Dear Barbara, I cared for my Mama in my home up until she passed. Hospice care was only for a week. I received their package of paperwork, along with one of your books, "Gone From My Sight." I was told by the head/charge nurse not to read the book right away, but rather wait a while, so I did. Looking back though, I so wish I had read it after the nurse had left my home that day. It would have helped me so much and I would have understood so many things going on with my Mama. My Mama only lived 6 days from the initial visit from Hospice. Please reiterate to others that sometimes suggesting to wait on reading these booklets may not be the best idea. Thank you.
What in the world was this nurse thinking! Our job as end of life workers is to educate, educate, educate! Educate at every opportunity. With end of life care there is no later.
By educating family members and caregivers, we are neutralizing the fear and concern they have about what is going to happen to their special person. End of life education teaches that what mom is doing is normal, natural, is “here in the book” so it must be what usually happens. Fear is lessened. Gone From my Sight is a good source for that education. Add The Eleventh Hour and you have even more guidance.
The role of any end of life worker is to begin teaching immediately, on the first visit -- teaching about approaching death, what to look for, and what to do. That’s our job!
To put this opportunity off until later is very upsetting to me. Time is the enemy! There may not be another time, another opportunity to teach, to guide, to support.
This woman was left alone, without guidance, when the guidance was available. That is not doing our job.
Here was my response to this dear woman (I changed her name):
Oh Julie, I am so sorry. Of course Gone From My Sight should be read as early as possible. I wrote it to be a guide for others as they live through a loved one's dying process. Its information is good to read anytime, but in the months and weeks before death is when it does its best work. Reading it after death helps us understand what happened, but we need it most while all is happening. My blessings to you. Barbara
Something More... about There may not be another time... Teach
I used to travel all over the country each month educating hospice staff at their agencies as well as at conferences. It became too much. I wanted to spend more time with my family. So I turned that training into a three part video for hospices and end of life workers to use to educate their staff. In part one of This Is How People Die, I talk about when and how to begin teaching the dying process to families.