• Memoriam wall
    • We've created a memoriam wall to remember our friends
    • If you know someone that battled ALS, please add them here


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Active member
Sep 18, 2020
Lost a loved one
Hi Laurie - thank you for the thorough response. I’m sorry I’m so delayed in responding to you. Before we could get into the LTAC (due to no beds), he passed away, February 10.

He was still trying to decide on a trach, and leaning heavily against it. After a week in the ICU, I strongly believe they effectively killed him (or at least significantly accelerated his death). I stupidly didn’t know all the overload of CO2 signs, but I think there were a lot there.

They insisted on putting him on their BiPAP even though we pushed back hard. They said it was the only way they could adequately control his O2. I reminded them over and over and over that the bigger concern with ALS was the build up of CO2, but they said their BiPAP accounted for that.

By the time they said we had to decide about intubation, since that was their only option left to keep his oxygen levels from following, they had given him so much morphine for pain, he couldn’t tell me what he wanted. The day before, he told the LTAC Rep that he did NOT want a trach, and since it was clear if they intubated him, he would have to be trached, I said to just make him comfortable and I wanted to take him home, if that was at all possible (they made it seem like we had days). They moved him back to our BiPAP, and within a minute, he was gone. I believe he was already gone and would not have survived the intubation. So, my only solace at this point is knowing I was with him. It doesn’t help much, but it’s all I have.

Please make sure your members know the signs of too much CO2, and as much as you think you can rely on the education of the nurses, doctors and respiratory therapists, sometimes they are so busy focusing on one thing they lose track of what could actually kill an ALS patient.

Thank you for this forum and all the help and support you’ve given us over the past two and a half years. It’s been invaluable. I pray they find answers soon so someday, no one will ever have to go through this wretched, hateful disease.
I am so very sorry. Wishing you peace
Thank you Nikki.
So very sorry, you did a great job as a caregiver. I will learn the signs of C02 buildup. Peace to you and your family.
Sending love.
So sorry for your loss and suffering.
I'm so sorry to hear this, Kelli. I wish all hospitals were well-equipped to meet the needs of PALS. I know you advocated for and with him and that is all we can do, along with stewarding his wishes, as you did. The comfort of knowing that you would do that cannot be overestimated.

Much peace and strength to you.
Oh Kelli I'm so sorry for your loss and the way you felt while he was in the ICU.
Please be kind to yourself now as you decompress from all that week of added trauma.

There are no real words, but we feel your pain.
"So, my only solace at this point is knowing I was with him. It doesn’t help much, but it’s all I have."

You were with him then. And all the days and months of ALS. And he was with you, grateful for your love and caring. His spirit is with you now. Peace.
Sending healing blessings to you. So sorry for your loss.
Thank you all for your very kind words. I keep replaying it all over and over and over. I am going to hold on to your words and encouragement. The past 2.5 years have been made more bearable because of all your support.

I wish all of you the best through this journey no one should have to travel. 💔❤️💔
Advisement noted. I am truly sorry for you loss and I agree this is a journey no one should have to travel and this road is not for weaklings, God Bless You.
Kelli, just wanted to say I am thinking of you and am very sorry for your loss.
Thank you Allie 💕
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