hospice

  1. 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...
  2. 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...
  3. 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...
  4. T

    Getting Help, Caregivers

    We have a mix of ways that we have help. I thought I'd share them. I'd also be interested in hearing your ideas. For reference, my Dad is mostly immobile now, (diagnosed the end of 2018.) All transfers are with a Hoyer lift. He does get transferred to a commode or his PWC, (mostly if we're...
  5. B

    MIL Diagnosed

    My MIL started showing symptoms in June 2018. It started with back pain and slurred speech and progressed from there. In August she needed a cane to walk, and by September a walker. We had began seeking answers from her PCP and a Neurologist who couldn't give us any answers. The only thing...
  6. chally

    Hospice denied

    Found out yesterday from pcp that hospice denied me. Reason given, they saw me at a movie and I was laughing! Hey I couldn’t help it, it was Will Ferrell’s and John C.Riley in Holmes and Watson! Not kidding about this Chally
  7. C

    Digestive issues help-baclofen

    Over 2 years into this disease, and one of my husband’s big problems has been abdominal cramping, bloating, diarrhea, constipation- you name it. Hospice has recommended everything you can name. Not much helped. Each day in mid-afternoon, he would get abdominal cramps and just feel awful. He...
  8. R

    Sharing the road

    My Pals started a downward spiral 30 days ago. Could no longer talk, appetite diminished, slept 14-15 hours at night and often a long nap in the afternoon. I asked twice if she wanted our granddaughters to come decorate for Christmas and never got a response. I had them cone out anyway and she...
  9. Chincoteaguer

    Started the morphine

    Started giving Sibyl morphine @ 4pm yesterday. Instructions say 0.5 ML every 4 hours but I waited until 3:30 this morning for the second dose. Also giving her lorazepam after discussing with hospice nurse. She is resting comfortably but very shallow breathing. Thru the tube the morphine...
  10. Chincoteaguer

    Sleeping and tube feeding

    Sibyl has been sleeping a lot these past few days and definetly losing her concentration - she picks up her white board and magic marker and then just lays them on her stomach, etc. I have been letting her sleep thru her feeding times and when she does wake up she will only let me feed her...
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