gassing/topic.asp?h=0&...
I'm of an age where I have witnessed the death of relatives. Parents, siblings. There is no easy answer, but one thing I have realised that it is up to the individual to decide.
After my Dad died, my Mum lost her zest for life. They were so close. She moved near me and my sister and I made an effort to visit at least once a week and take her out. She had a few niggly health issues which were not being addressed by the NHS. She was on the list for a stent to be fitted to her heart, but in-between I guess she decided she had enough. She had a heart attack and was in hospital. She made her intentions known that she wanted to be DNR and had another heart attack and died.
I felt terribly betrayed. I had planned stuff that we were going to do with Mum, but in time, as I have got older, I can understand and accept her decision. However, it took a while.
Currently my SIL is in a hospice with terminal cancer. She is on a high dose of steroids which are giving her a healthy appetite. She is bed bound and mostly confused with occasional lucid moments. If that was me, I would be wanting more morphine and less steroids. The outcome is inevitable. I'm not sure I would want it prolonging.
Cpl nobby nobbs said:
RGG said:
From your description.
Your father is not depressed.
He has capacity.
If a Mental Health Assessment is actioned the nearest relative must be consulted and can stop the section.
You or a family member must be with him if he is assessed and family views must be considered.
He has capacity so look up "Advanced Decisions" if you are not already.
Ask him if he wants to do this .
He can refuse medical treatment even if it is life threatening.
I wish him all the best - and family.
Quickly written - Explore Advanced Decisions
Many thanks, I will start looking at this now. Your father is not depressed.
He has capacity.
If a Mental Health Assessment is actioned the nearest relative must be consulted and can stop the section.
You or a family member must be with him if he is assessed and family views must be considered.
He has capacity so look up "Advanced Decisions" if you are not already.
Ask him if he wants to do this .
He can refuse medical treatment even if it is life threatening.
I wish him all the best - and family.
Quickly written - Explore Advanced Decisions
https://www.nhs.uk/tests-and-treatments/end-of-lif...
An Advanced Decision can be verbal but is much better if written.
It doesn't have to be on a specific form - and can be hand written.
It can be a simple statement witnessed by "anyone" - ideally a relative/ closest friend who won't benefit financially.
Again from the information provided, your father has said to the staff, he wants to refuse nourishment and they are under an obligation to make sure he has capacity and is not mentally impaired by psychiatric illness- that's understandable and why they've requested an assessment.
From your account of father's position it's for him to demonstrate that he has capacity to make his own decision and the staff are under a legal obligation to comply.
An advanced decision made anytime is legally binding and will support his view when he is assessed.
His position is strong, in my view so support him in any way you can.
Any specific questions, just ask.
Thanks everyone for the replies.
I have just had the call back from the social worker, they have had their meeting, they where with him for about 1.5 hours.
In short all 3 of them agree that his has full capacity, knows exactly what he wants and has the right to make these decisions about his care, including the right to refuse food and water.
She said their report will fo to the hospital and will help going forward as they have ticked a box.
My step sister is going in tomorrow to see him and talk with the hospital re possibly moving him to a hospice.
I was jumping the gun a bit there but all I could think of was him being sectioned and force fed.
I can have some lunch now without feeling sick.
I have just had the call back from the social worker, they have had their meeting, they where with him for about 1.5 hours.
In short all 3 of them agree that his has full capacity, knows exactly what he wants and has the right to make these decisions about his care, including the right to refuse food and water.
She said their report will fo to the hospital and will help going forward as they have ticked a box.
My step sister is going in tomorrow to see him and talk with the hospital re possibly moving him to a hospice.
I was jumping the gun a bit there but all I could think of was him being sectioned and force fed.
I can have some lunch now without feeling sick.
Cpl nobby nobbs said:
Thanks everyone for the replies.
I have just had the call back from the social worker, they have had their meeting, they where with him for about 1.5 hours.
In short all 3 of them agree that his has full capacity, knows exactly what he wants and has the right to make these decisions about his care, including the right to refuse food and water.
She said their report will fo to the hospital and will help going forward as they have ticked a box.
My step sister is going in tomorrow to see him and talk with the hospital re possibly moving him to a hospice.
I was jumping the gun a bit there but all I could think of was him being sectioned and force fed.
I can have some lunch now without feeling sick.
You weren't jumping the gun - the process your father was engaged in this morning had a sensible outcome - that's not always the case.I have just had the call back from the social worker, they have had their meeting, they where with him for about 1.5 hours.
In short all 3 of them agree that his has full capacity, knows exactly what he wants and has the right to make these decisions about his care, including the right to refuse food and water.
She said their report will fo to the hospital and will help going forward as they have ticked a box.
My step sister is going in tomorrow to see him and talk with the hospital re possibly moving him to a hospice.
I was jumping the gun a bit there but all I could think of was him being sectioned and force fed.
I can have some lunch now without feeling sick.
I'm very pleased for you all, especially your father.
For anyone following this, please explore "Advance Decisions" - the facts and legal position.
Not just for your older close ones, but for yourself and immediate family.
https://www.nhs.uk/tests-and-treatments/end-of-lif...
RGG said:
You weren't jumping the gun - the process your father was engaged in this morning had a sensible outcome - that's not always the case.
I'm very pleased for you all, especially your father.
For anyone following this, please explore "Advance Decisions" - the facts and legal position.
Not just for your older close ones, but for yourself and immediate family.
https://www.nhs.uk/tests-and-treatments/end-of-lif...
Thanks very much I very much appreciated the information and agree think about this stuff sooner than later.I'm very pleased for you all, especially your father.
For anyone following this, please explore "Advance Decisions" - the facts and legal position.
Not just for your older close ones, but for yourself and immediate family.
https://www.nhs.uk/tests-and-treatments/end-of-lif...
It would be so much easier if we had an LPA both medical and financial but just figured my dad would go on forever.
Hi OP,
I was going to write a longer reply when I read your first post because I do have experience of this and dealing with the Mental Health act for a relative but now I read you have already got it resolved which is good news, nd I would say the right decision.
I'm sorry to hear about what you are all going through and I hope in the circumstances that a hospice can be arranged for your father because it will be a much better place for him than hospital in the circumstances
I was going to write a longer reply when I read your first post because I do have experience of this and dealing with the Mental Health act for a relative but now I read you have already got it resolved which is good news, nd I would say the right decision.
I'm sorry to hear about what you are all going through and I hope in the circumstances that a hospice can be arranged for your father because it will be a much better place for him than hospital in the circumstances
I am sorry to read this. I would say that if your father has the capacity to make his wishes clear it would be best to permit him to make his decision. As always that question of mental capacity at the time is the most important thing. In Canada we have MAID (Medical Assistance in Dying) and it allows people with terminal illness or unbearable pain to elect to end their lives. I believe that this is a good thing and it is an accepted part of the society now.
When my own father was at that stage he really wanted to go, and my belief was that the medical staff at the time assisted the process; with a slight hint I was sure. It is so difficult to say goodbye but I have already made my own wishes crystal clear and in writing with my lawyer. A stroke can have the terrible effect of leaving someone unable to communicate so I have done everything possible to make things as understandable as possible.
When my own father was at that stage he really wanted to go, and my belief was that the medical staff at the time assisted the process; with a slight hint I was sure. It is so difficult to say goodbye but I have already made my own wishes crystal clear and in writing with my lawyer. A stroke can have the terrible effect of leaving someone unable to communicate so I have done everything possible to make things as understandable as possible.
ensure that he gets the right pain treatment and such to help, he has made the decision, and now they should help him have a peaceful exit.
https://www.helpinghandshomecare.co.uk/care-advice...
https://www.helpinghandshomecare.co.uk/care-advice...
I was very saddened to read this and it reminded me of my own father's passing. Your Dad sounds strong willed and sure in his conviction. Let him take the path that he's chosen.
My Dad was an extremely successful exec in a Fortune 500 corporation. He had a stellar career. When he retired, he and my Mum went to live in a beautiful converted farm, 50kms south of Le Mans (highly convenient!). My mother died suddenly during a UK trip to visit my sister - and my Dad never got over it. He remained in France on his own for another year, but he wasn't coping.
He was also starting to exhibit signs of dementia, which was extremely distressing to him, because he was acutely aware of it. Myself and two younger brothers live in the US and used to Skype/Zoom/FaceTime with him on an almost daily basis, trying to keep him positive. His passion was cycling - he'd ride the country lanes for hours daily - rain or shine, but it was obvious that he'd need to be near family in his twilight times.
I offered him to come and live with my family in FL, but he declined (his healthcare would have been bankrupting, with hindsight). My elder sister found him a really nice apartment close to her home on the south coast and he moved there - but he became increasingly incapable of caring for himself, despite all of the assistance and support from my sister and her husband. Essentially, he was going bonkers - and he knew it.
Finally, he moved into assisted living - but he was miserable, frightened and confused. I had a work trip to UK and spent some time with him. He told me he was going to kill himself, he just couldn't go on.
A few weeks after I went back to the US, he had a fall and broke his hip, so he was admitted to the local hospital. There, he refused any treatment, food or medicine. All he consumed was water. My UK family was with him throughout this f
king ordeal, which went on for nearly 2 weeks. He knew exactly what he was doing. It was distressing to witness - but it was his decision and his will to make it so.
If your Dad is anything like mine - it may well be appropriate to have him take charge of how things go from now.
Best wishes to you at a really difficult time.
My Dad was an extremely successful exec in a Fortune 500 corporation. He had a stellar career. When he retired, he and my Mum went to live in a beautiful converted farm, 50kms south of Le Mans (highly convenient!). My mother died suddenly during a UK trip to visit my sister - and my Dad never got over it. He remained in France on his own for another year, but he wasn't coping.
He was also starting to exhibit signs of dementia, which was extremely distressing to him, because he was acutely aware of it. Myself and two younger brothers live in the US and used to Skype/Zoom/FaceTime with him on an almost daily basis, trying to keep him positive. His passion was cycling - he'd ride the country lanes for hours daily - rain or shine, but it was obvious that he'd need to be near family in his twilight times.
I offered him to come and live with my family in FL, but he declined (his healthcare would have been bankrupting, with hindsight). My elder sister found him a really nice apartment close to her home on the south coast and he moved there - but he became increasingly incapable of caring for himself, despite all of the assistance and support from my sister and her husband. Essentially, he was going bonkers - and he knew it.
Finally, he moved into assisted living - but he was miserable, frightened and confused. I had a work trip to UK and spent some time with him. He told me he was going to kill himself, he just couldn't go on.
A few weeks after I went back to the US, he had a fall and broke his hip, so he was admitted to the local hospital. There, he refused any treatment, food or medicine. All he consumed was water. My UK family was with him throughout this f
king ordeal, which went on for nearly 2 weeks. He knew exactly what he was doing. It was distressing to witness - but it was his decision and his will to make it so.If your Dad is anything like mine - it may well be appropriate to have him take charge of how things go from now.
Best wishes to you at a really difficult time.
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