Today I comfort myself by re-reading an op-ed I had published in our local newspaper in response to an editorial "Help Also Needed for Caregivers"
The editorial states that "only about one in twenty of the caregivers said they were not doing well." This figure alone is serious enough but it's nowhere near the whole picture.
If I was asked today, I would say I was doing well. I am. I have health problems of my own but they are taking second place in my life. That's where they should be. If you asked me if I was happy, I would say yes.
Then ask me if I live my life with a deep-seated sense of sadness and dismay and I would say yes, because that is true. I currently caregive my mother, who is 94 and blind. There are moments and days of joy, but the sadness is there. I lose a bit of her every day.
I no longer expect my mother to put her arms around me and comfort me if I have a loss – instead I imagine Mom lying on her side in the palm of my hand. I feel her frail body while I hug her and she tucks her head under my chin.
I love Mom to distraction and yet the load of being the repository for her memories is heavy. Being her best friend all the time weighs on me like the weight of the Dorian Gray.
I am overloaded by the need to be alert all the time. I fight to unclench my teeth despite my determination to understand that her brain has lost its elasticity and some of its synapses. I must always be here. She deserves that care.
My friends don't want to hear about my issues with caregiving, home support and loneliness. Balancing my life is my issue, known only to myself. When I get short with Mom, which I do on occasion, the guilt is mine – even when she forgets that it even happened.
This comforts me because it brings me into a large community of family caregivers and I feel less insane.