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.
Two things are consistent with end of life. First, people don’t die like in the movies. Second, we, the watchers, don’t have any role models on what it is like to die.
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.
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Our hospice uses your book in our care goals. As I meet with families and train nurses. Nursing is given that along with Knowledge Reduces Fear booklet. I reference we all speak the same language, that of understanding this process, although different for many, yet so many similarities for all. I can’t tell you how much peace comes with the 1-3 months section as many of the families have been struggling with why won’t she eat? Or she sleeps so much now! Or I walk in and note to myself oh this won’t be long… and I take the book out while we talk. The ah-ha moment as they understand why they couldn’t coax a loved one with one more bite. Or the last hospitalization with IV fluids and she was so good for a few days…. Your wisdom in just writing that first book was powerful for both hospice staff and families walking this journey, even before they understood what was happening. Thank you for your gift and mission Barbara!!
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BK Books replied:
Hi Darlene, I like that you said " families and nurses". So many healthcare professionals are just as confused about how life ends as families. Blessings to you in the work you are doing. Barbara
Hello Barbara,
In 1999 after a courageous fight with an 8 year IPF diagnosis. His last hospital visit he home with those words “ possibly only a few weeks”.
He refused hospice and in the beginning had had a visiting nurse come in and she provided my with these booklets.
I was forever grateful to have them to refer to as I cared for him. Since then I have shared them with others or purchased a set for others in need of some guidance.
They were on point and assisted me as I had never witness a person slowly fad away.
He passed peacefully, in his home, with his family by his side.
Thank you for all you do in guiding us through one of the most difficult time in my life.
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BK Books replied:
Thank you Christine. My blessings to you and your family. Barbara
Hi Barbara, I remember a recent post with the same situation of someone being told to wait on reading the book. I had mine for a couple of weeks, I put it off out of fear, as though I knew what it was going to say. A close friend adamantly told me “read the little blue book!” I read it two days before my mom passed, so glad I did, and nearly six years later, still follow your teachings.
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BK Books replied:
Hi Emily, knowledge reduces fear if we can get past that first hesitancy of “do I really want to know?” Thank you for sharing. Blessings! Barbara
I agree that education should be done from the first moment. When I offered Gone From My Sight and The Eleventh Hour, I always explained a summary of the book using the time table at the end, and told them if reading it at the moment gets too difficult to put it down for awhile, but not too long, as it will give them explanations on the dying process that will be helpful to know what is normal, and that the 11th Hour gives them suggestions for things families can do for their loved one at a time when they often feel helpless. And then of course told them that if they had any questions or needed any support, they could speak to anyone on the hospice team. I had many families give thanks for that encouragement.
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BK Books replied:
Hi Susan, you use the booklet exactly how I envision them being used. Together as here is what is happening and here is what you do while it is happening. Blessings to you in the work you are doing. Barbara
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