The following story was written by my daughter, Stephanie. It describes one of her first encounters with palliative care in her then-job of Home and Community Care Nurse. Many of the things she learned during her time with this family are the same things caregivers learn in caring for their own loved ones as they travel the Alzheimer’s path. It’s a beautiful story, poignant and sad, and also filled with strength and joy. It’s a true story, but the names have been changed to protect the privacy of those involved.
Dying and Death
It was spring and the flowers were blooming along the walkway. The flagstone path was a gentle curve, with bright green moss between the stones. The heritage home exterior with its columned, wrap-around porch looked grand and was carefully tended with fresh blue and white paint. Together the grounds and house were picturesque and beautiful.
Inside the house, an elderly woman who was a wife and mother was in the process of dying. I am a nurse who travels to homes to support individuals and their families through the process of dying and death.
I rang the bell and was told to, “Come in.” In the hall, I took off my shoes, then walked into the large parlour where my client, Sheila, was on a lounge-turned-bed. She was a small, frail bird, dressed in a light cotton gown. Her long, grey hair was strewn across the pillows, her head propped at an awkward angle. She did not look comfortable. She was grey in colour and her face was slightly tense even though her eyes were closed. Her grown son was sitting across from her on an old Queen Anne’s couch, bent over a laptop computer set on a table in front of the couch. Someone was in the back of the house, doing dishes I assumed. I could hear water running and the clink of dishes in a sink.
I introduced myself to Sheila. Her eyes fluttered but she remained silent. Her son stood, shook my hand and said, “Welcome. I’m Gord. Dad’s in the kitchen.” Gord sat back down, his attention returning to the computer.
I sat on the stool next to the head of the lounge and Sheila opened her eyes and quietly said, “Hello.” She attempted to smile. Her lips were dry and cracked and I offered her a drink. She nodded yes, and when I took a glass of water off the table beside me and guided the straw to her lips, she sipped.
Just then, her son exclaimed, “Mom, she’s made it past the first checkpoint. She’s in good shape and up with the head of the pack!”
Sheila swallowed then smiled. A full on, cracked lips starting to bleed, teeth visible, smile. She kept her eyes closed.
Sheila’s husband, who, I would learn, had been married to Sheila for fifty years, wearily shuffled into the room, introduced himself as Simon, and dropped onto a wing-backed chair opposite the lounge. Simon explained that his daughter-in-law was running her first marathon. He said the whole family was extremely proud of her, and that it had been an incredible journey for her just to get to the starting line. He tenderly said, “Vicki is running and we won’t be there at the finish line.”
Sheila shivered, then reached for a stainless steel salad bowl that was tucked beside her pillow. I quickly helped her fold her hands around it and tilted her head and shoulders over the bowl. She vomited and started to shake. Her face reddened and as her small body convulsed with dry heaves, she began to sweat. Finally, it passed and I eased her back onto her pillows. While I washed her face and lay cool cloths on her forehead, Gord emptied the bowl and Simon went to find his wife a clean, dry, cotton nightgown.
When we all settled back into our previous positions around her, Simon explained that it was actually very difficult to care for Sheila, explaining in a tired voice that she could not tolerate much when it came to food and drink. “Not even water,” he said. He explained that sometimes she took a few spoonfuls of yogurt or apple sauce with her medications and that was all. She didn’t want to be moved and lay day and night on the lounge. She often attempted to traverse the huge distance down the hall to the bathroom.
Simon sighed, and said he carried her because she was extremely light. My notes said both he and his wife were in their 80’s, and I could see he wasn’t physically strong. He sighed again and supposed, “Well there won’t be much you can do I guess. This is how people die is it?”
His question invited me in. At the same time, I was reminded there are dynamics embedded in an offer and an acceptance of help. The word suggests a collaboration, not a taking over of what this family was so importantly doing.
I did a thorough assessment of Sheila and discovered she was actually in intolerable pain, had nausea and vomiting most of the time. She was completely constipated and had a myriad of other symptoms. Both Gord and Simon were physically and mentally exhausted, too. They had been attempting to look after Sheila without enough information, few resources, and no help. I explained what I knew. Sheila attempted to respond to questions, and the next while passed. I left after giving assurances the Vancouver Island Health Authority (VIHA), my employers, and I could help.
It would take far too much time—over three days—before I was finally able to converse with Sheila’s doctors and straighten out her medications, arrange for equipment to be brought in, and organize people to assist this family in physically caring for her. But that was just the beginning of the run. Over time, the family and I would relate the haul of being caregivers to the momentous marathon race that Vicki completed in good form.
At some point in the continuing visits, Simon and Gord and I developed the ritual of the ‘update or newest story’. At the beginning of each visit, Gord and Simon would meet me at the door and tell me stories or give me updates. I was the listener, who could provide suggestions when asked. I was able to draw on their knowledge of caring for Sheila, and in turn support them to feel more secure that the experiences they were having were part of the ‘normal’ process of a loved-one’s dying.
When either the men or Sheila asked questions, they signalled their readiness to embrace information about the process and integrate it into their own culture and ways of doing things. I was a teacher-coach, who needed to let them succeed with their own interpretation and implementation of the suggestions I made. They seemed genuinely relieved with the help I was able to give, and they carried on with the task of caring for Sheila.
One day when I arrived, Sheila had her eyes open and her face was relaxed. Her daughter-in-law was at her bedside and her biological daughter was sitting in a chair by a window, reading. Sheila 2motioned for me to sit next to her on the bed. She said, “All my children are here now, aren’t they beautiful.” Gord and Simon came in and sat on chairs. The family started to tell stories of their lives together and apart.
I was honoured to listen for awhile, then finally took Sheila’s hands and said, “Things are well today, you look comfortable.” We didn’t need to say the rest.
She had given her family permission to let her go, and to grieve and rejoice in their lives. She smiled a full smile. Her lips, now well coated with Vaseline lip balm, didn’t bleed. She did not attempt to sip water. She had a small cranberry-juice-flavoured ice chip on her tongue, which seemed to satisfy her thirst. She was warm and dry and surrounded by those who loved her. I left the family to laugh and cry over the stories of their past and to put forward their hopes for their future.
A few days later, I received a pretty card with flowers on the front from Simon and family. It read, “Thank you for easing our journey…Sheila passed away peacefully at home, surrounded by those who loved her…” I heard later that day that instead of a funeral the family decided to all go camping together. Sheila had loved the outdoors.
This family taught me that dying and death is a path before us that is best accomplished when carefully tended. The process of dying is somewhat like a marathon. It’s a journey that often has blood, sweat and tears involved. It can leave a dying person, and their caretakers, breathless and in a heap at the end. But, like this family’s beautiful home and garden, when well tended it can leave a family with a solid structure and beauty around them.
I will always be grateful I had the privilege of assisting them to be together at the finish line.