That weekend I sat on my sofa with a yellow legal pad (before computers) and wrote what I wanted families and caregivers to know about the natural dying process. I knew it had to be short (people don’t have the time or energy to read a book when caregiving). I knew it could not contain any medical terminology, as most people don’t know the meanings behind most of the medical terminology used by medical professionals. I also knew the message had to be gentle. The readers would be scared and stressed. I wanted the knowledge to comfort and reassure them.

     That weekend was the birth of Gone From My Sight. It started out a list of signs of approaching death with a timetable. That sheet of paper seemed cold and flimsy. Would the coldness make families less likely to embrace it (i.e., it still lacked the empathy and comforting touch it has since become known for), or did its original formatting as a sheet of paper mean it would likely not hold up physically? SO – Gone From My Sight became a booklet with easy-to-read, large print, and a manageable size that was easy to hold.

I gave the booklet to my patients’ families. I offered it to my employer and it was refused – so it became mine. 40 million copies later Gone From my Sight has a life of its own.

     How do I envision it being used today? Ideally, the hospice nurse or end of life doula sits with the family caregiver and literally reads it out loud with them. By reading it together, you can discuss where dad is in the dying process. It opens the door to questions and builds rapport and trust. It should not just be included in a hospice’s initial packet. When included in the packet, it doesn’t get read early enough. It gets lost in all the busywork papers.

We don’t have role models on what it is like to die. We don’t have access to accurate information on approaching death, so fear walks with families and caregivers. Knowledge reduces fear. Knowledge comes from Gone From My Sight.

     I wrote a companion booklet, The Eleventh Hour,to guide families through what to do while all the signs of approaching death are happening. Especially in the hours to minutes and just after the person dies.

Something more… about “That weekend was the birth of Gone From My Sight”

     Over the years I have added other booklets to educate and support specific parts of the dying process. ALWAYS OFFER, NEVER FORCE: Food at End of Life is the latest. I have a discounted bundle of booklets called The End of Life Guideline Seriesthat addresses diagnosis to grief.