The first time I heard the phrase “actively dying” I thought oxymoronic was an apt description. Actively stopping? Extending energy in order to cease to exist? I couldn’t see it.
Not until I witnessed the event, did the wording make sense. And Saturday, I watched two more individuals as they were indeed “actively dying.”
“Mr. B” is on oxygen and has been since he came to the hospice. When I initially encountered this elderly black gentleman a few weeks ago, he had just asked a volunteer for watermelon. While the beautiful, body-building native of Haiti could scrub a shower, maneuver a wheelchair and chat up the residents with ease, he was slightly out of touch with Southerners’ love of the red melon. When he came to Mr. B’s door with a small bowl of carefully scooped melon balls similar to what you might find as a side dish in a fine restaurant that the chef added to the plate mainly for color, Mr. B peered over his oxygen tube with the eyes of a professor assessing his student’s work. And I laughed to myself. Mr. B’s voice was terribly soft and even a simple sentence took a while to construct given the confines of his limited lung capacity, but finally he said, “What’s this?”
The volunteer quickly responded, “The watermelon you asked for.”
Mr. B replied simply, “Do you think there might be a bit more back there somewhere?”
When the volunteer exited to try again, Mr. B looked at me and once again expressed with his eyes what he could not muster the energy to say with words. If you can imagine the face of a person “tsk, tsking,” you’ve got the picture.
"S" was a relatively new arrival on that day weeks ago. She had me confused for a moment because she really didn’t look sick, and I thought she might be visiting someone. Not everyone who comes to the hospice has “the look” of a person in the last stages of AIDS but these days many do. S was a shapely blondish-brown-haired woman who shuffled slightly when she walked but otherwise seemed to be the social butterfly of the house, flitting from one conversation on the for-smokers-patio to another in the den/dining area gathering space.
Her lack of visible symptoms fed my surprise when she asked for help with a shower. But I’m not there to argue so I agreed. I gathered up the towels and washcloths while she collected her toiletries and then we entered the 4 x 5 ft shower off the main hallway. (Note to self: in the future, check to make sure the fan is on before enclosing yourself with another person in a steamy walk-in shower in Houston in June.) During the disrobing I discovered many things about S. She was way more unstable than I thought – physically and probably mentally as well. She was also the “beneficiary” of what she called a bad boob job. I didn’t study the situation in detail so I’m just trusting her story that one breast was not in proportion to the other. I was too busy with the washing of her back, feet and hair and shaving her legs to bother with any inspection of that sort! Since I was fully clothed, sweat began to pour off my face while I practically stood on my head to get the shaving done. And if you’ve never tried to shave another person, you will be amazed at how much guesswork is involved. I never imagined that the object being shaved is informing the process quite as much as I now know it is. With my light touch, I’m not really sure any hair came off those legs. Throughout the process, S sat in the shower chair, thanked me several times, talked of a sister’s upcoming visit and family squabbles her brother and sister were into.
I didn’t catch all the details then. Too many product, towels, and steps and stages of the process to keep up with prevented it. Later I learned that S had once been married, had three kids, and then fell in love with a guy who pimped her out – first as a dancer and then for sex.
I met both Mr. B and S a few weeks ago, and both are now actively dying.
Those are the words used in the report given by the nurse when volunteers first arrive. Many times that means they are comatose or in my seasoned medical vernacular “out of it.” But Mr. B and S are both mentally still with us. S is hallucinating but those visions come and go. Mr. B can’t muster the energy to talk but he recognizes what’s happening. You can see it in those expressive eyes.
Yesterday I spent most of my shift watching them go. The “active” part of the equation was startling. S is fretful, anxious. Her dreams awaken her and she’s trying desperately to make things right in the stories of her mind. The greatest gift I thought I could give her was presence, pats, and assurances that she wasn’t alone.
Mr. B is focused on doing what he knows must be done but each breath is a labor. You can almost see him considering, “What if I stop? What if I just don’t try anymore?” But he keeps at it. I went to sit with him for a while, too, but another volunteer was in there singing hymns and praying. I went back to S.
When I left, she was sitting upright and a visitor was holding her hand. I’m not sure if this was a sister or a friend but I got the sense it was family. S wanted to “go out and play” she said. The nurse didn’t hear her at first and then mistook the request as a real one. I pointed out S’s mischievous smile, and was glad that would be my last memory of her.
Later that day, I sat by a pool with fellow volunteers frolicking within. (There's nothing quite so chuckle-producing as grown men using rubber ducks as squirt guns.) And it was a great reminder that while those actively dying deserve attention, space and grace. The actively living are too be celebrated too.