Recent content by SLAUGHTER1555

  1. SLAUGHTER1555

    PALS Trouble with breathing oxygen in blood good

    Thanks for responding so fast and that makes so much sense. I know how the bipap work but he has stop using it and won't say why smh. It's in his closet i told him his breathing is being affected cuz he's not using it. Sad part is not sure the nurse's are unaware of this i tried to explain...
  2. SLAUGHTER1555

    PALS Trouble with breathing oxygen in blood good

    Hi Cals and Pals its been a while and since the diagnosis last year things have been horrible:( one thing after the other. So during all this i have hurt myself mainly my back to the point i could no longer care for my Pals i had to place him in a care facility😞. This has been one of the...
  3. SLAUGHTER1555

    staying home / working outside the home

    When my PALS was diagnosed i was able ro work for a while but as ALS progressed i was using more fmla days. I am a school bus driver so i learned fast i could not drive and care for him too. I left work For one year as things progressed still. It was just me no real help i hurt myself constantly...
  4. SLAUGHTER1555

    Feeling overwhelmed

    For my PALS and me hospice was a God send they helped me so much with so many services even to where we are now. They took alot of the burden of caring for my PALS off me. They came every day if needed any hour of the night. My PALS has a catheter which can be a really good thing. There can be...
  5. SLAUGHTER1555

    Feeling overwhelmed

    Hi sorry you're going thru this. Everyone's experience is different because each PALS progression is different. So in my journey with this unwanted intruder is medicare in our state suck and my PALS in his healthy state before we met set up his medical insurance for basic so it does not cover...
  6. SLAUGHTER1555

    Which is worse Living or Dying

    Hi and yes he can communicate but its hard to understand him. He can text with his thumbs on his phone and i downloaded a speech app on his phone as well. Sometimes he moans because he's cold and gets chills a lot. Neuro said its due too muscle mass loss.
  7. SLAUGHTER1555

    Which is worse Living or Dying

    Yes he van communicate im the only one that can translate most of the time because you cant understand him. He denys so many things when i ask him what's going on so its hard to tell at times.
  8. SLAUGHTER1555

    Which is worse Living or Dying

    Hi every ones so my PALS had 6 clots in his right leg which is his worse side. They started jim on heparin drip but Hospice could not administer it in the impatient. He's back at impatient unit on other blood thinners. We spent 2 nights in the hopsital and that wore me out. Overall he's doing ok.
  9. SLAUGHTER1555

    Which is worse Living or Dying

    Question is blood clots associated with ALS? My moans alot and grunts all day even when he's sleep. Is this part of ALS too? I ask constantly is he ok is he hurting he says no. I feel so helpless watching him smh anyways won't start my sad song again.
  10. SLAUGHTER1555

    Which is worse Living or Dying

    Thx every one for your kind words and experiences i dont feel so abnormal now. So my PALS is in hospice as an impatient waiting to be placed in a care facility. Before arriving to this point i have done everything humanely possible to care for him and keep him home. I have hurt my back so many...
  11. SLAUGHTER1555

    Which is worse Living or Dying

    Thx its nice to know im not the onky one ro have thought this way. I tey not to feel bad but then im like see saying that about him it could be you smh then i really feel bad.
  12. SLAUGHTER1555

    Which is worse Living or Dying

    Hi CALS and PALS its been a While since I've been on the forum and alot has happened. Its been a lil over a year since my husband's Dx and the stress of caring for him has been enormous. I wont even begin to about the Finacial stress we have endured. And medicare OMGOODNESS absolutely...
  13. SLAUGHTER1555

    Tired and Broken

    Its been a while since I've posted on the forum and lots has happen. I absolutely hate ALS!!!!!! This has been so brutal on us both to the point i cant even care for him anymore i have hurt my back so bad i can barely walk and move. We've called in hospice to help. It has been 1yr since this...
  14. SLAUGHTER1555

    Hospice...how to know when it's time to call?

    Hi everyone i just called hospice in this week because it has gotten hard for me to care for my Pals his FVC last checked was 43 percent he has no feeding tube and he still eats regular food but very slow. His saliva has increased and choking has increased. He was not thrilled about hospice...
  15. SLAUGHTER1555

    Things I miss...

    Hi Buckhorn thanks and you know i try to do all those things but i am so consumed with caring for my PALS and his needs and all the things that go along with the disease i feel more like a care giver than a wife. I try to make things as normal as possible but it doesnt work hes so stiff his...
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