Caregiver to my grandpa. Could hospice affected his passing?

My grandfather passed Friday, September 8th at 12:21am.

He suffered from stage 4 lung cancer. He was diagnosed last August and refused chemo and radiation. My grandmother is 82 and has trouble caring for herself. She has a HHA come twice a week, so they wouldn't let my grandfather come home without someone there to care for him. 

My grandfather and I have always been very close as I spent the summers with my grandparents since they lived 3 hours away. I lost contact with them for awhile because of my own selfishness. 

My nightmare began on August 23rd when my grandpa called me on the phone crying at the hospital because they told him they don't think he'd make it through the night. He went in with a collapsed lung and pneumonia. Well he sure did make it through the night and I raced to be with him the next day. He refused hospice the whole time because he wasn't ready to face the reality of dying since his whole side of the family passed from some sort of cancer. He was doing well until Sunday August 27th when the doctor had told my family that my grandfather was only looking at a couple more days due to his shortness of breath and them having to raise his oxygen to 15 over night. We agreed for him to come home under my care through hospice so he can die at home.

He came home Tuesday, September 5th beating the odds of the doctor thinking he wont even make it to Tuesday, but my grandfather was such a stubborn man. He was going to make it home. We got him all settled in and he was his normal self to me until the hospice nurse started him on morphine every 2 hours. To me it seemed like too much, but maybe to him it was helping. The doctor told us that upping his morphine would slow down his respiratory and speed things up. I wasn't happy about it, but I wanted him to be comfortable. Wednesday night he screamed for me and it scared me to death saying he was having a hard time breathing. So the nurse told me to give him ativan and a dose of morphine. He seemed to be okay and even through Thursday he seemed fine. At 1030 I went into his room to give him his medicine and told him i'll be back at 12 to give him his breathing treatment. Something didn't seem normal to me when I woke up from my nap, I didn't hear him. I got up from the couch in the living room and walked to the bedroom to find him in labored breathing and his nasal cannula on his forehead and the way he looked I could tell he was about to pass. I called his name a few times and he was unresponsive and cold. I called my mom and got my grandma up and as soon as my grandma held his hand for a few moments he stopped breathing. It was almost like he was waiting for my grandma to be with him.

I don't sleep at night anymore because all I can think of was the way he looked. Always questioning my moves that night. Did I not hear him because I was asleep. Should I have stayed in the room with him to make sure he didn't take his oxygen out. Did hospice give him too much morphine. Why didn't hospice bring me another mask, but I don't think it would've helped at all. hoping I can find someone who was a care taker and that can relate to my story. 

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I am so sorry for your loss. And your entire experience in this terrible loss.

I was the main caregiver for my father in law. He had Alzheimer’s and his situation was a long agonizing experience.

At the end, he was in hospice at home for about 3 months. He died in my arms, gasping for breath with fear in his eyes.

I actually have a lot of experience with Hospice. I am a spiritual care provider for the sick, and those who have suffered loss, and I have been in the room more than I care to remember when some one has died. It is NEVER like on TV. It is rarely peaceful. It is often exactly as you have described your experience.

Your experience is not unusual. First, what you described is the normal Hospice protocol. They are mainly focused on palative care. They are not there to extend life. They are there to ease pain and make the patient as comfortable as possible. They are only there because it is a terminal condition past the ability to treat. I know that’s hard. Many people resist Hospice because they can’t face that reality.

Second, it sounds like you did a GREAT job for your Grandpa. You obviously love him very much. And you were there at the most critical time. Because of you, your grandpa fell asleep with the most important people in his life around him.


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