We are very pleased to publish this guest post from Leah Oswanski, MA, LPC, MT-BC about her outpatient work with caregivers of individuals with cancer. Leah offers us insight into her clinical practice in addition to the personal and professional processes that informed the work. It is a powerful reflection on that intersection of personal and professional experiences that are unavoidable and, when utilized mindfully, deeply enrich the therapeutic experience for both therapist and client. Please feel free to share any thoughts or reflections of your own in the comments section, and thank you as always for being a part of this community.
Her beautiful hair that glimmered in the light of the sun. Her tender gaze as she held her babies close. Her face filled with sweet joy when she was with him- both when love was young and new and years later with children, mortgages, careers, and life…. Her magnetic smile in her professional photos Her children’s arms, wound tightly around her once healthy body She was my age. We liked the same music; we used her music in our sessions. Our kids are the same age. It appears I would have wanted her as my friend if things were different. But I have only seen pictures. I never actually met her.
Some context: although I identify as a music therapist, I have my MA in counseling and am also a licensed professional counselor (LPC) in New Jersey. I began my music therapy career in in-home hospice, but have spent the last 14 years working in oncology, both inpatient and outpatient. My outpatient music therapy practice is structured more similarly to private practice psychotherapy sessions in that I book patients/caregivers for hour long sessions, and I may follow them weekly for a few months, up to years at a time depending on treatment circumstances. I often follow caregivers for another 8 (average) months after a patient dies for grief work.
It is familiar territory for to me to hold the space (which is for me, staying fully engaged and present without judgment) for a person who is dying or suffering. It’s not fun, contrary to what people say when they see me in an elevator with my guitar (sigh!), but I view it as an incredible honor and divinely connected experience. But the holding space is not just for those who are dying. It’s also for those caregivers who are struggling to live through the dying process of their loved one, which I liken to trying to put together a glass that is shattered into a million pieces while blindfolded. It’s often confusing, disorienting, and painful.
Sometimes I have found the work with caregivers to be more difficult than with patients because of the continuous experience of pain that takes place from diagnosis to caregiving to death and beyond. I have noticed that with the dying person I gain some comfort in knowing that there is an endpoint to the suffering, which probably helps me to psychically organize the constant exposure to people who are in distress. To be clear, a person who is dying or has metastatic cancer does not always suffer (nor suffer in the same way), but in my years as a music therapist in oncology it is very rare to see someone not suffer in some way.
I have had many referrals in the past 14 years of practice that were for caregivers, and often generated by the patients themselves. These outpatient referrals usually manifest by a patient who calls me and says “my spouse, friend, mother, etc.” NEEDS to see you. Obviously, due to the stressful nature of caregiving in the context of oncology, this isn’t shocking and the patient is usually on target when describing the level of distress that their loved one is experiencing. As Williams and McCorkle (2011) pointed out, the detrimental nature, including increased physical and mental morbidity, of assuming the caregiver role in oncology during the palliative, hospice, and bereavement phases of treatment, often leaves caregivers with a psychological burden that actually surpasses that of the critically ill patient.
Most of the time patients who refer their family members have metastatic disease and are receiving some form of palliative treatment. The patients may or may not be engaging in their own therapy, and they may or may not be at a place where they can process their impending death. With these types of phone calls, the first thing I do is tell the patient that the caregiver needs to call or email me directly so that I can assess THEIR willingness to be referred to music therapy. Surprisingly, 8 out of 10 times the caregiver does call me. Our outpatient psychosocial oncology team works from an empowerment model with both the caregivers and patients so that a foundation of control and personal power is laid from the beginning. Unless a patient/caregiver is in an acute crisis, we generally await the person to make the initial contact; giving them the choice of when/where/how therapy will happen on their own terms.
What has been a unique experience in working with caregivers for me is that I have worked extensively with many without ever meeting the patient in treatment. Several of these caregivers have been men my age who all had small children of a similar age to mine. I never actually met their spouses at any point, who were also my age, and all of the women had metastatic disease and died while their spouses were in music therapy. Generally the men arrived to my office with an ambivalent attitude and with a look of “I’m fine- I don’t know why I am really here” (even though they made the appointment) on their faces. My first question when they arrive is always “So, …your wife thinks you need to be here- do YOU feel you need to be here?” After a little humor, this initial conversation usually opened the floodgates of grief, pain, anguish, stress and suffering that is going on under the surface of “I’m fine.”
The space expands quickly which I attribute to the music cutting through the understandably functional facade. Once trust is established we are able to meet in the sorrow. And so the work begins. What manifests is the processing of loss and impending loss on so many levels- losing their best friend, their parenting partner, their lover, and their identity in many ways. In music therapy there was safety to explore the (often taboo) topics that so many caregiving spouses/partners feel including anger, panic/confusion, and mourning for the loss of sexual and physical intimacy. I constantly strive to maintain an open presence free of judgment (which I call a “safe space”) for all of my clients, but creating a safe space in these cases is critical to enable exploration because of the many spoken and unspoken societal expectations of how a spouse is supposed to feel and act when their beloved has a terminal form of cancer.
No matter how many times I am in session with any given patient/caregiver, their willingness to engage in music therapy with me and allow me to bear witness to such a raw and profound moment in their lives is still always striking to me. With these men in particular, the experience was heightened with the additional layer of our similar ages and life circumstances. We sometimes processed my being a painful reflection of what was “supposed to be if things were different.” My belly, round with pregnancy, a reminder of future babies that would not be born to their family. My long hair a reminder of her hair before she had cancer which she was never able to regrow after chemotherapy. There was such openness to engage, process and acknowledge those painful reflections even with the existential crisis that was unfolding before them. Music became the safe container to open and explore intense aspects of the experience, but also had the structure to allow an ending, which was so important for reentry to the “real world” after a session.
I occasionally found myself post-session thinking about their spouses and weaving stories and images about their lives from our discussions. It felt sometimes strange that their direct voices were absent from our musical experiences and conversations. I would also stare long and hard at all the photographs and noticed that I felt an intense sense of obligation on many levels to these women. That was a new experience for me. I always feel an obligation to provide quality music therapy services to anyone I see, but this obligation was different considering it was to someone I had never met and I wasn’t seeing for therapy. All of these women had “sent” their spouses to me for support and I found myself wanting to honor that referral not just as a music therapist but also as a fellow woman, mother, and wife. This desire to “honor” manifested in a number of ways and had me very aware of how I engaged – emotionally, musically, and even physically (i.e., hugs or back patting) – with those clients. Of course, I bring all of these pieces of myself to each and every session I have with all of my clients, but this felt different to me.
Although I have always engaged in regular supervision because I think it is paramount to my work and growth as a therapist, with these cases I committed to weekly supervision to process my feelings, experiences, and to continuously explore the transference/countertransference issues that were always present. These therapeutic relationships seemed “messier” than usual, and I often felt exhausted after both the sessions and supervisions on a physical, psychological, and spiritual level. Along with supervision, self-care routines and rituals became critical for me to not take these cases home with me at the end of the day.
Working in oncology, predominantly with metastatic patients, is a constant series of bearing witness to not only my clients/patients existential crises, but also mini ones of my own. I believe it is the inherent nature of the work. A quote that often comes to my mind is:
When we finally know we are dying, and all other sentient beings are dying with us, we start to have a burning, almost heartbreaking sense of the fragility and preciousness of each moment and each being, and from this can grow a deep, clear, limitless compassion for all beings.
I am always learning so much about myself and am grateful for each moment that I can deepen my practice of music therapy.
Have you had the unique experience of seeing caregiver, and never actually meeting the person being treated or dying? What was that like for you?
Williams A.L. & McCorkle, R. (2011). Cancer family caregivers during the palliative, hospice, and bereavement phases: a review of the descriptive psychosocial literature. Palliative and Supportive Care, 9(3), 315-25.