Love in the Time of Dementia

Photo Credit: Kyrre Gjerstad via Compfight cc

My mom desires a closeness with me now that she never did when I was young.

I’d long suspected my mother didn’t embrace parenting in that fervent, born-for-this way that some of us do. Still, I was stunned the day she actually confirmed just how trapped she’d felt in the confines of motherhood.

She was in a skilled care facility recovering from her third shoulder surgery when I popped in for a visit. My sister-in-law and her three young children had just been there, leaving Mylar balloons and cheery crayon drawings in their wake.

“I look at Jackie with those kids,” my mother said, shaking her head in bewilderment. “It makes me think of the three of you… and there I was, just stuck with you!”

Perhaps she’d been stuck in the post-partum, diaper delirium of bearing three children in two-and-a-half years. At some point, it was clear she wanted more from life. Or, maybe her exodus from full-time mommy duties meant my mother wanted less of my brothers and me.

As I wondered just how far back she’d wanted to fly the coop, I realized my mom began to break free of us when I was about ten. One day she was our carpooling, suburban mother who mimeographed League of Women Voters flyers in the attic and taught Lamaze classes on Wednesday evenings. The next, she went back to college, resumed her nursing career and began to explore her spirituality.

“I thought I married this nice Irish Catholic girl,” my dad used to say.

While she was off “doing her thing,” as my father called it, I warmed up the beef stew or spaghetti sauce, catered to him the way I’d been taught, and looked after my younger siblings. My mother wasn’t home the night my dad had a reaction to codeine, or on the days I left high school at noontime to serve him lunch during one of his many illnesses.

Maybe my mom had permission to change things up because of women’s lib. Then, taking her own baby steps, she busted out, a little more every year until her ultimate escape to the ministry. I was proud of her: a couple of degrees, a hospice start-up, seminary classes and, ultimately, ordination. As an Episcopal priest, she officiated and preached at Sunday services, sat bedside with the sick and dying, and ran grief groups for the bereaved.

She became known for her “pastoral care”— a ministry of presence with those in illness, pain and sorrow. I understand she was very good at this, but I wondered why she wasn’t as present with me. When we talked, my mom would sit, listen, and assume sympathetic facial expressions, just as she did for ailing parishioners, but there was a disconnect. Although she was physically with me, she seemed disengaged when I talked about my children or career.

“It’s so much work to have a conversation with her,” I complained to Tina, my therapist, even before my mother’s hearing got bad and her dementia set in.

“Why do you feel like you have to do all the work?” Tina volleyed back.

Unlike some of my girlfriends and their moms, we were not a mother and daughter who had screaming matches followed by silent treatments and kvetching phone calls to the rest of the family. But we also didn’t share secrets over glasses of wine, have inside jokes, or go shoe shopping just for fun. We could cook together, or pick out slipcover fabric, or wrap Christmas presents. Our conversations were pleasant enough, but lacking in substance. If I ventured to share something deep within myself—a fear, a hurt, a longing—she offered nothing of her own heart’s desire. I read a deeply personal piece of spiritual writing to her, seeking not only her priestly approval but also her motherly pride and appreciation. “Hmm. That’s nice,” was all she said. I felt like I’d bored her.

My mother had once been known for her lasagna, Irish soda bread and apple pie. She was kind and could be hospitable, but she was dispassionate. I frequently analyzed why she was so shut down. A generational thing, I wondered, born of a hardscrabble New England upbringing? The reticence of a middle child? Or the result of some unspoken trauma?

It’s not that she was unfeeling in a cruel or callous way. But she was so darn stoic and unemotional. I imagine it’s a trait that served her well as a bedside chaplain, a defense mechanism or a boundary that kept her detached and functioning. I don’t believe she ever intended to construct barriers between herself and me, or that she kept me at arm’s length by willful design.

I missed her. Rather I missed a version of her that I’d dreamt up and longed for. But it didn’t exist before and never will as her dementia progresses.

Before my mom’s mind went, there was a fall—a broken pelvis, a shattered shoulder, surgeries and rehab. She moved in with my family for several long recuperations. At first, I felt loving, nurturing and oh so sorry for my mother in her helplessness. She was fiercely independent and I knew how hard it was for her to let someone else care for her.

We didn’t have any heart-to-hearts, but we had a feigned intimacy because I was bathing her, dressing her and feeding her. It was a little bit like when my children were born—only in reverse.

My mom wasn’t really a hands-on grandma once my kids were out of diapers, but when they were babies she was a rock star—a first-class baby nurse who was a relaxed, soothing and encouraging presence.

“Your job is just to nurse that baby,” she told me, as she cooked two weeks worth of dinners, kept up with the laundry and dispensed practical advice.

I’d never felt so connected to her. It was the bond I’d craved my entire life. Then, once the baby phase passed, she kind of checked out again. She showed up if I needed her to watch the kids, but she wasn’t one to go play in the yard or invite them to stir the brownie batter.

My mother made it clear she thought I was a needy kid.

“If I had spent 24 hours a day with you, it still wouldn’t have been enough,” she told me when I was learning to juggle the demands of my own small children.

Looking back, what I needed, or wanted at least, wasn’t exactly more time with my mother or more attention from her. I wanted some indefinable, unquantifiable more. Maybe as a child I craved the same thing I’ve yearned for in my adult relationship with my mom: that elusive fusion of connection and intimacy.

I saw tremendous symbolism in my mom’s insistence that parishioners call her “Reverend” rather than “Mother,” the customary form of address for women clergy in the Episcopal Church. “I’m not their mother,” she quipped in her lingering Boston accent, when I asked her why. She otherwise embraced the traditional trappings of the priesthood: hand-woven stoles, white linen albs, silver communion vessels and heady incense. Her collar was like a comic book hero’s telltale cape; it came with super powers—virtue, credibility and validation. It was everything to her.

Widowhood didn’t truly claim my mother until the church rendered her useless. In the seven years after my father’s death, she’d immersed herself in the church more deeply than ever, a sacramental hedge against the stark reality of loneliness.

Then the dementia took it all away, robbing her of memory and pastoral ability.

She went from remote to withdrawn. I tried to pry feelings out of her to no avail, the same way I did with my morbidly anxious and depressed teenager. There was no motherly advice or shoulder to cry on when my daughter began to unravel. I needed my mother but she needed me more and, even though I knew it was unfair, I began to resent her for what she was incapable of giving me.

I went through the motions, serving up lunch on a tray, chauffeuring her to doctor appointments, running to the drug store for Poise pads. We had the same repetitive, beige conversations about hearing aids and chicken salad and grocery lists.

“I think I’m depressed,” my mother said the morning after my husband and I had checked our 17-year-old daughter into a psych hospital.

That could have become our first-ever shouting match. Instead, a cartoon bubble above my head screamed You’re depressed?! Let me tell you about being depressed! I tamped down my anguish, a trick I’d learned from her.

“Just relax,” my mother always said. “You’re so sensitive.” I was supposed to be stoic like she was, but it was not my nature. If the term had been in vogue in the ‘70s, she’d have dubbed me a Drama Queen; instead she made veiled references to Sarah Bernhardt. As my teenage self butted heads with my father, my mom was disengaged, hanging in the shadows and, once the dust settled, urging me to make peace.

The peace I made later was with her. Or rather with my idea of who I wanted her to be. “You need to let go of your expectations,” my therapist urged, “and begin to accept the fact that it’s never going to be the relationship you want.”

I still occasionally succumb to the yearning for a more intimate connection with my mom. She seems to desire a closeness to me now more than she ever did when she was still in her right mind. Recently, she walked me out to the parking lot of her senior living complex, steadying herself with a cane she calls “snazzy”—a new one that caught her eye with its swirly red and gold design.

She planted her feet on the sidewalk, secure in the black athletic shoes she now wears every day, talismans warding off another fall. Her mohair sweater was too heavy for the warm, humid evening, and her wispy, silver hair was uncombed, matted in back from resting too many hours against the sofa cushions. When we said our goodbyes, I held her for an extra moment, then looked her in the eye. For the first time, I allowed myself to think, This could be the last time I see her.

“I love you, Mom,” I said, hoping my smile would mask the sadness I felt.

As I climbed into the car, my mother stared, expressionless, motionless, then lifted her hand to her mouth and blew kisses as I drove away.


Mary Novaria

Mary Novaria is a mother, wife and journalist whose work has been featured in numerous print and online publications including the Washington Post, Redbook, Country Living, Delish, Dr. Oz The Good Life, Good Housekeeping, Chicago Tribune, Feminine Collective, Kansas City Star, Huffington Post, The Good Men Project and Period! She writes about family, friendship and everyday life on her blog, A Work in Progress ( Mary recently completed a “sandwich generation” memoir exploring the trials of raising an angst-ridden teen and, at the same time, caring for a parent with dementia, all the while trying to maintain her sanity, sense of humor and some semblance of grace.

One thought on “Love in the Time of Dementia

  1. Kimmie

    I was in tears by the time I reached the end of this post. Such an emotive piece, and beautifully written; you had me hanging on every word. There’s acceptance here, despite it being hard to come by… but such sadness too. A sadness that catches in my throat.

    I felt recognition in the kisses blown… so moving.

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