“When your legs don’t work like they used to before And I can’t sweep you off of your feet Will your mouth still remember the taste of my love? Will your eyes still smile from your cheeks?…And, baby, your smile’s forever in my mind and memory I’m thinking ’bout how people fall in love in mysterious ways” – Amy Wadge, Ed Sheeran

1 year ago today I failed Duane. He had chosen NO medical intervention. He was very clear on what he wanted. One of the non life saving things he was adamant about not having was a catheter. Did not want one, I mean really did not want one, would never have consented to one. So I held a urinal for him, even when he was out of it, I would put it there in hopes my timing was right, it usually was. We had had a few issues in the previous few days, a few accidents and it seemed that any time he passed urine he was in pain; flinching and grimacing. We thought he may have an infection, but at this stage there was nothing we could do about it. Our main hospice nurse suggested we put a catheter in for his comfort. I went back and forth, know that was the last thing he wanted, but I also knew he was in pain. I wanted his journey to be as painless as possible and I also wanted to honor is wishes. But at around 11 am on July 7, 2017 I agreed to have one placed. 

Journal Excert…..

7/7/2017

There is a huge misconception about sitting and watching someone die. They don’t just go to sleep, they lay and suffer and it’s brutal and heartbreaking. 

This is not at all what I thought. It is in a way peaceful but at the same time not. It’s horrific and crushing and I feel helpless. 

Life sucks watching someone die.

– xoxo Victoria

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5 thoughts on ““When your legs don’t work like they used to before And I can’t sweep you off of your feet Will your mouth still remember the taste of my love? Will your eyes still smile from your cheeks?…And, baby, your smile’s forever in my mind and memory I’m thinking ’bout how people fall in love in mysterious ways” – Amy Wadge, Ed Sheeran

  1. We see many conversations dedicated to those living with ALS, but very few focused on the unimaginable trauma their families must endure and the scars they will live with forever. For every person living with ALS, there are many more suffering because of it.

    I know my own grandchildren are saddened because they miss our carefree days of fun hotel getaways, homemade crafts at holidays, volunteering at the zoo, swimming, biking, baking cookies, all the things that make lasting memories. When my legs could no longer support me, not being able to take long walks with my grandchildren seemed unbearable. When my arms couldn’t wrap them up in hugs anymore, it was agonizing. I am now faced with the reality they may never again hear my voice saying “I love you” as I lose the ability to speak.

    My loved ones are now facing the same fears and agony that torture you. I am so sorry for the pain you live with.

    Liked by 1 person

  2. It was a brutal. We were told that most ALS patients drift off to sleep. My husband, best friend struggled for 24 hours. I was helpless and I still replay those last 24 hours in my mind. It will be 2 year October 24.
    My heart goes out to you! 🙏🏻

    Liked by 1 person

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