My dad, who became a chemical dependency counselor as a recovering alcoholic traveling through his own sobriety, used to tell this joke: How many psychologists does it take to change a light bulb? One, but only if it really wants to.
I like to share this joke with friends when they are going through difficult times. The dementia journey is a difficult one. It presents, even forces us into, an opportunity to change if we choose to view it as an opportunity. Not everyone wants their life to change, but dementia abruptly takes that away and we have a choice as to how we respond to the circumstance of losing our loved one to this terrible, and in some ways terrifying, condition. There comes a time when the soft landing is preferable to entrenched denial, at least if we wish things to go as smoothly as possible.
I often hear people expressing their loss without really seeming to be aware that this is what they are talking about. “I just wish my mother could….” “I wish I had my old dad back….” “I miss my wife….” As I was writing it, the working title of my memoir was, Losing Mom, yet my mother was still very much alive. I understood early on that I was living with the loss of my mother, though she was still here, and this was a painful adjustment I had to manage, emotionally, in order to effect the best care I could give her, bringing my best self to her which meant, at some point, as she entered moderate dementia, that I was the one providing. I could no longer rely on my mother to be my mother. There was a shift in roles, and this deepened as I became her Essential Caregiver throughout the Covid pandemic after she was placed.
But even while she was still home I had learned to adapt, to meet my mother where she was, to help as much as I could, while also letting her person be as much as possible and as long as she was safe. It was one of the most difficult dances. She had enough of her memory to function in some ways, and to believe she was functioning normally, while at the same time she was also losing much of her executive function and the ability to carry out the day-to-day tasks of living. She could no longer cook or remember how to use the microwave. She could dress and bathe but was struggling to feed herself and her dog while denying this was true. In some instances, I had to be blunt with her about her condition, but as she waned, and needed more help, she began to trust me, and as she trusted me I was able to learn how to distract her from her many denials or enter into her world of confabulation without negating what she was experiencing as “reality.”
Once, there were cranes doing a mating dance outside the facility where my mother was residing. I was going home on a late afternoon in March and it was still light outside. There was something so poignant about the birds, and I remember feeling mesmerized by them, and also sad. How well I understood, from a metaphorical point of view, the back and forth of their moment as they were creating new life while I was engaged in the back and forth moments of helping my mother live as I knew she was dying.
As a volunteer co-facilitator in a dementia support group, I often mention to caregivers that they are coping with living loss. They are living with the loss of their loved one as their loved one is the loss who is still living. I often suggest things will get better if they can learn how to get out of their way, how not to need their loved one to be who they once were. It is a difficult thing to accept, and it doesn’t mean disappearing, or absenting oneself in any way. It neither implies that a loved one entirely disappears. It means they appear differently. It means reaching out, connecting to them, differently. It means seeing your loved one not just as Mom or Dad or Spouse, et al., but as an autonomous person, separate from us, though still very much connected. It isn’t easy to explain, but I know when I stopped being my mother’s daughter I actually connected to my mother in a more profound way. It was human to human now. Though I was still very much her daughter, and she never stopped recognizing me as such, it helped me tremendously to stop needing Mom to be my mother. This did not prevent moments of Mom’s nurturing of me in ways she would. But that nurturing would generally fall away as Mom deteriorated, and it was unrealistic for me to expect my mother to be there for me. Still, there were gestures of great love, and in many ways, Mom was there for me right up to the day she died. This is the great ambiguity of living such a loss, what Dr. Pauline Boss has termed ambiguous loss.
The point is, getting out of the way as we are catapulted into journeying with our loved one through their dementia actually creates more room to embrace this big change in our lives, to manage it with compassion in the understanding that we are the light bulb for our loved one now, changing, adapting, if we choose, over the course of a journey that is often painful, but also has very bright and love-filled spaces.
What will endure in your memory depends on your adaptation. In March 2022, I would watch with sorrow from my car window the cranes in their mating dance. But on a beautiful summer’s eve the following August, Mom and I would stand at her window, filled with delight, to watch the cranes with their young one, feeding in the grass. It was another metaphorical moment. Life is. In it, through it, we are made to transform.
