The Journey of Dementia

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My sister and I had traveled home to give my brother a break.  We were with my mother at her primary care physician’s, technically a licensed nurse practitioner whose manner is part game show host, part private investigator.  We all love her.  After the good news –physically Mom was in top form — Lynne shifted gears, getting to the real reason we were there.

“Who’s staying with you now?” she asked Mom.

A no-brainer.  My brother had been living with her for two years.  After a long pause, she said, “My son.”

“What’s his name?”

“Well, I… “

Lynne pointed to my sister, “Who’s this?”

“But I thought you already — I’m sorry!”  As if the problem were a failure to have made proper introductions.  “That’s my daughter, the doctor.”

“What’s her name?”

Mom took her head in her hands.  “Honestly, I–“

“Who’s this?” Lynne pointed to me.

“She’s the younger, and she’s very… precious.”

Lynne turned to me and offered her hand. “Hello, Precious, nice to meet you.”

My sister roared with laughter.  We all did, Mom too.

She also missed President of the United States, even though she watches the news every morning and evening; it’s the central organizing activity of her day.  Names are mostly gone; we’re down to pronouns.  My sister’s husband, for example, is her him.  Lately, we who come to visit and care for her are always guessing; it’s an ongoing word game.  “That thing that goes up and down” might be elevator, temperature, volume, channel, zipper, toaster, mood, or the sun.  Sometimes we play Family Feud, just for fun:  What are the top five items that get lost or misplaced in your household?

Glasses, purse, gloves, remote control, coffee cup.

“What state do you live in?” Lynne asked.

Mom started to ramble about California.  My sister and I exchanged glances.  We have no California connections.   My mother was born and raised in Vermont.  She grew up at a summer camp for girls on Lake Champlain and earned a degree in Russian at Middlebury College.  She raised five children in Vermont.

Lynne adopted a tone that was more clinical, less Steve Harvey.  “So you’re having trouble remembering…”

My mother was in the greenhouse deadheading flowers.  I’d sequestered myself with the manual for caregivers my sister had brought from Oregon: Help is Here:  When Someone You Love Has Dementia (Hodges and Hill).

Finally we had a diagnosis.  We also had a progression, a map to the territory.  We could begin to understand our enemy.  We even had a visual—side-by-side illustrations of healthy and degenerative brain tissue, one bright, the other tarnished with plaque.

Having a family member with Alzheimer’s disease puts an emotional, social, physical and often a financial toll on the family… the family faces challenges that no one is prepared for, which are difficult to talk about, and which may create uncomfortable and often contradictory feelings.

After reading the manual, I felt, paradoxically, that doomsday was upon us.  Not that we’d been in denial, necessarily, just taking it one day at a time.  After all, my mother had always operated on a rarefied plane, her head in the stars.  If she were a card in a Tarot deck, she’d be the High Priestess.  She’d had a career as a palm-reader and astrologer.  For over two decades she traveled to Montreal every week to study palmistry, a wallet-size photo of Paramahansa Yogananda, lodged in the dashboard of the old Buick wagon.

With the whole arc of the disease laid out before me, I felt disorganized, fuzzy, and emotionally charged.  I was worried in particular about me, about all the times I’d forgotten some acquaintance’s name or stood in a parking garage blanking on where I’d left the car. I made a to-do list for the last few days of my visit: check out the memory care place, complete Medicaid forms, look into Home Health.

I tried to place her on the dementia spectrum.  Check off every last symptom in Early Stage (2-4 years) and most of those in Middle Stage (2-10 years).  Memory loss.  Hoarding. Misplacing things.  Paranoia. Difficulty handling money and paying bills.  Trouble organizing meals and cooking.  “Sundowning,” the confusion or agitation that sets in late in the afternoon.  She’d flirted with incontinence and refusal to bathe, but this visit, at least, those were off the table.  On our walk that morning she’d made me promise to tell her if she ever started to smell.  I took this as a hopeful sign.  Never mind that she’d repurposed the hand-woven potholders for her sponge baths, hanging now on the towel bar by the bathroom sink.

In Alzheimer’s the hippocampus is the first part of the brain to be affected, the part that receives messages and sends them to the proper place for filing.  My brother recently texted a photo of the Saran-wrapped carving knife he found in the back of the refrigerator.  I pictured Mom cleaning up after dinner, putting away leftovers.

Unable to bear my own energy, I jumped in the car and drove fifteen miles to check out the memory care facility, highly recommended by several locals.  Although I’d dropped in without an appointment, they seemed happy to show me around.  In my agitated state, I built a case from random details:  an aide out smoking in the parking lot, plastic statuary of the Virgin Mary, the sign-up sheet for a fall foliage bus tour, and the elderly woman who sat slumped on a bench in the hall and didn’t respond to my guide’s chirpy greeting.

There would come a time, perhaps, but not yet.  My mother was still able to bathe herself, to change her sheets and make her bed just so with plumped pillows.  She still mopped the kitchen floor, stacked wood for the woodstove, and also left her coffee mug warming under the broiler on high—for the whole day.  When I checked the trunk at the foot of her bed, helping her look for her misplaced purse, it was a jumble of clothes, even though we’d organized it the last visit.  She wore the same outfit for several days at a time and couldn’t manage the zipper of her coat.

Each day we trudged together two miles up to the top of the hill and back.  We passed the time with Scrabble and the news.  We did well until the last afternoon of my stay when I introduced a real world agenda:  We needed to go to the bank to sign the form that would give my brother access to her checking account.

She was not going to sign any forms.

“There are bills,” I said, thinking of caregiver burnout and End Stage (1-3 years).  “We have to get people in to help.”

“I’ll be fine,” she said.  “If I need something, I’ll call a friend.”

“But, Mom, you can’t use the phone.”

“I most certainly can.”

“Then show me.”

If I’d had my wits about me, I would have suggested cookies and tea.  Instead, I backed her into a corner, forgetting rule number one:  Never argue with a dementia patient.

“I don’t want to talk about it,” she said.  “You’re upsetting me.”

She stood up from the table where we had been sitting in the greenhouse and fled, blazing with indignation, into the house.

I followed, pressing the issue. “Show me.  Call Paula.”

She fizzled out like a sparkler by the dining room table, the end of a flight to nowhere.  She stood with one hand on a chair, hesitating at some invisible crossroads.  To use the phone, you would first have to know where to find it.

I remembered at that moment something my hippocampus had filed away two years before, the midsummer night Mom and I stood together on the deck, watching fireflies.  It was an inky, moonless night.  As far as the eye could see — down in the meadow below the deck, high up among the branches at the edge of the woods — fireflies were fantastically doing their thing, blinking in and out all around us.  Even then I was trying to find words to describe it — as if the stars had descended to our level, as if we were standing in the middle of the cosmos — when her voice, strangely childlike, brought me thudding back to earth.   She said, “I don’t know what I’m supposed to be doing.”

I left in the dark at 5:15 a.m., flying along 30 miles of secondary road before the interstate, high beams glancing off animals that darted into the ditch at the last possible moment—raccoon, rabbit, mole.  I ran over the carcass of an already flat skunk and the smell trailed me all the way to I-89.  I could not get away fast enough.

When a family member is diagnosed with dementia, the family begins a journey… The journey could be short, but likely it will be many years.

Ten hours, 538 miles to Baltimore.  That much I knew.

Lindsay Fleming
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  1. Thank you for your beautiful essay. I’ve been that route with my father…it is heart breaking. Just a quick note…my mother was sitting with Dad at the nursing home and she said: “ you know who I am?” His very halting response was “I don’t know who you are…but I know that I love you.”

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