On January 28th we hosted a seminar led by Sara Shearkhani and Carole Ann Alloway - two family caregivers who care deeply about supporting other caregivers - who shared their insight on the various stages one might experience when becoming a family caregiver. A few themes emerged:
- No one is born a family caregiver, you gradually become one
- The journey of becoming a family caregiver is non-linear, full of uncertainty and you're constantly learning
- If the patient's situation changes, you may experience the stages again
- When you're familiar with the stages ahead, you are better prepared
Sara began by sharing her experience as a family caregiver. She revealed some important points about the fundamental changes that can occur when you assume the role of family caregiver: your relationships may change; your identity may change; and the feelings that arise can be complex and difficult to navigate. Sara also emphasized that no one is born a family caregiver; the transition is not linear but continual, and you're constantly learning. The length of each stage and of journey itself differ from one caregiver to another, as the caregiver experience greatly depends on the patient's diagnosis, the patient's personality, the caregiver's personality, the family's dynamic and socioeconomic status, among other things.
Sara's story is unique because she was a newcomer to Canada when she became a caregiver to her husband. The expectations placed on her were very high, as they had few family members to support them and, at her own admission, Sara though she could 'handle it'. She describes this as 'adjusting to the new normal', and soon after came the 'honeymoon phase', which entails feelings of obligation and guilt. Being a family member she felt obligated to agree to all requests from her husband's medical team and family, and she began to feel guilty when she could not perform as needed. For Sara, feelings of isolation set in not long after.
"There are feelings that you can't share with the patient," Sara explained. In her case, "cancer always outweighs depression or stress." She believes that family caregivers receive little sympathy from the provider community, but this is slowly changing.
The stages of caregiving are as follows:
- Engaging: In this stage, family caregivers are accepting their new life and role. Patients will come first, and it will stay this way for some time. The caregiver may need to redefine his or her role and relationship with the patient. This is referred to as 'adjusting to the new normal.' In this phase caregivers don't realize their limitations, which can be translated into feelings of guilt and burden later in the journey.
- Negotiating: In this stage, family caregivers will begin to negotiate for support from family and friends. This usually leads to conflict in the caregiver's relationships.
- Settling: In this stage, where Sara believes she still resides, family caregivers attempt to find balance between their different roles as caregiver and individual. This can be difficult with competing demands.
The stages are different for each family caregiver, and some may be skipped depending on the patient's condition, but Sara believes that we all move through these stages, each moving at his or her own pace.
Carole Ann Alloway, another family caregiver to her husband, ended the evening by sharing her experience. These last few years Carole Ann has been 'negotiating for her own sanity,' as the burden of providing full-time care on top of household duties, social responsibilities and family obligations has been enormous. Carole Ann's story began much like Sara's; she took on the responsibility of caregiving with pride, but changes to their relationship and to her identity were overwhelming. She described how their husband-wife dynamic changed and how she mourns that loss, and how she cannot ask family or friends to help with caregiving as they believe she's 'handling it'. Like Sara, Carole Ann believes that she's still in the 'settling' phase, but since meeting each other almost one year ago, Sara and Carole Ann have become their own self-advocates.
If you're interested in getting in touch with Sara or Carole Ann, email firstname.lastname@example.org. Stay tuned for future meetings on the experiences of family caregivers!