It Takes the Time That It Takes

It was five days before my first Christmas in Perth, Australia, and our family had begun to arrive the night before. As the rest of household slept, I quickly threw on a skirt and tank top and left to attend the memorial service for one of my study participants, a 57-year old Anglican minister who had died from motor neurone disease (MND). Though I feared I would be late, I could see people milling about in the shaded church courtyard as I pulled up and parked. Walking in, I didn't know anyone except Stuart's wife Grace and the minister, who had stopped in one day for coffee as we had been doing our work creating Stuart's Dignity Therapy transcript.

Because Dignity Therapy involves the creation of a manuscript about important memories and messages that are to be left behind after death, I had heard a lot about Stuart's three children and their families, his parents and in-laws, his brothers and sister, friends, and other important people who appeared in the narrative of Stuart's life, but I felt a stranger at this gathering and headed quickly to the empty seats at the back of the church. Grace came from nowhere and intercepted me in the middle of the aisle, giving me a long hug. Letting her tears flow, she said, “Thank you so much for being here. It means so much to me and it would mean so much to Stuart.” I opened my mouth and nothing came out. I stammered under the weight of the loss, the memories, Grace's gratitude, and my inexperience. This was the first memorial service I attended where my relationship was professional, and I had hoped I would have something more comforting and eloquent to offer than a gaping mouth but I didn't, and it was okay.

I had first met Stuart Jordan in July. He had telephoned the day before I left for vacation and, sounding as though his tongue was three times too big for his mouth, asked if he and his wife could take part in my PhD research on Dignity Therapy with people who have motor neurone disease. I explained that I was going on vacation the next day, and we made an appointment for two days after my return. I hastily sent a confirmation letter to “Stuart Jones,” as I had misunderstood his name to be. Within hours, I was on a plane to visit family and friends in California, a place I had left just nine months earlier to pursue this research and a place where motor neuron disease is known as amyotrophic lateral sclerosis or Lou Gehrig's disease.

My first day back in Perth, jet-lagged and dressed in jeans and a t-shirt, I received a call from Stuart's wife. “Where are you?” she asked. “We have an appointment.” I pulled up the confirmation letter on my computer and saw I had written the wrong date. I also noticed a glaring typo in my congratulations regarding the news of their first grandchild. “So many mistakes. How are they ever going to put their trust in me? ” I thought to myself. “I made a mistake with my calendar, but can I come now?” I asked Grace apologetically.

Our first meeting lasted over an hour. Their small house located across from a train station was neat and tidy. Jolly, the dog, greeted me at the door. A stereo and shelves housing a large record collection dominated the small living room. Grace offered me a cappuccino from an impressive steaming machine in the kitchen, and Stuart had an espresso. Stuart was firmly in the grip of MND. He could not use his left hand. Eating, standing, and walking were an extraordinary effort. He slurred his words and it was very difficult to understand him, but he easily forgave my mistakes and imperfections and opened himself up. When I asked him to rate as a problem “Feeling like I am no longer who I was,” he burst out crying.

Stuart and I met six more times over the next ten weeks and also emailed his document back and forth between us. During this time his health quickly declined. He had his PEG feeding tube inserted. He and Grace went on a trip, which turned out to be a disaster when he was ill the entire time and required several emergency room admissions. He began using a VPAP breathing machine to improve his oxygen levels. He was twice admitted and then released from the palliative care unit at a local hospital. As time went on, I began to wonder if telling his story was helping to keep him alive. Each time I thought we were done, he wanted to include more text or more photos. When I thought we couldn't possibly add any more, he came up with the idea for a “timeline,” which meant we had more work to do.

While working with Stuart, I often wondered if I was doing Dignity Therapy wrong. These thoughts did not occur to me as often with other participants, who more easily stayed within the flexible boundaries of the study protocol and the Dignity Therapy manual. Mostly, I was concerned because I was spending more time with Stuart than I had with other study participants, and it was taking longer than the others to finish. When I asked the creator of Dignity Therapy, Dr. Harvey Max Chochinov, about my concern in one of our supervisory phone calls, he acknowledged it was taking longer than usual, but stressed the importance of providing psychosocial support to people with terminal illness. Finally, in his sage and experienced way, he made my concerns seem silly when he said simply, “It takes the time that it takes!”

But I had other concerns as well. Were Stuart and Grace becoming too comfortable with me, and was I letting them overstep therapist/researcher boundaries? During one visit to the palliative care unit to complete the captions on his photographs, Stuart asked for a hug before I left. During a visit at their home, Grace noticed I needed a haircut and the next thing I knew she had dialled a hair salon and was handing me the phone. Even the topics Stuart discussed in our interviews were a challenge for me. The interviews were dominated by Stuart reflecting on his relationship with God, and I often felt out of my depth guiding a deeply religious man through an interview that addressed issues of spirituality at the end of life.

About a month after we had completed our work and the study, Grace requested a visit from me. After a short chat with both of them, Grace, who was under an amazing amount of stress and who was having difficulty coping, asked if I would stay with Stuart while she ran an errand. I sat with Stuart while he dozed. His forehead was pulled tight and he seemed turned inward, as if having to concentrate on each laborious breath. I asked if he wanted to try guided imagery to help him relax and he chose a scenario that took place at a beach. He urinated into his bedside urinal twice and I emptied and cleaned it. After forty minutes, Grace returned and I quietly left. It was the last time I was to see Stuart.

Grace emailed six weeks later “just letting you know Stuart passed away yesterday morning around 8:30 a.m.…How we love the memories of Stuart that you have left behind for us. Thank you. Love, Grace.”

When I reflect on Stuart, I recall my questions and blunders and marvel at how it all added up to a therapeutic relationship at the end of Stuart's life that was supportive and meaningful for Stuart and his family, and a research experience that was rich. For a psychotherapist who works from a person-centered and existential frame of reference, I realize that working with Stuart was one of my best achievements thus far, rather than fraught with error. As Irvin Yalom advises new therapists, “Therapy should not be theory-driven but relationship-driven.” ¹ My relationship with Grace and Stuart was real, supportive, and empathic. Stuart mattered to me, and I am the better woman for it.