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Passing away and respiratory
My husband still has an appetite and is able to barely get out of bed. His breathing is really bad. He is wearing his trilogy machine 90% of the time. Can he pass away without his body shutting down?
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9 Replies
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Very new to this site and to ALS. I need to learn about this awful disease. I will take all the advice I can get. Thank you.
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Sadly, I think most of us pass due to respiratory issues. I wish you only the best as you care for your husband. I hope you have support. Lisa
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Shannon,
ALS effects each person differently so the exact path and length of time each pALS has is difficult to determine. Do you know if your husband has a genetic mutation or if his ALS is sporadic? How has his progression been so far? Has it been limb onset or bulbar? All of these factors play a part in helping you understand and prepare. Have you had a chance to talk to his doctor/medical team and get any kind of prognosis to help you prepare?
There is some helpful information on the ALS Association website about the different types of ALS and typical progression patterns. Please feel free to post your questions on the forums too!
Amanda
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I believe it started with swallowing. Weight loss and breathing, shortness of breath. We have Kindred Hospice coming in and they don’t seem to know that much about this disease. In fact, I don’t think to many people in Dothan,Al are educated on ALS. If so they are hard to find. I’m at a lost. Ken’s nose runs like a faucet lately and his breathing is getting much worse.
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I’m not sure I understand your question. We did find out that a long distance cousin had Als when Ken was a teen. There is so much I don’t understand. Thank you for the information.
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Shannon,
We are so sorry you have had to join this community because it means you are dealing with this horrific disease.
As Amanda said every pALS is different and all of us who are caregivers feel lost.
Has he had a lung function test? Are you dealing with an ALS clinic? Have you joined your local ALS Association’s support group for caregivers?The support group has been a Godsend for us. Your support group will offer you information which isn’t found anywhere else.
Please know that you are not alone. We, the ALS community are here to help.
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Shannon, so sorry to hear about your husband.
Everyone is different but yes, respiratory failure is what frequently happens.
My wife passed in October after 3 years with bulbar onset. During her last 3 months though he food intake, via a tube, remained constant she became unable to walk, breathing became labored and she too spent most of her time on the trilogy and using the suction machine to handle the excessive amount of saliva that is part of this disease. The strange thing for her was that despite the amount of saliva she suffered from dry mouth.
One night last October we got ready to go to sleep as we did every night. Though she was unable to speak she used a text to speech app on her phone to communicate. She gave me the thumbs up to turn out the lights. We went to sleep and she passed away painlessly during the night. I know it was painless because she was next to me and she slept with an alarm fob on which she could push the button if she was in distress. It would sound an alarm to awaken me to help her. I found her in the morning with the fob still in her hand.
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Hi Shannon,
I am a PAL. Diagnosed 12/14/17. I consider myself blessed because I have had slow progression compared to some others. I know every case is different. From what I’ve read, the majority of PALS do pass away peacefully. As a PAL, that’s a comfort to me.
My grown son is my part-time caregiver. I’ve noticed over the years of him watching what this disease is doing to me, that he has pulled away. He only comes in my room for as long as it takes to do what needs done. I miss him staying for a while to chat or watch tv with me. He isn’t up for joining a support group. I feel he needs some kind of support.
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You may want to take a look at this youtube regarding the progression of ALS. https://youtu.be/TMU-e3-2DWU
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Thank you, Bruce. That is a very informative video. At some point every ALS patient should watch it. The families, too.
Regards,
Cheryl
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When my Mom was first diagnosed with ALS, someone in this forum recommended Kevin O’Donnell’s ALS journey on YouTube. It was very informative, and he was very open and giving about filming the progression. I’ve returned to it a few times. Hope it helps.
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