Dianne Rinehart is a journalist and journalism instructor at the University of Guelph-Humber.
A holiday spent in a hospice may not sound like a cheery, festive time. But trust me – it is.
My sister, Elaine, recently died in the Dr. Bob Kemp Hospice in Hamilton, Ont. It was Nov. 29, and the spirt of Christmas was all around.
She was suffering terribly before she moved into hospice, even though she was in a supportive seniors’ residence that had PSWs on call to help with home care. But patchwork care cannot fill the needs of someone in the last months of ALS, a neurological disorder. Each day, the decline in her physical abilities was shocking for all those who loved her.
But no matter the humiliation of not being able to care for her personal hygiene – or closer to the end, when she struggled to breathe and swallow – she always smiled to greet everyone, making us more comfortable with her situation than we could possibly have been without her encouraging, loving gaze.
We were so relieved to get her into hospice. There, she received not only kind and loving and compassionate care, but she also received it around the clock.
I remember her telling me that early in her days there, they used a lift to get her into a bubble bath. The nurse sat behind the spa-sized tub so that Elaine could feel like she was alone in a bathroom, like she would have been before she was struck down physically – though never mentally or, to her vast credit, emotionally – by this horrendous disease. Above her there were twinkling lights. In that tub, the horrors she had been through for the past year – waking up each day to realize she had lost one more physical ability – dissipated. This is something she could never have experienced in a nursing home or hospital. The hospice not only gave her her dignity back, but as crazy as it sounds, a place where people go to die gave her the enjoyment of life back.
Every day, the nursing staff, volunteers and grievance counsellors gave their energy and their kindness and their concern not just to Elaine, but to all of us who loved her. Of special note were the Kitchen Angels – women who volunteer their time at hospices to cook all the meals and bake all the goodies. One woman in the kitchen, tall and elegant and dressed up in a cheery, bright orange outfit, told me she had a job that she did for money, but this volunteer job was the one she loved: cooking for the patients in the hospice and their families and friends.
On the day before my sister died, one after another of the staff members who were not going to be there the next day came in to say their goodbyes. They told her how much it meant to them to care for her, how much they loved her company and her sense of humour. Their comments were heartfelt. It meant so much to my sister to be honoured like that – and so much to her family and friends.
As we gathered around my sister’s bed on her final day, the staff were also there, giving comfort and love to all of us, including being there to hug us after she died. And when she died, they honoured my sister, the most loving, caring woman imaginable, with a ceremony.
As we, her family, huddled and comforted each other, the hospice bereavement counsellor gave all of us a lit candle. And as the funeral staff wheeled her out of the room, covered in a gorgeous quilt that honoured her in death, we all filed in behind her. And as we formed our little procession, holding our candles close to our hearts, tears fell from my eyes, not just because this was within the first hours of my sister’s death, but because all of the staff and volunteers in the hospice lined the corridor holding candles, too, to light her way into the next world. The kindness and compassion in their eyes overwhelmed me with gratitude. ALS is a long and terrible way to die. But they gave her “comfort and joy” in her last few weeks. If only we could care for each other throughout our lives as hospice staff and volunteers care for people at the end of theirs.
And so yes: Happy Holidays to all who are in hospice, to all who care for people in hospice, and to all who help fund hospices. As I learned, they are not places where people go to die, but places where people go to live in loving comfort in their last days.