PSP Association
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Speech therapist visit.

Posted yesterday about my sister Rose being a bitchesty and doctor and speech and language came today, s&l have said Roses's swall9w is at risk and said we have to decide what next stage is. Rose stated when she could communicate. That she did not want a peg, so we are going down the road of comfort feeding, hope it is the right decision, I still think she just does not want to eat as she does not open mouth.would be glad of some opinions.

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I would try soft or pureed food. I know brian eats better now he is on a pureed diet. But he still prefers sweet stuff and will eat more pudding then dinner. Janexx

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Thank you she is on a soft diet at the moment so now nursing home is going to do comfort feeding which means they will only feed her soft food which they know she likes and withdraw if she is not responding and not swallowing, we are going to sit Dow next week with her unit Manager and the Parkinson's nurse it is so sad and in a way I think she has given up. Hope Brian is doing o.k. Are you in the U.K?

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Yes we are in essex. He is a bit chesty but we are used to that now he has a chest infection about once a month so we are now waiting for an appointment to see about having the peg fitted. He does sleep a lot because every thing tires him out even eating but when he is awake he can still converse so thats a blessing. Janexx

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We are in Scotland Lanarkshire just outside Glasgow,That is good you can still converse, Rose can't talk at all now very occasionally she will say something .Let me know how you get on with decision on the Peg. Don't think well I know we won't be doing it for Rose as it was her wishes, this site is so helpful thank you for getting in touch, take care. Sorry, is Brian still at home with you?

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He wants the peg so I will support him in his decision. Yes he is at home and we have 1 carer in the morning to help me get him up and we have 2 carers at night to put him to bed but I see to him the rest of the time. Pad changing and putting to bed for a sleep etc. Janexx

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Aw!! A lot of work I unfortunately Rose had to go into care she was in sheltered housing,(independent living) but set her hair on fire with a cigarette! And after that she could not stay on her own, she had carers in the morning to get her up and in the evening to get to bed but if they were two minutes late she would pull the emergency cord! She was very lucky to survive the burn and her hair grew back again. Take care and thanks for listening!xx

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SORRY BOTU YOUR SISTER SAND HER CIGGY

BURN

LOL `JILL

:-)

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There is also liquid food specially produced for people who have swallowing difficulties and almost certainly available on prescription in the UK (it is in France where I live); my wife used a wide straw to drink it, or a plastic beaker with one side cut away at the top to make space for the nose.

Christopher

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For what it is worth, I think you are doing the right thing. Refusing to eat is one way people can be in charge of their fate, so just encouraging someone gently to eat, offering comfort feeding, as you say you are doing, seems to be respectful and sensitive. I can't see the point in forcing nutrition on someone in the later stages of a terminal illness, and hope I would be permitted that one last choice if it were mine.

Please know you are in my thoughts, dear nannygoon. This is such a hard time for you, and I'm very sorry you and your sister are going through this. She is lucky to have such a loving sister.

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Thank you for the lovely reply. I am feeling a lot better about it all now and the comfort feeding is the best option.xx

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My dear wife just stopped eating and I think she was tired of being beat down by PSP. We kept her comfortable and she passed away within three days. There is an excellent video about PEG on the USA site CurePSP.org It gives both sides of making the decision as well as the details of what is done etc. etc.

Jimbo

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Thank you Jim so much, I am definately not getting the peg for her and I had a good think last night and I do think she has stopped eating because of the psp and am glad the home is going to comfort feed her. I spoke to them today and she was coughing quite a bit on waking this morning, but they have only offered her blended food. I think we might be facing the end now so I will just pray for a peacefull ending for her.kind Regards Margaret in Scotland.

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At the end of the day it obviously has to be the patient's decision whether or not to have a PEG fitted. One point I should like to make is that, if a decision is taken to have one fitted, then all concerned must try and agree when it should be removed. This can be a very difficult decision to make if it is not taken at the time it is fitted; it represents a positive move to signal the end of someone's life and it is also quite likely to be taken at a stage when the patient can no longer communicate their own wishes. In the case of my brother-in-law, I think it was the right decision at the time some four years ago, but for the past two years he has had no discernible quality of life and no-one feels able to take the decision to have the PEG removed as he appears most of the time not to be in pain. His wishes are unknown. The trauma for all concerned (including I suspect my brother-in-law) during his very slow decline is very considerable.

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WHEN Y HUSBAND WOULDN'T EAT I WOULD CRY HE WOULD SEE THAT I WAS IN PAIN AND HE TAKE MY HAND AND KISS IT AND SAY I'M SORRY ,HE HAD PD THANK GOD .IT WASN'T PSP..... DO THE BEST YOU CAN FOR SISTER. DOES SHE HAVE A FAVORITE RELATIVE OR FRIEND THAT COULD VISIT HER THAT MAY HELP CALM HER &MOST IMPORTANT GIVE YOU A BEAK???????????? YOUR FRIEND GENA

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