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smoochiegal

Active member
Joined
Jan 3, 2015
Messages
87
Reason
Lost a loved one
Diagnosis
08/2014
Country
CA
State
Ontario
City
Otonabee
Hello my lovely ones who just 'get it'.

It has been a rollercoaster. and I HATE rollercoasters. ALS rollercoasters especially.
So my sweet man had an awful reaction to the morphine with the pump. I really thought that I was going to lose him last week. A psychotic episode which required a nurse visit in the middle of the night and then days of just sitting and crying and begging me to end it for him.
After the morphine got out of his system, he came around a bit, but still has not been the same.
He is now on a fentanyl patch and that seems to be controlling his pain. I also have Ativan for anxiety and a sub q line and injections that I can give him if he gets really anxious or restless.
He is not sleeping well. Eating only a few bites of soup per day and on a good day a meal replacement shake. Still able to drink water and few beers a day.

I feel numb. I thought I was going to lose him. I thought that I was ready. But I am not. HE is not ready. But now we are on the upswing.. so that means I have him again.. but for how long?
How long does he have to suffer? How long can one live on just a few bites of food and a couple of beers? How do I deal with not knowing what the next day will bring.. I guess one minute at a time like I have been, but I am tired. Physically, emotionally, spiritiually.. just tired.
Tomorrow is the ALS Walk in our town. We have a huge team going. Raised lots of money. Have team shirts made and I just don't want to do it. I just don't want to have anything to do with ALS right now.

Thanks for letting me vent.
Thanks for the love.
Thanks for getting it.
Cheryl
 
>Tomorrow is the ALS Walk in our town. We have a huge team going. Raised lots of money. Have team shirts made and I just don't want to do it. I just don't want to have anything to do with ALS right now.

me either, but do it and I know you will feel better. share what you feel with who you can.



Max - Friday, May 08, 2015 7:01:53 PM

ALS sucks, but It Is What It Is ... and someone else has it worse so I'll try not to complain today!
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013


.
 
Cheryl, where's all this pain coming from? Does he have something besides ALS?
 
Cheryl, wish I could put my arms around you and let you cry on this mom's shoulder. I am so,so sorry this disease is one you have to deal with.
Hope the ALS walk and the fact people care helps get you through these hard days. Donna
 
I was wondering the same thing as Atsugi. I was hoping I wouldn't be in a lot of pain at the end. Is there some other condition your PAL has? You're in my thoughts and prayers!
 
Jeanau, just to reassure you, my PALS Krissy had no pain, anxiety or fear in her final days. She died quietly at home surrounded by family. No tubes or machines involved. It can be done.
 
From what I've read, (and I've read a lot) some PALS experience little to no pain, and others have significant pain. There's a lot on this forum about pain management. I, for one, experience chronic pain related to ALS, which I manage with pain meds throughout the day. Some think ALS is a painless disease, but that's not necessarily true.
- Charlene
 
Hi Cheryl. You have been on my mind so much the past week. I read your previous post I did not have a chance to respond. My visits to the forum are always so fleeting because of time limits. My heart goes out to you right now. Please know that you are not alone. I feel desperate for you and for all of us that are facing this horrific disease. It is definitely a rollercoaster none of us chose to ride and we wish we could get off, but like you said in a previous post - wanting it to be over means losing our loved one which we aren't ready for either. Sending you lots of love, hugs and strength. Poppies. P.S. How are things at home otherwise? How are your kids?
 
Cheryl I'm so relieved to see you posting again.

What an awful time and I so get it with what you have written. You don't want to lose them, they don't want to die, but you just can't stand to see them go through all of this! Constant paradox.

A few are asking about pain. I can attest that my Chris suffered HUGE amounts of pain for a lot of his time with ALS. For him, it was because of the spasticity and atrophy causing his joints to become frozen. The frozen joints were painful in themselves and I can attest as I spent so much time massaging to help relieve it that it was unbelievable to feel the amount of tension in the little strings of muscle left behind. Once you have this, not only is there pain from the frozen joints, but getting them comfortable anywhere is a huge hurdle as the body is just not the least bit flexible.

I HATE ALS it is incredibly cruel.

I can understand you don't have energy for this walk. Make the decision when the time comes to get ready and do what is right for you. I agree with Max you will be glad if you go on the one hand, but if you don't feel up to it, well ain't that the way it is with this monster!?
 
His pain is due to his drop neck. (and his poor choices)
He is still able to walk but refuses to wear a neck brace. So his back and neck are so painful as he overcompensates for the lack of muscles by 'balancing' his head when he is standing. Then his posture is like a huge S.
So yes, he has much pain but my job is not to tell him what to do, it's just to be his cheerleader in the fight.

I am off to ALS Walk....
ox
 
Steve kind of reclines against the couch cushions or pwc for head support. When walking he mostly moves his eyes up. Julien used to. get in front and say clear the way my dad is coming thru. But now steve is always in a chair when we are out....and like your husband no necvbk brace has been deemed comfortable.
 
How was the walk? How are you?
 
>and like your husband no necvbk brace has been deemed comfortable

an upside down airplane neck pillow?
 
Cheryl, again I hear ya.

I witnessed Chris make poor choice after poor choice and chose to simply support him in being able to make any choices. It is a very hard thing to do when your head screams that there are far better choices! Well we don't know they are really far better, we all lose with this disease in the long run.

How was the walk? Good on for you going. You are ranking with Barbie the warrior princess now! :lol:
 
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The walk was great. In Peterborough there are only 20 people with ALS. This is only the 2nd annual ALS Walk. The goal was $37,500 and our little town raised $63,000!
It was a great day. 25 people on our team.
I am glad I went.
I am feeling loved.

AND... my hubby is a fisherman.. and it is opening weekend of walleye. HE WENT FISHING!
His brother and friends propped him up in the boat, tucked a rod under his leg and he actually caught 2 fish. He was beaming!

So all in all, it was a great day.
So thankful for the support and love from you all.
 
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