One night many years ago when I was a hospice RN, when most people couldn’t pronounce the word “hospice,” or understand what the services were about, I was sitting with a family. Mom was in the bedroom, probably a week or so from death. The family and I were in the living room. I was explaining why mom was doing the things she was doing. Why she was making “strange” sounds, why she was restless and agitated, why she wasn’t responding to them.
One of the daughters was taking notes. I was surprised. No one had done that before. What a great idea! To have these words of reassurance when I wasn’t there to guide and support them.
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 Series that addresses diagnosis to grief.
Review:
⭐️⭐️⭐️⭐️⭐️ FANTASTICALLY USEFUL
This is just the best and most useful resource which I have bought again and again to be able to hand them out. They are written in such a readable and succinct way that is perfect for people to take in quickly and easily at a time when they just need the information presented to them very simply.
Minna B.
United Kingdom
8 comments
Margie
Your “Gone From My Sight” booklet was tucked inside the pocket of the hospice admission folder for my mother in law. My husband and two sisters in law would never have seen it if I hadn’t found it and brought it to their attention! ( I had immediately recognized it as your work!)
It became very helpful as we noticed the signs of upcoming death and was actually comforting to her children.
Thank you for ALL of your caring support, Barbara.
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BK Books replied:
Margie, My ideal is that the hospice nurse literally reads the booklet with families and caregiver. I hear way to often that it is found among all the paperwork after the death. I’m glad you found it. Blessings to you and your family. Barbara
Your “Gone From My Sight” booklet was tucked inside the pocket of the hospice admission folder for my mother in law. My husband and two sisters in law would never have seen it if I hadn’t found it and brought it to their attention! ( I had immediately recognized it as your work!)
It became very helpful as we noticed the signs of upcoming death and was actually comforting to her children.
Thank you for ALL of your caring support, Barbara.
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BK Books replied:
Margie, My ideal is that the hospice nurse literally reads the booklet with families and caregiver. I hear way to often that it is found among all the paperwork after the death. I’m glad you found it. Blessings to you and your family. Barbara
Margie
Your “Gone From My Sight” booklet was tucked inside the pocket of the hospice admission folder for my mother in law. My husband and two sisters in law would never have seen it if I hadn’t found it and brought it to their attention! ( I had immediately recognized it as your work!)
It became very helpful as we noticed the signs of upcoming death and was actually comforting to her children.
Thank you for ALL of your caring support, Barbara.
Your “Gone From My Sight” booklet was tucked inside the pocket of the hospice admission folder for my mother in law. My husband and two sisters in law would never have seen it if I hadn’t found it and brought it to their attention! ( I had immediately recognized it as your work!)
It became very helpful as we noticed the signs of upcoming death and was actually comforting to her children.
Thank you for ALL of your caring support, Barbara.
Ann johnson
Barbara your booklets are the Bible for Hospice caregivers!! I’ve had families carry it around with them and identify their loved one’s symptoms and feel more in control of the situation vs being anxious of the unknown. Your beautiful gift of writing softly, honestly yet gentle to the soul resonates all over the world where your booklets are read!! Your legacy is wonderful for the Hospice industry and we all thank you for doing this and continuing with the booklets on grief.
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BK Books replied:
Thank you Ann for your very kind words. What you have described is my intent in writing. Blessings to you in the work you are doing. Barbara
Barbara your booklets are the Bible for Hospice caregivers!! I’ve had families carry it around with them and identify their loved one’s symptoms and feel more in control of the situation vs being anxious of the unknown. Your beautiful gift of writing softly, honestly yet gentle to the soul resonates all over the world where your booklets are read!! Your legacy is wonderful for the Hospice industry and we all thank you for doing this and continuing with the booklets on grief.
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BK Books replied:
Thank you Ann for your very kind words. What you have described is my intent in writing. Blessings to you in the work you are doing. Barbara
Barbara Sanders
As a hospice nurse I’ve used Gone From My Sight with hundreds of families over the years. The inevitable question families ask is “how much longer?”… I open the book and let them read the pages of what to expect on an end of life timeline. That way the family can see where their loved one is in the process and take ownership rather than the nurse – or doctor- giving a date that often ends up being incorrect. Too many times the family has heard the doctor say " 6 months" and when they meet the hospice nurse the timeline is closer to 6 days or 6 weeks. This book helps the family be more realistic in what they are facing. Education and confidence for the family is what they get in Gone From My Sight.
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BK Books replied:
Hi Barbara, I know, people don’t have any role models on what dying looks like, add that doctors tend to give people more time than they have and we have a great need for education. I wrote my booklets to fill that gap. Blessings to you in the work you are doing. Barbara
As a hospice nurse I’ve used Gone From My Sight with hundreds of families over the years. The inevitable question families ask is “how much longer?”… I open the book and let them read the pages of what to expect on an end of life timeline. That way the family can see where their loved one is in the process and take ownership rather than the nurse – or doctor- giving a date that often ends up being incorrect. Too many times the family has heard the doctor say " 6 months" and when they meet the hospice nurse the timeline is closer to 6 days or 6 weeks. This book helps the family be more realistic in what they are facing. Education and confidence for the family is what they get in Gone From My Sight.
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BK Books replied:
Hi Barbara, I know, people don’t have any role models on what dying looks like, add that doctors tend to give people more time than they have and we have a great need for education. I wrote my booklets to fill that gap. Blessings to you in the work you are doing. Barbara
ALICE ALLEN
Barbara, thank you so much for writing that book as well as all the others you have written. They have been so helpful when caring for my family.
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BK Books replied:
Thank you Alice. Blessings! Barbara
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BK Books replied:
Hi Alice, I am pleased my booklets were helpful to you during a challenging time. Blessings! Barbara
Barbara, thank you so much for writing that book as well as all the others you have written. They have been so helpful when caring for my family.
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BK Books replied:
Thank you Alice. Blessings! Barbara
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BK Books replied:
Hi Alice, I am pleased my booklets were helpful to you during a challenging time. Blessings! Barbara
Susan Wallace Moriarty
These booklets are wonderful. As a Hospice Chaplain for 15 years I used Gone From My Sight, In The Eleventh Hour, and My friend I Care with my patients and families, all the time. The families found them so helpful and less scared. In the Eleventh Hour gives them tangible things they can do for their loved ones at a time when they feel so helpless. Thank you Barbara, for being such a compassionate Educator for families.
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BK Books replied:
Thank you, Susan. Blessings to you in the special work you are doing. Barbara
These booklets are wonderful. As a Hospice Chaplain for 15 years I used Gone From My Sight, In The Eleventh Hour, and My friend I Care with my patients and families, all the time. The families found them so helpful and less scared. In the Eleventh Hour gives them tangible things they can do for their loved ones at a time when they feel so helpless. Thank you Barbara, for being such a compassionate Educator for families.
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BK Books replied:
Thank you, Susan. Blessings to you in the special work you are doing. Barbara
Michelle zrakas
Thank you I work as a ’hospice" cna
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BK Books replied:
Hi Michelle, You are doing such important work. You have the opportunity to become closer to a patient and their family than anyone on the hospice team. Blessings ! Barbara
Thank you I work as a ’hospice" cna
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BK Books replied:
Hi Michelle, You are doing such important work. You have the opportunity to become closer to a patient and their family than anyone on the hospice team. Blessings ! Barbara
Dawn Young
These are wonderful books Barbara. I think every death doula should be familiar with these books and offer them to patient’s family and caregivers if they have not received them from another source. I even give them to friends who have family members at end of life. They always are appreciative. Thanks for all you’ve done to make dying easier to process.
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BK Books replied:
Thank you Dawn for your kind words about my booklets. Blessings! Barbara
These are wonderful books Barbara. I think every death doula should be familiar with these books and offer them to patient’s family and caregivers if they have not received them from another source. I even give them to friends who have family members at end of life. They always are appreciative. Thanks for all you’ve done to make dying easier to process.
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BK Books replied:
Thank you Dawn for your kind words about my booklets. Blessings! Barbara