We don’t have role models on what the last hours to moments before death are like. What we have is television and movies portraying someone dying. The scene often includes the dying person saying something important or profound then they shut their eyes and are gone. This seems to be the role model we have developed.
We used to have real life role models because Grandma died at home with the family present. Dying and death was a natural part of life. We silently watched and supported each other. We didn’t really talk much about what happened. When Grandma was gone, we grieved.
Then times changed. Grandma wasn’t at home when she died. She was in the hospital with no one there or she was in a nursing home. She died alone and we were called in the middle of the night and told Grandma had died. Too often the next time we saw her was in a coffin at the funeral home wearing make-up, glasses on, and dressed in a special outfit.
Come the late 1970s, the hospice death and dying movement arrived and some of us started thinking about “a better way” to address how a person’s life ends.
So now more and more people are actually present when someone is dying BUT we still don’t have accurate role models. Which means many of us watchers think something pathological is happening. The facial expressions, the random movements, the smells, the awkwardness, the wetness, the tear, the sounds sometimes present with real life dying are interpreted as something wrong, something bad, something oh so NOT normal ——after all, it doesn’t look like that in the movies.
What are realistic death bedside expectations? Again, not normal is the dying person says something important and then they stop breathing. A person is generally not going to say “I love you” and then die. Maybe, very rarely (I’ve learned to never say something will never happen), they will say something meaningful but it probably won’t happen.
What is normal is the person may be talking BUT they won’t be making sense. They may be talking to people you don’t see or hear. Yes, I believe our loved ones who have gone before us come in the weeks to days and hours before we die to help us get from this world to the next. It is common to hear talk of those who have died before us. You may hear random words, see random facial expressions, uncoordinated arm, leg and body movements. You may see a frown, a grimace, a tear. You may smell bad breath and the release of bodily fluids (pee and poop). Their eyes are partially open, non seeing. All this is how death generally comes.
What I have described is the real labor of dying. It can be messy and hard to watch. It isn’t calling out our loved one’s name and then peacefully dying but it is a meaningful and, yes, a beautiful part of living.
My concern is when we glorify the movie scenes of dying we create false expectations of what dying is like. False stories and mental images cause undue suffering and mental anguish in those of us left behind. The false images of tranquility makes us concerned that our loved one “didn’t do it right,” that something bad happened.
13 comments
Thank you for your work and the booklets you have produced – very helpful!
Barbara, this is a great topic. When I first went into hospice nursing, I remembered all the things I had read about death and dying from Maggie Callanan and Elisabeth Kubler-Ross, and thought that my patients would tell me all about what they were experiencing on both sides of the veil. Though I learned much, in general it was not from the patient’s mouth. By the time that they were nearing the exit, they were usually unable to talk very much. I felt a fair amount of disappointment.
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BK Books replied:
Hi Paula, I know. Being at the bedside taught us that dying wasn’t like what we expected. Blessings to you in the work you are doing. Barbara
When my stepson died at 35, he was in his bedroom surrounded by the family. We had, had a love hate relationship, but when he was diagnosed things changed. In the hour before he died he said two things. " I love you Val" and “Hi face ache” (and a smile) when I entered the room saying the same to him. It was a pet name. It was profound. To my knowledge he didn’t speak to anyone else that night, not his Dad, Mum, partner or brothers. Sniff
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BK Books replied:
Val, what a special gift your stepson gave you. Blessings! Barbara
Having had the privilege of being both a primary caregiver and helper several times I cannot say enough praises for your booklet Gone From My Sight. I have purchased several copies and freely hand them out when I feel they would be helpful to others. Thank you for putting into print such helpful information.
It’s so interesting that you used the statement “didn’t do it right”. While you were referring to the family having that thought towards the dying, I too had that thought when we (my doctor and I) thought I was dying. I had that thought constantly because I only got to die once, there were no do overs! I felt like I was driving a train wreck. It felt like it was my job to make my family members feel okay about my dying. I was terrified of not getting it right! Yes. I know how absurd that sounds. At least I do now! Clearly, it was my train and of course I was the one driving. When you believe that you’re dying, which I was certainly sick enough to die, your brain can really go to some strange places!
It was late 2016 when I was told I was dying. It was Sept 20th, by mid October, I was in hospice. When they first came, they gave me your little blue book. I can’t tell you how much that book meant to me at the time, and still does today, however for different reasons. I’m sure that back then, you might not have agreed, or approved why I liked it. ;-) I still have the book.
Back then, I read it 2 -3 times per day. I never showed it to my family. That was a very intentional decision. Most of my family lived at least an hour away from me, some as many as 3 1/2 hours. I didn’t want them to have anything that might give them an idea of what might be happening as I died, in particular, my mom. She would have either driven the hour to me every day, or she would have come and not left until I died. Obviously I didn’t die. But in an odd 180 twist, that little blue book was also a way for me to gauge how alive I still was. I don’t think I understood that at the time.
I’m still quite sick, my lungs are very damaged leaving me on high flow O2, and I have other serious health threats, and now we have COVID. I work very hard to stay home and away from even family. It would just be a horrible tale to have survived so much for so long to only get sick with COVID.
Barbara, I can’t tell you how grateful I am for your little blue book, ‘Gone From My Sight’! I’ve tried to imagine how many people have benefitted from that one book alone, but have long since decided that it would be an untold number. Thank you for your work. It’s so incredibly important! And I’m so glad to be here to be able to share my story… Even if it is what I think most would find strange. But its honest. I’m doing surprisingly well with everything that’s going on. And while it may have been a little unorthodox on my part, you had a great deal to do with my surviving both emotionally and mentally. I’m very grateful!
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BK Books replied:
Shelly, what a journey you have had! Thank you so much for sharing. I am honored to be a part of your experience. It appears we have had a connection for quite some time, I just wasn’t aware of it. Let’s change that. If I can be of any help or guidance as you go forward please reach out. Use my personal email barbara@bkbooks.com.You are in my thoughts and blessings. Barbara
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