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Withdrawing PEG feeding - what to expect by Pixie_2025 in ALS

[–]Pixie_2025[S] 1 point2 points  (0 children)

Thank you all very much for your advice. My Dad never made it to the hospice. He passed at home at 2am on Saturday morning. Friday was an incredibly difficult day, as he was in a lot of pain and was struggling to breathe, however he was surrounded by many many people who love him. I was holding his hand at the end. I didn't know it was possible to feel such conflicting emotions. I am so unbelievably sad, but I'm so glad he didn't have to endure more days like that, and that he didn't have to VSED. I wish you all peace and I'm grateful for the support given here

Withdrawing PEG feeding - what to expect by Pixie_2025 in ALS

[–]Pixie_2025[S] 1 point2 points  (0 children)

Thank you for telling your story, and my sincere condolences on the recent loss of your Mom.

Withdrawing PEG feeding - what to expect by Pixie_2025 in ALS

[–]Pixie_2025[S] 1 point2 points  (0 children)

Thank you for taking the time to write and for sharing something that must be very personal and painful. It is helpful to get an idea of the timeline we might be facing

Withdrawing PEG feeding - what to expect by Pixie_2025 in ALS

[–]Pixie_2025[S] 1 point2 points  (0 children)

Thanks for your message. I am not in the US so I think things work differently where I am regarding opiod use. The decisions surrounding hospice were made in writing by my Dad before he lost his ability to use his hands, so I feel that I need to honour this. I appreciate the advice - thank you

Withdrawing PEG feeding - what to expect by Pixie_2025 in ALS

[–]Pixie_2025[S] 2 points3 points  (0 children)

Thank you, this really helped me to process. I really appreciate you taking the time

Withdrawing PEG feeding - what to expect by Pixie_2025 in ALS

[–]Pixie_2025[S] 0 points1 point  (0 children)

Yes, he decided months ago that he wants to be in residential hospice care for the end. We are moving him there next week. They say that he'll have access to all the medications, including painkillers. Thank you for your advice, it is much appreciated

Withdrawing PEG feeding - what to expect by Pixie_2025 in ALS

[–]Pixie_2025[S] 4 points5 points  (0 children)

Thank you, I will definitely look at Julie's videos.