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A change in the caretaker role

Mrs. Chantal LeBlanc

Mrs. Chantal LeBlanc has a Bachelor’s degree in Applied Social Sciences from Concordia University as well as a Bachelor’s degree in Social Work from McGill University. She received a Master’s degree in Social Work from McGill University in 2009. Mrs. LeBlanc has been a professional social worker for 22 years, including 3 years in a clinical supervisory role. Her clinical practice has encompassed the areas of home care for elderly people as well as adults with physical and intellectual impairments. For the past 6 years, she has practiced in the field of oncology at the McGill University Health Centre, Montreal.

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Ms. Bonnie Tompkins

Ms. Bonnie Tompkins was the sole caregiver to her late partner, who passed away from cancer in May 2014. She recently graduated in public health from Brock University and now works with her local hospice to help increase access to needed assistance for patient and their caregivers. She is especially interested in caregivers, as she suffered caregiver burnout. Her passion is to use her late partner’s and her own experiences to help people in similar situations, hopefully lessening their stress.

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When your care recipient moves through the cancer care trajectory into the survivorship phase, the roles and demands of caregiving will change. Visits to the hospital will be less frequent, and there may be less access to the healthcare system after active treatment.

Your care recipient may still have slow or non-resolving symptoms and side effects, as well as residual limitations in physical function. Transition care can be fragmented leaving you feeling more isolated in dealing with residual symptoms, late effects and possible disability.

Caregiver tasks may shift from active treatment to monitoring and surveillance of late effects, recurrence and/or disease progression. As a caregiver, you may have to coordinate care by making and keeping medical appointments. You may have fears about recurrence, the future and the lack of contact with your oncology team. You may have centred your life activities around providing care, adjusting your schedule and sometimes relinquishing valued personal activities. When treatment ends, it may be difficult to return to these activities. Some social relationships (friends, social support and opportunities) may no longer exist or have moved on. Reintegration challenges may involve many dimensions of your life including resuming social relationships, establishing communication patterns, dealing with problems involving family and children, as well as financial and employment difficulties. You may have to reorganize and re-prioritize to compensate for the longer-term impact that cancer treatment has had on your family. Again, transition periods can generate additional stress.

You may want to return to “normal” and resume your previous roles. You may have to redefine the “new normal.” This transition may be stressful but it is also an opportunity for growth. You may have neglected your own health needs. This is a good time to resume screening for age and gender-appropriate conditions, and managing health concerns. You may resume healthier lifestyle activities such as exercise regimens or better diets. If you are employed, you may want to renew attention to your job and re-establish relationships with co-workers. It may be difficult to withdraw from your caregiving role emotionally, particularly if you are very invested or perhaps over solicited in this role. Spousal caregivers who have adapted to new roles and responsibilities like financial and household management may struggle to relinquish them when needed, contributing to role conflicts. Adult children and non-spousal younger caregivers may struggle with competing demands like being in school or being a parent of young children while offering continued care to the cancer care recipient.

Communication issues may arise after active treatment. You may need to be more assertive or find new ways of communicating your needs as well as your limits. Seek out educational sessions or web-based toolkits to help foster understanding of survivorship issues and facilitate care management through communication.

Loss of employment for the caregiver and/or the care recipient can pose problems that continue into the early survivorship phase. Financial problems may arise if you have used some of your savings or have stopped working during treatment. Your care recipient may have also lost their primary work income contributing to additional financial strain.

Source: Given, Sherwood and Given (2011) Support for Caregivers of Cancer Patients: Transition After Active Treatment.

You may want to read tips on fighting fatigue/tiredness from the BC Cancer Agency.

Learn about possible job accommodations for caregivers.