Hospice Helped Us Live ‘The Only Day that Mattered’

“I think we should talk about engaging home health,” Shannon said. As Jimmy’s nurse practitioner, she knew better than to use the word “hospice” with either me or my son. Jimmy didn’t understand just how bad the latest MRI was, and I was in determined denial about what the future held.

So instead, Shannon sold home health as a way of allowing Jimmy to get blood tests and weekly exams at home instead of having to drive to the clinic. As an opportunity to introduce Jimmy to a social worker in whom he could confide his worries and fears. A path to extra support for me and Dan and Molly, long before we needed it, as if any of us really knew how long Jimmy had.

That amazing team stayed with us until the end. Alicia, advocating internally to become Jimmy’s hospice nurse, fighting a battle I didn’t even know needed to be waged. Aja, coming to the house, week after week, sitting quietly with Jimmy on the couch, allowing Dan and me to pour out our fears around the dining room table. Shannon, only a text or phone call away at all hours of the day or night, coaching me on how to manage Jimmy’s pain and keep him comfortable. The three of them allowing us to help Jimmy keep living until the very end.

The safety net they created meant we were free to open our home to anyone and everyone Jimmy wanted to see during the final days of his life. High school friends, his closest college friend, my mom, Dan’s siblings, our friends, the people who Jimmy and we love most.

Looking back at that tender time, what I treasure most are the lessons our hospice team left behind and now live on as I share them with others.

• It’s the little things that bring the greatest joy. Being able to get out of bed to join us in the kitchen or living room. Eating a bit of food. Feeling no queasiness or pain. Small but important daily victories.
• Motion matters. Going for a walk to the park, making it up the hill on our cul de sac, walking up and down the hall, navigating around the kitchen counter. No matter how short the distance, no matter how slow the pace, walking together meant that Jimmy was still moving, still upright, still here.
• Today is the only day that matters. I quickly learned that no one, not even the doctors, knew how many months, weeks, days Jimmy had left. It did us no good to try to count the unknowable. We had him here now. That was all that mattered.

Photo by Johannes Plenio.

Margo Fowkes is the founder and president of OnTarget Consulting, a firm specializing in helping organizations and individuals act strategically, improve their performance and achieve their business goals. Author of the award-winning Leading Through Loss: How to Navigate Grief at Work, Margo also coaches leaders on how to create a more compassionate culture by acknowledging and speaking openly about grief and loss in the workplace. After the death of her son Jimmy in 2014, Margo created Salt Water, an online community providing a safe harbor for those who are grieving the death of someone dear to them.