Recent content by NothingButLove

  1. NothingButLove

    My heart is broken, but he is free

    May you and your family find peace if the coming months. Rob
  2. NothingButLove

    Kay is flying free

    All of my love to Kay's husband Rob and the rest of the family. That was a beautifully written obituary. May we all find peace in the future. Goodbye Kay... Rob
  3. NothingButLove

    Hold on Tight...

    Concerning tapering off food and water... In the couple of weeks leading up to my wife starting VSED, there were some days she didn't feel like eating. I encouraged her to eat which I think was a mistake. Why did I do it? 1) Foolishly hoping she would change her mind. 2) I wanted every last...
  4. NothingButLove

    Hold on Tight...

    Lenore - Just wanted to say you and Brian are making all the right decisions. Tapering off food and palliative sedation is the way to go. Having no previous experience, my wife chose to be awake during the process. Also, she basically went from fully eating and healthy to VSED. She wanted to...
  5. NothingButLove


    From the article, Liz sounded like a wonderful person. I communicated with her a few times in some threads. I wish her family and everyone around her all the best. Rob
  6. NothingButLove

    Hold on Tight...

    "wellspring of trapped sad angry frustration" What a great description. Sadly, I know exactly what that is in the context of being a caregiver for someone with ALS. It's when the combination of stress, depression, physical fatigue and mostly lack of sleep take you to edge. I remember waking up...
  7. NothingButLove

    Kathy's mom

    Sorry to hear of your mom's passing. Getting palliative care early is great advice. I waited a little too long because I felt like it was giving up. A mistake for sure... As Laurie said, we can't let it haunt us. We did what we felt was right at the time. Also, the last days are usually...
  8. NothingButLove

    Dad Dancing Again in Heaven

    Sorry for your dad's passing. May you and your family find peace in the months ahead. Rob
  9. NothingButLove

    Respironics Cough Assist Facemask w/ Hose, Filter, Adapter

    Respironics cough assist large adult facemask with hose, filter and adapter. Part number 325-9217. Brand new, not used. $10 plus shipping. Note: My wife had a very small and skinny face but the large facemask worked better than the small. The wider cushion on the large mask provided an easier...
  10. NothingButLove

    Could Familial ALS be eliminated?

    I've been meaning to bring this up for a while now. It's an interesting subject. I found this publication from the NMD Association in the UK: Inherited MND: Options when starting a family The UK government seem to be promoting, offering or at least educating people about what the OP...
  11. NothingButLove

    3 months later

    Hi Larry, I remember when you made your first post. I really wanted to respond to it but I was just knee deep in everything ALS. I don't know where some of these CALs find the time to post. I find the last ten days which ended with the removal of my wife's mask the toughest part to get over...
  12. NothingButLove

    Brian gained his angel wings

    I wish you all the best. So sorry for your loss. May you find peace in the months ahead. Rob
  13. NothingButLove

    More ash-spreading

    I'll echo what Nina said... Your posts helped me so much during my time as a caregiver. Thank you! Rob
  14. NothingButLove

    Matt is gone

    So sorry for your loss. The whole journey is all such a crazy insane thing. You did an awesome job and your husband is at peace. I hope you're able to find peace in the coming months. Take care. Rob
  15. NothingButLove

    NinaP's Mom

    Wishing you peace in the coming months. Rob