Elena 
All of the arrangements have been made and I am just putting the finishing touch on things for my mom’s calling hours and funeral.
Sleeping for me has been very very difficult. My mother’s death was not the sweet, easy passing from deep slumber into death that I had hoped it would be with the help of hospice. In fact, I am very upset with the lack of a role hospice played in my mom’s care and wondering what the heck they billed Medicare for.
Basically on Monday, I knew that after the weeks and weeks of Mom hovering in the near vicinity of dying, she was finally taking the trip. Her legs were starting to turn purple, I could hear the “death rattle” in her throat and she had a fever. I had read about those signs and I was prepared for them. She hadn’t had those particular signs before, so I knew we were getting closer. However I was not prepared for and I had not read that her back would be arched, her head would be thrown back, her eyes and mouth wide open as if she was starving for oxygen. I held her hand but she could not be comforted. So I asked mom’s nurse if she could have oxygen just for a comfort measure and the nurse was very willing to do that if it would help mom feel better. She couldn’t figure out why mom was taking that position either and we readjusted her head and neck. The nurse also assured me that mom had had her scheduled morphine.
Originally uploaded by Tracie Taylor Photography
I stayed with mom an hour and then went to pick up Sam and take him home. I checked a few e-mails, talked to my sister and then headed back to the nursing home. But by the time I arrived she was gone. I’m not upset about that. I knew about a study that determined that more than 80% of the people die alone, even if they are surrounded by loved ones. So I knew that was a possibility. But I was not prepared to see my mother in what can only be described as a hideous position and agonized expression as if she had received no comfort at all. And this is what I mean by calling this a brutal death.
A very chipper and sweet hospice nurse arrived shortly thereafter and tried to be very helpful, but really she was in the way more than anything else. I had to find the number for the funeral home for her as she wasn’t even from the area. But it was a regular aid from the nursing home who readjusted mom’s body, put a towel under her chin to close her mouth and gave her hair a quick brushing.
Today someone from hospice called to see if there was anything they could do.
“Yea, actually there is.” And I started to explain that this was not the first death I had witnessed but it was by far the most painful and agonizing to watch. Is this what cancer death is supposed to look like? Is there nothing hospice could do to make the death more painless, sedate and easy? and if not, what the heck were we paying them for?
And at that point I pretty much lost it with the person on the phone. I have been angry and haunted by this ever since I saw my mother on Monday and I want to know why. The explanation, “every death is different” doesn’t quite cut it with me right now. My mother struggled in agony while we helplessly looked on and they weren’t there to help, explain or alleviate. I am getting furious just thinking about it.
The unfortunate hospice caller told me that someone would come to the calling hours on Friday.
“Don’t bother!” I said in a rather stern scolding voice, “We don’t need you there and I don’t want you there.”
I’m sure she’ll pass the message along.
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