My husband died an agonal death of esophageal cancer 6 months ago. I am a registered nurse and had the skills to take care of his complex medical needs at home. No one could relieve me because of this. I took care of him 24/7 for 9 months. He died at home.

Kent wanted to live every day, every hour, every second he could wrest from life, despite great suffering. The decision to go on Hospice and stop the tube feedings was very hard. When he finally died, he had lived another 28 days, twice as long as expected. He was alert and oriented up until 9 hours before his death.

Watching my husband starve to death was a horror that I can’t “unsee”. It is like I watched him die in a concentration camp. I felt I gave him wonderful love and care, so I do not feel guilty. Kent wanted to 1. Die at home, 2. Die with me by his side, 3. Die with his dog at his feet. I gave that to him.

But I am paying for this. I do not see any path through seeing the horror of Kent starving to death. I believe I will process other parts of this grief. But not this.

Why doesn’t this site have GRIEF as a category.

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Thank you funkygrandma59. Your experience was exactly like mine, except lasting much longer. I am trying to replace the images of his death with images of his life. I have bunches of pictures of happy times taped to my refrigerator. At first, when I thought of him, I would picture my granddaughter. That was wrong because it just pulled her into the negative side. So I will use your advise and try to think of the good pictures.

My doctor has said I probably have PTSD., too. I live in a small town and there are NO counselors who take my insurance. My hospice aftercare wasn’t helpful. No real complaint, it just wasn’t a good match. The county outfit is unfit for service. I have a support system, but this situation is above their pay grade.

Last week I started volunteering as a docent for a Native American museum. Distraction is a good thing.
I will take your advise and try to replace the good with the bad.
I am so glad you shared your story



Unfortunately I can relate all too well with your experience. My husband after almost dying from aspiration pneumonia in Nov. 2018, came home completely bedridden in our living room and under hospice care, where he remained for the next 22 months. Other than the nurse coming in once a week to start, and an aide to come bathe him twice a week, I was on my own.
My husband had a supra pubic catheter, which made things a little easier for me, but I did have to hire an aide to come put him on the bedside commode every morning so he could poop.
During the 22 months my husband started having more and more pain which hospice had a hard time controlling. On Aug. 5th 2020, I knew something was very wrong when I tried to wake my husband for breakfast, and when the hospice nurse arrived I was told that my husband would be dead in 3 days as he was in a partial coma.
Well the 3 days came and went and he was still alive and didn't end up dying until Sept. 14th 2020. He went 41 days without eating(hospice said that he broke their record)and about 25 days without any fluids other than his fentanyl pain pump. He suffered greatly and hospice couldn't get him comfortable. They wanted me to let them take him to their hospice home where they could administer stronger medications(that they're not allowed to give in an in-home setting)so he wouldn't suffer so, but prior to my husband going into complete unconsciousness 2 weeks before he actually died, I had asked him if he wanted to go and he said no.
So I honored his wishes like you did your husbands too to die at home. It was horrific to watch him wither away after not eating for so long and the noises he made were none I had ever heard before. I was traumatized for quite a while after that and honestly believe that I had suffered PTSD.
It's now been over a year and a half since my husband died, and now when that visual tries to sneak into my brain, I am able to stop it and replace it with a happier visual of him. It took time to be able to do that. It sure didn't happen overnight, so give yourself some time, and try instead to remember happier times with him.
I hope that you're seeking some kind of grief counseling to help you through this.
I'm so sorry that you too had to go through such a traumatic experience with your husbands passing. I pray that it time this too shall pass.

Found the category, thanks. There are memories that do not go away. Loss of a child and rape would be two examples. It would have been easier if he had died in the “normal” two weeks. But the protracted death of 28 days and me providing the 24/7 care for that long has pushed through my limits. I can distract myself with activities, but when I stop, Kent’s suffering comes back as clear as the month that they happened.

The care I gave him and watching him being awake and starving is seared in my brain. I can not eat properly, and have lost 45 pounds. Every bite of food is a protest against Kent’s last 28 days.
I near you when you say the memories will ebb and flow. It is just that I do not see a path to it.

Pajones if you go into Care Topics there is a Grief category but do not feel you have to just post there. We all talk about grief throughout this forum as it's a timely subject for many of us.

I'm so sorry you experienced this and I understand what you are feeling. My mother was disconnected from all medication, fluids, any life saving measures and lingered for seven days. It was called Comfort care which is ironic cause comforted was the last thing that I felt but I don't as others have said on various threads feel like they murdered my mom or anything equally dramatic sounding. I did understand it was a process that needed to happen. But that didn't stop me from experiencing the horror that you described with your husband.

It does go away. The pictures going through your mind will ebb and flow and eventually disappear altogether. In the meantime feel free to visit the grief forum or stay here and we'll all try to support you as best we can.

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