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Born in the 50s

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Comment by Athena53 on May 29, 2018 at 9:22am

Annie25, we do what we can. 

I really think I got off easy; I was retired, Ron didn't really get to the point that he couldn't be left alone till the last couple of weeks or so -and even then I could make sure he was settled someplace, had whatever food/drink he wanted and had taken his meds and had books or the TV, and then go to the gym or the grocery store (but not both).  If he'd been too heavy for me to move, or inclined to get up and wander around, or had personality changes that made him hard to deal with, I might have had to put him in a residential hospice as well.  A loving husband wouldn't want you to burn out, endure abuse, injure your back moving him, or otherwise jeopardize your own health to keep him at home.  Neither of you had ESP to know exactly what the end would look like.

Comment by Annie25 on May 29, 2018 at 8:59am

I am fairly new to this site and have been reading all of your posts the last few days.  I lost my husband 18 months ago to lung cancer and yesterday would have been our 41st anniversary. I still feel a tremendous loss  and identify with everything all of you are feeling and writing about. I too have a great deal of guilt due to the fact I promised my husband he would die at home however at the very end we had to place him in hospice. I could no longer care for him alone and did not have anyone to assist me. I truly hope that he has forgiven me as I feel I did the best I could. 

God bless all of you in your journeys and thank you for helping me to not feel so alone in my grief. 

Comment by Athena53 on May 29, 2018 at 8:40am

CarLady, thank YOU for bringing it up.  These are discussions we can't have with 99% of the people we know.  I've handled Ron's death much better than expected but I still found it therapeutic to write that post about his last days and hours and that tiny bit of remaining guilt, but we have to look at the big picture.  We did everything we could within the limits of our knowledge and resources.

Comment by CarLady on May 29, 2018 at 8:14am

Athena thanks for sharing your similar experience, i appreciate the effort it takes to relive our spouses last hours. I guess because we were together every day during the 14 months of his illness, and it was so intense to live through this experience, I also have difficulty remembering him as the strong healthy outdoorsman man he was all his life until illness struck like lightning.  

I watched the movie Hereafter by Clint Eastwood and it brought me peace to know my husband has joined his father and they are in a good place.  My husband was not a religious or particularly spiritual man, however about 3 days before he passed he told me he was talking to his father who was just outside the window.  His father passed away the year before.  I was stunned.  My husband never told an untruth in his life and he had true clarity of mind those last 3 days. When I told the palliative care Dr about it he said his father has come to guide him through the journey.  I hope when it’s my time my husband will be the one to come for me.  

So hard to relive this, I’ve cried a lot this morning writing these 2 posts but you are the only ones who would understand.  Thanks and hugs to you all.  

Comment by NoLongerInBergenJC on May 29, 2018 at 8:13am

So many of us have that "not being there" guilt.  My husband's removal was scheduled for a weekend; perhaps on a weekday it might have been different.  A nurse asked me if I wanted a chaplain and I said no.  I think she assumed that meant I didn't want ANYONE, or else there was not a social worker there on a Saturday.  So no one prepared me for what was to come.  I went into the room after they removed the vent.  Then they came in and started suctioning him.  And the suction made him buck up and his eyes opened.  And I went nuts.  Now his eyes had opened a lot in the previous days and it had been clear that he was not in there in any significant way ("The lights are on but nobody's home.")  But the bucking and everything made it appear that he was in pain.  I ran out of the room screaming at the nurses station, "You promised me he wouldn't feel anything!  You told me he wouldn't be aware of anything!"  And so on.  And with no social worker or anyone there, there was no one to explain anything.  After that, they got the critical care doctor (who had been caring for him for the two weeks) and I don't remember what he said to me.  But they would not let me back into the room.  So he died with me sitting outside the door to his room.  

That was just really, really hard to write.  It is a thought that I have pushed out of my mind for over 4 years -- that I failed him.  I failed him in so many ways.  I was so depleted from work demands that never stopped, from him lashing out at me and not doing what he needed to do for his own care (hydration, taking aspirin every day, and so on).  I was exhausted.  I had a colleague on a team I was working on blaming me for her own mistakes and going to my manager about me while I was dealing with the hospital and everything else.  My manager was taking her side.  I was afraid of getting fired.  I'd had no idea if he was going to die, or need months or years in a nursing home, or what.  I had really, really wanted to rise to the occasion, and in the end, because no one told me what to expect in his final minutes, I failed him yet one last time.  Those are the things that are so hard for me to deal with.

I retired from my job at the end of January (same job).  I simply couldn't do it anymore.  I was told that I would get my bonus, and then I didn't.  It has been really hard to let  go of the bitterness.  Because when I needed  for the "reward" for my hard work to be support during this time of need, all they cared about was deadlines.  And then they stabbed me in the back one last time.  It has been hard to let go of that, but they have poisoned my life enough.

Comment by Athena53 on May 29, 2018 at 7:39am

CarLady, my husband also died of AML at home under hospice care.  He was 78 and his body had been weakened by 10 years of a precursor condition (polycythemia) so they said chemo would have only a 3% chance of success.  We chose (with no discussion needed) to skip chemo.

Your description of your husband's last hours reminds me of the last few days with Ron.  We got the terminal agitation under control (he kept trying to get out of bed but was too weak to stand) with appropriate meds once I came to my sense and called hospice.  Two days before he died he wanted to go out for a drive.  I still remember getting him into the wheel chair, down our two small front steps and into the car.  At that point he weighed so little I could manage it.  We drove around a nearby lake, we talked, he asked me to get him a beer at a convenience store, and then we got a banana milkshake at DQ on the way home- a favorite even when there was little else he could eat.  He never did open the beer.   I have fond memories of that drive- I think he wanted to say goodbye to the world.

I was sleeping in the guest BR the night before he died- he tended to wake up, watch TV, etc. and I needed my sleep.  Something woke me up- still not sure what- at 4:30 AM and I went in to check on him and his breathing was shallow and his eyes were half-open.  I wish now I'd have just stayed there till he was gone. Instead, I was in and out of the room, reading aloud from the Book of Common Prayer and the Bible in the room, then going back to the kitchen and working on his obituary.  By 7:15 AM he was gone.

But, like you, I was there in his last days, did everything I could to keep him comfortable and was there during his last conscious hours.  We provided what they wanted and it was a graceful death even though we weren't there at the precise moment.

BTW, the beer stayed in the refrigerator till the day I brought his ashes home.  I drank it in his honor that night.  

Comment by CarLady on May 29, 2018 at 6:26am

Good morning from Toronto.  The comments about guilt strike right to the heart; its been 4 years 8 months since my DH of 34 years passed away from AML leukaemia. He was a lovely man, kind and modest to his last hour.  After 14 months of chemo, transfusions and clinical trial treatments the Dr. advised there was nothing more that could be done and it would be cruel to put him through more.  By this time he was so weak he needed assistance to walk but his determination to stay with us never wavered.  His last week was spent at home, where he wanted to be, with our son and daughter and I. We all took leaves from our jobs. His last 3 days he was almost manic, not sleeping, roaming all over the house and large garden. It was as if he wanted to make sure everything was ok before he left. A palliative care practitioner visited us and said we should just let him do whatever he wanted because this was his journey and his way of preparing for it.  The Dr thought he might last another week or so.  He passed away only 2 days later on the Labour Day weekend.  Although i promised him we would make sure he didnt suffer at the end, his last several hours he was suffering.  It took many hours to get a visit from an on call doctor because it was a holiday weekend.  When she came, she put a port on his arm and taught us how to give him morphine shots in his arm for the pain. Then she left.  My kids and i did this twice, and he fell into a deep sleep.  Around 2 in the morning i was half asleep on the sofa when i imagined i felt his presence beckoning me to his room.  I told myself i was imagining things and stayed where i was listening to his breathing. Then suddenly it stopped!  I leaped up to his room where the PSW was and asked her if he was ok.  We checked for signs of life but he was gone. I stayed with him for several hours after as we could not get anyone until the next day due to the holiday weekend.   I cannot ever forgive myself for not getting up to hold his hand when i felt his presence. I hope his spirit knows we were with him in our hearts and forgives us.  Peace to all of us.  

Comment by Barzan on May 29, 2018 at 5:47am

When my husband was diagnosed, it was at the hospital where I worked with the medical staff and therefore, he was seen by the chiefs in the specialty.  Needless to say, his care was excellent.  At the hospice, because of my connections, he was given a private room with 2 large windows he could watch the outdoor activities and gardens.  The staff provided excellent care.  Perhaps, this is what it takes to get the best care for a loved one.  It really saddens me.

Regarding husband's clothes, I picked out his favorite shirt and a friend of my mother-in-law's made a teddy bear out of it.  The bear sits in my bedroom and gets lots of hugs.  It sure is comforting to have that little keepsake.  When I got rid of his clothes, I donated them all to a homeless shelter instead of goodwill.  I wanted someone needy to have them.  it was difficult to empty his closet but knowing that the clothes will be appreciated helped ease my sadness.  

Lets be kind to ourselves.  Sending good joo joo your way.

Comment by NoLongerInBergenJC on May 29, 2018 at 3:32am

Reit, I bought an expensive gas grill during my husband's illness.  For me it was a gesture of hope over reality.  We never used it.  I had it put on the moving truck when I moved.  It is still outside.  It is probably all rusted out now because I never even uncovered it.  I have never used it and probably never will.

Comment by booktime (Susan) on May 29, 2018 at 1:41am

Riet, step by step. Don't force it, just do if you want.

Not out of your mind, just out of the reality you knew so well and trying to claim a space in the new.

I was lucky in that Ed didn't have much of a wardrobe - he worked in a kind of a factory so no ties needed! But it took me several stages to take care of his things.

I'm wearing a favorite blue shirt of his right now!



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