Nothing Could Prepare Me

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Lkaibel

Very helpful member
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Joined
May 9, 2016
Messages
1,529
Reason
Lost a loved one
Diagnosis
06/2016
Country
US
State
MN
City
Minneapolis
Random thought today is that nothing could have ever prepared me for seeing the man who built our garage on the floor, unable to make his feet work. He got up but wow, just wow.

Nothing could have prepared me to have the letter he plans to send to Dignitas explaining his reasons for wishing to end his life in my email, from his sister who is helping him with it and waiting for my editorial opinion ( thus was a surprise e-mail). I knew he wanted to do the Dignitas thing eventually but eventually is looking closer and I did not know this email was coming from my sister in law or that he asked her for help).

Nothing could prepare me for the face I see in the mirror today. It aged 8 years in one.

I feel beyond blogs and even in some ways "regular" friends. I don't think I can be understood by those not in these shoes. I say that with no bitterness and no self pity- just having an experience with a rare illness that shadows us everyday everywhere.

You blink and it all changes, for the worse. No more driving, Walker only starting three weeks back. It seemed to happen literally overnight.Last night he tells me his breathing is changing. No words, just no words.
 
Hugs, just hugs to you my friend. I still feel in shock that it took my Chris - nothing prepared me, I get it xxxxxxx
 
It is so very hard watching someone you love slowly lose their ability to do things.
We cried over every single loss. It is truly gut wrenching.
Thinking of you & sending hugs your way.

Joan
 
Well put Lenore. I wish I didn't, but understand and feel everything you just said. We are definitely in a separate universe few can understand. And just as something unthinkable like being permanently in a wheel chair becomes the new normal, it changes. Never for the better. Always adapting...

Constantly shadowing us... A pleasant dinner interrupted by choking and gasping, a dropped TV remote, a soft raspy voice that makes me want to cry every time I hear it. It shadows me even in my sleep as I need to get up three times a night to re-position my wife. All constant reminders of the universe we now live in.

I remember when I took psychology in college. I read about the "Holmes and Rahe stress scale". These two psychiatrists created a scale from 1 - 100. They took the major stressful events in peoples lives and assigned a stress score to them. Death of a spouse is at the top of the list with a score of 100. I pretty sure they didn't take into consideration death of a spouse by way of ALS. It's like death of a spouse plus being tortured for a few months/years beforehand.

My mind is too scrambled for any type of advice. Just keep moving forward, I guess.

Rob
 
I have no words. Hugs Lenore.
 
Thinking of you Lenore. This disease is difficult while it is happening and difficult after it is over.
 
Just keep moving forward, that is it exactly. This one really does leave us with no words.

Thanks everyone.
 
Lenore, I completely understand nothing could prepare you... Nothing prepared me either...

Nothing can prepare you to watch this disease completely destroy your spouses body and mind or your marriage as you knew it.

Nothing prepares you for getting up multiple times a night to help him stand, pull his pants up, clean up the urine that went everywhere except where it was supposed to be. Nothing prepares you to not have your best friend anymore. Nothing prepares you when you are told he won't make it until the new year. How could anyone be prepared for this nightmare?

No one outside of this forum understands. How could they?

My heart breaks for all of us! HUGS!
 
Lenore I totally get it. Nothing prepares you. I'm sending huge hugs, as I could not imagine getting blindsided by a letter you did not know was coming.

If you chose to vent, there are even more things you are not prepared for, like years on end of your spouse spending 24/7 in bed

I think the loss of friends is huge, just when you need a shoulder to lean on, the rug gets pulled out from under you and there is no shoulder anymore. And it's not just your best friend, in many cases it's family as well. Then the realtionship with your spouse completely changes. You're now the nurse, not the spouse. Nothing prepares you for that.

There are no words.

Hugs,

Sue
 
Oh Lenore, I can't imagine the shock. My heart goes out to you. Thank God we have this forum to share with people who understand. Kate
 
Lenore, I wish I could hug you right now. It must have been crushing to see that letter, even though you knew what your husband's choices were. It made it so painfully real.

It is so true that nothing prepares you for this horrific disease. You just begin to cope with the newest loss of function that your PALS is experiencing and then wham-- there is something new. Rob summed it up perfectly-- "It's like death of a spouse plus being tortured for a few months/years beforehand."

Sharon
 
I think hope is always important, and there is always a hope for something positive even in the darkest situations.

Today I hope for a a few more good times and a peaceful passing for Brian when that times comes- or he chooses it.

Our life together before this was so amazing. I hope I appreciated it enough.
 
Hugs to you! I know how it feels to see them struggling and wanting to end their life. They used to be so happy and lively and now....It's scary to look into their eyes. The sound that consumes my house is the sound of the oxygen machine and after reading this post, I realize I'm scared of the day that sound stops and I can't hug and kiss my mom. Give your man a hug and a kiss, prayers for you all the way!
 
Lenore,
Hugs, hugs, hugs. Thank you for posting your experience and feelings. It certainly helps others, like myself, be more aware of what lies ahead.
 
Lenore,
I'm so sorry. I'm sitting here with tears and just wanted to be another voice telling you, yes, we get it and it hurts and I wish I could make it better for you and everyone else struggling. You said what so many of us are feeling and thinking and living. It is so, so hard to watch your best friend change before your eyes and you know it is only going to get worse. It's been a difficult few weeks here and I haven't been on the forum much - I just couldn't. But I needed to respond to your note. I'm sorry I've been quiet. So much going on here. Stay strong and know that many are thinking of you and understand. Judy
 
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