Gastrostomy

[Dend88]

My mother is suffering from PSP for last 6 years. She has already lost most of her abilities due to disease. Last October, her doctor prescribed to instal gastrostomy. It was great idea, since she has been loosing ability to be eat via mouth.

We installed one type of gastrostoma, then another, after some time. Now it is closer to catheter than to gastrostomy. We feed my mom with special liquid food from drug store which called nutrison. I really thankful to our doctor , that she advised us such a great tool.

I would have been suffering too much if my mother passed off just because we can’t feed her.

I see a lot of stories, when people decide not to use gastrostomy due to different reasons.

Honestly it is really strange for me. Why people don’t use such opportunity to extend Life time of their loved ones.

Sorry for my poor language, English is not my native language.

I read you public, since we don’t have the same public in my country.

[Zerachiel]

Hi Dend88

For a lot of PSP sufferers loosing the ability to swallow comes late in the disease when they have already lost so much control over their body their quality of life is very low and having a feeding tube will only prolong the suffering.

PSP does not always progress like this, my wife is still mobile but her eyes are closed most of the time, she cannot speak and struggles to eat. She has just had a feeding tube as she can still enjoy living and watching her children and grandchildren grow up.

There is an interesting article here which sums up why some people choose not to have one.

dailymail.co.uk/femail/arti...

[AJK2001]

Everyone is different. People develop the disease at different ages and it progresses in different ways. So please don't judge people because they deal with the disease in a different way than the one you choose.

My Mum was in her 80's and was very clear she didn't want a PEG. It would have been wrong to go against her wishes and extend her life in a way she didn't want, with very little quality to it. Sometimes you have to be brave and let go for the sake of the person suffering from the disease.

[Indiana-Girl]

good morning! I am sorry for all of us who are dealing in some manner with this insidious disease. My husband is entering his 7th year with CBD. He is now unable to sit up without a chair surrounding him, he cannot walk and his speech is almost gone. I love him with all my heart and cannot imagine my life without him. One of the things I have learned over the past 73 years is that love is, above all things, selfish. I cannot imagine MY life without him. I don’t want to lose him. I will suffer. It is all about me! But it is he who is suffering. It is he who is frustrated and sad that he can no longer function. And in reality, being devout Christians, we know that this life is but a bridge to the next where we are promised no more tears, no more sorrow and pain. Why would I keep him here, suffering and losing more and more? For him or me? When he leaves me, he will touch the face of Jesus and dance with the angels. I will not be the one to slow that reunion for him. We have made the decision that we will not artificially prolong his life through a feeding tube. He will be made comfortable and pain free. Right now, he still laughs and interacts and has a reason to live. When that changes and the doctors tell us we have end of life decisions to make, it will be done. My love for him is greater than my love for me. My love for Jesus is greater than both. That is why I will not allow him to suffer beyond what our Lord has decided.

[Perrywrinkle in reply to Indiana-Girl]

Thank you, IndianaGirl! You expressed my thoughts perfectly.

[JJs2019]

Our situation was dismal. My husband’s GP referred him for PEG, someone at York Hospital decided not to bother, and we were informed of this decision only the day before he died. Health Service ombudsman reviewed and decided no further action. Dismal indeed.