At MSK, Caregivers are Patients, Too

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Memorial Sloan Kettering Cancer Center caregiver Peter

Peter took part in a clinical trial exclusively for cancer caregivers at Memorial Sloan Kettering Cancer Center. “A lot of times, people think that patients and caregivers have a uniform experience," he says, holding a photo of his husband, Jeff. "But everyone experiences a diagnosis so differently.”

After three years of marriage and more than a decade together, Peter and Jeff’s commitment to each other “in sickness and in health” faced the ultimate test.

Jeff, age 56, was diagnosed with the deadliest of all brain tumors, a glioblastoma, in the fall of 2018. Peter quickly assumed the role of Jeff’s primary caregiver, joining more than 5 million other people in the US caring for a loved one, according to statistics from the National Alliance for Caregiving and AARP.

“From the research I did, I knew that better caregiving led to better patient outcomes, which was important given how difficult the diagnosis was,” Peter says. At 36, he was 13 years younger than the average American caregiver.

When the couple came to Memorial Sloan Kettering Cancer Center for treatment, Jeff wasn’t the only one who needed care. Faced with his spouse’s terminal diagnosis, Peter realized he needed support, too. He received that support from MSK psychologist Allison Applebaum, the founder and director of MSK’s Caregivers Clinic.

Established in 2011, MSK’s Caregivers Clinic is the first of its kind at a National Cancer Institute–designated center. It offers individual, family, and group counseling to all caregivers at all stages of the cancer journey.

To evaluate and provide the very best kind of support, MSK runs clinical trials exclusively for caregivers. Peter took part in the study “Meaning-Centered Psychotherapy for Cancer Caregivers (MCP-C),” a seven-week, structured program meant to help caregivers connect to a sense of meaning and purpose despite the extraordinary challenges of caregiving. Peter says he was grateful for the opportunity.

“A lot of times, people think that patients and caregivers have a uniform experience, but everyone experiences a diagnosis so differently,” says Peter. “Jeff always felt he would be part of the 5% that survive more than five years. I was on the other end of the spectrum. Meaning-Centered Psychotherapy gave us a shared language and a framework for hard conversations.”

Caregiver Counseling Services
Our counselors provide expert therapy and support to help meet the unique needs of caregivers of MSK patients.

A Desperate Need

Dr. Applebaum says the idea for a Caregivers Clinic came to her during her fellowship at MSK from the patients themselves who were worried about their caregivers.

“Each time I would accompany a patient down the hall to a session, the chitchat we’d engage in would center on their loved one in the waiting room,” Dr. Applebaum says. “One of the most frequent and prominent themes that would emerge in sessions was concern about how that loved one was coping.”

Dr. Applebaum was stunned by how few resources she saw for cancer caregivers nationally. The quest for specialized support was like “climbing Mount Everest,” she says. “I realized they desperately needed their own services.”

In addition to a dedicated clinic, MSK also offers support through the Individual & Family Therapy Clinic as well as the Bereavement Clinic. Most insurances cover the cost of these services.

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What Helped Peter and Jeff

The clinical trial was so valuable to Peter that when it ended, he encouraged Jeff to seek out the same type of support with Dr. Applebaum. After doing a similar course of MCP with Jeff, Dr. Applebaum saw both Peter and Jeff for counseling together. They learned strategies to make the most of their time together and to maintain their bond.

“Remaining connected to the relationship that existed with the person with cancer long before the diagnosis can serve to protect the relationship, and even strengthen it,” Dr. Applebaum says.

Staying in the moment helped them cope. The couple learned how to accept the sadness, anger, fear, and grief when those feelings arose. They redefined how to be hopeful in the face of heartbreak.

“Hope, for us, was getting from point A to point B, like one MRI to the next,” Peter says. “A terminal diagnosis is very much focused on the final destination. The more that we let that go, the more we were able to focus on staying present.”

Remaining connected to the relationship that existed with the person with cancer long before the diagnosis can serve to protect the relationship, and even strengthen it.
Allison J. Applebaum psychologist
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Peter’s New Mission

Jeff passed away in June 2020. Peter continued seeing Dr. Applebaum to support him through his grief. They discussed Jeff’s legacy and how Peter wanted to pay homage to him. Reflecting on the care that they both received at MSK, Peter realized he wanted to become an oncology nurse.

“Jeff and I really credit the excellent patient and caregiver experience we got through MSK for inspiring us to find meaning out of all of this, including figuring out together, as a couple, what I would do after Jeff died,” he says. Peter graduates from nursing school in 2022.

“We had such incredible providers who were patient-centered,” he adds. “I want to be that for other people.”

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