From the emails I receive, it seems that the three most concerning, upsetting aspects of dying for the watchers are agitation, hallucinations, and the gurgling from excess moisture in the throat and/or back of the mouth.
These three areas are very much a part of the dying process. Many dying people have them, it’s just that most people don’t know they are normal.
Dying is generally not a pretty sight. When we don’t see it as it unfolds in the movies - neat, tidy, and calm - we think something is wrong.
We used to know what dying looked like. Grandma lived with us. When she got sick and couldn’t be fixed, she was in our upstairs bedroom. We all gathered around her while she died. We saw death as a natural part of life. We saw what dying looks like because we were with her.
Later in our history, hospitals became the place most of us died. Unfortunately, Grandma was often at the end of the hospital hall and alone with no family. We weren’t with her. We didn’t learn what dying looks like.
The next step in how we Americans cared for our dying through nursing homes. Again, Grandma died alone at the end of the hall. Again, we weren’t there.
A benefit that would have come if we had been with her, aside from the comfort our presence would have brought to her, is that we would have learned what dying looks like. We would have seen and heard the mucus gathering in the back of her throat. We would have heard her breathing sounds, gurgling sounds. We would have seen the pee and poop she couldn’t control. We would have been aware of the restlessness, the random hand, leg, and body movements.
I think we are beginning to come full circle. Grandmas are often home now when they die. There’s support and guidance for caretakers to provide that care at home. We are seeing how death happens, what it looks like, and learning what to do while dying is occurring.
With the support of hospice workers and end of life doulas, Grandma is coming back home and families are having a sacred end of life experience.
Something more...
If you’re caring for someone who is dying and what you’re seeing feels unsettling, I encourage you to watch New Rules for End of Life Care. It offers clear guidance for families and caregivers navigating the realities of dying.
6 comments
Maggie
I lost my dad to colon cancer when I was 18; he had been diagnosed shortly after I turned 13 and spent my teenage years doing treatments, with a few years where he was in remission. He was actually about to start hospice care the day he passed away; he had told my mother that he didn’t want me and my brother (15 at the time) to see him transitioning, and had even fought against getting a hospital bed into our house, opting for a recliner in the den instead. The hospice volunteer met with us in a hospital waiting room after he passed, and tried to help us find closure, but everything happened so fast that I can’t remember what was said. I just wish that I’d had more of that transition time with him, so as to get in a proper goodbye.
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BK Books replied:
Maggie, even after all these years write your father a letter. Put everything from your heart that you need to say to him on paper. Burn the letter and scatter the ashes to the wind. Let how well you live your life be the gift you give him. Blessings! Barbara
I lost my dad to colon cancer when I was 18; he had been diagnosed shortly after I turned 13 and spent my teenage years doing treatments, with a few years where he was in remission. He was actually about to start hospice care the day he passed away; he had told my mother that he didn’t want me and my brother (15 at the time) to see him transitioning, and had even fought against getting a hospital bed into our house, opting for a recliner in the den instead. The hospice volunteer met with us in a hospital waiting room after he passed, and tried to help us find closure, but everything happened so fast that I can’t remember what was said. I just wish that I’d had more of that transition time with him, so as to get in a proper goodbye.
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BK Books replied:
Maggie, even after all these years write your father a letter. Put everything from your heart that you need to say to him on paper. Burn the letter and scatter the ashes to the wind. Let how well you live your life be the gift you give him. Blessings! Barbara
Mitzi Meador
I’ve commented to you before about our son Matthew who passed almost 9 years ago. I can’t believe 9 is coming up June 18. Although we were about to be directed to hospice it wasn’t soon enough and he passed before our appointment. Oh and I wish we’d had it. Even so, Barbara getting your articles for several years now have helped me so much. I especially love this one. Oh it’s so said for people to be in nursing home and hospitals alone when they pass on! It’s wonderful it’s circled back and you are a tremendous part of it. You surely have helped me even we didn’t have hospice in time. Thank you for all you’ve done and continue to do to help people with the dying process and loss.
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BK Books replied:
Hi Mitzi, Good to hear from you. Thank you for sharing. Blessings! Barbara
I’ve commented to you before about our son Matthew who passed almost 9 years ago. I can’t believe 9 is coming up June 18. Although we were about to be directed to hospice it wasn’t soon enough and he passed before our appointment. Oh and I wish we’d had it. Even so, Barbara getting your articles for several years now have helped me so much. I especially love this one. Oh it’s so said for people to be in nursing home and hospitals alone when they pass on! It’s wonderful it’s circled back and you are a tremendous part of it. You surely have helped me even we didn’t have hospice in time. Thank you for all you’ve done and continue to do to help people with the dying process and loss.
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BK Books replied:
Hi Mitzi, Good to hear from you. Thank you for sharing. Blessings! Barbara
Mari Anne
When my mother was in hospital, she was moved to the hospice wing. There was a group of lady from an organization called “ no one dies alone”. Her name was Susan and she was with me near midnight when my mother passed. All my other family had left a few hours before. I’ll never forget this woman. I had never been with a dying person before. Thanks to Susan, she kept me informed of what was Susa and why. We prayed with my mother, we gave her a light washcloth bath, and I held her hand continuously. It was an experience I’ll never forget and someday I want to do that same volunteer job as Susan.
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BK Books replied:
Hi Mari Anne, thank you so much for sharing your experience with Susan from No One Dies Alone program. This is what hospice is suppose to look like. This is the most important time of our work. Thanks for sharing so hospices will see this and begin doing the same. Blessing Barbara
When my mother was in hospital, she was moved to the hospice wing. There was a group of lady from an organization called “ no one dies alone”. Her name was Susan and she was with me near midnight when my mother passed. All my other family had left a few hours before. I’ll never forget this woman. I had never been with a dying person before. Thanks to Susan, she kept me informed of what was Susa and why. We prayed with my mother, we gave her a light washcloth bath, and I held her hand continuously. It was an experience I’ll never forget and someday I want to do that same volunteer job as Susan.
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BK Books replied:
Hi Mari Anne, thank you so much for sharing your experience with Susan from No One Dies Alone program. This is what hospice is suppose to look like. This is the most important time of our work. Thanks for sharing so hospices will see this and begin doing the same. Blessing Barbara
Danielle
I just wanted to thank you, Barbara, so much for your work and these blogs. As a new hospice volunteer I appreciate all of it. I have newly purchased your books and booklets and read all of your entries here. It is an honor to be doing this work and I so value learning from your vast experiences. Much appreciation to you!
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BK Books replied:
Hi Danielle, welcome to the world of Hospice volunteering. It is blessed and special work. Blessings! Barbara
I just wanted to thank you, Barbara, so much for your work and these blogs. As a new hospice volunteer I appreciate all of it. I have newly purchased your books and booklets and read all of your entries here. It is an honor to be doing this work and I so value learning from your vast experiences. Much appreciation to you!
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BK Books replied:
Hi Danielle, welcome to the world of Hospice volunteering. It is blessed and special work. Blessings! Barbara
Melissa
How so true! We left Grandma alone because families entered the age of having the choice of looking the other way rather than being there until the end! There should have never been a choice in the matter. We are a more empathetic and caring society when we “feel” rather than avoid pain. I carry guilt for not being there when my grandma passed and won’t do it again.
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BK Books replied:
Hi Melissa, my guess is your grandmother wouldn’t want you carrying the guilt. You did the best you could with the knowledge you had at the time. Let how well you live your life now be the gift you give her. Blessings! Barbara
How so true! We left Grandma alone because families entered the age of having the choice of looking the other way rather than being there until the end! There should have never been a choice in the matter. We are a more empathetic and caring society when we “feel” rather than avoid pain. I carry guilt for not being there when my grandma passed and won’t do it again.
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BK Books replied:
Hi Melissa, my guess is your grandmother wouldn’t want you carrying the guilt. You did the best you could with the knowledge you had at the time. Let how well you live your life now be the gift you give her. Blessings! Barbara
allison
your help is invaluable to us. We have now lived through so many deaths and your information gives us so much guidance and reassurance.
You help me talk to the hospice nurse.
thanks – Allison & Brendan schallert (we knew Joey when she lived in LA)
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BK Books replied:
Hi Allison, Joie was with me last night. I am so blessed she lives close. I’ll tell her you wrote. Thank you for your kind words about my work. Blessings! Barbara
your help is invaluable to us. We have now lived through so many deaths and your information gives us so much guidance and reassurance.
You help me talk to the hospice nurse.
thanks – Allison & Brendan schallert (we knew Joey when she lived in LA)
———
BK Books replied:
Hi Allison, Joie was with me last night. I am so blessed she lives close. I’ll tell her you wrote. Thank you for your kind words about my work. Blessings! Barbara