my darling dad cannot eat or talk now.This is a hellish disease and i intend to give support to all those who may need it when my lovely dad passes away.I am terrified of him having a peg but this is going to be suggested very soon.Ipray to God he will go to sleep and not wake up to experience the full term of this terrible disease.
My heart goes out to you at this very difficult time. The issue of a PEG is a very difficult one. Patricia insisted on having a PEG and that was her right to decide – no-one else’s. But after the event, I wish she hadn’t because it extended her life by about 15 to 18 months and by the time she finally passed away, her quality of life was zero – and had been for some time.
I think if we had BOTH understood the pros and cons of PEG feeding – probably she may not have opted for a PEG.
I suggest that you seek professional advice and have someone consult with both your father and family members re PEG or no PEG. Maybe the Sarah Matheson Trust could assist you in this regard.
I too have MSA. I’m 62 and in perfect health ( except for the MSA ) I have mostly cerebellar. I do not want a PEG tube, ET tube, trache,etc.,etc. I have filled out a DNR and a MOLST form. I certainly don’t want to be a burden to my family and there are worse things than Death