my first post here

[Dpriy]

Hi everyone,

Glad I found this community where people share their experiences which are very useful to others who are going through the same path. Myself and my mother are the caretakers of my Dad who is going through this horrendous disease PSP for the past 5 yrs. His disease worsened after his covid early this year. Now he is going through severe dysarthria and dysphagia. Too much of coughing and growling while eating.He is still not accepting the disease. He is not letting us to administer feeding tube. He becomes aggressive and removes everytime we try feeding NG tube. Kindly advise.

Daisy

[LuisRodicioRodicio]

Hi Dpriy!

I'm sorry that PSP has entered your lives.

Through the internal mail of this chat I send you the information that I have and perhaps it can be useful to you.

Hug and luck.

Luis

[Dpriy in reply to LuisRodicioRodicio]

Thank you so much Luis. That was a lot of information . I will surely go through that.

[Birdman42]

Hi Daisy. My wife has PSP and is now approaching the end of this horrible disease.  One of the enduring discussions on this site is should you have a PEG/feeding tube fitted or not - it is sometimes simplified to quantity of life over quality of life.  A PEG/feeding tube will undoubtedly extend the life of the PSP sufferer and make the careers work easier but it will also extend their helplessness and suffering.  As we know this disease has no cure and no remission, do you need to ask yourself if your dads actions are his way of accepting the disease and telling you he’s had enough and wants to take control.  It’s horrible loosing a parent but we must remember that ultimately the decision must lie with the sufferer and we must respect that.  To finish my wife, who I have adored and respected for 60 years, made the decision early not to have a PEG fitted and stuck to that decision every time she was asked.  She now cannot swallow any food and is therefore slowly starving to death, it’s horrible sitting beside her watching this happen but it was her decision and I can only respect that and carry out her wishes.

Daisy think carefully about what your dad wants not what you want.  Be good and kind and do not beat yourself up.  All the very best Alan

[Dpriy]

Dear Alan, I am so thankful for your reply. First of all your ideas just resonates with mine. It makes real sense to listen to the sufferer and taking decisions based on their wish rather imparting ours. I am already convinced on that part and keep moving on. But sometimes our relatives and friends gives horrible suggestions like forcibly administering NG tube tying hands with hand cuffs and those stuffs just leaves me exhausted. But after going through so many posts from yesterday I am Convinced it is nothing wrong listening to my Dad.I should respect his decision. Yes that is very heartbreaking to see him starving.He is now taking half of the food he normally used to take . I tried discussing about PEG but he is not ready for that too. So finally I am accepting the fact that it is his decision. It gives me real solace getting such sensible advices and suggestions. I appreciate it. Thankyou.