It’s pretty much a fact that bitterly cold winter days are made infinitely better by a bowl of soup, a warm blanket and a game of cards. JourneyCare’s third annual Soup & Stories volunteer service project, which takes place over the Martin Luther King, Jr. Holiday weekend, exists to provide these very items to hospice patients and their families.
The winter season is one of dichotomous feelings and expectations. With a flux of holidays, considered by many to be “the most wonderful time of the year,” there also comes the sadness mirroring a period of loss, change, darkness, and cold. For those who have experienced a recent death of someone they love, there are constant reminders of traditions and memories, but also of the empty place at the family table. As a grief therapist with JourneyCare throughout the past three years, my calendar grows ever fuller as December rolls around. There is also palpable relief in those I counsel when the holidays have passed us by.
My nursing career was born in intensive care units and emergency trauma rooms, serving patients in fast-paced, critical settings. When dealing with cardiac arrests or other life-and-death emergencies, I felt highly comfortable helping patients in these crucial moments.
So when my nursing focus shifted to hospice and palliative care (first in Northern Virginia), I was also comfortable asking the tough questions.
My mentor, author and RN Maggie Callanan, taught me to use the first two to three hospice visits with our patients to build trust and understand their beliefs, wishes, and needs so that we could best serve them in whatever time they might have.
Maggie stressed the importance of hoping for the best by preparing for the worst and so during the initial visits we intentionally asked: “If you could design your own death, how would you do it?; Where would you want to be and who would you want to be there?; Do you believe in something after death?; What do we need to do to make you feel as comfortable as you can be?”
My dad, Richard Lyons, spent the last four months of his life on the third floor of the Marshak Family Hospice CareCenter. He had been receiving hospice care at my sister's house for two months prior. But on July 16 of this year, his symptoms had worsened and he fell.
When my father initially arrived at the CareCenter it appeared he only had days left to live, but it was such a profound relief to be in such a beautiful place and know he was getting excellent care. His room had an amazing view that I likened to Ireland, where he was born. Being able to walk outside and sit in the gorgeous, peaceful gardens or sit in the family room with the incredible view made the experience pleasant. As it turned out, he did not pass then and it became clear he could actually live a while longer.
Many people know the beauty of the words drawn from the Biblical Book of Ecclesiastes, Chapter 3. This ancient poem (in the 1611 King James Bible) begins, “To everything there is a season, and a time to every purpose under the heaven.” And then, the second verse continues, “A time to be born, and a time to die.”
The writer is correct, every one born will, someday, die. That we will die is not unexpected, but it is a moment not easily faced. It is not a topic we lift up in polite company. We sense its finality in our souls and are often ill-equipped to face it. Death can feel like the ultimate thief, the ultimate enemy and so we convince ourselves that it is far away and refuse to acknowledge it is a reality for all who ever draw breath.
My friend Dale grew up going caroling with her family at Christmastime in the neighborhood surrounding their local church.
As for me, my husband and I started a tradition shortly after we were married, inviting friends over and singing Christmas songs in our own Barrington living room. (We always wanted to do door-to-door, but we just weren’t confident enough to go into neighborhoods where we did not know anyone!
I believe people are intrinsically good and want to help others, but don’t always know how.
That’s why sometimes it’s important to simply ask. Talking to friends, neighbors, colleagues and even our online social networks can be a great way to point people in the right direction.
It was earlier this fall that the idea struck me and four of my fellow volunteers. After several years of giving our time at JourneyCare’s Markshak Family Hospice CareCenter in Glenview, so many people had thanked us for our time and effort. But we realized there was no special event for us to thank the dedicated CareCenter staff for their hard work.
I feel so blessed to live during a time when advances in medical care and technology have helped many to live with or live through life-altering conditions, exceeding disease trajectories by not just weeks, but months and even years. But there comes a point in a serious illness when even the most cutting-edge, technical, and specialized medical interventions do not get us where we want to be.
Early on in my hospice career, I was taught a beautiful lesson: healing does not mean cure. I had a 36 year old patient who was terminally ill with sinus cancer. He had endured several painful and unsuccessful facial reconstruction surgeries which had left his face scarred and bloated. He was married with a teenaged son.