PSP Association
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Difficult decision coming

Hi. I am new to this community but have been reading many posts in search of some insight that may help me in making a decision that is imminent.

My dad was diagnosed with psp I which he had shown beginning symptoms about 4 years ago. He is now 81. He was admitted to the hospital about 2 months ago due to some bleeding in his brain due to one of his falls. At that time we had a feeding tube placed in order to give him some recovery time. As the 2+ months have now passed, it seems as if the damage has fast forwarded the progression of his condition by 1-2 years and subsequently he has not regained the ability to safely swallow. I do have a medical directive stating no artificial feeding so I am fast approaching a decision on when to remove the tube and what to do afterwards. I'm extremely torn. On one hand I see his general discomfort and with a high probability of choking it pains me to even put that risk upon him. On the the other hand, there are visits to the nursing home (where his rehab is taking place) where I see him mentally alert enough to ask for specific foods and adamant in communicating that he can swallow. It seems like an easy decision after each visit but his alertness condition fluctuates day to day so it is a different conclusion after each visit. The nursing home is going to discharge him soon I am soon facing the most difficult decision I have ever faced.

Wanted to see if anyone had experienced a similar situation. Thank you

9 Replies

You may have read some of my previous posts. My husband had a PEG for 10 months and then indicated (he couldn't speak at all) he didn't want to be fed any more. I honoured his wishes and he died peacefully 11 days later. If your dad is mentally alert enough to say he can swallow, could you explain your concern and ask him if he wants the PEG removed, making sure he knows what will happen if he can't swallow. You have the directive for when he is unable to make decisions but all the time he can, I would do as he wants. Obviously I was sad at losing my husband but I have no regrets about stopping his nutrition as it was his decision, the first important decision he had been able to make for a very long time.

Right up to my husband's decision, he could still swallow yoghurt consistency food so had the please of taste but when he decided he had had enough, he refused to swallow and held the food in his mouth until it dribbled out. He knew what he wanted.

I hope your dad makes the right decision for him.

Best wishes.



Hi, as far as I am aware, someone with a Peg, can eat proper food anyway. I know when they were trying to persuade Steve, they said just fluids and his meds could go into by Peg.

Steve never really wanted one, but in his final days did agree, but we were far to late by then. I am very glad we didn't get to have the peg fitted, Steve's body did all the dictating about what would and wouldn't take in. There wasn't much choking, he was more doing hamster impressions, hiding the food in his cheeks, until it finally poured back out. That was extremely hard, but once accepted in the end, it make everything very peaceful.

I would go with your father's wishes, at 81 he has seen and experienced many things and will know exactly what refusing a Peg means.

Lots of love


1 like

Very tough decision. This may be the essential question faced by most of us. I wonder whether they try feeding him at rehab at all? He might well recover a good deal of the ground he has lost over the months in hospital when he is back in his own environment, psp being very unpredictable. If you leave the peg but accede to his requests for food, then he might be able to better decide for himself whether he wants to risk choking. To the extent HE can decide, I imagine that would be best for you both. Love and peace, Easterncedar

1 like

I agree with all the comments, it may be that he has forgotten how to swallow since being put on the PEG. It happened to my dad (different condition but swallowing was an issue he was 80 when this happened) when he came home from hospital he slowly learned how to swallow foods.




It sounds like dad is still pretty lucid I am sure he would have his own opinion on this. Perhaps you should discuss his wishes. Is he eating at the nursing home? In your discussion you need to talk about his ability or inability to swallow ? I really think that if you both talked about it , it would make for an easier resolution....




i agree i hjaVE already decided that i do not want a peg when the time comes

lol jill



as it would only prolong jmy life unnecessarily

lol JILL



Thank you everyone for your responses and well wishes. Just wanted to clarify that one of the more difficult and confusing parts of this is determining how Lucid dad truly is and whether or not he retains the ability to truly make decisions. There are moments where I definitely think so but at the same time, he has had a pretty significant personality change over the last few years and if I had to think about his old self, it's hard for me to see how he would make a decision that was burdensome on himself and others. So I guess I'm saying that even if I asked him, I would still have doubt on either answer he gave me. It is clear from the evaluation of 2 swallow therapists that he does not have the ability to swallow and would have an extremely high risk of choking and/or aspiration.


Keith has declined a peg, he's now struggling to swallow, he's coughing and choking a lot and it scares me to death. All his food is now puréed and it breaks my heart to witness his struggle!

I tend to agree with Jill, a peg only delays the inevitable, someone once told me that his father had a similar condition and he opted for a peg but he said it was only drawing things out longer and his father suffered because of it.

I really don't know what the right answer is, I don't want to lose Keith but I can't bear to see him how he is now, it's a very difficult decision to make and I wish you luck with your Dad....

Love and hugs....Pat xx


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