Why do we, the watchers, get so caught up in remembering the labor of dying? Because we don’t know how people die. We just have the movies and TV that show us a clean, smooth, gentle, "say something profound and close your eyes" kind of dying.
Well, it doesn’t happen that way. Oh, yes, once in a great while someone will serenely close their eyes and not wake up, BUT most of the time dying is messy. Dying is irrational, uncoordinated movements, strange sounds, unpleasant smells, and changes to skin color. Because of all of these "unusual" activities and changes, we, the watchers, get stuck remembering the sad, scary way our special person died.
In our grief, the memory of how our person died often overshadows the recalling of a life well-lived. It is the memory of those final days and hours, mingled with our fear and our sense of loss, that interferes with us moving forward in our grief. We get “stuck” — like the rewinding of a film. Over and over and over we replay the dying.
How do we stop the replay? I’m not sure. We are all such unique personalities and our relationships are all so complicated that no one response fits all.
Counseling and grief support groups help. Knowledge of how dying happens and what it really looks like relieves some of the thoughts that what happened was abnormal or wrong or that inappropriate care during hospice killed mom.
Write your thoughts on paper. A love letter, so to speak. Write your feelings, concerns, sense of loss, tears, or whatever else you would say to your special person if you could. Put them on paper — don't record them, don't type them on your phone; write them on real paper. Burn the letter and scatter the ashes in the air. Release the heavy emotional weight you are carrying.
It isn’t how many tears we cry, how angry we are, or how we reach for answers that shows our love.
Let how well we live our life going forward be the gift of love and remembrance.
PS: If you feel there has been inappropriate care given contact medicare.gov and file a complaint. That will be your gift to others.
Something More about... Why the Memory of Dying Stays With Us
Want to better understand what really happens at the end of life? Read Barbara's classic booklet, Gone From My Sight: The Dying Experience— the hospice “blue book” that has helped millions of families and caregivers find comfort and clarity through education. The "blue book" is part of Barbara's End of Life Guideline Series Bundle.
6 comments
Bev
Once again, Barbara, you ‘talk’ about a subject that people may only think about in their solitude. It’s incredible that you even write about subjects like this that are so profound yet simple. I’ve often thought about the subject of dying and strangely, it fascinates me. Not enough to study it further, but I will continue reading your booklets, etc. even a little over a year of my beloved husband’s death. Thank you Barbara for bringing forth subjects that we only think about in the deep crevices of our minds. And you make sense of them, with clarity and respect. Incredible.
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BK Books replied:
Hi Bev, thank you for the positive words. My hope is for people to see the normalness (if there is a word. I may have just created a new one) of dying. Knowledge reduces fear and can bring comfort Blessings! Barbara
Once again, Barbara, you ‘talk’ about a subject that people may only think about in their solitude. It’s incredible that you even write about subjects like this that are so profound yet simple. I’ve often thought about the subject of dying and strangely, it fascinates me. Not enough to study it further, but I will continue reading your booklets, etc. even a little over a year of my beloved husband’s death. Thank you Barbara for bringing forth subjects that we only think about in the deep crevices of our minds. And you make sense of them, with clarity and respect. Incredible.
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BK Books replied:
Hi Bev, thank you for the positive words. My hope is for people to see the normalness (if there is a word. I may have just created a new one) of dying. Knowledge reduces fear and can bring comfort Blessings! Barbara
Grace
Hello. It’s been a long time since I’ve tried to put in writing another Thank you! note. I know y’all hear thank yous over and over but it’s our way of showing how grateful we are for your help and knowledge as we process our loved one’s dying. Before. During. Most importantly… After. As we approach our Mom’s 1 Year Anniversary in December, . Today I read a summary that’s a keeper moving forward. “Let how well we live our life going forward be the gift of love and remembrance.”
Thank you. God bless each and everyone one of you and your families that work in Hospice ♥️♥️♥️
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BK Books replied:
Thank you Grace for your kind words about hospice workers. They are truly a gift to all. Blessings! Barbara
Hello. It’s been a long time since I’ve tried to put in writing another Thank you! note. I know y’all hear thank yous over and over but it’s our way of showing how grateful we are for your help and knowledge as we process our loved one’s dying. Before. During. Most importantly… After. As we approach our Mom’s 1 Year Anniversary in December, . Today I read a summary that’s a keeper moving forward. “Let how well we live our life going forward be the gift of love and remembrance.”
Thank you. God bless each and everyone one of you and your families that work in Hospice ♥️♥️♥️
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BK Books replied:
Thank you Grace for your kind words about hospice workers. They are truly a gift to all. Blessings! Barbara
Cathy Webb Lester
What’s rarely touched on is the grief that happens while our person still lives. The agony of the knowledge that the profound loss will come sooner than later is something that we try not to dwell on while we work to make our person as comfortable and safe as possible, showing all the love we want them to take with them, even while we wait for the moment our own lives will come to a screeching standstill. This is so stinking hard!!
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BK Books replied:
Oh Cathy, you are so right. We begin grieving from the moment of diagnosis. Blessings to you! Barbara
What’s rarely touched on is the grief that happens while our person still lives. The agony of the knowledge that the profound loss will come sooner than later is something that we try not to dwell on while we work to make our person as comfortable and safe as possible, showing all the love we want them to take with them, even while we wait for the moment our own lives will come to a screeching standstill. This is so stinking hard!!
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BK Books replied:
Oh Cathy, you are so right. We begin grieving from the moment of diagnosis. Blessings to you! Barbara
Linda
Dear Barbara, Yes, we hospice nurses get more acclimated to the various ways people exit this world.
As a surviver of a husband who shot himself, and having found him, I knew I’d need help. Thank goodness there was a suicide survivor’s support group in Kansas City back in 1983. One person suggested carrying around a good picture of the deceased. Every time the yucky scene came back into my head, I’d pull that good photo out to help stop the “movie” in my head. I must have carried that photo for 5 years. That support group is the only place I’ve heard of that idea.
I suggested this idea to my hospice families, especially since not all physical aspects are pleasant, nor the dying person’s appearance due to age or illness something they’d want to recall. Several thanked me, as they weren’t initially familiar with the dying process.
Thank you for all you continue to do. Even retired, I’m still explaining and sending forth your wonderful booklets. Very much appreciate your resources and knowledge. Linda Bricker, R.N.
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BK Books replied:
Hi Linda, thank you for sharing the idea of carrying a picture. I like it too. PS: I was working in Hospice in 1983 in Kansas City. I wonder if our paths ever crossed. Blessings to you in the special work you did and are still doing. Barbara
Dear Barbara, Yes, we hospice nurses get more acclimated to the various ways people exit this world.
As a surviver of a husband who shot himself, and having found him, I knew I’d need help. Thank goodness there was a suicide survivor’s support group in Kansas City back in 1983. One person suggested carrying around a good picture of the deceased. Every time the yucky scene came back into my head, I’d pull that good photo out to help stop the “movie” in my head. I must have carried that photo for 5 years. That support group is the only place I’ve heard of that idea.
I suggested this idea to my hospice families, especially since not all physical aspects are pleasant, nor the dying person’s appearance due to age or illness something they’d want to recall. Several thanked me, as they weren’t initially familiar with the dying process.
Thank you for all you continue to do. Even retired, I’m still explaining and sending forth your wonderful booklets. Very much appreciate your resources and knowledge. Linda Bricker, R.N.
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BK Books replied:
Hi Linda, thank you for sharing the idea of carrying a picture. I like it too. PS: I was working in Hospice in 1983 in Kansas City. I wonder if our paths ever crossed. Blessings to you in the special work you did and are still doing. Barbara
Debbie Walter
Barbara, thank you for this post. This is exactly how I am feeling. My husband passed away 18 months and it is those last hours that haunt me, and I wasn’t even in the room with him. Our daughter was. Your blue book and your words of experience, wisdom and guidance have helped so much but I’m just struggling with the end. Thank you for sharing your self with so many others.
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BK Books replied:
Hi Debbie, it is hard to erase “pictures” from our mind. I just had a woman griever write to me today and tell me she is having similar thoughts. She now carries a beautiful picture of her person when they were healthy and well. She said the picture brings her back to the beauty of the life lived. You also might get my booklet on grieving, My Friend, I Care. Blessings to you. Barbara
Barbara, thank you for this post. This is exactly how I am feeling. My husband passed away 18 months and it is those last hours that haunt me, and I wasn’t even in the room with him. Our daughter was. Your blue book and your words of experience, wisdom and guidance have helped so much but I’m just struggling with the end. Thank you for sharing your self with so many others.
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BK Books replied:
Hi Debbie, it is hard to erase “pictures” from our mind. I just had a woman griever write to me today and tell me she is having similar thoughts. She now carries a beautiful picture of her person when they were healthy and well. She said the picture brings her back to the beauty of the life lived. You also might get my booklet on grieving, My Friend, I Care. Blessings to you. Barbara
Judy
Barbara,
Thank you so much for this post. This is exactly where I am right now. It’s been 2 months since my mom died in hospice. We had beautiful, precise care from our nurses but I’m in PTSD from the experience. Even though I was very familiar with your books- I was “traumatized “ by the experience. I’m holding on to my faith and my mother’s wishes that I move forward but it’s been hard. That you for acknowledging the hard.
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BK Books replied:
Oh Judy, I’m sorry for your loss. Two months and your grief wound is still open and gaping, ever so painful. In time the wound will heal over and the scar of loss will form. Make sure you go to the hospice grief support group. There can be comfort in their guidance. Blessings to you. Barbara
Barbara,
Thank you so much for this post. This is exactly where I am right now. It’s been 2 months since my mom died in hospice. We had beautiful, precise care from our nurses but I’m in PTSD from the experience. Even though I was very familiar with your books- I was “traumatized “ by the experience. I’m holding on to my faith and my mother’s wishes that I move forward but it’s been hard. That you for acknowledging the hard.
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BK Books replied:
Oh Judy, I’m sorry for your loss. Two months and your grief wound is still open and gaping, ever so painful. In time the wound will heal over and the scar of loss will form. Make sure you go to the hospice grief support group. There can be comfort in their guidance. Blessings to you. Barbara