In her own words, a daughter’s story of learning how even through the fog of dementia, her mother’s love was never lost.
The question was asked quietly by someone who wanted to know, who trusted I wouldn’t scold or make fun of her for not remembering. The person who asked the question was my mother.
This is the woman who raised me alone after my father died, saw me through my terrible teens and my turbulent 20s before becoming a treasured friend in my 30s. But in my 40s things changed. Mom’s world became unfamiliar and frightening to her. Now when I call her each night or visit, I tell her my name and that I’m her daughter. I say this with a smile as if there is nothing unusual in reminding her who I am.
At age 94, my mom’s dementia means bad days when she is irretrievably lost, and must be instructed how to get out of her chair or how to use a fork and spoon. But there are also good days when she exudes affection, delights in being hugged, and loves to feel the warmth of the summer sun on her face.
“Have you ever seen a sky so blue?”
Nothing else exists at that moment but the fine spring day, a brilliant sky and being happy. Some say only young children can live perfectly in the moment, devoid of a past or worries about the future. But on her good days, Mom knows pure pleasure.
“Those trees are so regal!”
Mom has become enamored with two pine trees growing in the side yard, tall enough for her to see with dimming vision. We admire the trees, their beauty, in a shared moment of contentment. But the living-in-the-moment coin has two sides. We can talk about the trees, things she can see without fear of being contradicted, but when I ask if it rained earlier she looks lost. Even in her best moments there is little of her memory she can retrieve from that day or years before. Which puts me in the strange position of telling Mom stories from her own life. She likes the ones about our family vacations “up north,” about fishing, the times she and I caught bigger fish than the know-itall men of the family. I also tell her what a great mother she’s been, about her volunteer work for the church, the school, the food bank, and the local history society.
“Really, I did that?”
Mom listens with her eyes wide, sometimes nodding at a passing recollection. Other times she doesn’t believe I’m talking about her. “Well,” she says, giving me an indulgent sigh, “if you say so.” Over the course of 12 years as Mom’s memories faded, so did her personality, her identity stripped to its basic components. As her identity changed, mine was forced to change, too. I had to become a helper, an advocate, a caregiver—a role reversal that was emotionally jarring.
Some days I could cope, doing whatever was needed to help, to comfort, or just be present. Other days, I couldn’t. Yet, I wasn’t hurt by Mom’s question about children. Saddened, yes, but it’s just another memory lost in a whirlpool of malfunctioning brain chemicals. A muddy swirl of life experiences, some that suddenly wash up out of sequence, like the day Mom “just found out” my dad died 40 years ago.
“Who ordered his gravestone?”
I choose my explanation carefully. What can I say to calm her fears? Will details make her feel worse? Mom taught me to tell the truth, but does the truth really matter anymore?
Comedians joke about how “Alzheimer’s means meeting new people every day.” The hard truth is you can also lose people every day, another first-time experience of life’s worst losses. I hold my mother as she cries, my dad’s death a new wound to her heart.
“How did you know how to find me?”
It’s a day when Mom is convinced she now lives “up north.” I puzzle over this, then finally grasp her logic. Mom barely recognizes her house anymore, looks curiously around the living room, asks the way to the bathroom. Since her home is now unfamiliar, her deduction is she’s living elsewhere. Her memory may be fading, but her mind is still trying to make sense of the world.
Her conclusion could also be wishful thinking. All those family vacations back when Dad was alive, when for two weeks each year we lived in the simplicity of rustic cabins and ate fresh-caught perch and walleyed pike for supper. It was a time and a place when she was happy. Somehow Mom retains impressions, shadows, maybe stored somewhere else in her body, imprinted by powerful emotions or long experience. I know this is true when I walk into the room and Mom smiles. She may not remember my name, but she knows I am someone she loves and someone who loves her. This is memory of the heart.
“I’m so glad you came today!”
Mom is beaming, a day when she radiates affection. This is a long way from the stoic Scandinavian woman she was before the 1970s. That’s when the Lutheran church encouraged parishioners to shake hands and hug, and my mom became a master hugger. Now Mom loves being touched. She gives frail but earnest hugs, reaches out to hold hands. In some ways I feel more openly loved by my mother than ever before.
“It’s all my fault, I’m so sorry.”