Now Featured in the Patheos Book Club
Peaceful Passages: A Hospice Nurse's Stories of Dying Well
By Janet Wehr, RN
Chapter 15: Till Death Do Us Part
Margaret met me at the door when I came to visit her sick husband. She was tall and lean and elegant, with a Katherine Hepburn look about her. The woman in front of me had a willowy body, a tidy grey bun on the top of her head, and the clean, pretty look of a girl raised in the country. Margaret's appearance, and the way she moved, belied the fact that she would turn eighty-five on her next birthday. She was in excellent health, she told me, and could care for her husband alone, but her daughters insisted on helping her. I was glad that Margaret had these generous offers from her children. It would allow all of the members of this family time away from their care-giving duties to get a breath of fresh air and to refocus so that they would be able to function for the long run, if that's what it turned out to be.
Doctors give educated guesses about a patient's prognosis—how well they are expected to do with their illness, and for approximately how long. However, these patients represent each end of the spectrum; some die much faster, and some live much longer, than the educated guess informs. When an illness goes on for a long time, it can take its toll on the person performing the care. Our concern as healthcare workers is as acute for the person providing the care as it is for the patient.
The care-giving duties are many, and the hours are long, when a patient is succumbing to an illness. Unless there are alternate people to fill in the hours of the care during the day or night, it is truly a 24/7 job. Patients who do not want to be isolated in a bedroom when they are no longer able to be out of bed often opt to place their hospital bed in the living room or other common area, so that they can still be in the hub of the home during mealtimes and when visitors arrive. The room becomes a combination bedroom/dining room/hospital room, with portable commodes, extra linens, an over-bed table, a medication table or drawer, stacks of incontinence garments, dressing supplies, walkers or wheelchairs, and many more items that are usually needed to care for the dependent patient.
The duties, which take up a good part of the day, include bathing, dressing, and repositioning the patients multiple times a day. Transfers to a commode at the bedside, or to a wheelchair for trips to the bathroom, can be needed hourly. Frequent diaper and linen changes are an absolute necessity to keep the skin from breaking down into bedsores, and frequent dressing changes to bedsores need to be done, should they occur. Providing meals, glasses of fluid, scheduled medications, and love and support add to the long hours of care. All these combined responsibilities contribute to the common problem of what is known as "caregiver burnout."
Margaret led me to Mason, who was sitting on the sofa in a screen-enclosed porch at the back of the house. Through the screens, flowers and shrubs of every kind could be seen in a panoramic view. Birdfeeders, and the dozens of feathered friends that they attract, were placed strategically around the yard. The room conveyed the feeling of camping out in the woods, and Margaret and Mason "lived" there during the summer months. They slept out there every night on a pull-out sofa bed, surrounded by a symphony of crickets and other nighttime creatures.
One look at Mason told me that he was very sick and probably only had a few weeks or maybe days to live. His three daughters surrounded him, straightening his collar, kissing him, and talking to him in soft voices. He had oxygen running into a canula in his nose, but still his breaths were ragged. He smiled at me, and all I could think of was one of the elves at the North Pole, with his dove-grey eyes, crinkling at the corners, and his shock of pure white hair. He easily talked about the realization that he was going to die and stated that he was ready. His daughters cried, and Margaret sat beside him patting his back, nodding that she understood.
I noticed that there was no hospital bed in the room and asked Mason if we could have one delivered. Decisively, but kindly, he said, "No, dear. Margaret and I always sleep out here in the summer time, and we always sleep together." I simply told him that if he changed his mind to let me know. I completed my visit and told the family I would return after the weekend for my next visit to see if there were any new needs for Mason's comfort. When I arrived at the home as promised Monday morning, Mason and Margaret's daughter, Katie, met me at the door. She had been crying and her face was swollen and red. She said, "Did you hear?"