I get a lot of letters like the one I’ve edited below. We, as a culture, are so unprepared for witnessing a death. We have no accurate role models. We don’t talk about it and for the most part we pretend it isn’t going to happen to us or anyone close to us.
When dying and death does come (and it will to us and to those we care about) we are unprepared and basically all the Halloween, Friday the Thirteenth type of scary movies we’ve watched kick in. We miss the sacredness of the moment and only experience the fear and perceived horror.
Dear Barbara: My mother’s death was the most haunting thing I have ever experienced and no one has been able to explain it to me. I am hoping you may be able to provide some insight, and some possible comfort to me, regarding my experience. I had expected that my mother would pass peacefully, her breathing would slow and she would float away. Instead, my mother bolted up (she hadn’t sat up in days). My brother stood by her side and she looked him straight in the eyes (she hadn’t made eye contact with anyone in days either). She had a look of intense fear – like nothing I had seen before. She told him she was afraid. My brother did everything he could to try to calm her down, to coach her towards her death, but it didn’t help. It felt like this went on forever. She died in that state – panicked and horrified – saying over and over how scared she was. There was no peace. No calm. No one can give me an explanation that will provide me any comfort that my mother did not suffer greatly when she died.
I know when something like what your mom did just before she died happens it scares us and leaves so many thoughts, concerns and questions. Here is what I have experienced and think I know: I know for sure people don't die like they do in the movies yet movies are our role models and when people don't die like in the movies (say a few gentle, meaningful words, then close our eyes) we think something pathological has happened.
I've seen many people do similar things as your mother when they were dying; silent screams, grimaces, sit straight up in bed, look around, talk (but not really make sense), have conversations with people I can't see or hear, fight, cry.
What do I think this means? I think the person is in a dream state and we don't know what they are dreaming but their actions are a reflection of their dream. Add fear to that dream state. We are all going to be afraid, to some degree, when we are dying and fear can manifest itself in the dream world as the equivalent of nightmares.
I think your mother was talking in her dream state and reflecting her anxiety and fear of this new life experience. All you and your brother could do was what you did; support her, try to calm her, and love her. Hospice could medicate her with anti-anxiety or relaxants but that close to death they would probably not have been effective.
You might think about writing your mother a letter. Put everything you've ever wanted to say to her on paper. Write about how scared you were and how much you wanted to help her, how much you miss her and how you are living your life now. When all the words and tears are on paper, burn it and scatter the ashes to the wind. From this point forward let how well you live your life, your happiness, your balance, be your gift to your mom.
Something More... about Dying Scared
Because families desperately need education about the dying process, I made a 25 minute video called NEW RULES for End of Life Care. The film covers the topics that caregivers need to know like food, hydration, narcotics and pain management, grief, and what to do to help a loved one have a more sacred death. This film is used by hospices across the country to support and educate families with a dying loved one.
10 comments
Anne-Sophie Bernstorff
My first experience with death was when I was young sitting with a very lonely man who was screaming Help me, Help me and then he died. It did not seem like a dream, but a call for help and I had no idea how to comfort him. It was a scary experience.
My first experience with death was when I was young sitting with a very lonely man who was screaming Help me, Help me and then he died. It did not seem like a dream, but a call for help and I had no idea how to comfort him. It was a scary experience.
Mary Pedersen
My dear husband was experiencing end stage dementia at a skilled nursing facility and was always asking to come home. In his final hours I was able to be at his side and told him he was home…he passed peacefully while I held his hand.
My dear husband was experiencing end stage dementia at a skilled nursing facility and was always asking to come home. In his final hours I was able to be at his side and told him he was home…he passed peacefully while I held his hand.
Bill W. II - Palliative Care / Hospice Chaplain
Dear Barbara,
I am so grateful for these resources you have created. I have been in Palliative Care & Hospice Chaplain for almost four years, and the word Hospice is difficult enough to say. I have had the opportunity to come along side a great deal of patients, and the ones who have a “good death” are typically the ones I am able to have a conversation with to help explain what hospice is. Unfortunately the hospice in which I work for will not purchase your material but because I know how well they work, I will continue to buy them out of my pocket.
Dear Barbara,
I am so grateful for these resources you have created. I have been in Palliative Care & Hospice Chaplain for almost four years, and the word Hospice is difficult enough to say. I have had the opportunity to come along side a great deal of patients, and the ones who have a “good death” are typically the ones I am able to have a conversation with to help explain what hospice is. Unfortunately the hospice in which I work for will not purchase your material but because I know how well they work, I will continue to buy them out of my pocket.
John
I was in hospital room with my dad when my mother passed away. She died while still in a coma,and was a peaceful transition. Days before when my dad visited her,he told me that she whispered in his ear “when,when?” I think the person knows they are leaving this world,but there is uncertainty in their minds sometimes. Know a lot of people shy away when Jesus and eternal life is explained,but as a christian myself,I know how important the destination of their soul is. My dad is in hospice here in our home,and he struggles with progressing dementia,as well as health issues. He knows Christ as his savior,but still needs my moral support as well as all his physical needs. Is very tough for me,but the hospice nurses and staff are very caring and supportive. I always tell them that to me,they are God’s angels with invisible wings. They will forever be in my heart and thoughts.
I was in hospital room with my dad when my mother passed away. She died while still in a coma,and was a peaceful transition. Days before when my dad visited her,he told me that she whispered in his ear “when,when?” I think the person knows they are leaving this world,but there is uncertainty in their minds sometimes. Know a lot of people shy away when Jesus and eternal life is explained,but as a christian myself,I know how important the destination of their soul is. My dad is in hospice here in our home,and he struggles with progressing dementia,as well as health issues. He knows Christ as his savior,but still needs my moral support as well as all his physical needs. Is very tough for me,but the hospice nurses and staff are very caring and supportive. I always tell them that to me,they are God’s angels with invisible wings. They will forever be in my heart and thoughts.
barbara
Hi Karen, thank you for your comments. I really appreciate your comment “ or whatever faith they practice”. We, in nursing, walk on thin ice when we bring our personal spiritual belief into our support and teachings. If I think there are spiritual issues creating fear I will offer a Hospice chaplain. I also agree the dying bring their spiritual or lack of spiritual beliefs to the dying bed with them AND that can certainly affect the level of fear being experienced.
Blessings to you. Barbara
Hi Karen, thank you for your comments. I really appreciate your comment “ or whatever faith they practice”. We, in nursing, walk on thin ice when we bring our personal spiritual belief into our support and teachings. If I think there are spiritual issues creating fear I will offer a Hospice chaplain. I also agree the dying bring their spiritual or lack of spiritual beliefs to the dying bed with them AND that can certainly affect the level of fear being experienced.
Blessings to you. Barbara
karen a martin
Barbara: I know this is not across the board but I feel many times when someone has that great fear during the dying process is not ready spiritually. I have been a Hospice nurse for over 25 years and have witnessed many people dying. I can medicate with high doses of whatever I feel is necessary and they will rise above it almost every time. When I scope out the details, pray with them, offer their need for Jesus or whatever faith they practice, so often they become calm and peaceful and even reach out with a smile.
Barbara: I know this is not across the board but I feel many times when someone has that great fear during the dying process is not ready spiritually. I have been a Hospice nurse for over 25 years and have witnessed many people dying. I can medicate with high doses of whatever I feel is necessary and they will rise above it almost every time. When I scope out the details, pray with them, offer their need for Jesus or whatever faith they practice, so often they become calm and peaceful and even reach out with a smile.
Joan M. Angen
I read the answer you tried to give this woman talking about her scary
experience with her Mother’s death and I’m so happy I was not with my Mother at the end. What she witnessed was the very worst thing in my
estimation. I will try to read some of your online books. Thank you for sharing this with me.
I read the answer you tried to give this woman talking about her scary
experience with her Mother’s death and I’m so happy I was not with my Mother at the end. What she witnessed was the very worst thing in my
estimation. I will try to read some of your online books. Thank you for sharing this with me.
Judy,MSN, Chaplain
Thank you dear Barbara, for all you do, all you write…. and all you advise…… you are a Blessing to so many ❤️ Judy
Thank you dear Barbara, for all you do, all you write…. and all you advise…… you are a Blessing to so many ❤️ Judy
Martha Cruz, RN
Thank you for posting this article. I have never experienced this kind of behavior during my hospice career and I had not seen any related articles, and I find this helpful information.
Thank you for posting this article. I have never experienced this kind of behavior during my hospice career and I had not seen any related articles, and I find this helpful information.
Walter Satchell
Barbara, I am an Assoc. Pastor/Pastoral Care and your pamphlets have been the best material to help my church family go through the grief process and dealing with dying family members. Thank you and please continue your God given talents in helping others through death and dying. Walter
Barbara, I am an Assoc. Pastor/Pastoral Care and your pamphlets have been the best material to help my church family go through the grief process and dealing with dying family members. Thank you and please continue your God given talents in helping others through death and dying. Walter