March 7, 2016, by Hannele Kivinen, Caregiver Exchange
They also didn’t see eye to eye when it came to dealing with his illness, which only served to widen the distance growing between them. By the time he entered into the recovery phase several years later, they had lost their identity as a couple. “It was very lonely,” she admits. “We used to do everything together, but the cancer changed our entire marriage.”
Sara wanted to connect with other caregivers in similar situations, and soon she learned about the notion of “Patient Engagement” and started volunteering as a patient advisor for different healthcare organizations. It was through this endeavour that Sara came into contact with PaCER (Patient and Community Engagement Research). PaCER is a free Canadian initiative from the University of Calgary that trains patients and caregivers to become researchers for the health care system. Eager to return to her dream of a graduate degree, Sara started a PaCER chapter in Toronto and recruited three patients to join her research team. This past February, they presented a poster project at a conference in Vancouver, titled “Uncovering the Experience of Patients and Caregivers as Couples.”
“When we started doing the research, we found that it was actually very common for marriages or common-law unions to become strained under the patient/caregiver dynamic,” says Sara. During a time of illness, couples are dealing with a lot more stress and a lot less security — which in turn can lead to a loss of romance and intimacy. They may disagree on how to handle certain situations, or have trouble adapting to their new roles. They also do not receive any help from their health care team, as this part of journey is hidden from their eyes. As a result, the relationship can break down.
“When it happened to me, I felt very alone,” notes Sara, “No one in the health care system told me that this might happen, so I just assumed that the troubles in my marriage were my own fault. At the time, I didn’t know how normal it is for couples to struggle.”
It is Sara’s hope that health care professionals will start making patient/caregiver spousal support part of the conversation. “Whenever a diagnosis happens, I think that couples have the right to know that their relationship may be facing some difficult changes,” she says. “If they can be prepared for what’s to come, they have a much better change of getting through it — together.”
In addition to her work with Patients Canada and PaCER, Sara Shearkhani is the co-founder of a caregiver advocacy group called The Family Caregiver Voice. She has also published an article in The Globe and Mail describing her experience as a spousal caregiver. Sara was recently named one of Change Foundation’s 20 Faces of Change.