Old 12-06-2017, 10:28 AM #1 (permalink)
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Default Rapid Decline

I'm afraid we are getting closer to the end. Since Hurricane Irma, my dad has just gone downhill extremely quickly. He can no longer hold his head up. We have him in hospice and he is on the "cocktail." These past 2 weeks he has begun sleeping constantly, waking up for brief moments. (This started before the morphine.) He absolutely refuses to use his bipap machine as the drooling in constant and gets in the way. Yes we have tried all the different avenues (nose pads, kiss breaths, etc...) but he refuses all. He legs and right arm are tremendously swollen and he will not lie back in a recliner or his bed. So they remain swollen. He also has had some episodes where his oxygen levels have dipped down into the 70's. BP ranges from normal to high side (don't have exact numbers). This is just happening sooo fast... He was only diagnosed in Feb...
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Old 12-06-2017, 10:40 AM #2 (permalink)
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Default Re: Rapid Decline

My heart goes out to you. We are in the same situation with my dad right now. He was diagnosed in August of 2016 and his progression was relatively slow up until a month ago.
We are trying to keep him at home by keeping him comfortable with morphine and whatever else he needs. Let's hope that they don't suffer too much in the end.
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Old 12-06-2017, 12:27 PM #3 (permalink)
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Default Re: Rapid Decline

I hope he goes quickly. This disease is an incidious monster. Prayers to you as well.
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Old 12-06-2017, 01:16 PM #4 (permalink)
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Default Re: Rapid Decline

Praying for both your dads as they prepare to be set free from this beast. You both are super CALS.
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Old 12-06-2017, 01:54 PM #5 (permalink)
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Default Re: Rapid Decline

ctollar I hope your dad can be kept comfortable on the cocktail and pass peacefully. I'm so very sorry, this is a most awful disease xxx
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Old 12-06-2017, 02:56 PM #6 (permalink)
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Default Re: Rapid Decline

Praying for you. This disease is relentless. Hoping everything is peaceful

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Old 12-06-2017, 05:43 PM #7 (permalink)
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Default Re: Rapid Decline

Very sorry to hear, C and Miav. Please feel free to post any question that comes up, or just vent.

Miav, feel free to start your own thread for support if you would like.
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Old 12-06-2017, 08:09 PM #8 (permalink)
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So sorry to hear about the rapid decline of both PALS. I will be thinking of you both.
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Old 12-08-2017, 07:42 AM #9 (permalink)
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Default Re: Rapid Decline

Thank you...on top of all of this he is constipated again. Nothing we have done regulates his bowel movements except suppositories. Hospice has been into help but it is hard for him to (excuse my bluntness) push it out. Ideas?? I have asked if he wanted me to massage his stomach and he motions no....
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Old 12-08-2017, 01:47 PM #10 (permalink)
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Default Re: Rapid Decline

Sadly this can be part of the whole situation - a side effect of the meds, no movement and possibly not consuming much food, especially fibre at this point.

Hospice may find that doing suppositories every 2-3 days may be the best way to keep him moving.
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Old 12-08-2017, 07:49 PM #11 (permalink)
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Default Re: Rapid Decline

If someone is constipated and uncomfortable, that is one thing. But hospice care is palliative, for comfort at the end of life. If discomfort is not an issue, I wouldn't contemplate regular suppositories "just because."

When nutrition changes and functions slow, the volume is often considerably reduced. A week to you would be unthinkable but that is not always true for someone near the end.

That said, if there is discomfort and the non-invasive methods don't work, sometimes you have to go in gloved and get it.
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