Good evening all, my grandpa was diagnosed with PSP 7 years ago. Over the years his mobility, speech and numerous other things have been affected, although he has always enjoyed his food. He has been on a soft diet and thickened liquids for the past few months that has definitely helped with coughing. Over the past 3 days he has started to refuse both food and drink as he wont swallow. He is now bed ridden as he has lost all mobility and speech has completely stopped. He refused to be peg fed when completing his care plan a couple of years ago and to be honest my mum and I are at a complete loss at what to do next for him. All the right support is in place but would just like some advice on what other people have done for loved ones when in this situation.
Grandpa refusing to eat and drink - PSP Association
Grandpa refusing to eat and drink
Just be there with him, tell him you love him and he’s free to leave when he’s ready. X
Hi Darcydoo1, this is the hardest time approaching for you all. Contact the Hospice or the District Nurses' palliative care teams for advice. This is what I did when my wife (PSP) reached this stage. All my very best wishes to you all at this difficult time. 🙏
Just be there for him. He will know that you are there loving him and tell him that it is ok and that you will be ok. I hope that you have the Palliative Care team involved even if he is not in hospital. Lots of love
Hi there. This is something I may do when I get to this stage. Like anorexics, this appears to be the only control we have as PSP sufferers. I wish I could say different, but this seems to be your dad’s way of taking control and ending his misery. He’s being very brave as it’s not an easy way to go.
It may be that he can't anymore- not that he's choosing not to. Definitely get the palliative care team involved. They will ensure he is comfortable.
hi Darcydoo
I feel maybe that it’s not that he won’t eat he sounds at the stage were he can’t eat just to difficult to swallow …. your grandpa sounds exactly the way my dad was my dad passed away in June and when he stopped eating and drinking we gave him little sips of juice through a 5ml syringe , we gave him jelly aswell as that slides down even though it was still really hard for him to swallow and still worried me he would choke on it but we felt cruel not trying something no matter how little …this went on for approximately 2 weeks and then he became free from this horrendous disease, if your grandpa is totally refusing anything it sounds like he’s had enough and then you just need to be with him hold his hand and tell him it’s ok … please if you haven’t done so already get palliative care involved they were amazing, with there help dad was able to be at home when he passed , my dad also refused to be peg fed which now I’m glad about as that would have just prolonged his suffering ..
Stay strong
morphine is really bitter, but we began using it in drops under his tongue when my guy stopped eating and drinking. He wouldn’t take ice chips. We had sponges on sticks designed to clean and soothe his mouth. He let me know when he wanted to stop.
play music. Hold his hands.
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Has anyone had experience of using any electronic communication methods to convert typed text to speech?
Information needed please!!!
