1. M

    No trilogy in hospice

    The hospice org we were going to use has said that they will not support my husband’s trilogy, that they see it as a ventilator. Anyone else run into this roadblock?
  2. D

    Palliative Care

    Does pallative Care, like hospice, disqualify one from Medicare paying for certain items like a power wheelchair?
  3. chally

    Update on Hospice

    Finally got the BS cleared away and now officially in hospice care, morphine, Ativan and all what comes next Got good nurses coming in, got good aides night and day to give Beth much much needed rest. Can’t type my own texts so alot less frequent correspondence , sorry! Things have sped up...
  4. Nuts


    Matt has been gone four months, and it feels like a lifetime. On the other hand, I think I'm just now mourning what we went through. All the losses that I was unable to mourn because we were too busy trying to live--I think they are battling their way out of the box I locked them in at the time...
  5. K

    Thoughts on When to Get Hospice

    My PALS and I have decided to use hospice when the time is right. He uses a Trilogy about 17 hours a day, does not want to be trached or have a PEG. He is able to eat whatever he wants (with the help of water to wash it down), he transfers from scooter to chair/commode but anything he does is...
  6. Lkaibel

    Brian Flies Free

    I woke at 3:00 AM to give Brian his meds to find that he had passed on. I am happy for him that he is free of the body that had become his prison. It was a relief to be able to call hospice and not even have to have them come out. The University of Minnesota Bequest Program was here by 4:30 AM...
  7. D

    Trilogy in Hospice??

    I recall seeing a couple of posts saying hospice is not a possibility if one is on a BiPAP or CPAP. Is that correct.
  8. K

    Optimal living situation- financially, emotionally, spiritually etc

    My pALS is my mom. She is newly diagnosed with bulbar onset ALS. As of now her mobility is not impacted too much, just her speech, swallowing and breathing. We have been discussing living arrangements as her mobility and breathing decline. Other pALS out there, what did you decide? Did you...
  9. T

    Dad Dancing Again in Heaven

    My Dad slipped away peacefully on Wednesday, Jan. 30. ALS took his ability to move, to swallow, to speak, and finally to breathe, but it didn't take his joy or his strong faith. Diagnosis was the end of December 2017, though he'd had symptoms for at least two years prior. Possibly...
  10. K

    Also...Slow or Fast Progression?

    Karen, I must admit I am wondering the same thing...slow, fast, average? I know today is a gift, we should live each day and day by day, but my wondering has to do with decisions that need to be made. My PALS was diagnosed in January 2018 with symptoms becoming very noticeable in August 2017...