*Alison was enjoying early retirement knowing that her differently-abled adult son, Michael, was living independently in his apartment in another city, supporting himself with a job he had held for many years. Then, their comfortable lives changed when Michael was diagnosed with skin cancer and a heart condition.
Alison knew that while her son was highly capable in his established routines, he would not be able to cope with navigating the complexities of treatment his new conditions would require.
She made the difficult decision to uproot herself and move in with Michael to care for his daily needs and advocate for and with him. Alison had been introduced to Michael’s health care providers but didn’t always get invited to voice her concerns as it is patient-centric.
Although their experience with the health care team is overall positive and her role is acknowledged, no one on the health care team has referred her to caregiver supports or asked about her well-being. Alison worries about her son’s future, especially when she is no longer able to support him.*
Family and friend caregivers are partners in care. Yet sometimes it may not feel like that. While our health system has embraced the patient and family-centered health care approach, it will take time to transform how family and friend caregivers are included on the front lines of care.
Finding and using your voice as a partner in care isn’t just for the person being cared for – it’s also for you. Speaking up can be challenging; there are peaks and valleys, and it requires consistent energy.
Yet, it’s critical. You are often managing many aspects of care and know the care recipient better than the care team.
One of the keys to managing a caregiving role is to have a reliable network of formal and informal support, including a trusted team of compassionate, competent, and caring people. The first step is often raising your hand to say you need help to start building your circle of support.
Identifying your needs can help you direct your voice to the right people and resources. Your role is unique to you and that means one size will not fit all. Getting to know what you need and how to find the right supports can go a long way to ensuring your own well-being is prioritized.
Like showing up for an important event or meeting, caregiving has a lot to do with our mindset. Shifting our mindset to acknowledge that our needs are as important as the person we care for is hugely impactful. It won’t make caregiving all roses, but it can positively affect the way we show up in our caregiving role (and sometimes can even result in the positive by-product of self-improvement).
Being organized and prepared leads to good information management, which leads to better care and the ability to make more informed decisions. Preparation varies but can include tracking essential information about the health and well-being of both the person you are caring for and yourself.
These are only a few strategies to increase awareness of your role to health care professionals. We invite you to check out our Caregiver Learning Center and to use our support at FCBC to help you meet your needs and strengthen your caregiving voice.
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Wendy Johnstone is a Gerontologist and a consultant with Family Caregivers of British Columbia in Victoria, BC.