Final days

[Elkhorn3]

Hi friends,
My husband was diagnosed with Bulbar onset ALS this June, along with FTD. Over the summer he deteriorated so quickly - from hiking and doing major home projects to shuffling, then a walker, then a wheelchair. Now he is in his final days, bed bound with only a few minutes a day upright in a wheelchair. He hasn't been able to speak since May, but he can still do thumbs up and thumbs down.

He's been through every imaginable state on this journey - rage, anxiety, craziness, withdrawal, mute adjustment - the whole whitewater stretch of River.

And now we are in a peaceful place, surrounded with family and friends, music and love. He sleeps most of the day, and we are watching his body slowly play itself out.

I am sorry for his anguish, proud of his spirit, baffled by his FTD, and unspeakably grateful for the life I have had with him.

For those of you in the midst of the struggle with this brutal disease, I hope you too will find this place of peace when the time comes. It is so precious.

And thank you all for your support and suggestions throughout this Cannonball Run.

- Krys

 

[frankb]

So sorry, Krys.

 

[lgelb]

Very sorry, Krys. Let us know if there is anything we can help with, or feel free to vent any time.

Best,
Laurie

 

[affected]

Very sorry Krys - so much the same for us, such torment during, but the last 3 - 4 days were peaceful and my Chris had a gentle passing that was a true blessing 💜 I hope this for you both.

 

[Bestfriends14]

I'm so very sorry, Krys. My heart is with you through this difficult time.

 

[vltsra]

Dear Krys, thinking of you and your family. We are here for you.

V

 

[DFM20]

I am so sorry, Krys. I know the time of peace you are describing and pray that it remains until the end for both of you. You are in my prayers.
Dave

 

[Zinta]

i Am so sorry for what your husband and you are going through. I lost my husband to ALS in 2016. He was diagnosed in May, died in October. I was blessed that he still had his voice up until just before the bitter end. Like your hubby, Ed was a hands on guy. One of the last projects before he was obviously symptomatic was a remodel of our family room in January that year. He was always an amazing painter and could ‘cut’ between the wall and ceiling freehand like a razor. I noticed that it was a bit sloppy for him. I will NEVER repaint that room. It was him, his illness, his future that was played out.
bless you.

 

[pittsburghgal]

Krys, I am thinking about you and wishing you strength and peace.

Sharon