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Brian Flies Free

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Lkaibel

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So many wonderful people here. I’ve said before, not sure what I would have done without this forum.

I think one thing our experience shows is that VSED need not be a horror show. With the exception of our 2:00 am blip last week, this really was smooth and peaceful. The only drugs in action were the Thorazine, Methadone, and Oxy liquids, and I did not even have to do any significant titrations.

We had many moments in this past 1.5 years on particular that felt really “dragged to hell and back”. This passing was not among them at all.

Already today my living room looks less like a hospital room as they come to pick things up. Now, if only it had a healthy Brian in it....

Thanks again everyone.
 

vltsra

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Lenore, it was apparent from all of your posts how much love you and Brian shared. In the end you both showed courage and love. You've been an inspiration to me in this journey as a CALS. I wish you both much peace.

V
 

KateEmerson

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Lenore,

I am so sorry for your loss of your love. But am glad that you both had a peaceful transition with remarkable strength and love. Kate
 

Jrzygrl

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Lenore,

In every post, your deep love for Brian was always evident . I am so sorry for your loss, but glad that he went peacefully on his terms. You gave him that gift. He may be gone from his body, but his love and spirit will live on with you. I wish you peace in your journey forward.
 

Thomas933

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Thank you for showing me one of the many paths that pALS and cALS walk. Your honestly, candor and willingness to speak your truth it so important to me. It signifies the acceptance that we must have for one another.

And, I am truly sorry for your sadness and for the loss of your husband. I wish you peace knowing you did right by Brian. And that took work, strength and courage. I only hope to be as strong as you one day. Peace to you now and blessings for Brian as his spirit walks with you always.
 

Vincent

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As a PALS, Thank you for all you did for Brian. And thank you for all you have contributed to the community here. You are a damn fine person.
Vincent
 

swalker

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I am so sorry for your loss, yet am glad he is flying free on his own terms.

What a wonderful CALS you have been!

Steve
 

soonerwife

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Lenore, I am so sorry for your loss. I am so glad it was a peaceful passing.

I understand the if only... there is nothing any of us want than to have our PALS back pre ALS.

You were a wonderful CALS and helped so many learn so much.

Hugs friend!
 

Buckhorn

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Lenore, I am very sorry for your loss. Words are almost meaningless now, but your love & care for Brian lives on. Brian truly does fly free now ..... Godspeed Brian! Love to you Lenore.
 

azgirl

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you enabled Brian to fly free in a peaceful way,. That is the greatest act of love you could give,,

you were a superstar cals to your Brian.

so sorry for loss.
Kay
 

katygal

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So very sorry for your loss, Lenore. I also want to thank you for sharing this thread with us. It is a privilege to walk with you.
 

JimInVA

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Lenore,


My thanks to you both for providing such an exceptional example of love, living and moving on. It gives Darcey and me hope for a peaceful transition, on both sides, when the time comes near.


My very best to you...


Jim
 

Bestfriends14

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Oh,Lenore, I'm so very sorry for your loss. The positive out of this was your love for him and the fact he is now free of the beast. Much love to you and big hugs.

Joanna
 

Lkaibel

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I woke up this morning and though oh no, this is the first morning Brian is not in this house and he’s not in the hospital. Then I thought, this is the first morning Brian is free of that bed, free of that body.

I came downstairs, fed animals, made breakfast but still had the Brian time thoughts like “I better do these dishes while the bacon cooks because...” Nope, I’m
Not doing anything for Brian in two minutes and trying to get to work on some semblance of time. It’s just me and an egg pan. I don’t work again til 4/1 besides.

Can I speak truth on that for a moment? That is both a huge relief and a huge grief. I swear I’d only say that to people who know ALS.

The thought of it was both to Brian too. He cried a lot that last week he was alert and knew his plan. He cried frequently enough that I asked him multiple times if he was sure. I asked him repeatedly if he was doing this because he thought he was a burden to me. He’d say no, he was a burden to himself.

I want to say that too, we had a few people on these boards criticize those of us who respected our PALS wishes. Well, encouraging him to look at the other side was frankly painful to him, and I finally had to stop it and accept that though he was crying about leaving me, he was hellbound and determined to leave ALS. Now.

I read an article yesterday sent by a well meaning friend about all these hellish “firsts” I was going to deal with all year. First Christmas, anniversary, birthday without him. The anniversary thing tugged at me. It’s April 12, and I had originally taken the day off so we could just hang out, talk share memories.

Then I remembered that this past Christmas I did not make a dinner because Brian only ate through straws. I remembered the first Christmas he could not set up the tree. The first time I cleaned up his poop or helped him in the shower. Our first hospitalization, first fall.

Yes well meaning friend, don’t try to scare an ALS widow with firsts to “prepare” her. We know firsts all to well. Somehow I think it’s only been since Brian made his mind up two weeks ago that I allowed myself to acknowledge the full weight of what ALS can be.

Today, I’m going to my mom’s care center to tell her. I’m finishing Brian’s obit. I’m continuing to convert my living room from a hospital space back into a living room. Friday night I’m meeting up with a friend for dinner and drinks. I need to firm up plans for the Brian gathering too.

Thank you all again so much.
 

Narrowminded

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Lenore I understand all to well about what you were feeling as you were making your eggs. I did the same thing. Sometimes I still do. It’s something we’ve done for so very long, it’s habit.

And while we have experienced many first, more than we ever dare or care to count, the firsts your friend speaks of do still throw us for a loop. Our Anniversary came quickly as well, not quite as quick as your, but still quickly and Dang it was HARD, that whole week was hard so do be shocked if it hits you more than you expect.

I am so happy to hear you are getting out with a friend for drinks. However, don’t be afraid to cancel if when the time shows up you’re just not up to it.

I’m holding you tight as you start you new journey post ALS. (Well not really post, I don’t think we ever lose it, but...)
 
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