Losing My Mom Even Though She's Still Here
Diagnosed in 2011, my mom's life with Alzheimer's continues to leave us in the frozen sadness of ambiguous loss
The first time I ever saw my mom cry, we were in the kitchen. I was 32, she was 65. And it was my fault. Mom always said that if she'd ever lose her mind, ever not be herself, she'd throw on her swimsuit and walk into the lake that bordered our backyard. We laughed about this idea.
Jodi Arndt, right, and her mom before Arndt left for Africa | Credit: Courtesy of Jodi Arndt
"Mom, if you lose your mind, you won't know where your swimsuit is, how to swim, or any bits of this conversation," I told her. She didn't care. In the water, "she was free." Back then, I had not thought of memory as a possession, something to have or be hidden, later stolen and unrecoverable. Soon, though – too soon — I would learn what so many adult children and families know.
Back then, I had not thought of memory as a possession, something to have or be hidden, later stolen and unrecoverable.
Dementia, specifically Alzheimer's, introduces us to the frozen sadness of ambiguous loss – the losses we can't clarify or resolve. There is no certainty about the loss, no eulogy as proof to prepare and comfort those left behind. The trauma and anxiety of ambiguous loss unrelentingly sucks.
Observations About My Mom
There is much I didn't understand about loss and grief before that day in the kitchen. The week prior, neighbor ladies started calculating losses. Whispered words, "something is wrong with Rosie," circled our block, tiptoed across our suburban lawn. Bored moms with less full lives talked about all the things going wrong with Mom as if the contents of her mind were a sad grocery list to check off. It felt as if a triad of women were perched on kitchen chairs retelling stories of what would become of us from one kitchen table to another until it reached our cul-de-sac that morning. The timing of it sucked.
My plan was to take off from O'Hare Airport in a couple hours for my first trip to East Africa, but before that I had to talk to Mom. The person - my mother - who was whisper reading Dad's handwritten notes laying by the front door reminding her of his Saturday tee time, who typed remembered stories at the local senior center, who assembled her days as she always had, with humility and humor, didn't know she was the subject of so much talk.
The Conversation About Her Memory
So, I had the conversation.
"Mom, you think maybe we make an appointment to see the doctor?"
"The doctor? I don't need to go to the doctor. For what?"
"Just to see if she can help. Sometimes you seem confused, forgetful."
Mom, grabbing a bag I'd brought upstairs for my trip, turned and walked downstairs. I followed.
"I DO NOT need a doctor!" she squared up facing me. "Look at your Dad, he forgets where he puts his keys every damn day, his glasses, every second, and you want to talk to ME about a doctor? Nobody is going to tell me anything. Yes, I am getting old, but I AM FINE."
Tears blossom. I see one fall. She wipes it away.
"Mom, PLEASE. I am sorry. I didn't mean to upset you. It's just th–"
"No, it's enough, Jodi. I am going to prove you wrong. You will see. No one is going to tell me anything," she spits as she tosses the backpack into the cubby hole, slams the door and stomps upstairs.
We drive to O'Hare in silence. 17 hours and I'd be in Africa.
Those first nights in Tanzania I awoke to the clang of convent bells and followed the stone path that led to breakfast. I'd scrape my plate into the gray tub, the rhythm of the fork on the plate an echo against the avocado green tile. As my plate hit the gray tub, I pleaded for Mom not to hate me.
"I am my own best friend and I will always look after my own well-being."
In the morning sun, I walked holding hands of sisters in habits before kneeling in unison to pray. These women were the single, celibate version of my mother whom I'd betrayed. She herself was once a nun. Each evening, I'd return to a small room with three bulky, beige computers willing them to work. The computer was my confessional and the email to Mom, my penance, but limited Wifi was a purgatorial hell.
An Ongoing Struggle
Months later on our back porch, Mom brought up the doctor's appointment.
"I'm glad you did it, Jodi. You gave me a gift that day in the kitchen. The doctor gave me a test. I passed. Hell, I even did better than your father, so while I appreciate that you care about me, you were WRONG," she said. "I am my own best friend and I will always look after my own well-being."
I took a sip of beer and the worn, yellow cushions stuck to my thighs as we talked. She, sure of herself; me less so.
Decades later, Mom continues to live with Alzheimer's regardless of what the battery of tests said that day. In 2011, we got her official diagnosis and Dad became her primary caregiver with six of us kids trailing behind. In 2017, a new bolt on our front door was installed to prevent Mom from unsupervised early morning walks.
How many times can I lose my Mom even though she's still here? I ask myself over and over.
The plot twist: Dad's newly diagnosed Cardiac Amyloidosis meant he was dying. So, we pivoted.
"You have two damn invalids here, Jod," he observed accurately.
The Calm of Chores
After Dad died, I found chores an incredible comfort as I'd float from room to room with a bottle of Pledge. God bless the chores that were a respite from reality! Ministering to the bathroom didn't beg me to question whether I am a competent enough daughter to do the more heartbreaking chores that Alzheimer's demands.
Like trailing behind Mom with a spoon of crushed Seroquel (that talk her out of hallucinations) that I hide in Costco ice cream. Or persuading her to come inside after she sneaks out of the house, waiting for her parents who will never come. I do those chores to the best of my ability. I do them sad. I do them tired.
Try as I might to reassemble my life with her and without her, I simply resist it. While these chores distract me, they can't cure the messiness that grief invites. I shake the can of Scrubbing Bubbles and the loops of the white foam deal with the defiant toothpaste; my eyes wet.
I want my Mom. I want my Mom! I want my Mom!
Try as I might, I cannot sort loss after ambiguous loss into piles like rows of socks and shove them into drawers and walk away like it's nothing. How many times can I lose my Mom even though she's still here? I ask myself over and over. I only wish the answer were as easy as these chores.
