The Family Caregiver

The Family Caregiver

by Dominique Castro

I have been providing care to my Mother over the last 9 years. During the first two years of this assumptive role I experienced the phenomenon known as “compassion fatigue”... which is the much darker side of burnout. Compassion fatigue is the place beyond burnout, a place so dark that light cannot penetrate it’s walls. Caregivers often wind up here because we find ourselves without help from other family members and the government. The role of the family caregiver is unrecognized as we are classified as “informal support”. Informal support?? There is nothing informal about what we do. We are forgotten superheroes and humble to a fault, because you’ll never hear us demand respect….but it is time that we start demanding more help. For the first two years of caring for my Mother, I averaged about 60 hours a week. It was constant and unyielding. Though I never complained, that was at least until I completely broke down one day. I couldn't continue anymore, had I continued, I wouldn't be here to write this story. So my Mother was faced with having to pay for caregiving out of pocket. I would have helped financially, but having been her caregiver for two years, I had no money saved up. My boyfriend whom I had been living with was unable to help either, as he was supporting me and the rest of the household expenses. No one in our family helped her with the expense of her caregiving needs. Not her parents who lived a stone's throw away, not my brother, not her brothers or sister. No one, except me, stepped up. So when I could no longer do it, I felt incredible guilt. I still visited with her every day, but I always felt like it wasn't enough. That I should have just powered through my distress. I'm glad I didn't though. I'm glad I saved myself from drowning. Reflecting on it, I feel a great sadness for the caregivers who don't have the freedom to stop, who don't have the freedom to put themselves first. Today my mother lives with me and my fiancé. She's been living with us for the past 5 years. Luckily, she was finally able to get caregiver coverage through her insurance and now someone comes for 4 hours a day Monday through Friday. This has helped restore balance in my life, helping me be more capable of providing care to her when the caregiver isn't here. I'm one of the lucky ones, but there are so many caregivers who are broken and have to keep going because they don't have a choice. You see, the survival of the person we care for depends upon our own, and that is a lot to put on any person. Whether you're caring for a parent or a child.

For me, in regards to mental health treatment, I've been seeing a psychiatrist for 5 years now and I've been taking medication to help with my own mental health issues. Having a psychiatrist has helped tremendously.

I reached out to ADAA with my story about caregiving because caregivers never speak up about how they're struggling and I wanted them to know they aren't alone and they aren't a failure for being unable to carry the caregiving responsibilities solely by themselves. 

Family caregivers need their state's support, because most of us are alone, without support from family. We matter just as much as the person we're providing care to. Please hear us, please see us, please help us.

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