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Old 02-12-2012, 12:17 PM   #46 (permalink)
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Default Re: My young spouse has ALS, whats next?

I really appreciate everyone who has posted here. I am the caregiver for my mom who is 54 and I had asked in another post if anyone would be willing to share their experiences with end-of-life care. I was refered to this post by another member and it has been very helpful. My mom has chosen not to have oxygen or breathing assistance of any sort, and I will respect her wishes, so her case differs slightly from some of mentioned here, but based on what I have read and observed, I believe she will be going home soon. She has only been sucking ice now, with no other food or water, for a week, and she continues to sleep more each day. She is unable to move anything except her head and a few fingers (with assistance) and has difficulty breathing. While it is difficult to read each of your stories, and my heart aches for each of you, your bluntness and straight-forward information is helpful and appreciated as I try to anticipate and prepare for what will come next for her. God bless each of you!

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Old 02-12-2012, 01:56 PM   #47 (permalink)
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Default Re: My young spouse has ALS, whats next?

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Originally Posted by almondjoy View Post
I really appreciate everyone who has posted here. I am the caregiver for my mom who is 54 and I had asked in another post if anyone would be willing to share their experiences with end-of-life care. I was refered to this post by another member and it has been very helpful. My mom has chosen not to have oxygen or breathing assistance of any sort, and I will respect her wishes, so her case differs slightly from some of mentioned here, but based on what I have read and observed, I believe she will be going home soon. She has only been sucking ice now, with no other food or water, for a week, and she continues to sleep more each day. She is unable to move anything except her head and a few fingers (with assistance) and has difficulty breathing. While it is difficult to read each of your stories, and my heart aches for each of you, your bluntness and straight-forward information is helpful and appreciated as I try to anticipate and prepare for what will come next for her. God bless each of you!
Almondjoy, I'm so sorry for you, but glad you see that's she will be going 'home' soon - to a better place. My thoughts and prayers are with all of you who are going through this now or have already had to go through it. So far, I've been holding everything together as we go through the initial weeks following my dad's diagnosis. Hoping I can managed to keep it up through the end. You are all are great inspiration - thank you for sharing.
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Old 02-12-2012, 09:20 PM   #48 (permalink)
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Default Re: My young spouse has ALS, whats next?

I am so, so sorry for you and your family. We have been under Hospice for several months -- Covenant. They are awesome. Don't think we would want to be without them. God bless you all.
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Old 02-12-2012, 09:26 PM   #49 (permalink)
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I am so sorry for you and your family. Hospice is good for us. Morphine is a good thing in this situation. God bless you all.
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Old 02-13-2012, 02:31 PM   #50 (permalink)
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Default Re: My young spouse has ALS, whats next?

My father was 48 years old when he passed away. ALS for him, started at his legs. Around 1.5 years, he started having a hard time breathing. I was only 20 years old at the time, so I don't know all the medical terms for his equipment. However, he was in acoma the last week.

My advice to you, is to stay strong and be positive.
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Old 02-13-2012, 04:49 PM   #51 (permalink)
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Default Re: My young spouse has ALS, whats next?

I too have a wife that has had ALS since 2009. She wants no tubes or air. At 68 I do not blame her. People get old, get sick and die by the thousands daily all over the globe. I was encouraged by your mates bravery and your coolness under such circumstances. ALS is a very sinister disease. It just seems to laugh at you as it whittles you down. Unfortunately death is the only way to end the misery.
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Old 02-16-2012, 01:06 PM   #52 (permalink)
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Default Re: My young spouse has ALS, whats next?

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Originally Posted by rangerbob View Post
Thanks for the response. This is indeed what I am looking for. I want the truth.

In retrospect, does the morphine accelerate the process? Hospice has politely recommend we consider morphine but my doctor says no not yet. She isnt in any physical pain but the bipap is getting to a max point.

I am even considering the impact on my son and daughter... given the physical state of your wife would you allow small children in the room? I suspect no.... Thoughts?

Thanks!
First of all, I am so sorry you and your family are being robbed by ALS. Ours is too. My mom has been on hospice since mid-December and according to her doctor the morphine is not for pain but for air hunger. The medicine interacts with the brain recepters that receive the message from the lungs to panic because they are not getting enough air. When the message isn't sent, our loved ones panic less because the brain thinks the lungs are getting what they need. I encourage you to discuss this with your wife's neurologist. My mom's husband has had difficulty coming to terms with giving her the morphine because of the stigma around it and we have been encouraged by her neuro that it really is for comfort and that is the primary goal for our PALS.

Please let your family know they are in our hearts throughout your journey. This post was also very helpful to me as Mom's not to far from her end either.
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