PSP Association

How much more can he take

Richard has been deteriorating lately. So glad he had the peg in. He still eats blended food but only small amounts and sometimes he doesn’t want that. He is sleeping a lot. At first it was that he couldn’t keep his eyes open but now he is a sleep. He used to laugh at anything but I haven’t heard him laugh for quite a while. It will be 5 years this December when he was diagnosed but he has shown signs of it at least 2 years before. When will it all end?

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NannaB

5 months ago

10 months after my husband’s PEG was fitted he decided he had had enough and indicated he didn’t want to be fed any more. If Richard still has means of communication he may make that decision. My husband started getting agitated when I fed him and fiddled with the tube. When questioned he was able to put his thumb slightly up for yes and tucked under for no. He had been diagnosed for 6 years. We never regretted having the PEG fitted as when he died he had no infections, not on any medication, skin like a baby without a blemish and he had no pain. Until 3 weeks before his death we were still taking regular trips out to the coast, parks etc with him putting his thumb up to say where he wanted to go. If he had continued to be fed I think he would have lived much longer but he was determined to go and refused to swallow food, holding it in his mouth until it tricked out.

Like others, he had an amazingly peaceful final 11 days.

I hope Richard’s departing, whenever it may be, is painfree and peaceful also.

XxxX