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    • If you know someone that battled ALS, please add them here
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Active member
Feb 22, 2014
Lost a loved one
It’s been two weeks since my husband Toby's, battle with ALS ended on June 2, in the afternoon with a respiratory therapist, RN, Chaplin, Social Worker, various other team members from Hospice, his three grown sons, my sister, and our main caretaker Kay all in attendance in our home - where he wanted to die. He absolutely hated hospitals - and with good reason - but that's another book.

Both his neurologists concurred his suffering had gone beyond tolerable and we all therefore agreed with them to wean him from his BiPap. Toby had of course agreed with this decision much earlier when he was more coherent, but was still wanted to fight like heck! His final phase of loss was very swift considering the whole 2-1/2 year journey as his caregiver, and the last weeks were worse than anything I could have imagined.

Lying here in the twin bed which was beside his hospital bed in the living room for about 2 years? (sense of time is totally distorted) seems to comfort me a bit. There’s our big old King upstairs but I’ve grown accustomed to our ‘studio’ apartment on the first floor. This week the equipment was removed or donated. I worked to make the living room look like one instead of a medical facility. I still have personal belongings to sort out with his three sons when they come back to remove the ramp.

Watching the decline was so brutal that we all felt more relief than grief when the time actually came… but now (ironically) I seem to be feeling the grief more now that things have settled down and I’m here alone. I know there were life lessons learned - some difficult and some enlightening - but it will be awhile before I can sort it all out.

My main purpose was to thank all of you who post regularly and are so comforting and helpful to all of us on the forum. Most of the time I was just hanging out here… jumping around from forum to forum - taking bits of posts to try or use for us. I was here almost daily - sometimes several times. It was the only place I actually felt comfortable. Posting was always difficult and became pretty much impossible for me the last year or so. I was just so exhausted and my body was totally giving out - it took every ounce of will I had (and was given) just to stay afloat. Hospice became involved the last couple of months and there aren’t enough accolades to praise them. They saved me and comforted Toby. We became very close - like one big circle of love.

It’s an adjustment being in such a quiet place now … my companion gone, phone not ringing; people no longer coming and going. I’m here with my memories and I still feel the need to process my husband’s death and my need for rehabilitation physically, mentally and spiritually. God Bless you all still in the trenches … once day you will find yourself trying to realize, as I am now, that’s is OVER. I honestly started to believe it would never be over and then - suddenly I am here writing this. I’m not the same woman who found out 30 months ago that her husband had a terminal disease - and my prayer is that eventually I will be better for it - wiser, more loving and tolerant. I’m still raw - and sort of ‘going through the motions’ but life does its best to move along, no matter what, and .. so must I.

Thanking you as well as wishing you blessings and strength to endure,
Nancy, I am so sorry for your loss and the struggles you and Toby went through. Your post was so very open and honest. I so identify with everything you said and want to tell you thank you for sharing these feelings. I HONESTLY had tears in my eyes reading it. We do change and this disease is way beyond cruel to all of us. I will pray tonight for strength and healing. You are not alone and we are all sending you hugs. I would give everything I have to stop the monster we call ALS.
Oh gosh ... now I'm tearing up ... your kind message just reinforced why I spent so much time here. Thank you for your caring words and I want you to know that they helped me! I was sort of 'iffy' on whether or not to just jump on and let the words fly.... I loved your message. xoxo
Very sorry to hear about Toby, Nancy. He was fortunate to have you and so many others at his side.

Nancy- my condolences for your loss. And my total admiration for your fortitude. It sounds like a crowded and busy end. Thank you for your post- may you find peace and joy while you navigate your new normal.

Oh Nancy

Your words are so important to all of us.

I have so often thought of you even though you stopped posting, and worried about you as it was indeed a very hard road you and Toby had to tread together.

I don't think any of us as CALS can even begin to imagine what it will be like after. As you said, we are so caught in the moment to moment business of getting our PALS through each day, and trying to rest enough to get to the next day.

I could 'see' you laying in your bed in the living room.

You were an amazing CALS, and you now have a lot of grieving and healing to go through. Please just be kind to yourself. You do whatever feels right.

I hope you can write more, I could feel how cathartic it would have been just to lay down the words you wrote here. So much true and raw real feeling. BEAUTIFUL even though it was full of your sorrow, it was full of YOU.

You are still family here, and we are still holding onto your hand xxx
I am so very sorry for your loss he is flying free. Wishing you peace and comfort
I'm so sorry for your loss. My father's last day was similar with weaning off the bi-pap. Words still can't describe that experience. I hope you can find peace in the days to come.
Sorry for your loss and happy for Toby's release from agony. Your note brings out the humaness of our struggles, both CALs and PALs. I appreciate this forum for the ability of us all to share our journeys. Good wishes for your path to the new normal.
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NIKKI J: Whoops .. what happened??

I've been working on some sort of answer for Betsy but it's such a gigantic subject.
I keep writing and deleting in an email to myself so I don't run out of time. Already it's almost been an hour and I still have about 25 answers - none of which will help her.

Supposedly her post was "COPIED" but I don't see it.

This is not the post I originally read - it was altered??

Was it moved entirely??:confused:

I don't understand.
The post was copied in its entirety to the thread I linked in my note. Only this one was editedThe link works for me right now. I think the discussion could be valuable but should be conducted in a separate thread. That thread is currently second below stickies in general but simply clicking the link should have taken you there.
Nancy, I can so relate to your thoughts and what you have gone thru. Steve also went thru a very swift perioď of decline just before he died. He fought and refused to use his tools. Sending you big hugs because yes,was a relief for us. Many people wouldnt understand that, but the brutal nature of this disease is so emotionally and mentally destroying.

With my brother right now that I havent seen in 10 months. He asked me what happened to me....he said I looked wrecked. It is going to take a very long time to recover, if I can. 3 months in and it seems li,e a lifetime ago yet the wouns are fresh.

Take xare sweet Nancy, we love you......and may Toby rest peacefully. Steph
Oh Steph,
Thank you for responding; your words/presence brought tears to my eyes because we shared so much. As always I related to your words and wish you as much peace and harmony as is possible. Just because we 'deserve' it doesn't make it happen, right? It's all so confusing on various levels. I wonder, and I remember, and sometimes I even question ... I'm tired of hurting.
As ever,
Hi all, I am new to this forum. I am so sorry for your loss. I was just checking out forums and found this one helpful. I lost my cutiepie to ALS on Valentine's Day, he was diagnosed 11/12/13. The worst day of our lives. Hopefully we can find some confort. Having a hard time with Father's Day tomorrow and Andy's 61st birthday next Monday.
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