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  1. Chincoteaguer

    The girl of my dreams

    I found this yesterday in Sibyl’s papers. I’m sure she intended that I find it after her passing. I think it worth sharing as we have shared our journeys with ALS. When I am gone, release me, let me go.... I have so many things to see and do... You mustn’t tie yourself to me with tears... Be...
  2. Chincoteaguer

    The girl of my dreams

    Thank you all for your kind words. This forum has played a very important role in my experience as an ALS caregiver. Sibyl and I had a wonderful life together even with the last three years of medical challenges including this beast ALS. The memory of our time together will sustain me until...
  3. Chincoteaguer

    The girl of my dreams

    Sibyl passed away at 12.20 am today. I hope to post a more appropriate memorial on the forum at a later date. She was truly the girl of my dreams. As I often told Sibyl, I loved her long before we met. I was lucky to have found her. Ernie
  4. Chincoteaguer

    Started the morphine

    It has been a difficult 24 hrs. Upped the morphine dosage with little effect so stopped and started the Lorazepam. Resting now with short episodes of air hunger and whimpering. Neither the morphine nor the Lorazepam has lesson these brief interludes. My oldest D (25 minutes away) arrived...
  5. Chincoteaguer

    CALS Roll Call Continued

    Thanks Mary; We are now using morphine so Sibyl is very comfortable. We are also using Lorazepam. Ernie
  6. Chincoteaguer

    Started the morphine

    Thanks Wish; We are at peace with this part of the journey. Family and friends, even past caregivers have made the visit recently. I am doing better than I expected and thank you for your concern. I have been blessed with a good gene pool and have good health which has been a blessing. My...
  7. 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...
  8. Chincoteaguer

    CALS Roll Call Continued

    Thanks Laurie; Very good advice. Fortunately, the virus seems to have run its course. No leakage this am's diaper change. Actually had a somewhat firm stool. Although Sibyl does not take anything by mouth I have been giving her shaved ice frequently. Some or most of the melted water gets...
  9. Chincoteaguer

    CALS Roll Call Continued

    Catching Sibyl has a stomach virus. Her best friend and out neighbor past it on while visiting last week. At least that is our theory. It's frustrating that even though we caution folks some do not understand the need to be careful. This virus causes an almost steady bowel leakage along...
  10. Chincoteaguer

    Sleeping and tube feeding

    Life as a CALS would be hell on steroids without this forum. My best to all. She just woke up from the 5pm nap. Gave her some Trazodone, water, and Jevity. Although she is making noises on each breath she seems to be resting. The noises usually stop after 30 minutes or so. Vincent; We...
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