Love Flows Both Ways with Dementia

Does an individual living with dementia reciprocate love?

Author Samuel Decker Thomson wrote, “Love must flow in both directions for it to be worth chasing, otherwise you are only running toward a tsunami of your own making.” The author was, perhaps, writing this as advice about young love.

But I found it helpful in thinking about interactions with a loved one experiencing dementia. Love had to flow both directions, or one would certainly be taken under by the prevailing waves.

My mother experienced dementia for ten years and my love for her had sometimes coursed—or washed over her like a tidal wave—in the way of the little things I had offered, a fuzzy blanket for her to curl her hands around or the offering of slices of a juicy peach.

But how would I find the love that flowed from her back to me?

One afternoon, I found her seated in the corner of an alcove surrounded by garden décor, fast asleep—her usual predilection following a heavier lunchtime meal of fish sticks and sweet potatoes. Clouds gathered outside the window, but the glare threw a light on her forehead and made me consider all of her ideas that had never become sentences or never passed through her still plump lips—from a woman who once shared her mind freely.

And I wondered, How do you say what hasn’t been said, all the loving thoughts you want to express, knowing it won’t be remembered? And why say or do anything if the response will not reciprocated?

That middle space of coming to see a parent or a loved one as someone who is difficult to interact with is fraught with anxiety. The Alzheimer’s Association offers guidelines on how to communicate with someone who is experiencing dementia or Alzheimer’s. Use simple words. Speak directly to them. Do not interrogate your loved one.

But how do you reduce the expectation that your loved one should reciprocate or respond in a small measure that you might recognize? And also eliminate the pressure for her to answer you at all?

My mother first began to lose her sense of belonging to the looming, family home on Lincoln Street. Soon, she misplaced words she herself had first formed when she named her children. Then, she released, perhaps not the memory of, but the articulation of the memory of her marriage to my father.

In the span of minutes, she repetitively demanded to know, “Where are we going?” like she was a toddler and we were riding in a car. Even if I had answered, what phrases would convey the fact that she and I were traveling on a long road trip across a strange and bumpy landscape and we wouldn’t even know when we arrived at our destination?

Yes. I was okay with my mother not remembering. I did not expect her to remember. I could tell her all the things she didn’t remember—repeatedly. We’re going to get pedicures. This is the doctor. My name is Annette. Naming is what humans excelled at.

Her eyes remained closed. I massaged her hands with her favorite lavender-scented lotion and a contented smile emerged on her face. If she had awakened, she probably might wonder who I was and what I was doing. Those questions I could answer for her, repeat as often as necessary.

I am your daughter and I wanted to make you feel good today, soothe your aching joints, or what I remembered to be your aching joints.

But if I named the world for her, then what? How would I find the love that trickled out from our brief exchanges? I would have to be satisfied with a version I drank up like a soul lost in the desert coming upon water. A touch of her hand to my face or her quick chastisement of ooh you’re hands are too cold.

She blinked her eyes open. Before I could ask or say anything more about the massage, she looked past me and pointed out the window at the yellow chickadees bouncing on the magnolia tree. Her eyes lit up as she said, “That one.”

There were three birds flitting about, flirting with or competing with the squirrels for feed, before winter set in.

She didn’t express gratitude, let alone any sort of love. Whatever thoughts or emotions she had about me—or my presence—were contained in that one sentence fragment where she acknowledged life.

I hugged her then to hold on to whatever run off of her love that I could. And if that wasn’t enough to quench my thirst, I would return home to my husband, sisters or friends where the waters still flowed both ways.

Annette Januzzi Wick is a writer, community connector and author of I’ll Have Some of Yours: What my mother taught me about dementia, cookies, music, the outside, and her life inside a care home (Three Arch Press), available through online retailers and distributors. Visit annettejwick.com to learn more.