I am a mom, a wife, an athlete, a daughter, a healthcare provider, a caregiver, and an advocate. In my professional life, I have a passion for health care policy and have worked in roles ranging from mental health clinician, to homecare to leadership. My career has given me extensive exposure into the importance of family caregivers.
As a child to a family member in and out of the hospital, I couldn’t understand the reason why the health care system was so convoluted. I did not have the words but knew that it felt disjointed. Now as an adult and healthcare professional, I still sometimes am shocked at how difficult the system can be to navigate. In these moments of shock, I feel blessed to have at least some understanding. I am very appreciative that the knowledge I have of our healthcare system has been able to help me as a caregiver. My professional life has exposed me to many resources that have drastically improved the care.
When interacting with the care team, I often am actively trying to turn off my professional brain and be a family member in the moment. I struggle to know what I should and shouldn’t suggest. Understanding where my voice should be heard and how much to advocate is the most difficult part of my caregiving experience. I know professionally and personally that there is a place on the team for family, but as a family member, I don’t always get the impression that the feeling is mutual. I rely on really good friends who share similar experiences for support. When I doubt myself, I am encouraged to speak up and ask for a seat at the table with the team. I am learning to use my voice as a healthcare professional to speak up and help guide my family member’s care. I know my family member would advocate for me if she could, so I continue to advocate for her.
One piece of wisdom I would love to share is this: ask your loved one’s health care providers questions, no matter how uncomfortable you may feel. Sometimes you may not feel invited to the table by the team, but if your loved one wants you there, get to the meeting. Your knowledge can add to the care.