Editor’s Note: This article first appeared in “The Chicago Tribune” and on the Web site “Ageless Design,” and is used with the kind permission of the author and site owner.
Whether my mother knows me was never a big deal to me. The first time she forgot who I am, it was worth noting, but it didn’t make me sad. That memory lapse occurred about four years ago. After a good hour of togetherness in our shared home, my mother looked me straight in the eyes and asked, “Where’s Lori?” I expected this with Alzheimer’s. I knew it didn’t reflect her feelings for me, and I knew it wouldn’t last, at least at that stage of the disease.
My sister and I find it interesting when the first question someone asks about Mom is, “Does she still know you?” as if her memory of us would be our main concern. We never know whether to be insulted or address the narrow understanding of this devastating disease.
I’ve spent much more time grieving Mom’s loss of independence, competence and dignity than I have fearing she’ll forget me. It’s simply more painful to see my mother carefully aiming her legs into the sleeves of a blouse or waiting for my deceased father to come home from work than it is for her to call me Abbott, Jean, Teacher or Mrs.
To be fair, there is a difference between forgetting my name and forgetting me. But in the five years since Mom was diagnosed and my husband and I moved her in with us, she has forgotten me plenty of times. Enough that I felt prepared to become a stranger to my mother. That was until a recent episode showed me it might not be that easy after all.
It was evening, when I must engage Mom in activity or conversation so her mind does not concoct some duty or circumstance to anguish over. I was trying to reach her emotionally, a fairly reliable tactic, when I said, “Mom, do you know how dear you are to me?” and went on to describe why.
Smiling politely in my direction, my mother asked, “How could that be? You hardly know me!”
I’d hit similar roadblocks before. So I applied a well-practiced routine to jog her long-term memory. “I am Lori. Remember when you gave birth to me on June third, 1957?” …Pause… “Wasn’t that a glorious day, Mom?” …Pause… “I was a good girl, right?”
She usually enjoys the reminiscing, but this time Mom listened quietly and did not catch on. She raised her eyebrows and cocked her head to get my attention. Then, in her most cordial tone of voice, she explained, “Well, I was just told all this recently.”
How I prefer it when Mom first sees me in the morning. Her face lights up. She corrects her sleepy posture and declares, “There’s my little girl!” Our arms wrap around each other. Our hands pat each other’s back. We kiss cheeks as our heads bounce from shoulder to shoulder. Like a dance, rhythmically and symmetrically performed, our ritual is comforting in its familiarity.
The experience is equally gratifying when Mom’s weekday caregiver brings her home from an outing and I greet them at the door. Surprised to see me in my own house, Mom proclaims, “Who’s this?! Oh, come here, Honey!” Consumed with emotion, her coat half off and dragging on the floor, she grabs me and squeezes with all her might.
“I like when you call me ‘Honey,'” I say.
“Well, Honey, I’m so glad you’re here. I missed you.”
On this recent evening, however, we wouldn’t have a warm exchange. Instead, I was missing her for the first time. Although I didn’t want to believe I’d have trouble coping with Mom’s failure to recognize me, I worried about losing the mother who raised me on affection and the love I could still count on. I realized at that moment why this would be so hard.
It’s not that I love being loved by my mother. Although I do. It’s that Mom is most herself – her original self — when it comes to loving. Despite this destructive disease, my mother’s loving soul remains intact.
Mom can’t form a complete sentence with real words that makes sense or isn’t some confabulation — unless, it seems, she’s expressing love. She may not be able to set a table, but she still can give a tender touch. When Mom is holding me in her arms, I can forget she has Alzheimer’s.
I know many whose loved ones with Alzheimer’s no longer know them. Most of them say they are still appreciated as caregivers. I expect as I become a stranger to Mom, she will still appreciate me, but the relationship will end there. If she does not recognize me as her daughter, how can she love me like my mother?
This will be a turning point in caregiving for me: Facing what Alzheimer’s has left of my mother, every minute of every day, with no chance to escape the reality of the disease. At least I am assured of my ability to continue loving Mom even when she can’t love me back. I’ve learned no other way.