My father is at the end of this nightmarish journey. He is in hospital with yet another chest infection, he cannot walk or talk, has been doubly incontinent for years and now the final stage is he cannot swallow. He is disappearing before our eyes, the doctors say we are looking at either putting a tube down his nose (temporary) or having to get a peg put in his stomach to peg feed him. We will have to make this decision very soon as his swallow appears to be completely gone. I don't know what to do. I can't bear the thought of my father not being here on the other hand this is not a life he's living. Has anyone had to make this decision? Was the peg feeding a good thing or is it better to let them go, and if so how is it done? I'd appreciate anyone's help who has been in this terrible situation. Thank you
what to do??
- Thread starter Mjaqmac
- Start date
I don't have any experience of this but although I know it must be terribly hard to do, my decision would be not to feed and let him go.
So sorry for your dilemma x
So sorry for your dilemma x
Sorry, no experience of this either..but my heart tells me that if it was my Mum in this situation I think I would want to ensure she was comfortable, not in any pain and hope she just slips away...so avoid anything that prolongs the inevitable...<3
I agree with the others. I am a nurse and have taken care of many patients being fed by a stomach tube. With progressive dementia at work, I don't see the reason for prolonging the inevitable. For my mom, I know I wouldn't want to put her through that. Once she can no longer swallow it will be time to say goodbye.
I'm so sorry you have to make this decision.
I'm so sorry you have to make this decision.
I haven't been in your position but my sister and I have discussed this and agreed to no heroic measures to keep our mother alive. In this at least we have the comfort of Mum having said over the years that she didn't want to be kept alive by a machine. Knowing her feelings about it made it a slightly easier decision. Did your father ever express his views, either about himself or perhaps a news story about someone in a similar situation? It could help in your decision.
A hard decision but if it were my mother I would want to let her go, she has not wanted to be on this earth for quite a while now so it is probably easier when you know their own wishes. I think saying no to a stomach tube is a hard choice but it may be the right one.
Hi - I just wanted to reply to you because I am in a similar situation with my husband. He hasn't quite got to the same situation as he can still just swallow but we have to be very careful feeding him - just tiny amounts off a teaspoon and watch for a "double" swallow before giving the next spoonful.
Hard as it is I have already spoken to the GP and Sister at the NH to say we do not wish to prolong things when we get to when he cannot swallow at all and they told me that if they started PEG feeding they couldn't stop and I think that would be so unkind.
It is a dreadful decision to take but I think on the whole the kindest. I know if my husband realised just how ill he is he would not wish to linger and although he is superbly looked after by the wonderful carers at the NH, it is still no life for him or the family.
Take care. Sox
Hard as it is I have already spoken to the GP and Sister at the NH to say we do not wish to prolong things when we get to when he cannot swallow at all and they told me that if they started PEG feeding they couldn't stop and I think that would be so unkind.
It is a dreadful decision to take but I think on the whole the kindest. I know if my husband realised just how ill he is he would not wish to linger and although he is superbly looked after by the wonderful carers at the NH, it is still no life for him or the family.
Take care. Sox
My heart aches for you and all that are confronted by this circumstance.
I know it's what my Mam would want but it wouldn't make the doing of it any easier.
I know it's what I would want too.
Soul-aching pain.
Love and strength to those that walk such a hard path. X
I know it's what my Mam would want but it wouldn't make the doing of it any easier.
I know it's what I would want too.
Soul-aching pain.
Love and strength to those that walk such a hard path. X
Dear Mjaqmac,
I'm sorry to hear your father is so poorly and in hospital. I am glad however that the medics are talking to you and giving you possible options - so much better than making no effort.
However, that does leave the burden of having to make a decision to you - did you ever have any conversations with your father before he was unwell so that you might have an idea what he would want for himself? That might guide you.
There have been quite a few threads on the topic of PEG feeding in recent months - if you do a search you will be able to read through them, and that might help you.
When my mother lost the ability to swallow, and indeed was in a similarly incapacitated state as your father, I was told of PEG feeding, but mum was already very frail following pneumonia; we decided not to instigate the PEG, but I also did already know that her personal view was not to prolong life with no quality. So I was able to make that decision knowing she would have said that if she could. She died not very long after that - it broke my heart, but that was losing her, not the decision; and we would only have been delaying the inevitable.
It is a horrible time, and not the way we wanted things to go. Sending you strength to cope; keep coming here for support. Best wishes x
I'm sorry to hear your father is so poorly and in hospital. I am glad however that the medics are talking to you and giving you possible options - so much better than making no effort.
However, that does leave the burden of having to make a decision to you - did you ever have any conversations with your father before he was unwell so that you might have an idea what he would want for himself? That might guide you.
There have been quite a few threads on the topic of PEG feeding in recent months - if you do a search you will be able to read through them, and that might help you.
When my mother lost the ability to swallow, and indeed was in a similarly incapacitated state as your father, I was told of PEG feeding, but mum was already very frail following pneumonia; we decided not to instigate the PEG, but I also did already know that her personal view was not to prolong life with no quality. So I was able to make that decision knowing she would have said that if she could. She died not very long after that - it broke my heart, but that was losing her, not the decision; and we would only have been delaying the inevitable.
It is a horrible time, and not the way we wanted things to go. Sending you strength to cope; keep coming here for support. Best wishes x
Feeding Tube
I am in your situation it is very difficult.
My dad also has been in bad health for 3yrs now none of which is not dementia related.
Brain bleed,stroke,osteoarthritis,constant chest infections.because of the swallow a
tube has been inserted into his nose.This is not easy dad has pulled it out on more than one occasion
The peg in the side is also not striaght forward infections can start
My husband has ALZ and FTD I would not allow a tube to be inserted in the final stages for him.
There is a good FTD u tube video to watch which covers the subject of tube feeding with late stages of dementia.
I feel for you.
The video helped to strengthen my thoughts on what I should do
Hope this is helpful to you to make your decision.
Take Care Sheila
Hello Mjaqmac
I am in your situation it is very difficult.
My dad also has been in bad health for 3yrs now none of which is not dementia related.
Brain bleed,stroke,osteoarthritis,constant chest infections.because of the swallow a
tube has been inserted into his nose.This is not easy dad has pulled it out on more than one occasion
The peg in the side is also not striaght forward infections can start
My husband has ALZ and FTD I would not allow a tube to be inserted in the final stages for him.
There is a good FTD u tube video to watch which covers the subject of tube feeding with late stages of dementia.
I feel for you.
The video helped to strengthen my thoughts on what I should do
Hope this is helpful to you to make your decision.
Take Care Sheila
I made this decision nearly a year ago for my mother. So far I feel only gladness and relief on her behalf. I would only have prolonged her dying, otherwise.
Dear Magic
I was in the same situation with my mum. My brother and I had discussed it beforehand, and both felt that Mum would not have wanted a PEG or tube. When I got the call from the doctor I said this, and asked her if she felt there was a good reason for us to change our minds. Her response was that feeding tubes or PEGs were of use where the underlying condition was likely to improve, which was not the case with Mum's advanced dementia, and that in the circumstances the only effect would be to prolong the dying process. So we said no, which meant she was able to stay in her room at the care home in peace and quiet, and she left us very peacefully a few days later. It is such a difficult time and I know what you are going through. Wishing you and your dad peace.
Claire
I was in the same situation with my mum. My brother and I had discussed it beforehand, and both felt that Mum would not have wanted a PEG or tube. When I got the call from the doctor I said this, and asked her if she felt there was a good reason for us to change our minds. Her response was that feeding tubes or PEGs were of use where the underlying condition was likely to improve, which was not the case with Mum's advanced dementia, and that in the circumstances the only effect would be to prolong the dying process. So we said no, which meant she was able to stay in her room at the care home in peace and quiet, and she left us very peacefully a few days later. It is such a difficult time and I know what you are going through. Wishing you and your dad peace.
Claire
