Old 12-12-2017, 11:49 AM #1 (permalink)
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Default End stages

It's hard to believe that a month ago my dad was still walking, eating and speaking normally, using his left hand/arm.
His progression since then has been astounding. He now has a wheelchair, hospital bed, lift, bi-pap, oxygen to help asthma, cough assist, suction, morphine...the list goes on and on. Last week we thought the end was very near. He was sleeping so much, had morphine every 4 hours to settle his cough, hardly spoke or ate.
For the past few days, he's been wanting to get out of bed, talking and eating more...just seems more alert. His palliative care nurse even said she doesn't hear the crackling in his chest anymore. How is this possible? Anyone else experience this with their CALS? ALS is so unpredictable...

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Old 12-12-2017, 01:56 PM #2 (permalink)
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Default Re: End stages

Hi miav,

yes we see this happen fairly often - that's why we say the only predictable thing about ALS is how unpredictable it is! hugs
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Old 12-12-2017, 02:00 PM #3 (permalink)
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Default Re: End stages

Miav, very sorry to hear of your dad's rapid progression.

Given the turn of events you describe, it is possible that his mood may be in part driving some of the dips and rises in his physical state.

One caution since he does not seem to see himself at the end of life right now: even with asthma, supplemental oxygen is usually not advised due to the risk of CO2 buildup, which accelerates decline. So we would normally try everything possible with BiPAP optimized for the right volume of air he can move, and low-to-high tech secretion control such as suction/cough assist, before/instead of adding low-flow oxygen.
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Old 12-14-2017, 10:25 AM #4 (permalink)
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Default Re: End stages

Quote:
Originally Posted by lgelb View Post
Miav, very sorry to hear of your dad's rapid progression.

Given the turn of events you describe, it is possible that his mood may be in part driving some of the dips and rises in his physical state.

One caution since he does not seem to see himself at the end of life right now: even with asthma, supplemental oxygen is usually not advised due to the risk of CO2 buildup, which accelerates decline. So we would normally try everything possible with BiPAP optimized for the right volume of air he can move, and low-to-high tech secretion control such as suction/cough assist, before/instead of adding low-flow oxygen.
They suggested oxygen because when he was in the hospital for a couple of days two weeks ago, it seemed to help him. We use it with the Bi-Pap and so far he only seems to have more energy than before. We were told that it is not normally given to ALS patients, but because this is end stages they want to give him whatever makes him more comfortable.
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Old 12-14-2017, 12:13 PM #5 (permalink)
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Default Re: End stages

If it helps, of course, it's the right thing. Just be aware ultimately it may reduce his lifespan, and he should be aware as well. I am glad he is doing better.
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Old 12-19-2017, 10:27 AM #6 (permalink)
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Default Re: End stages

Just wanted to update that my dad's hospice nurse told us that it seems like my dad has stabilized. Considering how close to the end we all thought he was two weeks ago, she said she would never have expected this. We are hoping to enjoy the holidays with him now
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Old 12-19-2017, 10:40 AM #7 (permalink)
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Default Re: End stages

That's great news, Miav! I hope you have wonderful holidays together.

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Old 12-19-2017, 03:30 PM #8 (permalink)
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Default Re: End stages

So glad to hear he’s doing better. Have a great Christmas.
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Old 12-19-2017, 10:05 PM #9 (permalink)
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Default Re: End stages

My friend’s husband was thought to be “actively dying”twice, ralied, and lived more than a year.

Glad he is doing better.
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