PEG tube

[Blueclouds07]

My mother is getting more progression of the disease , she has malnutrition and her doctor is suggesting a PEG tube or a feeding tube. Did anyone passed the this phase?

[AliBee1]

Hi, I am sorry to hear that your Mum is suffering more from progression of this awful disease. With reference to the 'peg feeding' my husband did not wish to have one of these as he did not want to have his life prolonged when he was becoming so incapacitated. I know several people who have also made this decision so it is probably best to listen to what your Mum wants rather than the doctor. My heart goes out to you. Good luck with what ever decision is made. Love AliBee xxx

[Blueclouds07 in reply to AliBee1]

Thank you AliBee1 and its true its very awful disease but the problem my mom is not communicating with us I tried to talk to connect with her by any mean but she is not responding really dont know what to do.

Thank you so much

[AnneandChris in reply to AliBee1]

Like AliB's husband, mine did not one either. He was persuaded by a dietician, but then cancelled the procedure. It is a difficult decision, which if you can get some indication from your Mother, a hand squeeze, nod or thumbs up, would help. Please take quality of life into consideration.Hugs

Anne x

[Blueclouds07 in reply to AnneandChris]

Thank you very much

[MRSYafffle in reply to AnneandChris]

This is where we currently are, the dietician has convinced her but my mum has said no so many times I think she'll cancel when we get to it. Unbearably sad, this condition. Take care everyone on this journey or been on this journey. ❤

[AnneandChris in reply to MRSYafffle]

Please, please listen to your Mum particularly if she's saying no. It's so hard, I know, but in the end it is her decision, especially if she still is cognitive. There are pros and cons but I wanted what my husband wanted.Keep on keeping on. You are amazing.

Hugs

Anne x

[MRSYafffle in reply to AnneandChris]

I have done but they wanted one last discussion and she surprisingly changed her mind. I will obviously do whatever she asks, I'm worried for both outcomes. It's difficult tobhave a full conversation as she can only say yes or no or hand gesture.

[AnneandChris in reply to MRSYafffle]

Will be thinking of you x

[MARKJ9]

PEG tube might prevent choking on food and food getting into the lungs causing pneumonia. As you mention, it is a phase. As the brain deteriorates, the movement of food though the alimentary canal will slow down or stop. PEG tube will give her some temporary relief. We didn't do it for my father. The disease progressed too rapidly for him.

[Blueclouds07 in reply to MARKJ9]

Thank you so much

[Kasenda]

My husband has had the PEG tube for 3 years now. He wanted it at the time and it has given both of us a better quality of life. No more choking and urine infections. He could still eat with it until this year when the swallowing got worse.

[Blueclouds07 in reply to Kasenda]

Sorry to hear that

Thank you

[lesauerbach]

My wife had a feeding tube for two years, and I'm so glad we had those two years together.

[Cello8274]

This is a tough decision. I am a carer for a dear 77 year old woman who was losing weight at a rapid rate. She has had PSP for 7 years. Yet she was still was at a place where she could enjoy certain things in life and she wasn’t ready to give up. We viewed a few videos on YouTube so she could see people who had them and what it would be like. She decided to get one last month snd even in that short period of time she has gained some weight back, along with a measure of strength and energy. Even her speech has improved a bit. The deciding factor for her boiled down to this: is the quality of life she has now worth preserving? For her, it was yes. I hope your mom can give you an indication of what she wants. God bless you as you care for her.

[roseopsp]

My wife has decided against one, and I'm glad she reached that decision. It would only extend a quality of life that is not good for her or her loved ones. Also, the patient can still choke on their own saliva.

[Stephanielayell82]

As others have said it's a personal decision...and unfortunately with the lack of being able to communicate ask the doctors how they would get her to respond yes or no because she would have to let them know her decision. For some they have had great experiences and others have regrets of doing it. Your Mum needs to know all the facts and sometimes doctors don't give them all the information to make the best decisions for theirselves. Best wishes on this journey of this wicked disease.

[Birdman42]

This is a hard one for a carer should you respect your loved ones wishes and watch them die knowing you could have taken a decision that would have prolonged their life. My Margaret has made the decision not to have a peg fitted, I know this will shorten her life. I hope I have the courage to accept the wishes of the person I have respected and loved for almost sixty years when I see her choking on her food and drink and wasting away. All the very best in your deliberation but please try and respect the wishes of the victim of this awful disease.

[mjtogether]

Early on, my husband elected not to have a feeding tube. A person can still aspirate into the lungs even with a feeding tube and still lose muscle mass. Plus he said if it got to that point in his life he would probably have other issues (which he does, especially mobility, eyesight, incontinence and unable to carry on a conversation for very long) and the feeding tube would not fix those and just prolong his non quality of life. Luckily for me, he made that decision; even to our drs. Everyone has to make an individual decision...do your own research but if you Mom is capable, let her choose.

[doglington]

Like others my husband made the decision not to have a peg well before he lost the ability to communicate. It depends upon the quality of life. For us it was clear that it would only prolong a poor quality. Its so hard even when all agree with the decision. Jean

[LaCrosse87]

After dealing with a parents death, we decided to get our affairs in order in the event anything happened to us since we have school age kids. We had everything put in writing by a lawyer, Both of us agreed that we would not want any machines or feeding tubes to stay alive.

Not to long after that my husband was diagnosed. He is still functioning on his own today and has not changed his mind. I plan to honor his wishes when the time comes and I know he would honor mine.