Hi Everyone, I have not been active on the site for some time as both my Mum & Dad have been ill over the last few months, Dad is in the final stages of AZ and has been fighting it for the last 13 years, he had a bad chest infection last month and we managed to get him treatment and he improved enough to go back to the nursing home. Now he has developed gangrene in his foot only affecting one toe just now but there are signs that it is spreading. The Doctor has given him antibiotics which have not helped and his toe is now black, his leg swollen and his foot is cold to the touch. What do we do I do not want him to be butchered in stages but can I tell them not to try and save him. The home are wonderful and have said that they will nurse him and keep him pain free but am I just taking the easy way out. My Mum is so upset that she cant cope with talking to the doctors and the like. I must make the right decision for Dad and Mum I just wish he could talk once more and let me know what he wants. Please help
A hard descision to make please help
- Thread starter Softy
- Start date
Softy,
The only thing I can suggest is to think back when your dad was well. What did he say about situations like he is in now then? Did he make any remarks that would give you direction on how to proceed?
My mother and I never had a chance to discuss it but when she was well, she would often say she would not like to be kept alive by machine and/ or heroic measures. She had a tremendously practical view of life and did not believe in people sacrificing themselves for a loved one. She was personally put to the test on this so I know she was sincere in what she said.
The only thing I can suggest is to think back when your dad was well. What did he say about situations like he is in now then? Did he make any remarks that would give you direction on how to proceed?
My mother and I never had a chance to discuss it but when she was well, she would often say she would not like to be kept alive by machine and/ or heroic measures. She had a tremendously practical view of life and did not believe in people sacrificing themselves for a loved one. She was personally put to the test on this so I know she was sincere in what she said.
Joanne
That was such a good answer and I dont believe that I didnt think of it myself. I know exactly what he would say when I think about it. Thank you for your reply it is not an easy post to answer I know
That was such a good answer and I dont believe that I didnt think of it myself. I know exactly what he would say when I think about it. Thank you for your reply it is not an easy post to answer I know
Something that occurs to me is this may be a decision that you and your family may not be allowed to make. I suspect that they may not be willing to let your father die of gangrene when amputation is an option. Before you start beating yourself up over this decision it would be a good idea to find out what amount of input are they likely to allow his family to give.
Assuming the family did have the last word, and also assuming that adequate pain relief was available I think I would prefer in your father's place to let the gangrene take its course. I have to warn you though that this may not be a pretty death and you should ask the doctors what to expect if this happened.
Assuming the family did have the last word, and also assuming that adequate pain relief was available I think I would prefer in your father's place to let the gangrene take its course. I have to warn you though that this may not be a pretty death and you should ask the doctors what to expect if this happened.
Dear Softly,
Joanne's advice is very sound and I can't give any better.
However, I just want to say that I'm thinking of you and your Mum. All the way through this dreadful disease we have to face decisions we might not think we'll ever have to make.
Take care. Because you care for your Dad and your Mum, you will make the right decision I'm sure.
Elaine
Joanne's advice is very sound and I can't give any better.
However, I just want to say that I'm thinking of you and your Mum. All the way through this dreadful disease we have to face decisions we might not think we'll ever have to make.
Take care. Because you care for your Dad and your Mum, you will make the right decision I'm sure.
Elaine
Dear Softy
I don`t know if this will help but here goes.
My neighbour had gangrene and his toe was amputated. The amputation of his toe wasn`t enough for afterwards there was gangrene in his foot. He was waiting for surgery to amputate his foot when he died.
All the time he was ill he was kept pain free. Whenever I went to visit he appeared to be sleeping peacefully. If he was drugged to the hilt it didn`t show. He was well cared for in hospital, always looked lovely, clean and peaceful.
I would ask the doctors for their advice.
I don`t know if this will help but here goes.
My neighbour had gangrene and his toe was amputated. The amputation of his toe wasn`t enough for afterwards there was gangrene in his foot. He was waiting for surgery to amputate his foot when he died.
All the time he was ill he was kept pain free. Whenever I went to visit he appeared to be sleeping peacefully. If he was drugged to the hilt it didn`t show. He was well cared for in hospital, always looked lovely, clean and peaceful.
I would ask the doctors for their advice.
When Dad was last in hospital with pneumonia we had to fight the staff to get him treatment so I will be amazed if they resist our input now. Still we all know that the medical profession are a law unto themselves sometimes. We have an appointment with a vascular surgeon on Thursday so I will see then. As for a pretty death the doctor assured me today that they could control the pain and the nursing home are adamant that he remains with them so that they can look after him.
Hi Softy,
in my line of work (learning disability) there was one gentleman that we cared for, he was lovely but I hasten to add was not capable of making the decision of weither to resusitate or not as his illness progressed but his family (nephew) made the decision for him, I know this is slightly different but I hope it helps.
I wish you well xx
in my line of work (learning disability) there was one gentleman that we cared for, he was lovely but I hasten to add was not capable of making the decision of weither to resusitate or not as his illness progressed but his family (nephew) made the decision for him, I know this is slightly different but I hope it helps.
I wish you well xx
Hi Softie,
Whatever the outcome of this is, whether it is taken out of your hands or whether you will be allowed to refuse surgery, you have always put your dad's best interest first. Keep on remembering that you have done your very best for him throughout all of this and could not do more. These terrible circumstances must be quite overwhelming for you but please be assured you have our love and support in this truely terrible time you are going through.
You are not alone in having to take this decision, many on TP have been faced with similar problems and all have faced it with the knowledge that they can only do what they think is right for their loved ones.
Best wishes for you, your dad and your mum. God bless you for supporting her so very well.
xxTinaT
Whatever the outcome of this is, whether it is taken out of your hands or whether you will be allowed to refuse surgery, you have always put your dad's best interest first. Keep on remembering that you have done your very best for him throughout all of this and could not do more. These terrible circumstances must be quite overwhelming for you but please be assured you have our love and support in this truely terrible time you are going through.
You are not alone in having to take this decision, many on TP have been faced with similar problems and all have faced it with the knowledge that they can only do what they think is right for their loved ones.
Best wishes for you, your dad and your mum. God bless you for supporting her so very well.
xxTinaT
Hi Softy
What a sad situation. You don't say how old your dad is (I might have missed that, am a bit dozey), but I have just chatted to my husband and said "what would you have said if my mum (aged 81, died recently) was told she had to have her foot amputated?" and he said "I would hope you wouldn't agree to it". Eeeh, what a horrible decision - if indeed you get the choice. I give you every support I can in this, you must always realise that you have done the best that you can do, it is all that any of us can do.
Keep us informed, we are all wanting to support you as best we can.
Love
Margaret
What a sad situation. You don't say how old your dad is (I might have missed that, am a bit dozey), but I have just chatted to my husband and said "what would you have said if my mum (aged 81, died recently) was told she had to have her foot amputated?" and he said "I would hope you wouldn't agree to it". Eeeh, what a horrible decision - if indeed you get the choice. I give you every support I can in this, you must always realise that you have done the best that you can do, it is all that any of us can do.
Keep us informed, we are all wanting to support you as best we can.
Love
Margaret
Hi again friends thanks for all your messages my dad is 76 and has had ad for 13 years the first 10 were good really my Mum was fantastic and took so good care of him, but she is tiny and ill herself so he has now been in a secured unit for 2 years. Just when you think you have got a handle on things and they cannot get worse they do. I think I have prepered myself and Mum to cope with the end but this has knocked the stuffing out of me and I am not coping just now. We lost his mind bit by bit I cannot loose anymore of him bit by bit I just carn't.
No need to suffer,
Hi There
Be guided by the vascular surgeon there are options for treatment. Oh dear all this is just too much to bare for you and your mum. Please be brave your dad is comfortable if you and the hospital decide to go down the palliative route. Please ask for Macmillan or the Palliative team for support. They are specialists in End of Life care and will support not only your dad but your mum as well.
I am thinking of you.
Please be assured that your dad will be pain free. I have nursed people before with this condition and I think it is very unfair to say that it is not a pretty death. In fact most unhelpful. Your dad has no need to suffer and am sure that you will ensure that he doesn't
Love
Angela x
Hi There
Be guided by the vascular surgeon there are options for treatment. Oh dear all this is just too much to bare for you and your mum. Please be brave your dad is comfortable if you and the hospital decide to go down the palliative route. Please ask for Macmillan or the Palliative team for support. They are specialists in End of Life care and will support not only your dad but your mum as well.
I am thinking of you.
Please be assured that your dad will be pain free. I have nursed people before with this condition and I think it is very unfair to say that it is not a pretty death. In fact most unhelpful. Your dad has no need to suffer and am sure that you will ensure that he doesn't
Love
Angela x
Thanks Angela
I needed to hear that I have to admit that the pretty death comment was very upsetting as if anything connected with AZ is pretty.
I needed to hear that I have to admit that the pretty death comment was very upsetting as if anything connected with AZ is pretty.
Oh goodness - I feel for you all. I don't feel qualified to say what is right or wrong to do in this instance. What a terrible dilemma to be in after all the years of AD as well. I'm thinking what I would do if it was my mum and I think, like you I wouldn't be keen on losing any more of her! As long as he is as comfortable as possible and they can guarantee no pain!
My heart goes out to you.
love Gillx
My heart goes out to you.
love Gillx
Hello Softy....
Sorry to read about the problems with your dad....and that you're having to consider such awful possibilities.
You've had a lot of varied responses to help you weigh this up.
Can I just add that even if surgery was attempted on your dad at this point...there is every chance he may not survive it...
If dad is cared for , comfortable and pain free....it's worth a lot!
love gigi xx
Sorry to read about the problems with your dad....and that you're having to consider such awful possibilities.
You've had a lot of varied responses to help you weigh this up.
Can I just add that even if surgery was attempted on your dad at this point...there is every chance he may not survive it...
If dad is cared for , comfortable and pain free....it's worth a lot!
love gigi xx
Softy
What hell you must be going through, my thoughts are with you and your family.
At risk of asking the obvious, have you spoken to the staff at the secure unit? If they have been careing for your Dad for the last two years they may have some idea of what he would have wanted in this situation.
Also you say he is in the last stages of AD ask the doctors what is to be gained by amputation to deal with the gangrene.
Whatever you decide, you will find support and understanding on TP.
Love and hugs
Soup Runner
What hell you must be going through, my thoughts are with you and your family.
At risk of asking the obvious, have you spoken to the staff at the secure unit? If they have been careing for your Dad for the last two years they may have some idea of what he would have wanted in this situation.
Also you say he is in the last stages of AD ask the doctors what is to be gained by amputation to deal with the gangrene.
Whatever you decide, you will find support and understanding on TP.
Love and hugs
Soup Runner
Hi People
Just got back to work after visiting dad, the staff at the home agree that surgery is not the correct way forward and share my views that enough is enough. Dad was sleepy today but managed half of his lunch and all of his pudding as usual. He held my hand the whole visit but no words today a couple of smiles and a kiss when I arrived all in all a good visit today. The nursing home staff care for my Dad and he responds to them it would be so cruel to rob him of their company and care and leave him in a hospital ward where nobody knows or cares about him. I will see how he is this evening so far there is no sign of any pain but the staff have morphine from the doctor when its needed. My Mum does not want to visit she is so sad that I dont feel like asking her to go am worried though that she will regret spending as much time with dad now as she can.
Just got back to work after visiting dad, the staff at the home agree that surgery is not the correct way forward and share my views that enough is enough. Dad was sleepy today but managed half of his lunch and all of his pudding as usual. He held my hand the whole visit but no words today a couple of smiles and a kiss when I arrived all in all a good visit today. The nursing home staff care for my Dad and he responds to them it would be so cruel to rob him of their company and care and leave him in a hospital ward where nobody knows or cares about him. I will see how he is this evening so far there is no sign of any pain but the staff have morphine from the doctor when its needed. My Mum does not want to visit she is so sad that I dont feel like asking her to go am worried though that she will regret spending as much time with dad now as she can.
I feel I should apologise as I was the one who mentioned it not being a pretty death. You're correct in saying that anything about AD is not pretty. However, I did have a family member who died with gangrene so I'm just going on what I saw then. The person in question was heavily medicated so I have no reason to suppose she felt any pain, she definitely didn't appear to. To be fair, I was a young teen so things may have moved on since then (we have to hope) but the thing I remember most was the smell. Maybe they can deal with that now as well.
The most important thing is that you are looking out for your father's best interests. I am never an advocate of prolonging death. Prolonging life yes, but not death and everyone has a point where one becomes the other.
The most important thing is that you are looking out for your father's best interests. I am never an advocate of prolonging death. Prolonging life yes, but not death and everyone has a point where one becomes the other.
I think things might have moved on since your experience Jennifer. I have a heightened sense of smell . It compensates for other weakened senses. I had no experience of a bad smell from my neighbour. It was one of the most unexpected experiences of his final days, how beautifully he was cared for.
