On Betty’s journey, I have learned something I had not known; I am very strong, strong enough to stay, strong enough to go when the time comes. I am staying not to cling on, but because sometime, at least once, everyone should see someone all the way through. All the way home. John Hodgman, Bettyville
“It’s time,” Mom said. “Come now.”
Dad had collapsed into bed the night before saying, “I can’t do this any more, Mart.” The pain from his spinal stenosis had built to a point where only morphine could control it. But Dad hated feeling out of it so he would try to rely on Motrin instead. When the pain became unbearable, he would switch to the morphine until his frustration over feeling loopy would drive him back to the Motrin. That Sunday night, he couldn’t take the cycle any more.
The next morning, Mom couldn’t wake him so she called to tell me to fly home. She’d already engaged hospice, the nurse coming once a day to check on Dad, make sure he was comfortable and answer any questions we had. Her kind, calm presence allowed us to face the final four days of Dad’s life focused only on him.
“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 Jimmy. He 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 the idea of home health as a way of allowing Jimmy to get blood tests and weekly exams at home instead of having to drive to clinic. As an opportunity to introduce Jimmy to a social worker in whom he could confide his worries and fears. Some 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.
Here’s what they taught me …
- 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 so it did us no good to try to count the unknowable. We had him here now. That was all that mattered.
- Having a safety net around us meant that 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.
But what taught me to truly appreciate hospice was Mom’s death. Her blood disorder worsened after Jimmy died. I’ll never know whether she kept the news from me of just how dire it was or whether she was in denial. Either way, her rapid decline, just a few days after her final hospital stay, caught me completely off guard. I had to pry the significance of the latest test results from the hematology nurse when she called to give me a heads up about what they’d found that morning during Mom’s appointment.
I raced to San Jose and found Mom waiting for me, using every last bit of her energy to sit up in her wheelchair. “Oh Margo, you’re here,” she said. “I love you.” And then, with the help of Alga, her friend and aide, she got into bed for the last time. Five days earlier, I had brought her home from the hospital, exhausted but in good spirits. Encouraging me to return to Dan and Molly. Saying she just needed to rest. Now she was dying.
My arrival was permission to go. And yet she couldn’t because the pain was too great. The hematologist, convinced that Mom had weeks, if not months, to live, had prescribed pain pills, tablets that had to be crushed and fed to her in applesauce.
I called hospice immediately, only to discover that the office isn’t open on Saturday, and the staff is only available for intake appointments Monday through Friday. I will be forever grateful to the young hematologist on call who drove to her office on a Sunday morning to handwrite a prescription for liquid morphine that Dan was able to fill at the 24 hour pharmacy she directed him to. What a gift to watch Mom’s pain-wracked body relax, an easing that allowed her to spend time with Molly and Dan as they each said their goodbyes and then, with a single gentle breath, let go.
I wonder if my first breath was as soul-stirring to my mother as her last breath was to me. Lisa Goich-Andreadis