A heartfelt reflection on how the devastating disease is affecting the writer's mother and family
I hate you. I think you suck. You have changed my mother's life forever. I wish I knew how to stop you or throw you off her trail, but I can't. Everything I think of, everything I try, you seem to outsmart.
You took a beautiful, independent, light of a woman and turned her into someone whose world has been shrunken to one room. How you managed to remove that light in her eyes I'll never know. What I do know is that you have changed all of our lives forever.
My children have not only lost that fun, attentive, insightful grandparent, but they have lost their fun, attentive, insightful mother as well because I can't seem to get out of my own way.
I am consumed with worry and fear and guilt and sadness and anger over watching my mother slip away, all the while trying to stay involved in my children's lives. I am firmly planted in "the sandwich".
Our family life has changed in ways that are subtle and jarring at the same time, and I do my best to try and find the silver lining.
At a time in our lives when couples are supposed to be reconnecting and doing things together, all I can do is wonder where we will be at the end of this. I hope that the time spent eating dinner together and the 10 minutes at the end of the night is enough to sustain us until my caregiving is over.
Our family life has changed in ways that are subtle and jarring at the same time, and I do my best to try and find the silver lining. Trying to find the thing that brings everyone peace, for at least a moment.
Hoping that Mom has a "good" day, a day where she is happy. A day where she is not tortured by delusions or fear or wondering what is happening to her mind, to her body.
The silver lining of "at least:" at least my children learn about what's important in life...at least my mother knows she is loved...at least we had dinner together…at least my children and husband know they are loved…at least we can still laugh.
And it's those things that I try desperately to hang onto and think about when I can't sleep, when I can't settle myself, when I feel like I could run 100 miles and yet at the same time feel like I can't walk up the stairs.
You, dementia, are an insidious disease, and I hope to God someday, someone, finds a way to cure you or better yet, to wipe you out altogether so that no one, not another person, not another family, has to endure this.
But in the meantime, at least we're all together.
Still hating you,
Rosanne Corcoran, of Collegeville, Penn., is a primary, in-home, "sandwich" caregiver. She has been caring for her mother, who has dementia, in her family’s home for almost five years. Rosanne is a Daughterhood Circle Leader, and host of Daughterhood: The Podcast, both focused on the challenges of caregiving. “I am part of the generation that is trying desperately to live their lives while taking care of everyone around them,” she says. “For me, writing this was an exhale.”