Hello to all! We have found out that my loved one is past the stage of being able to have a PEG tube put in. We have spoken of making this decision almost a year ago however because of her prolonged decision making it's now too late. I told her all the long if you want one we need to do it that was about 3 months ago. She still makes her own decisions even though the doctors have explained someone else should be making decisions for her she refuses to give up the control. I allow her to make her own decisions because she is so quick to blame and shame people if something goes wrong. She can have the tube that goes straight to small intestine but she most likely wouldn't survive the surgery required. She has lost another 20 pounds in a little over a month. I'm sharing this because o know so many are on the fence PEG or no PEG. She always said if it were life or death she would do feeding tube. I feel relieved she can't have feeding tube as she is down to 82 pounds from 165 in the matter of 8 months. But this disease has made her someone none of us recognize. I know the final days are here she has had all the signs for a few months now. But this last week very weak and not retaining the food we try feeding her. So if anyone is considering PEG make sure your loved one knows to do it before it's too late. Have a great day all.
Making decisions : Hello to all! We have... - PSP Association
Making decisions
So glad you didn’t have to make the decision it would be so hard I have heard it’s a horrible thing my husband won’t be having it even though we haven’t talked about it but the only thing he enjoys is his food as hard as it is with Being on a soft diet he has been through enough with this PSP for 8 years I couldn’t watch him suffer any more if he can’t eat I guess that’s it !Please don’t feel bad it could be worse after the surgery ? More painful memories
Hugs to you x
Yes I've heard it would be worst then helpful. And yes to prolong her struggles isn't healthy for her or her care givers. Sorry your on this journey with your husband. Huga and strength to you.
It is hard, very hard but having a PEG will not alter the eventual outcome. My Mary accepted this and when, her time came, passed away peacefully in her sleep. The end of life support and cocktail of drugs administered by an automatic driver ensured she had no pain, anxiety or distress. Before that stage the drugs used to reduce these symptoms can change her personality and you, as her closest friend will take the brunt of this personality change. I wish you luck and offer my support at this horrible time. Rob
Thank you so much...yes the people closest to hear get the blunt of her personality changes.
Hugs and prayers.
I know many patients with PSP decide to not have a peg, but I thought I would let you know our experience. My husband was very sick with aspirated pneumonia almost 2 years ago. At that time, he chose not to have a peg, but before he left the hospital he changed his mind with my encouragement. I believe it was the best decision for us. A couple of months later when he had entered the hospital again with a bladder infection, he talked the staff into letting him eat after I had left for the night. Ever since then, he has had aspirated pneumonia a few times and during that time, he has feedings through his peg but when he recovers he goes back to eating.
Also, he has been on hospice care for almost 2 years. The hospice staff, doctors and I have all explained to him the danger of eating but he continues to eat when he can, which is most of the time. If I notice he has trouble swallowing when I feed him I stop. He eats regular food most of the time.
A little funny story, I was outside watering the plants when I heard him call me. When I asked him what he wanted, he said, don't you know there's a human being in here that needs to be fed! I was feeding him at the time through the peg because of swallowing issues but I did give him some toast dipped in coffee.
I believe this was
the best choice for us as during these two years we have been able to go out to eat, visit with friends and spend time with family. We have three children, 10 grandchildren and seven great! I have taken him to respite care a few times and he is there at this time. The last time he was there in March he weighed 135 lb and I am sure he weighs less now. He does sleep most of the time now, but like I said, this was the best decision for us.
We live near Rochester Minnesota and hospice has been great. They have provided a hospital bed, a lift, medications and other supplies that have enabled me to take care of my husband without any other outside help.
I don't know how much longer my husband will survive but I've been very thankful for the last 2 years. I thought I would just pass on our experience with using the peg.
Good luck to everyone out there! This is a tough journey!.
Renee
Thank you for sharing your story. Yes she constantly tells us how important it is for her to eat even though we feed her she likes to pile food up in her mouth which has caused her to choke her recently. But I've told all her help to only feed as quick as she can swallow it. I believe if it were placed the peg before she got so small it would of been great. But she truly looks like a skeleton every bone is visible and hernea in abdominal area. We write down what she intakes with every shift so we have a idea of what she is eating. As she loves to blame everyone for starving her. Si sad what this disease does to people. Best of luck to you and your husband on this journey.
Wise words. We were told that if Mum wanted a PEG, she should have the operation whilst she was still reasonably healthy, so she would have a good chance of recovery. Mum was adament she didn't want one & thankfully never wavered from this, as it would have been very distressing if she had changed her mind once she was frail as the chances of success become so much lower.
Absolutely however doctors here told.my loved one when she was ready for one she could get it. I told her that there will come a time when it's too but she listened to her doctors. So now she is so angry because she isn't a candidate for one. This disease bites!! Thanks for your story sharing
That's sad, I'm sorry
End of life
Your Opinions Matter 
Kathy is near the end of her PSP journey
