I am nine years old, standing wide-eyed, frozen in the darkened hallway by the closed door to my parent’s bedroom. My mother is inside, gasping the words to the 23rd Psalm. Something is terribly wrong. Terribly wrong. I don’t know what it is, and I don’t ask. She’s been sick for more than a year, spending more time in bed as the months pass and recently, oxygen tanks were hauled up to her bedside.
As an employee of JourneyCare and a person working in hospice for many years, I understand the importance of dying with dignity. My grandfather had been declining since September of 2015. My mom and I flew out to Puerto Rico and brought him home to Chicago to take better care of him. It was an ongoing battle with my family. I wanted hospice and they wanted to fight to keep him alive by any means necessary. I had to learn, with the help of my wonderful coworkers, to take a step back and wait for her to ask me.
For over 30 years, three nonprofit, community-based hospice agencies separately served parts of 10 counties in the Chicago area and northern Illinois. In June 2015, these organizations combined more than 100 years of experience and expertise to become one: JourneyCare. Today, JourneyCare serves nearly 400 communities in those 10 counties. It’s been one year since we made that announcement ... and what a year it has been!
It’s the last thing hospice patients do before they are discharged from service.
Lilian, Mary, Emmett and so many more.
As hospice nurses, we all have patients who have touched our hearts in profound ways.
Many folks think hospice is a sad thing. It’s not though. The grief families experience comes from losing these beautiful souls and anticipating a world without their jokes, their laughter, and their wisdom gained from a lifetime of experience. It's not sad for me though ― each is a celebration of a life and the end of one soul's human experience. But hospice nurses experience the loss in some ways as well. We all have different ways to cope too.
On a recent visit to Journeycare, we stood outside the doorway of a patient and asked the family if he wanted to visit with Mystery, one of our miniature therapy horses.
We were told the patient really loves animals, but that they were uncertain whether he was prepared for it at this time. Encouraged to ask the patient himself, we walked into the room. The man slowly opened up his eyes.
If you knew today would be the last day of your life, how would you live it?
Many might imagine themselves emptying their bank accounts, splurging on an over-the-top dinner and night of frivolity in a last grasp at indulgence. Others possibly envision doing something taboo because they wouldn’t be around to suffer the consequences. Many see themselves scrambling to check off items on their “bucket lists.”
I think these are fantasies. Daydreams. In fact, I believe most of us actually would spend our final 24 hours with just a little bit more of what we already have. A little more love. A little more time spent with friends. A little more family. I don’t think we would change much. We probably would call everyone we cared about and tell them, “I love you.”
Hospice care offers us this closure.
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?”
It doesn't seem possible that I have been with Midwest CareCenter for nearly 10 years. The service area, team members, pharmacies, DME companies and some staff have changed over the years, but one thing has remained constant—our commitment as nursing professionals to stay educated and to provide quality, compassionate care to our patients, families and communities.
This hospice, this wonderful, caring, abiding presence in all our days, humbled me in 1979. It continues to do so, even as I express my gratitude to it as a superb caring entity, which is superbly represented by each and every one, a caregiver, directly and indirectly.
In 1979, Paul Wise, a new patient to me, informed me in his initial visit that he had recently lost his wife. Later, after his physical examination, he asked if I knew the name Cicely Saunders. My first thought was, "His wife has just died and already he wants me to know of his new lady friend." But fortunately a second thought came in, Isn't she an English woman? Something about "Hospice" or some such? Care at home at the end of life?
If you have read my previous posts here at Your Best Day, Today, you know that my experience with Midwest CareCenter has been based on the death of my 48 year-old husband, Tom. He died too young but, as I have said so many times before, the care he received at Midwest CareCenter turned a terrible thing into a comfortable, loving event. But I actually had experience with hospice in a completely different setting when my mother died in 2006.