Caroline Patrel was 97 years old when I met her and mostly non responsive. Her terminal diagnosis was Dementia and I wish I had known her even one month before when she could still speak and tolerate being out of bed. Even for people with advanced dementia, there is a window into their world and their lives from the things they say and do. From the descriptions by her caregivers, she lived her life doing her own thing and I admire people like that. It was August and only one year prior, she had been out mowing the lawn wearing her “daisy dukes.”

Since Caroline’s only son, David, lived out of town and worked all day, there were hired personal care attendants in the home 24 hours a day. They were loving and wanted to do what was right for Caroline but none had cared for people at the end of life before. One, in particular, Rosie, was focused on and prided herself on being able to “get some food into her,” even when Caroline was too sleepy and unable to swallow. We all want to feed those dependent upon our care, but at end of life, places a real burden on the human body, which does not feel hunger at this stage of life. The loss of appetite is the body’s natural wisdom.

For most people, food is care and love and it is ultra important to feed those in our charge. Otherwise, we feel that we are starving them. This is the hardest thing for families and caregivers at the end of life when the body begins to shut down and feeding is the last thing it needs. I spent much time talking to the caregivers about this. I offered them other things they could do for Caroline that provided her comfort, like holding her hand and playing the kind of music she liked on an ipod dock next to her bed. On warm days, they opened the window, so she could feel the sunshine and smell the gardens that she had so loved in her life.

The caregivers and Caroline’s son were receptive to teaching and within a few days, were confident and skilled with turning Caroline, making her comfortable and recognizing when she was uncomfortable. They knew to watch for any wrinkling of her brow or tensing of her body. As her breathing became noisy and rattling, they administered two drops of Atropine solution under her tongue to relieve it. They knew that it didn’t really bother Caroline (and there is evidence that it doesn’t bother any of the patients who do this) but it is disturbing to listen to because it sounds like the patient is drowning. We knew it wouldn’t be long. It is nearly impossible to predict when someone will die, but the one statistic we have, which means nothing to an individual, is that once the rattling breathing begins, the average last breath is about 16 hours later. I made my final visit to Caroline and her caregivers on a hot, bright, Friday afternoon. I resisted the urge over the weekend to check my computer to see if she was still in the census. Our manager and my mentor, Vanessa, advised against doing things like that in order to keep our own time our own and minimize burnout.

I was surprised to find, when I was first learning about hospice nursing, that it was hard to sleep. I had never had trouble sleeping and once slept through the house next door burning to the ground in the night even though fire trucks from every surrounding town screamed to the scene. (Everyone got out safely.) Now I couldn’t shut my brain down easily or unwind. I would lie in bed thinking about my patients and their supplies of medication and dressing supplies. Were they comfortable and did their families remember that we wrote down instructions for managing restlessness overnight? If I did sleep, I had vivid dreams that I remembered in great detail in the morning and thought about long into the day. Finally asleep in the small hours of Monday morning, I was jolted awake by a micro instant of twittering by my left ear. (As I write this, I can feel the sensation again.) I could feel the sound at least as much as hear it. I initially threw the covers over my head, thinking there was a bat in the house. It wasn’t until later that afternoon that I realized that it had been Caroline’s spirit swinging by on the way to her next adventure.

I am a hospice nurse.  The posts that follow are events and experiences from my first year as a hospice case manager.  Though I’ve been a registered nurse since 1987, hospice nursing is unlike any other experience.  Most people who haven’t had personal experience with hospice care, don’t know what it is really about.  It turns out it’s more about life than death.