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happygardener

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My husband was diagnosed over a year ago with ALS.I could list his condition but was justwonderingif it was always breathing issues or pneumonia that will end his life.I'm worried,he is in pretty bad shape but so far no bipap or other devices...could he just pass away without ever going down that road..thanks for your input
 

brooksea

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That's a hard question to answer, just because ALS presents itself in so many different ways. I believe my husband would have lived longer if he had not had FTD with ALS and taken a horrific fall that resulted in a coma. There are so many variables due to the loss of abilities as the disease progresses.

I'm so very sorry.
 

brooksea

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Thanks for bringing that back up, Lori. Such a great explanation of things.
 

Plumeria84

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Jul 22, 2011
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CALS
Diagnosis
08/2009
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Thanks for posting the video, I'm watching the second part now.
Totally agree Brooksea, how great would it have been to see this video immediately after diagnosis. Ofcourse, now a lot of those things we know but how many hours of research it took to put it all together like this one video does !

happygardener, yeah, sadly there is no way to know how far into they are. I've been worried about the same thing lately - PALS has pretty minimal movement of arms/legs etc.. so breathing is the only thing he's got left and it just makes you worry about how much time they really have left.
My husband choses not to use any sort of devices either and the g-tube was a failure so unfortunately I don't think there is any way to know what is going to go next.
 

Jason's Dream

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Each person and individual is different and unique in and of themselves.

I asked a few friends (former CALS) this same question. How would he go? How did thier sweetheart's go? Both of them said, thier PALS told them one night, that they were just tired and wanted to go to sleep, and just never woke up.

Oh, how I wish Jason would have gone that way. But he didn't.

At the beginning of October, on one of the hospice nurse calls (after checking his vitals), the nurse pulled me aside and said, with what she was hearing and seeing, she wondered if Jason would make it to Christmas.

On October 15th, we went on our last date together. I took him to see a country artist. Drove his chair for him. Gave him roxonol (liquid morphene) several times during our date. Went out to eat and enjoyed our time together. Never had a clue that it would be our last one.

A little over a week before he passed (October 28th), again the hospice nurse pulled me aside and said, from what she is seeing and hearing, she didn't know if he would make it to Thanksgiving.

On the following Monday (October 31st - Halloween ~ He passed the following Sunday) Jason felt "tired" and not upto going out trick-or-treating with the kids and I. So I got a football jersey, split it up the back and put it on him with some face paint, dressed up the kids, then took the kids out to T&T. When we came back I showed him videos and pictures of the kids trick-or-treating. I had told him, "... just because you aren't up for it, doesn't mean, that you won't be a part of it." And I kept my word.

On Wednesday, a pastor visited and Jason got peace about the afterlife. After that, he started to decline.

On Thursday at noon, he started asking for the morphene on the hour.

By Friday morning, when the CNA came in to give him his bath, she pulled me aside and said she thought it was time to call the nurse. We called the nurse. She came and listened to him, checked his vitals, pressed on his foot in a couple areas, then pulled me aside. She said, hon, its begun hon. If there is anyone you want or you think he would want here, you should call them now. I asked "how long?" She said, a mere few hours.

We got his mom, chaplain, pastor, sisters, my sister, friends in... he rallied and spelled out the word "food" I asked if he was hungry and he gave me affirmative look. I asked what he wanted, he spelled out the word "pie". So I got a piece of chocolate silk pie. The chaplain said he thought he would probably only want a taste, maybe a couple bites. Minus the crust, my sweetheart at that whole piece. That would be the last thing he ate. At that, the pastor announced, he was out of here, that Jason wasn't ready to die, he was eating pie, and left.

Then I thought, maybe he was like his grandma, waiting on everybody to leave the room so he could pass. So I escorted everyone out, and even at times, I left the room. Still he held on.

After Friday at 9pm, he didn't open his eyes for over a day.

On Saturday, my sister and I were talking, and she said, maybe having everyone in there like that, freaked him out, and maybe putting things back to normal would make him feel more at ease. So I had my laptop and was sitting by his bed, had a football game playing on the tv (even though he was not "awake". His brow seemed to "un-furrow" and he seemed to relax some.

On Sunday (our daughter's 1st birthday), here, he had be in the "process of dying" for the 4th day. I hadn't slept in all that time, and at this time was delirious and wondering if by giving him the meds on the hour if I was "doing this to him". I asked a friend of mine, who is an ICU nurse, if she would stop by after church and give me a second opinion. When she walked into his room, she started to cry and said, no hon, he is dying, he just has a really young heart, and so its going to take him a while. (Later she told me that she told his pastor, to expect a phone call later on that night.)

With that news, it was a bit of relief, and made me think again, okay, so what is he waiting on? Then, knowing Jason, he loves his children sooo much! And here it was our daughter's first birthday. Maybe he was waiting to celebrate her birthday and be there for her one last time. So we put her high chair next to his hospital bed, and gave her a piece of cake. Sang "Happy Birthday" to her and watched her eat. I was trying to act "normal" and watching her eat the cake, I touched Jason's shoulder, and said "Hon, you hafta see this. Katie is liking this cake more then William ever did at this age" With that, Jason opened his eyes for the first time in over a day and then close them again, but not before our son came around and pleaded with his Dadda to "not go back to sleep again. don't close your eyes Dadda!" This happened around 2pm.

After that, his breathing changed and sounded more like the Friday breathing. I called the hospice agency and the CNA (which lives the closest) came out. She said she would stay with me a while. I think she knew it would be soon and he would want it to just be him and I. She left at 8pm. After I closed the front door, I turned around and Jason's eyes were wide open. I ran to him, and told him how very much I love him, that he has been amazing and done a great job, that he has been my best friend and the love of my life and I will forever love him, that he has been an awesome Dadda to our two children and that I will make sure they know who thier Dadda is and where he is, but that it was okay to let go now, and that we will see him in a little bit. And with that I kissed him. And he took his last breath, and I closed his eyes. That was 45 minutes after the CNA left. It was like, each part of the journey, we had done each step, dealt with each new loss and challenge together, and so we walked together and did that final step together.

I say all this to say, you never really know how they are going to pass. My advice is to stay in the present, and treat everyday as a gift. I know the road is rough as a caregiver, but on the other side... I'd give anything to be that tired, run-down, excuse of a wife and caregiver every second of the day, moment of the day, and each day. Understand each person goes thier own way, in thier own time, and to not waste time wondering how that will happen, but enjoy what you have with them today.

*hugs* and much love. <3
 

happygardener

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Joined
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Messages
91
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08/2011
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Thank you for sharing such a personal journey..this road is full of hills and bumps...
 

Plumeria84

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Messages
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Reason
CALS
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08/2009
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Palm Coast
I am just bawling my eyes out :cry:
I'm at a bit of a loss for words but thank you for sharing that. I hate that you've had to deal with this, it's just so unfair.

What a sweetheart he is for making it through his daughter's first b-day.
I am glad you got to say your final goodbyes and tell him how much you love him.

I'm sorry yeah, I can't stop crying so I'll stop here for now , but big hugs to you and your precious little ones.

Thank you for the reminder that no matter how hard this is, no matter how sleep deprived and exhausted we are to try to treasure every moment.
 

Jason's Dream

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*hugs* and much love to you all. I know how tired y'all are.. but I also know, on this side.. how very much I treasure the memories made, the pictures and videos taken, and that we didn't just "sit" and wait for this horrible beast to take him. For that I will be eternally grateful that we fought to enjoy every moment we had left together and shake our fists, so to speak, at this aweful beast. <3
 

cairn175

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May 1, 2012
Messages
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PALS
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03/2012
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US
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washington
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chehalis
Thank you for sharing your life story with us..makes me cry. I'm sure Jason knew how very loved he was.
Take care of yourself and wonderful children.
 

WellsRuby

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Texas
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Houston
I'm at work and wanted to reply to this post about how much I learned from the three videos. A lot of good material in the videos, thanks for posting them. Also, I want to thank Jason's Dream for sharing her wonderful story with us. I had to leave my desk and go to the bathroom. I can't believe how much love everyone gives to each other.
 

Jason's Dream

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*hugs* to you both. PALS and CALS are amazing people. <3
 

Barbie

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Joined
Dec 29, 2007
Messages
2,681
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Lost a loved one
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01/2007
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orlando
Lori good video. So much good info--it would be a good stickie.
 
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Jason's Dream....just read your post. Your beloved had a peaceful departure....may he rest in peace. You are one beautiful person, may God bless you! I, too, watched my son take his last....may he rest in peace.

Irma
 
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