NeedCourage
Active member
- Joined
- Feb 22, 2014
- Messages
- 73
- Reason
- Lost a loved one
- Diagnosis
- 12/2013
- Country
- US
- State
- PA
- City
- SW
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
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
