I was a hospice nurse for a hospice that was just getting started. This was in 1985, when all hospices in the U.S. were just getting started. Part of our goal was to be with the patient and their family at the moment of death. To do that, we had an on-call, 24/7 system.
Now the thing about being on call in hospice is that most of the calls don’t really need a home visit. BUT if you don’t go, no matter the reason, you will probably find your patient in the ER by morning. Families are afraid, they need reassurance that nothing bad or abnormal is happening — hence home visits in the middle of the night.
One night, actually 3:00 in the morning. I got a call from a family saying that mom was “acting strange.” Once there I begin explaining what to look for as death approaches, that the “strange” things mom was doing were part of how we die. As I was talking, one of the daughters grabbed a paper and started taking notes. It struck me right then that she should not have to take notes. I should be able to give her written guidance. Guidance that would tell her what was happening and reduce some of the fear that surrounds dying. Information she and her family would have after I was gone.
That weekend I sat in my living room and wrote on yellow legal paper— there were no computers then — what I wanted families to know about dying. I then typed it out and started handing it out to the families I was caring for. BUT after a few times giving it to families, the list on paper felt cold, too medical, not personal enough, not comforting enough.
I rewrote the information to be in the form of a booklet. My goal was to have it simple enough that everyone would be able to understand it. That meant no medical terminology. I wanted it to be easy to read,so I used large print and I wanted it to be gentle. The topic was hard and scary. It needed to be gentle.
When the test copy finished, I took it to my hospice director, told him my reason for writing it, and asked him to print it in booklet form. He read it and said “no.” After some discussion, he said he didn’t want it, that it wouldn't be useful for the hospice. BUT he said that I could use it and do anything I wanted with it. I could print it myself if I felt that strongly about it.
So I did. And titled it Gone From My Sight: The Dying Experience
Since writing "the little hospice blue book" I have answered other needs with other booklets. They are all in an essential bundle called The End of Life Guideline Series. If you are caring for someone approaching end of life, I encourage you support yourself and get this bundle.
