My soulmate Telk died on October 3, 2015, at age 63. We were married for 14 years, in each other’s lives for 24. We did not find each other until later in life; we got married at 50 years old and counted on having at least 25 or even 30 years together. In our late fifties, we moved from San Francisco to Oahu, overjoyed with this next chapter in our lives. We found a marvelous home with a breathtaking view of Kaneohe Bay, had a housewarming party, and invited everyone on the street as well as friends and colleagues. It was a golden moment in time that was all too brief—a few months later, my husband developed serious, chronic pain in his lower back.
It turned out that he needed a hip replacement. The surgery went well. Days later, however, he developed a fever and the doctors tried to determine the source of the infection. In addition to the infection, my husband was wrestling with post-traumatic stress disorder triggered by his fever and past bouts with serious illnesses. I was just focused on making sure he was getting the best care possible in the hospital so he healed and stayed alive. I learned how to navigate all the doctors and nurses while doing my best to keep my soulmate as calm and coherent as possible.
I ate, slept, and kept family and friends informed. “How can we help?” they asked. I told everyone I was fine, and was very convincing. Everyone who knew me was impressed with my self-sufficiency as a caregiver. I was a “rock.” I felt I had to appear optimistic and calm for everyone, even my close friends. I didn’t have a safe space with a community of people in which I could express my anxiety and fears.
After Telk returned home and healed physically, PTSD required our full attention and was the biggest challenge for me as a caregiver. I had no idea what it meant to live with it. Despite having friends and a therapist for support and guidance, I often felt completely lost and overwhelmed. I was in a very high-stress job, and when I came home, I was never sure what part of my soulmate I would find. Then, he began to have ongoing, undiagnosable stomach and digestive problems that kept receding then returning. He went to the hospital for surgery on an obstructed bowel and returned home with the diagnosis of a rare, terminal gastric cancer with a six-month to three-year prognosis.
I was unprepared as a caregiver; unprepared for the enormity of the emotional impact on us, family and friends, the amount of detail I had to track, and the fundamental way it would change our lives. I took leave from my job and then retired. My crisis-management, multitasking/problem-solving skills kicked in; I absorbed as much information as I could. I was doing all I could to create a loving, safe, caring world for him with the hope that we would grow closer.
Everyone kept asking what they could do to help, but I felt as if I had it all under control. I didn’t even know what to ask for. Family and friends came to visit, which gave me a little freedom, but it also created extra work for me. Even with visitors, I did not feel like I could leave Telk for more than a few hours at a time.
He responded well to the first round of chemotherapy. The quality of our relationship, nevertheless, declined. We discovered the Commonweal Cancer Help Program, and my husband insisted that I go with him. At the beginning of the program, he told everyone that he was attending to save his marriage. It was a deeply healing, spiritually awakening experience for us and brought hope and some joy back into our lives for a couple months.
I have often thought about what it would have been like for me had there been a healing circle for caregivers during our time at the Cancer Help Program. My spiritual awakening and the healing of some familial wounds were life-altering and served as an important foundation for what lay ahead. However, I was never truly able to explore or give voice to my own private concerns, anxieties, and fears about the loss of my soulmate. I was deeply grateful for everything I learned about cancer because I became a better support for my husband. What I also needed was more emotional support for myself.
During the last six months of Telk’s life, we traveled a bit to see family and friends, but my soulmate had retreated into himself. I was overwhelmed, lost, hurt, occasionally angry, and had no support beyond my therapist and friends; no group of fellow caregivers to talk to. I gave myself permission to visit family and friends, which my beloved wholeheartedly supported. As the time for my trip approached, his health began to decline. The day before the trip, we learned that his cancer had returned. I was going to cancel the trip, but he was upset, angry, and so insistent that I get on the plane that I realized I had to follow his wishes.
He died before I returned home. I was distraught. But, when I saw him before he was cremated, he had the most glorious smile on his face that radiated across the room at me, so full of peace and joy. I smiled and laughed and, at that moment, I was reminded that we were soulmates forever. He wanted to die alone, and I respected his wishes. These were remarkable acts of our love for each other. Getting on the plane was one of the hardest things I have ever had to do in my life and a profound lesson about caregiving.
The companion to my deep sorrow is the gratitude I feel for every moment we had together.
I always considered myself a good caregiver because I could do it all and not ask for help. It was a source of pride, and I did not want to complicate other people’s lives. As part of my role, I also felt that it was a necessity to minimize my needs; my soulmate was facing death, not me, so I could not justify making my needs a priority. There were times during his final six months when I tried to talk about my needs or tried to have conversations about what we were both facing, but my husband’s responses often hurt me so deeply that I retreated even more. One of the consequences was that I occasionally ended up behaving in ways I regretted.
First and foremost, a healing circle would have been a small, safe community where I would not have felt so alone and isolated. I had support from friends and family, but it is significantly different if you are with others who share a similar experience. I have learned about this kind of support from a grief group I attend regularly. In a healing circle, I would have felt the freedom to talk about my journey with my soulmate’s illness. I’m sure I would have learned from others’ experiences, particularly about asking for help. Stepping outside my day-to-day experience would also have given me room to breathe and reflect on myself.
I would like to seriously consider starting a healing circle for caregivers on Oahu, but I am not sure how to begin. I have contacts in my community that could be sources for participants. I would like to start with a small group. How do you choose people to invite? I am familiar with the basic structure and process used for healing circles, but how are healing circles for caregivers different than those for people with cancer? What are the unique challenges when facilitating a group of caregivers?