On April 23 we hosted a workshop to explore the impact of illness on the individual, in relationships and in family life. We discussed the complex emotions involved in illness and caregiving, such as loss of identity and changes in family structure, as well as the many positive aspects of caregiving. Our facilitators Arlene Consky and Renee Climans, social workers with Baycrest Hospital, guided the conversation with the goal of offering supportive interventions to attendees.
What changes as a result of illness?
Some attendees shared that they felt thrust into their role of caregiver, and that much of their frustration lies in not knowing what's ahead. In light of this we talked about the importance of reflecting on the ways our relationships change and will change. Equally important is how new roles affect our sense of self - a tapestry of identifications based in various traits and experiences. Holding onto your 'self' while being a family caregiver is crucial to mental and physical health.
When the caregiving role ends, which some attendees believe never really happens, it can be difficult to regain solid footing and return to the interests and responsibilities held prior to a loved one's illness.
What prevents us from identifying as family caregivers?
This can exist in the difference between who we are and who we want to be. Actually becoming a family caregiver is often the hardest part, as the transition can be mired in fear, resistance, and uncertainty about the future.
Careers as caregivers
Family caregivers contribute great economic value to Canada's health care system. That said, many attendees shared stories of how difficult and time consuming it was to find educational resources or financial assistance offered through government programs.
Our fragmented health care system makes it difficult for family caregivers to receive the support they need. From coordinating care to keeping records of prescription medicines, the burden of responsibility weighs heavily on caregivers as many are juggling caregiving responsibilities with family life and a full-time career.
Managing a patient's care can be even more difficult if that patient's behaviour turns aggressive due to acute changes to their personality.
"This is not a role reversal"
One attendee shared that he regularly had to clarify that he was not now playing the role of 'parent' to his ailing parent, as "not even illness can erase or overwrite the rich history of relationship." Being a family caregiver to a parent does not necessitate a role reversal, instead it offers the opportunity to re-contextualize your relationship to suit your current situation. Although it may feel this way, the role of 'caregiver' does not replace other roles that constitute our identity, such as son, daughter, sibling, friend, etc.
It's important that family caregivers separate today's battles from yesterday's decisions. Arlene and Renee shared the idea of the 'encumbered child', where children who assume caregiving responsibilities develop hostility and frustration toward their patient or other siblings. Watching a parent progress through illness is extremely difficult, and everyone in the family will handle it differently. By developing a support system grounded in understanding and compassion, siblings can reach common ground on what their parent needs and who is suitable for each responsibility.
The division of responsibility among siblings is rarely perfectly equal, and it's useful to maintain open lines of communication in order to renegotiate responsibilites as the patient progresses.
Lack of control
While we can't change our situation, we can change our perceptions, behaviours, and boundries. For example:
- Shift your expectations of yourself and others to ones that are more reasonable and attainable
- Recognize your own limits and set boundries
- Care for yourself!
Being mindful of your personal limits and needs can help you anticipate issues before they compound and become unmanageable.
Benefits of caregiving
Many attendees expressed how they feel useful in their role and that it's a source of pride. Caring is also a means to build more meaningful relationships. One attendee shared how her mother's progession with alzheimer's allowed her to feel a 'state of grace' by being present in every moment.
Family caregivers can find support in local support groups, in online forums, and in hearing the stories of others who are navigating a similar experience.
This unique, evidence-based workshop offers supportive interventions to patients and family caregivers. For more information about this workshop, contact Renee Climans at firstname.lastname@example.org.