In Theory
“My eighty-nine-year-old mother was shoving furniture around yesterday, using her superhuman strength.”
I was presenting to a group of docents at the Taft Museum, in training for Memories in the Museum, a joint program through the Greater Cincinnati Alzheimer’s Association and Cincinnati’s art institutions of Cincinnati Art Museum, Taft Museum and the Contemporary Arts Center. The series of four programs, each offered at the three museums, encouraged individuals with dementia and their caregivers to partake in art appreciation through specially-curated tours, discussion, refreshments and art.
“When Mom spotted me, she grumbled. ‘ C’mon, c’mon’. I knew to help her despite the rant.”
She continued on until the effort wore her down and – her chair hit a wall. An hour later, after slowing down our time together to an almost crawl of the hands around the large clock, Mom reached out for me and said, “I love you.”
The audience of docents quietly hummed.
The convener of the training, Lisa Morrisette, had recently attended a symposium on arts and Alzheimer’s in Denver called Art Access. Earlier, Lisa had reviewed concepts from the symposium, one being person-centered care or taking a person-centered approach. Anything person-centered had become a buzzword in arts and Alzheimer’s community settings.
In working with the local Alzheimer’s Association, I was in attendance at the Taft that day to discuss ideas on pairing painting and poetry for the Memories the Museum program. I continued with my talk.
“After hearing my mother’s soft, sweet voice say ‘I love you’, I would take Lisa’s words one step further and say, we need to take a human-centered approach.”
I facilitated my program and eaxmples, using a short poem about the Mona Lisa and a comparable writing subject of the Cobbler’s Apprentice.
His ears, large, elephant-like
for such a young boy
what else has he heard?
Eyebrows, umbrellas shading eyes
from deals after dark
what else has he seen?
Those berry-plump lips
which young miss
will he kiss next? – AJW
Panelists had also been seated at the head of the room. The group included two individuals in the Memories in the Museum program. Each had attended the series for a while. One female participant excitedly shared about the program. “It’s the highlight of my week.” Her caregiver husband admitted though, he was not “a museum person”. For C., a former art director now experiencing dementia, his words reverberated through the room. “Coming to the museum was like coming home.”
For several days, his comment literally stayed with me, scribbled on the back sheet of my agenda buried in my flimsy, black tote.
It was all the evidence I needed. When I think of ‘person’, I think of the physical container that is the body, the shape. But ‘human-centered’ allowed me to see failings, frailness, and fears, as well as the life experiences that shaped that person over time.
In Practice
Two days later, my work took me to Memories in the Making, a program distinct from the one above and operated by the local Alzheimer’s Association for over 15 years.
Participants arrive with their caregivers. The caregivers attend a support group and participants work with the Time Slips offering images designed to stimulate recollections and imagination without the pressure of total recall. Afterwards, their apt facilitator, Joan Hock, leads them in an art project, some quite complex. For some individuals, Joan had witnessed their decline in art before it was apparent in life.
Instead of the Time Slips program, my colleague, Pauletta Hansel, and I, facilitated our session with poetry and writing on the theme of cars. The caregivers rejoined later to hear our readback lines from participant’s writings and spoken thoughts.
Betsy shared, “I ended up flat in the mud….I’m still here, stuck in the mud”. She and her husband’s eyes widened as together they recognized Betsy’s words describing an event that happened long ago. The irony of those words was an appropriate account for someone experiencing dementia. The individuals were in essence, stuck in many ways. The art and words helped them out of the rut. (Read our group poem below).
In Life
I hustled from that class, raced home to care for the dog, and sped along the highway to visit with Mom. She and I had spent six of the past seven days together, as I had been concerned with her recovery from a seizure. I was also leaving for Oregon for five days and had racked up hours to make up for the difference in my absence.
Becky, the activities director, informed me how Mom had been in a glowing mood, which was better than glowering. I was not to find the same. Mom grabbed me by the hand to assist in raising herself from the chair. Soon, Mom shuffled around on sidewalks outside. In a wheelchair, another resident, John, chose to follow us. John had Parkinson’s but displayed less outward signs of dementia.
“You’re the POA for your mother, right? My brother is mine. And I want to go to Charleston.” John had spoken long and longingly about Charleston in the same way I spoke of Oregon.“But my brother and sister say I can’t. I need more help. I don’t have much money left but I have some. Do you know the name of lawyer? The doctors say I only have six months to live.”
His words came out rapid fire, as if John were afraid he might lose his life if they were not dislodged from his brain at that moment.
John had been residing at Arden Courts for less than a year. We had chatted about Charleston after I shared that one of our daughter’s lived there. We had talked shop about photography. He once wheeled away and whizzed around the hallways to track me down and proudly show me a Shutterfly book comprised of his most recent photos before the disease took over.
John had been somewhat mobile upon entering Arden Courts, but soon enough, his body began whirring through the stages of his Parkinson’s. He had experienced a few falls because he wanted to get up and out. John was now limited to a wheelchair, but strong enough to wheel himself around and up over the humps of the threshold to the outdoors.
John trailed us and tried to explain his situation with Mom and I. Mom, who could not hear well, let loose a torrent of nonsense, frustrated because of her impaired hearing and comprehension. She was also prone to possessiveness, but I had no way to prove it.
Finally, Mom tired out. She zeroed in on a chair to my left. I guided her to a seat. In an instant, John rolled alongside. He wanted to hold Mom’s hand. That was just a very John thing to do, to try to calm Mom down and speak to her.
He peppered me with more questions while explaining his last wish was to travel to Charleston. Due to his arresting speech patterns and Mom’s interruptions, I was fuzzy on the details. Did he wish to stay in the South throughout the duration of his life, or did he simply want one more visit?
With tired eyes, I stared into his lint grey-blue eyes, eyes that once ran deep as the ocean when I first met him and he asked me out for lunch. I didn’t know his family, though I had cursed them under my breath for no reason. He possessed a computer and wanted his speech recognition software to function. He insisted that his brother was working on it, but I didn’t know what to believe.
John panted, desperate to tell his story before his story stayed buried in the sea of memory. He wanted to be with his son, who had been at the Citadel. However, if my memory served me correct, his son had been transferred to Oklahoma or Texas. But that was my memory…
I encouraged John to talk to the staff about the lawyer. If he had the means, and if his family was holding him back, I wanted him to have the chance.
His story stuck to me like a wet leaf leftover from a rainy day. I researched “make a wish for old people”, though Jim wasn’t old. And there was a program that existed, the Dream Foundation, “giving life to final dreams.”
In 24 hours time, I would be standing in my “last wish” place. The place I want someone to drive me to, and seriously just leave me there. It would be the last and only item on my bucket list. If I accomplished nothing else in this life, it would be that.
However, my mother’s last wish was unknown. I often thought hard about that. She was mostly if not always about her children, her food, and a little peace and quiet. Last wishes always seemed tinged with regret. But Mom wasn’t a regretful person. Her last wish would most likely be a final dinner prepared with her five children surrounding her, no fighting, no arguing, everyone arriving on time.
I can’t make John’s last wish come true, but I’ll keep asking. Maybe, I’ll conjure up a time for Mom when she could expect her children to act like “normal human beings”.
Human beings who want a life that is relevant and remembered, the comfort of family and food, and a place of rest that perpetually reflects who they were before a disease ravaged their person.
From our Memories in the Making session:
Our Cars: Memories in the Making
I.
Metallic green on green Chevy Nova.
A turquoise ‘56 Ford.
Six of us in the station wagon—
a not so fancy car.
The ladies got to ride in my rumble seat.
That’s what it’s for.
I rumbled all night.
I had a Chevrolet. It broke.
My favorite car was any that worked.
I married a mechanic, you see.
I never rode in a car when I was younger.
I paid for my own first car
and never wrecked it.
It was a pretty small car,
the smallest Ford I could get.
I had to have a convertible.
I think that’s why we got married—
my husband wanted a Ford Mustang
and he couldn’t afford it without both of us.
I went to Theis Motors in Reading
to buy my Chevrolet.
Remember the Twin Drive-in in Bond Hill?
It was a requirement to sneak in.
Who knew how much it cost.
We had more in that rumble seat
than you can imagine.
There was always room in one of those cars.
II.
Are we there yet?
Cumberland Falls. Virginia. Wichita, Kansas.
Driving through the storm in the basin of California.
Where I grew up was flat,
the Red River where it flows
into the Mississippi—
the rivers and the swirling highways
is the most of mountains I got.
We went to my mother’s family in Virginia once—
after that, we said, come to us.
The car was the only place
my dad didn’t know how to hit me.
I was one of those kids.
In the car I was safe.
III.
Driving through the mountains,
the windows open,
listening to the wind.
Sitting around a nice fire
watching the night sky—the stars
and only the sound of the animals.
Once we went camping
and he said, when we get married
you’ve got to make me do this.
And we never did it again.
My wife drives more than me.
She drives me crazy.
My husband taught me to drive.
He’d always park me on the hill,
and I’d panic when it would roll back.
I never was good on the cars—
how many I drove into!
Once I ended up flat in the mud—
my son and all his friends went quiet.
That was my introduction to Cincinnati.
I’m still here—stuck in the mud.
IV.
So many road trips I’d still like to take.
I loved driving in the car.
I still do.
I just like going, driving—
it’s a form of meditation.
Now we are moving on
to children and grandchildren
and lots of memories.
From participants in Memories in the Making with Annette Januzzi Wick, Pauletta Hansel, and Joan Hock of The Alzheimer’s Association of Greater Cincinnati, September 14, 2017. (Composed by Pauletta Hansel)
Rubbing hands in the drafty Roh’s Café, my fellow writers scribbled across blank pages, responding to a prompt related to Connor Oberst’s Desert Island Questionnaire song.
I begin my duties at a small, crème cabinet, one that resided in Mom’s foyer. We had a foyer in the home on Lincoln Street. It was quite the step up from the screened breezeway of our youth on Ridgeland Drive. Mom taught us the word, foyer, and what its purpose was. Mostly, the cabinet held Mom’s dress purses. A matching mirror was perched above, positioned in an area where the girls could bound down the steps, fix an errant curl (and did we have lots of them), and head out, not the foyer, but the mudroom, which was also new concept in the home on Lincoln St.
Carefully, I rewrap her Christmas carolers and place them in a box in her closet, along with thinning numbers of Christmas decorations. The carolers are my favorite holiday decoration. The figures so represent a time and place only touched in my heart by the sight of these felt dolls. My mother treasured the dolls for the hope they exuded and the songs only she could hear sung.
I trudge over to the closet. I am delighted by my own brilliance as I rearrange Mom’s clothes from blacks to beiges, though I know they won’t stay color-coded for long. Yes, I am this bored, and this committed to observing each breath Mom is inhaling. I am taking no chances, and like any other day, will drag her kicking and screaming into her ninetieth birth day.
Only a few other photos populate the room, because, well. Because. Because my time is better spent in the moment with Mom. Or outside. Always, outside. And Mom rarely spends time in her room, other than to sleep. Though right now, I am wishing I would have spruced up the décor a bit more, if only to entertain myself.
I hovered behind Mom’s chair while she sat at a four-top kitchen table branded with grape juice fingerprints. She pleated a white nylon napkin and the napkin refused to hold its crease. Over and over, Mom dragged the side of her palm across the napkin as she had done for many years with tatted pillowcases and Dad’s dress shirts.
I entered Arden Courts, arms loaded with a 
Arden is my mother’s home. Her care home. Mom has lived there for five years, just the past week. She lives amongst sixty-some residents who experience some form of dementia or memory altering condition. Mom has outlasted at least a third of the residents who succumbed to death, departed through lack of funds and or the need for a environment more suited to a particular condition. However, it is unlikely Mom will beat out Miss M., currently careening into her hundreds.
Mom finally acknowledged my presence – and that of the cookies. She waved her hands in the air. “Hey, hey.”
I have made a life out of my mother’s life. Not her past one, or ones, though I don’t know if she has nine or not. But the life I made has been created from her present one. It’s not the life I planned for either of us. My mother was the extraordinary organizer. She would have never tolerated an unorganized mind. But she tolerates me. And in the interim, I help others organize their mind and their love.
I missed the Luau Party date on Arden Courts’ activities calendar. So, I was surprised when at Mom’s on a Tuesday to find a luau was to occur later, complete with sweet and sour meatballs, tiki cups, hula dancing and steel drums. Sadly, I could not partake. I wished Arden would have hosted the event on a Saturday or Sunday, despite the fact I had been inconsistent in my attendance on weekends.
In those moments, time became seamless and nearly weightless, 
Mom shot daggers at me with her hazel eyes, as if accusing me of skipping church on Sunday and daring me to produce a church bulletin with the current date.
“I’m taking Mom on picnic.” I said to my husband, Mark, who wiped his eyes and blinked at the clock.
Settling her into an armchair with a tufted cushion in a warm corner in the sunroom, I tried to leave. But tears kept me rooted as if they were essential to watering my family tree.