Peg or not?: Hi I am having to make the... - PSP Association

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Peg or not?

Hi I am having to make the truly awful decision of whether to peg feed or not my lovely Mother? She has signed DNR but i have to face this decision. How can a daughter face this decision? I will have to live with the consequences of my decision for the rest of of my life? Please can you help me make this decision with your ecperiences? Thanks

19 Replies

Martina I have just experienced the same decision with my husband who has sadly passed away three weeks ago, his swallow reflex had completely gone, he looked terrified every time he tried to drink or eat, I questioned myself should I insist he had a peg feed even though he stated he didn't want one, I had medical power of attorney but I couldn't go against his wishes. The consultant told me that he didn't think he was strong enough to survive the procedure and even if he did it wouldn't miraculously make him better, it would just keep him alive and prolong the inevitable. It's a really tough decision to make but I think I made the right one, I couldn't bear to see him suffer and deteriorate any more, it's a really tough decision but I hope that you manage to come to make the right one for your Mum...

Sending you love and hugs....Pat xx

Martina my take on it is this, would your mum want this? Will it improve her quality of life? How is her quality of life now? My personal view is no! But there are are others who would disagree. It's a bloody difficult decision. Sending hugs x

Such a difficult decision. My mum didn't have one. She wouldn't have wanted to continue and had no quality of life at all. I think you also have to trust and have faith in the medics advising you. You're in my thoughts.

Its the big decision struggled with. There are some who found it right to go ahead. Personally, Chris said from the beginning he didn't want it. Can your mother make this decision and, if not, what would be gained ?

Thinking of you, love, Jean x

If she put in place a DNR she also most likely did not want a PEG. If she is not able to answer this question herself, then what quality of life are you giving her ?

....It has been over a year since we put my husbands PEG in. But he was 55; he did have some quality of life left. However today, he does not enjoy that quality of life, and if I were to have to make that choice on my own I think I could say no.

It's ok to let mom pass on naturally....you are not taking anything away from her .

What would you do if there was no such thing as a PEG feeding tube. Probably be by her bed side and love her. maybe read to her and pray with her and sing or something.....do that! make her comfortable let her know that her passing is ok .....This is something that I am going through with my husband right now....Yes, he has a PeG, but he is losing his ability to breath, so I let him listen to books , I read to him, pray with him. he just got an awesome massage from a therapist....life goes on ...until it doesn't anymore

It's ok to let go....

AVB

Satt2015 profile image
Satt2015 in reply to abirke

Well said AVB x

We were asked to make this decision on behalf of our dad....but the decision was not ours to make! He passed away peacefully, a couple of days before we had to give an answer! Personally, as a family we knew it would have been the last thing our dad would have wanted! He had no quality of life, and loved his food until the end! I know he would have hated being kept going with a tube, but that was my dad, everyone is different. X

Hi

Rog made his decision with counsel from the hospice about two years ago, I support his refusal to be peg fed completely, let nature take its course.

Hold her tight

Julie x

My wife has PSP and last year made an Advance Care Plan during a visit to our local hospice setting out what treatment she didn't want when the time came. She decided that she didn't want peg-feeding when the time came. As far as I know this takes precedence over Power of Attorney. Don't forget that PoA only kicks in if a health professional carries out the necessary check and determines that the patient is not able to make the necessary decision for themselves. Stay safe.

We have just made the decision to have a RIG fitted after weeks of choking, dehydration and finally aspiration pneumonia. My husband can barely speak at all but when asked by the doctor if he wanted a PEG fitted he replied clearly that he did. We would not have gone ahead without that clear assent for all the reasons that other people have given. I know that PEG feeding has its own problems so there are many difficult times ahead.

It is such a challenging situation for you and I wish you all the best in this decision. Every case is different but I read this site over and over again while we were thinking about what to do. You will make the right decision because you know your own situation so well. Thinking of you.

Hi it depends on your mum's age and other health concerns. M had a PEG for nearly 2 yrs she had signed a DNR well before having the PEG. DNR means "do not resuscitate" and is there for pneumonia, strokes and heart attacks.

M had nearly 18 months of good life able to go out, see grandchildren and no swallow problems until last few months when saliva got out of control. I did begin to worry about the decision towards the end when her quality of life seemed to disappear but she smiled and kept fighting and liking the walks in the beach in her wheelchair.

It is her decision but she needs to know the good side of the PEG as well as the other worries. Best wishes Tim

Our take on this may be different than yours. A year ago following aspiration pneumonia my husband decided on a PEG. At the time he was mobile and could talk fairly well. With the help of a fantastic speech therapist he soon was eating a "comfort meal" with me in the evening. When she asked him what his goal was, it was to have dinner with me in the evening. By now he is usually spoon fed because he is weak. I don't worry about balancing his meal because he gets all he needs during the day. I am totally convinced he would not be with us now if not for the PEG. His quality of life is not what I would want but he is OK with it. We live in Florida so last week we took him to the intercoastal for the morning. We saw a manatee swim by and 2 dolphins put on a show for us. He had a wonderful time. So life is good for him.

What would you want if you were in his position? I know I would not want to drag out this miserable condition, and one of the first decisions my husband made when he was diagnosed and knew what was in store was 'never a peg tube'. He can still eat well and enjoys his food, though frequently chokes on liquids. Eating is one of his few pleasures, when he can no longer taste and enjoy a meal there won't be a whole lot left for him.

But your dad may not feel that way. It is a hard conversation to have, and it may be easier for his GP, or a Hospice or Palliative Care specialist to discuss it with him.

Nothing about this Pretty Shi--y Palsy thing is easy is it? Take care.

Finoni

Martina ,

My wife has also rejected the intervention of the "tube" ...I have ZERO problems with that choice or enacting her wishes ....She has been diagnosed for almost 3 yrs and had this disease for at least that long prior to formal diagnosis...Let me ask you the question that frees my conscience ...WHY do you want him to keep fighting this torturous battle called PSP. Let him go ...you love him, you give him all the care and compassion that you can every day, yes death is final but this is NOT life as he or you want it ...this is torture for him ...I wish you the very best ...I personally do NOT believe in miracles and neither does she ...we are ok with that.....j

in reply to enzo501

That is a really positive way of looking at it enzo. it is my conscience that I am wrestling with and trying to make the right decisions all the time. Thank you.

Just waiting for peg op for my hubby. I think that DNR is slightly different to helping your dear mother maintain her strength to fight this horrible disease. DNR is usually about resuscitation when they are about to die. Just my opinion. God bless you and help you come up with an acceptable answer for you to your mothers dilemma. Marie

My dad had a stroke and although he can move his arm and leg he was having problems swallowing if given more than a few drops of water. In addition he was not able to wake up enough to try something like applesauce. He's had no food for 11 days and very little for 3 days before that. We decided to put him on hospice care 3 days ago and since has only had mouth swabs. I hate seeing him this way but we know he wouldn't be happy with a peg. And if we tried it he wouldn't want to go through all the therapy for speech and swallowing to get back to eating solid food if that is even possible. What I'm trying to find d out is how long have your loved ones lasted once they stop receiving food and fluids? This is very hard on us. I cry all the time but try to be strong around mom. It gets harder every day. Although I feel it's the best thing I worry maybe it was too early even though it was suggested by doctors. He's 80 years old and shouldn't have to go through this. Like someone previously posted we treat pets better than our loved ones. No one should suffer through any illness.

Its so hard Lucy isn't it. I agree that we wouldn't treat pets like this. It is truly heartbreaking to watch loved ones slowly pass away. I am sending you a big hug, my thoughts are with you.

My mum lived using a leg for three years. . At least it can keep the worry of dehydration away ,, palliative care is not dor for the ones dying .

I thought it was was but John has had it for at least a year .,

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