The Next Part of the Journey

Lkaibel

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I think it’s thinking about my various deficits as a CALS. If If been more patient, if I’d paid him more attention, If I had pushed the ROM maybe he’d still be here and doing reasonably okay. Maybe he would have wanted to go longer. Maybe. Then I start to really think it out and I feel better. Then I wonder, should we have aggressively pursued something I missed? It’s done now.
 

katygal

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Lenore,
When dealing with my aging mother, my PALS continued to remind me that we make (or made) the best decision we can at the time with the information we have and then when must do our best not to look back and second guess. It is easy to second guess our decisions when you have more history and more time has past. BUT, you did the best you could, you made the best decisions you could. I can tell by reading your threads that you love him dearly and friend, you did your best and yes, that is good enough...more than enough. Thank you for always being willing to share honestly with us.
 

lgelb

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I believe, Lenore, that when PALS opt to pass on, whether voiced or not, is on their own version of a clock, not just their own timeline. In other words, it is no longer about days, months or years and which losses, and which attempts to cushion the blows do what.

The same inner voice that tells them it is time to transition is on the continuum that determines whether they try more ROM or a new pillow or want to go out, and at root it is outside anyone else's understanding and intervention.

It's not a "white flag" nor any kind of surrender on any P/CALS' part, to hear that voice, either yours or the one you love.
 

Lkaibel

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Thank you both. It’s true, Brian and ALS steered the boat, not me. A CALS can advocate and love and work to all the best ends possible but we are not in control.
 

Narrowminded

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Lenore I am sending huge hugs. I too had some feelings and still do about did I sit with him enough, that sort of thing. Obviously we followed just about every available path and I can´t say his extended life due to it was better. Sure I had him longer, but he also lingered in bed. Better, in his mind maybe, in mine I´m not so sure.

You did an awesome job and that´s all anyone can ask for and you loved him dearly always and always will.

Happy to hear that the job is doing what it´s meant to do.

Congrats on the house refi and the new car. That will feel good.

Hugs
 

wishmobbing

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I thought about what ifs, too. There was a lot that could have been done. Just not by me. And not to my PALS. We were both at full capacity while maintaining a close circle of friends and having some giggles. Yesterday I reread messenger conversations we had while he was in the hospital getting his bipap and peg. It was all in that week of texting. Organizational stuff, jokes, compassion, anger, exhaustion, hope and one of the longest love "letters" he's every sent me. So glad to rediscover it.
 

soonerwife

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I think it is normal to think about what we could have done differently. I too think about the should I's! We all did the best we could do at the time in a nightmare of a situation... Hopefully we can all be at peace with that?!
 

Lkaibel

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Sue your husband and mine were at polar opposite in their choices on ALS, and in the end the same result. I totally hear what you are saying, and I think that fact shows the reality of ALS better than any other.

Lori, I also see what you are saying about that inner voice. I heard Brian’s loud and clear the day he called me home from work, pastor in tow to tell me he was done.
I remember him insisting on looking at his legs that day, and me not knowing why. He later told one of our carers that when he saw his legs he knew for sure he was done. That voice looked at those withered legs and said enough already.

Wish, I know just what you mean! I have some weirdly happy memories of Brian’s two hospital stints. I think both times we were just very relieved he was not going to die imminently and that he felt so much better. So the fact that each of these hospital admits marked steep steps in progression did not make them entirely negative.
Watching a winning Vikings game in Brian’s room in the fall of 2017 after the Radicava disaster is among my fondest memories of our last few years together.

I did indeed close on my refi yesterday- now the house title and the mortgage are truly in my name and mine only. I also bought the 2018 Camry LE. Funny, but it was a CALS online friend in London who told me she loved the car and I should check it out. From Japan to London to my garage :) . It’s a joy to drive.

I am thinking when the time is right, which may be in two months or two years I should being writing the story of Brian, ALS, and me. I would not seek to publish it, but to get it to other CALS and PALS.

There are several things out there by PALS. My Year of Living With Joy, Rowing Without Oars, The Butchers Daughter, etc. CALS though are Mostly heard from on these types of boards and groups.

Our story, like everyone’s is about more than just us. It’s about the American (in our case) medical establishment, and about human reactions to non negotiable, tragic events. I think such accounts can serve as a historical record. Maybe only about 5400 people in the U.S are diagnosed with ALS each year, but many more thousands are impacted by it and it’s not a Facebook photo op, ice dumped on head.

Anyway, that’s for the future. I’ve got an old car to get ready for a buyer today. Getting 40% more than Inwould as a trade! Go me!
 

affected

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Those if-only's are a part of the grief and they are bad if they take hold, but it sounds like you hear them, then beat em back down good! They will lessen in intensity and frequency over time, but not always in a truly linear fashion - something can trigger a spate of them again.

Writing the book of our story really was so cathartic for me. Everything was kind of whirling around and around, and it enabled me to lay everything out straight - this is how it was.

Jane Hawkings book "Travelling to Infinity" is brilliant. It was used to create the movie "the Theory of Everything" but the movie is about Stephen, while the book, rightly so is about what it was like for Jane - this story is so misunderstood as she was in the background making everything happen but not seen.

So go for it with writing - set no timeline, just write from your heart and you will be amazed at how it can help you xx
 

Narrowminded

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Lenore congrats on the house and the car. Brian had a 2009 Camry SE and DS has it now. One thing I will suggest is chains or studded tires in the winters. It’s awesome in the summer, but slides like crazy on snow. Wish I would have known that was what you were looking for, would have mentioned the snow business before you bought. I pray you have better luck in the winter. Not sure if you travel all flat roads or not. Here we have lots of hills and that could make a difference.

Writing a book sounds like and excellent idea. People have told me I should do the same. Not sure I’m the writing type of person.

Yes our husbands were at polar opposite ends of “what will I do” with ALS. Interesting that they were both named Brian and both very strong in about what they wanted.

Hugs
 

Lkaibel

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Sue, on the snow thing yup getting winter tires but the 2018 Camry is a different car indeed from those 09 type models. It’s a bigger car now, much heft and rated midrange for snow.

I did notice too that even on my tin can of an 09 Corolla, just high traction all weathers made a big difference. Now with the bigger vehicle and going all out with Winter Tires I think I’ll do fine. Not sure what year your son has but the 2018 Camry looks like a whole other car :)
 

Lkaibel

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Tillie, thank you and I would like to read Jane Hawkings book.
 

affected

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I have it on audio book and have listened to it a few times over the past few years.
 

Narrowminded

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Lenore - I’m happy to hear they upgraded the Camry, I wish you very good luck with it this winter. Yes they have changed the body style a good bit on most of the line.
 

Lkaibel

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So, I had an experience with one company who recruited me where things turned out to be a no go. Today I had an experience with another company I applied to just yesterday.

They emailed me for a phone interview, letting me know I’d been “selected” for a phone interview (red flag one, arrogant language). Did the phone interview, and toward the end she explains that:

1. All of your references need to be supervisor references.

2. AFTER they make an offer, they need to speak with your current supervisor.

Ah, NO. He may well not consent to that gir numerous reasons, legal and otherwise, and what, you are going to make me an offer, back peddle on it perhaps based on whatever he says? NO.

She explained that has never happened, it would have to be something heinous, etc. Yeaaa whatever! She then said they “require this of all candidates”. I explained I thought it was very uncomfortable and I was no longer interested.

She mumbled something about checking with HR. Hmm, go away. Far away. No frying pans into fires for this kid. I would not hook up with them again if they called me tomorrow and decided they did not need that.

Not sure how they do it in other places, but on this country NO one “talks to your employer after” they make an offer. Wow, just wow.
 
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