My Mother's Dementia Symptoms Were Brushed Off For Too Long
By Meredith Burns
I learned to waterski when you were driving the boat, your hair blowing on top of your back. You looked beautiful and so cool. You’d twist your neck to see me. You smiled. You were beaming. I crossed the wake. You erupted in pride. It was always you: exuding unconditional love. I was five. As I grew up, you’d say,
“I want to come back as you.”
“I want to come back as you,” I’d respond.
**
My mother developed symptoms of frontotemporal dementia when I was 27. She was 61. While childhood will always end and adulthood will always begin, I expected my coming of age to happen gently, the passage of time slowly evolving me – with my mother’s guidance – into a confident adult. She was a woman full of grace, poise, and strength.
It was during the epicenter of my coming-of-age that I lost her to this disease. That time when all one’s choices inform how life progresses. Without her, I crashed.
I was bemoaning being ghosted by a guy. I’d just finished business school and most of my friends were getting engaged. Instead of offering her typical sage wisdom, she suggested I get medicated, and told me she was, too. “Snap out of it,” in a Mary Poppins tone. I was hurt and confused. The suggestion to medicate was of a different being than I knew.
She was a recent empty nester after my two younger brothers had left for college, and our culture doesn’t give mothering much glory — reason enough to be depressed.
That fall, I saw this medicated version of my mother face to face. She was in town for our annual ritual of shopping, good food, Broadway, museums, and some time at the spa.
We went to the hotel pool after our massages. My mother threw off her robe, looked at the pool with the euphoria of someone on a perfect cocktail of mushrooms and molly, stripped bare, and jumped. I struggled to grasp what I was witnessing. A swimming couple tried not to stare. My mother is modest, conservative, and private. Watching her saunter across the tile, fully exposed, and then swim naked with gleeful abandon in a hotel pool in Columbus Circle, I knew something horrific was happening, even if nobody else did.
My mother’s disease came on in whispers, small things only noticeable to someone who knows the curvature of her fingers as they lay flat during a manicure, or the fold of her duvet cover. Over the next few years, there were more foreign behaviors.
A glazed-over look in the middle of a conversation. Was it depression?
A discordant laugh in response to an issue I was having with my boyfriend. Was it a psychotic break?
A nap in the middle of the day. No, she must be deeply depressed.
Abruptly leaving my cousin’s baby shower in a panic when everyone was discussing Hillary Clinton’s memoir, Hard Choices. “I have to go NOW!” she yelled. She must be disturbed, I thought. Something is wrong. Why won’t she talk to me?
No, no, people would say, she’s just dealing with her kids growing up. With being post-menopausal, with life as a woman, hormonal, doctors would say.
Dear God, what is wrong? Why can’t she carry on a conversation? What’s scaring her? She’s checking the locks at night. This isn’t my mother.
I get engaged. She’s apathetic. I get married. She insists on wearing black to the wedding.
She starts to talk about her sex life and wants to dance on tables at restaurants. I don’t know her anymore. “I’m your mother, not your friend,” she used to say. Now she wants me to jitterbug alongside her to Elvis.
A year into my marriage, I start to feel unsure I married the right person. I need her. I fall in love with someone else. God, who have I become? I am desperate for her. I try to talk to her despite knowing I’ll come up short.
Every day felt like I couldn’t breathe as I navigated the divorce, work, and new romance. She was napping more and more. I said yes in court to the separation. She said, “Oh,” when I told her. I turned 35; the divorce was final. I was in free fall.
I go to a fertility doctor. My egg count is declining. What if I can’t have kids? I’m single now. What if I don’t get remarried fast enough? She’s unphased. She’s losing too much weight. “You’ll be fine," and walks away.
I meet someone. He’s handsome, smart, and kind. We get pregnant. I tell her. Why doesn’t she care? I have the baby, she hands him back to me. She faints in the driveway, face first, and breaks her nose. The handyman finds her, and there’s blood all over. Her nose is crooked. Her teeth are broken. She doesn't care. Why doesn’t she care? About Broadway, about tennis, about books, about travel, about my child, about art, about me?
“Can I go with you to the therapist, Mom?” I begged her. “I want to talk to her about how you’ve changed.”
“No!” she yelled. She hid in her room and slammed the door in my face.
After years of aimless searching, severe isolation, guessing, convincing, and navigating psychiatrists and therapists, we were finally directed to a neurologist. “Frontotemporal dementia, (FTD) with ALS” they said. I had been hoping for an extractable brain tumor. Instead, a two-headed monster came after her mind and body.
I was pregnant again with my second son and leading a training with my 35-person team when my brother texted me the fatal diagnosis. I felt dead in my maternity dress.
Dementia. It is now a part of my life. I’ve evolved from a frantic madwoman full of fiery grief to one learning to live with the madness of grave, constant loss. Each phase of my mother's decline has birthed new, illogical coping mechanisms, like a quick divorce or having three children as fast as I possibly could, while she was becoming more apathetic, more inappropriate, more slurred in her speech, more gaunt, and more childlike — all symptoms of FTD due to degeneration of the frontal and temporal lobes of the brain.
And now, as she weighs 65 pounds, and has lost most of her speech, muscle, and motor skills, I realize I’ve entered a part of life that we will never know together. The last lucid conversation we had was when I was 27. My then live-in boyfriend had gone out drinking and came home with a bounced rent check. “Do you want to break up with him?” she asked and handed me a pretty handkerchief to catch my tears.
I am no longer young. I wonder if, for her, time has stood still or if she has been able to absorb even the tiniest bit of my evolution. I will never know, but I always search for her.
Every time I visit my childhood home in Cincinnati, I look for notes my mom may have written me.
I rummage through her closet inch by inch, purse by purse, pant pocket by pocket. Stopping at each one to check if there’s a note inside and lingering there, when there inevitably isn’t, to remember the last time she wore the article of clothing I’m clutching. I inhale. I try to find the remnants of her scent.
I plow through the crispy, aged scrapbooks; plastic shoe bins; and browned albums full of who she once was and who were as a family. We had a beautiful life in this house, one she built with my dad, overlooking the Ohio River on a hill under the stars with glass walls to see the sunrise. Now it all just sits still, like a photograph of the last time my mother was still her.
There’s never a note. I should know better. You don’t get to know your brain is rotting once it starts. You don’t get to prepare or say goodbye. I think I should start writing notes to my three children now.
I often feel I should be good by now, that ten-plus years after her dementia showed up, I should have a handle on the sadness so that when I run in one last time to hug her and tightly wrap myself around her frail, bony body, I wouldn’t be brought to tears. I have slogged through enough stages of grief and years to be stronger than this. But nothing soothes the endless loss of her. Nothing makes the wishing or wanting subside.
On my last visit with her, my five-year-old son waited in our rental car while I walked in to say goodbye. All I used to want was for her to live long enough to hold her grandbabies. Now, as they have grown into small children, I don’t know how to explain why she is the way she is — nearly incomprehensible speech, high-pitched squeals, fingers that don’t work, a mouth that drools, and a body of bones and lungs that need a machine for exercise.
“She’s napping,” her caregiver said. I go to her room, and she’s not there. I wonder if she went to the bathroom and died. She’s not responding when I call her name. The muscle deterioration makes it so she can’t go far. So it’s either to Heaven or a different room on the third floor. Eventually, I found her in my brother’s old bedroom. Laying gaunt and still on a schoolboy-sized bed that she makes look big. She pops up with the scent of me.
I bend over the side of her bed and feel her bones covered in her paper skin. Press my head against hers, cheek to cheek.
“I love you, mom," I say. You’re the very best mommy.” She pushes out sounds that create the only words she has left.
I loovvveeeeeee youuuuuuu. She part screams, part moans, part cries. She puts her mouth to my cheek but can’t pucker. It’s a kiss the way my two-year-old daughter gives them — a lip press. Full of true love.
Her breathing heavies. Her arm still has a slight weight. I reluctantly slide it off. What an evil daughter am I to move my mother's arm off me so I can leave.
I have to catch my flight, and my five-year-old is in the car. I have to go. I hug her again. Kiss her again. Stroke her hair again.
The following day I take my kids to school and meet a girlfriend for a cold plunge. They say it helps with brain health. With anxiety. I drop my clothes in the sand and look down at my nearly naked body that birthed three children without her. I dive under. The cold hurts. I count to three. My mother will die soon. And I will learn to survive it. I come up for cold air. I am still my mother’s daughter.
If you or a loved one are experiencing any signs of FTD, please contact the Association of Frontal Temporal Dementia helpline: at 1-866-507-7222 or email info@theaftd.org