Fear of dying is something most of us carry to some degree. We don't know what it will feel like, what will happen, or what to expect. After decades of working in end of life care and teaching about dying, I have learned that understanding how the body dies can make the unknown a little less frightening.
Everyone approaching a gradual death will experience fear. Some of us more than others, but all of us will be afraid to some degree as we adjust to the knowledge that death is coming sooner than we expected.
I think a big part of the fear of dying is fear of the unknown. What will it be like? What will it feel like? What happens to the me that I am? Should I be thinking about God, about religion? When will it happen? What do I do?
I can give you no definitive answers to those questions. I can say that we die according to our personality and how we have approached other challenges in our living. I can say we will sleep through the labor of dying. I can say that, unless we experience a fast death, we don't go from being aware one minute and dead the next, even though that is how the movies portray dying.
Here is what I've learned from watching many people die:
- Our body knows how to die. It is our conscious mind that does not know what to expect or how to let go.
- Gradual dying from disease begins three to four months before death arrives. This is when our mind is searching for answers, for direction. It is during these months that we worry, are scared, and have questions that have no answers. This is when fear is often the most prominent.
- Labor begins one to three weeks before death. We sleep more and even when awake, everything is like a dream. Our body may be moving and restless, but when labor begins our thinking, rational mind diminishes. Our instinct, our body, takes over and begins releasing its hold on living. Our perception of living is no longer about what is going on around us.
- In the minutes to hours before death arrives, our attention is inward. There are no special, consciously-said words just before we're gone. There is a "push," a bodily release, a few long, spaced out breaths, and our work is finished.
Knowing these things doesn't mean we won't be afraid. Dying is still an unknown for each of us. But knowing what the body does and understanding that dying is a process can take away some of the fear. Our bodies know how to die.
Something more... about managing our fear of dying
The End of Life Guideline Series explains what happens as death approaches, what to expect in the final days and hours, and how grief affects us afterward. These five booklets offer simple, practical information to help you understand the dying process and feel more prepared for what lies ahead.
7 comments
Norah. Jake Wesseh
THERE IS A SEASON FOR EVERYTHING
THERE IS A SEASON FOR EVERYTHING
Lori Martin
I have just returned home from 2.5 months of caring for my 91 & 96 year old parents. Mom has dementia and is in a decline but not actual end stage end of life. I’m a firm believer that hospice should be started as soon as one would qualify to receive the benefits of what hospice was originally designed for-to teach the family how to care for a dying family member and not wait for the last week of life like so many do because they fear the word hospice. I buy your booklets by the dozen per set to share with others that need your information. The hospice social worker was familiar with your little blue book but not the others in the series and I had a complete set at my parents home that I knew would be a good resource for when she progresses through her journey. I lent the social worker my complete set that I keep there, so that she could read the rest of your works. She promised to return them on her next visit. I have returned to my home 3,000 miles away knowing mom and my dad and siblings are now well supported by hospice and the private caregivers hired to help take care of mom while I come home to get refueled to go back again. Thank you for your dedication to making others aware of the natural process of dying, and you are so right in promoting Knowledge Reduces Fear.
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BK Books replied:
Hi Lori, it is so hard caring for someone, let alone two, when you are many miles away. Glad you are in the good hands of hospice. Blessings! Barbara
I have just returned home from 2.5 months of caring for my 91 & 96 year old parents. Mom has dementia and is in a decline but not actual end stage end of life. I’m a firm believer that hospice should be started as soon as one would qualify to receive the benefits of what hospice was originally designed for-to teach the family how to care for a dying family member and not wait for the last week of life like so many do because they fear the word hospice. I buy your booklets by the dozen per set to share with others that need your information. The hospice social worker was familiar with your little blue book but not the others in the series and I had a complete set at my parents home that I knew would be a good resource for when she progresses through her journey. I lent the social worker my complete set that I keep there, so that she could read the rest of your works. She promised to return them on her next visit. I have returned to my home 3,000 miles away knowing mom and my dad and siblings are now well supported by hospice and the private caregivers hired to help take care of mom while I come home to get refueled to go back again. Thank you for your dedication to making others aware of the natural process of dying, and you are so right in promoting Knowledge Reduces Fear.
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BK Books replied:
Hi Lori, it is so hard caring for someone, let alone two, when you are many miles away. Glad you are in the good hands of hospice. Blessings! Barbara
Carol Alix
I have read all your pamphlets and book (Final Act…) and have purchased it and all the pamphlets. I share with family and friends as often as possible. I find that most don’t want on all or learn. Really heartbreaking – - as your materials walked me through my mother’s and others last months/weeks/days and hours! My Mom was in a nursing home … I understood so much more and was able to notify family to visit one more time.
Thank you for your life’s work!
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BK Books replied:
Hi Carol, knowledge of what to expect, what is natural, what to do can help us with one of life’s biggest challenges. I am glad you are sharing my materials with others. Knowledge won’t take the sadness away but it can reduce some of the fear. Blessings to you in the work you are doing in passing this information on to others in need. Barbara
I have read all your pamphlets and book (Final Act…) and have purchased it and all the pamphlets. I share with family and friends as often as possible. I find that most don’t want on all or learn. Really heartbreaking – - as your materials walked me through my mother’s and others last months/weeks/days and hours! My Mom was in a nursing home … I understood so much more and was able to notify family to visit one more time.
Thank you for your life’s work!
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BK Books replied:
Hi Carol, knowledge of what to expect, what is natural, what to do can help us with one of life’s biggest challenges. I am glad you are sharing my materials with others. Knowledge won’t take the sadness away but it can reduce some of the fear. Blessings to you in the work you are doing in passing this information on to others in need. Barbara
Kelly Kilboy
My mom died a slow death due to lung cancer over 10 years ago now. Your books, especially the little blue book was shared with me by our hospice caretaker. That little book was a blessing! I’ve shared it with many others over the years, and I obviously continue to read your blog. I still cherish deeply the experience of walking with my mom on her last year up until her death. It was a really excellent journey for both of us. Thank you for sharing all your knowledge, all the time!
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BK Books replied:
Hi Kelly, Thank you for the positive words. I’m glad I have been able to be of guidance. Blessings! Barbara
My mom died a slow death due to lung cancer over 10 years ago now. Your books, especially the little blue book was shared with me by our hospice caretaker. That little book was a blessing! I’ve shared it with many others over the years, and I obviously continue to read your blog. I still cherish deeply the experience of walking with my mom on her last year up until her death. It was a really excellent journey for both of us. Thank you for sharing all your knowledge, all the time!
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BK Books replied:
Hi Kelly, Thank you for the positive words. I’m glad I have been able to be of guidance. Blessings! Barbara
Kari
Hi Barbara, thank you for this timely post. As a hospice RN I’ve read and shared “Gone From My Site”; however, I am now navigating the path with my father who is in final stages of respiratory onset ALS. His mind is sharp and he is strong in faith and states he isn’t afraid of death but the “waiting” and wondering how long it might take is what is troubling him. As his primary caregiver he is looking to me for answers that I don’t know. All I can promise is as much comfort available to provide.
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BK Books replied:
Hi Kari, ALS is a rough road to travel toward death. A time frame is difficult to determine but a guesstimate can be made based on medical interventions chosen and rejected. When the time comes to address a feeding tube it can be refused and death will come sooner. I consider oxygen a comfort measure but a respirator prolonging. As an RN you know all this but when it is family our thoughts go astray. My thoughts and blessings are with you and your father. Barbara
Hi Barbara, thank you for this timely post. As a hospice RN I’ve read and shared “Gone From My Site”; however, I am now navigating the path with my father who is in final stages of respiratory onset ALS. His mind is sharp and he is strong in faith and states he isn’t afraid of death but the “waiting” and wondering how long it might take is what is troubling him. As his primary caregiver he is looking to me for answers that I don’t know. All I can promise is as much comfort available to provide.
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BK Books replied:
Hi Kari, ALS is a rough road to travel toward death. A time frame is difficult to determine but a guesstimate can be made based on medical interventions chosen and rejected. When the time comes to address a feeding tube it can be refused and death will come sooner. I consider oxygen a comfort measure but a respirator prolonging. As an RN you know all this but when it is family our thoughts go astray. My thoughts and blessings are with you and your father. Barbara
Kelly Sturgeon
Thank you for posting this. I share your blog with my families and will definitely share this one. We have an 86 yr old resident of 8 years living with Alzheimer’s in my care home who is now receiving hospice services, and looking back on the past three months he was truly showing us that he was beginning the process of dying. A recent hospitalization was necessary but even then I was not successful with communicating well enough with the family, doctor and nurses to come together and see he needed hospice care. It took many hours of phone calls, advocacy and coordination on a three day weekend to finally get him on these much needed services 5 days post hospital stay. I believe that your work can help us as a culture to not fear death and perhaps be in a different and more grounded place for these difficult decisions. And to be more open to seeing what the person is truly showing us.
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BK Books replied:
Hi Kelly, You’ve done such good support for this gentleman and his family in spite of the challenges of working with the"system". Blessings to you! Barbara.
Thank you for posting this. I share your blog with my families and will definitely share this one. We have an 86 yr old resident of 8 years living with Alzheimer’s in my care home who is now receiving hospice services, and looking back on the past three months he was truly showing us that he was beginning the process of dying. A recent hospitalization was necessary but even then I was not successful with communicating well enough with the family, doctor and nurses to come together and see he needed hospice care. It took many hours of phone calls, advocacy and coordination on a three day weekend to finally get him on these much needed services 5 days post hospital stay. I believe that your work can help us as a culture to not fear death and perhaps be in a different and more grounded place for these difficult decisions. And to be more open to seeing what the person is truly showing us.
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BK Books replied:
Hi Kelly, You’ve done such good support for this gentleman and his family in spite of the challenges of working with the"system". Blessings to you! Barbara.
MaryEtta Palmer
I read Ms. Karen’s’ little blue book as a happenstance and realized my void of information and dialogue on the subjects she covered. How wonderful to gain knowledge of my and everyone’s future event.
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BK Books replied:
Hi MaryEtta, I have a saying “Knowledge reduces fear”.The more we know about something the less there is to fear. Blessings! Barbara
I read Ms. Karen’s’ little blue book as a happenstance and realized my void of information and dialogue on the subjects she covered. How wonderful to gain knowledge of my and everyone’s future event.
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BK Books replied:
Hi MaryEtta, I have a saying “Knowledge reduces fear”.The more we know about something the less there is to fear. Blessings! Barbara