What follows is taken from my memoir, Watching for Dragonflies: A Caregiver’s Transformative Journey. I was learning how to be a caregiver for my husband, Michael, who experienced inexplicable mood swings as he wrestled with multiple sclerosis. Perhaps other caregivers face similar situations and questions as they struggle to learn their new roles.
I’m surprised that Michael is often irritated and angry, most often with me. He is sometimes so angry that I’m afraid he will turn against me. I struggle to distinguish between what is acceptable and what is abusive. Because Michael has MS, am I supposed to take his verbal attacks in stride? People are always telling me to take care of myself or else I won’t be able to take care of Michael. Does “taking care of myself” mean drawing clearer boundaries and letting him know what actions I will not accept? What does “will not accept” mean? Would I ever leave him? How do I draw boundaries, and how do I enforce them?
Sometimes I feel exploited and unappreciated. I wonder just what he expects me to do and what I should expect from him in return. Other times, I reproach myself for not loving unconditionally. I feel I need to be there for him no matter what, and that I’m supposed to do this selflessly. I often feel I’m at war with myself.
Being Michael’s caregiver is new for me, and being someone who needs care is new for Michael. I guess it’s going to take some time for us both to adjust to these new roles. Michael will need to give up some control—of his situation and of me—in order to let me do things for him that he can no longer do. I know this will be hard for him, but we will need to learn to work together if we are to meet the challenges of this disease. I hope we can.
And, eventually, we did.