Recent content by Chincoteaguer

  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...
  11. Chincoteaguer

    Sleeping and tube feeding

    Thanks Tillie; I have read so much about the agony leading up to the end. If this is the ending I feel blessed. She has had minor anxiety and some twitching and joint pain but overall the issues have been mild. I have stopped all medication: Trazodone, CBD oil. Tylenol but I still give her...
  12. 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...
  13. Chincoteaguer

    CALS Roll Call Continued

    Mary; Sibyl has been getting hot at night and also removes her covers. I have gradually lowered the temperature on the heating system and this morning brought it down again. This has been recent - last 7 days - and I wonder if it indicates some biological change, Cold hands actually bring...
  14. Chincoteaguer

    CALS Roll Call Continued

    Bonnie; Scaling back on Christmas decorations is something I’ve benn advocating to my wife long before ALS. Candles in ever widow including the 4 in the attic; lights around trim of front porch; lights at mail box - 150 yards from house and 4 extension cords; on and on. We also put...
  15. Chincoteaguer

    IMPORTANT 911 Training for ALS - Please Review & Comment

    Greg I’ve posted about this before. Our experience with 911 is from a different perspective but touches on the same issues. My wife who has lost her ability to speak could not effectively communicate with 911 should I become incapacitated and need emergency attention. We learned that...
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