What Makes for a Good Day?

(https://findyouinthesun.com/2017/11/17/what-makes-for-a-good-day)

 

Mom CatchlightI 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.

Is this what the famed surgeon, Dr. Atule Gawande, had in mind, when he asked, “What does a good day look like?”

Dr. Gwande had written a New York Times best seller, Being Mortal: Medicine and What Matters in the End. I never read his book. I had lost a loved one out of chronological order and already knew what mattered.

But the doctor had returned as guest on an On Being podcast, and the question, What does a good day look like, a question that transformed his practice, now played like an earworm worse than my mother’s Sinatra tunes cycling through my brain.

Thanksgiving was nearing in Mom’s care home and leftover lunch scents of turkey and gravy wafted up toward the ceiling.

I swung my body around to peer into Mom’s field of vision, a field rapidly diminishing. This summer, Mom began to point her nose down, most often as she walked. I thought her back was giving her fits, or, at 4’ foot 7”, Mom had shrunk again. But in dementia, loss of peripheral vision was common. Her perspective had been altered not by choice but by disease.

“Hi,” I said and closed in on Mom’s face.

The caregiver had just given my mother a shower and notes of lavender and almond oil emanated from Mom’s skin.

Staring at another resident or the inaccessible, frosty outdoors, Mom pinched a portion of stuffing and dropped a blob on the floor.

“Hi,” I uttered again. As I spread my feet apart to lower my face to hers, my boots slid across gravy puddling on the floor. “Ewwww.”

My outburst cut through her fog.

“Hi.” Mom’s tone was flat.

I leaned over and enveloped Mom in my fleece jacket.

She pushed my arm away and my purse slipped off my shoulder—into the stuffing.

“What do you want with that? Oh go on. Don’t do that. You should when you…” Mom’s loud rant caused heads to turn.

To the average person, Mom’s utterances made no sense. To me, her gibberish translated to, “Don’t hug me. I’m not in the mood.”

Mom’s outburst continued. “No, I mean that one.” She jabbed a finger into the air, judging another resident who had knocked a plastic puzzle piece on the floor and shattered the silence that was more jarring during meals. Mom always reproached other residents for looking, speaking, eating, or living.

I had rushed to visit Mom between meetings and a car appointment, plotting my route to include a stop to see her. Now, I stepped back to take in the whole of the scene playing out before me.

Dr. Gawande informed the interviewer how people in the end stages of their life possessed priorities beyond just surviving. He recounted a story of a woman who would die 48 hours later. She had asked if she could take her grandchildren to Disney World. But it was too late. The medical community had missed her wish by planning for what the doctor could fix and not implementing other notions to support her well-being.

Dr. Gawande defined well-being as: the reasons one wishes to be alive.

I had overseen my mother’s care for five years and longer, if I counted the years she had hidden behind the haze of dementia. Over the course of windy blog posts, pealing laughter, and unstoppable tears, I pondered what were the reasons Mom wished to be alive – other than to torture me.

On occasion, I entered Mom’s memory care home and was forewarned by staff about Mom’s mood, only to find her in a lighthearted disposition and joking about playing kickball inside while another resident screamed out, “Kickball is an outside game.”

Other times, in the exact same setting, my hopes were dashed by my mother’s moods, which, like a Ferrari, went from stillness to growling in ninety seconds.

And so, my mother was mortal, but she was not dying in the traditional terminal sense. It was more difficult to answer the question, “What does a good day look like?”

Taking her grandchildren one last time to Disney World, which could be accomplished only through the feat of virtual reality?

Reading one last book of Erma Bombeck’s or watching How Green is My Valley or Cat on a Hot Tin Roof with Paul Newman one more time?

Rolling out her revered ravioli to the precise thinness to not explode when slipped gingerly into the water, pushed ever so slightly under the roil, and lifted out with slotted spoon and coddled with homemade sauce?

Those events would happen at a conscious level for which Mom would have no grasp of the joy or meaning they might carry.

I wriggled Mom’s chair out from beneath the table.

She squeezed my hand and gritted her teeth. A grrrr rose out of her vocal cords.

Like a mechanic jacking up a car, I lifted her up through carefully placed shoulder anchors and footholds.

Slowly, Mom straightened. One foot followed another until she was erect and on her way. Her legs picked up speed.

We traversed a third of a mile that afternoon.

What does a good day look like? For eight hours with one caregiver, the day appears maddening. For another set of eight hours with a different caregiver, the time is filled with joy. But what does a good day look like for a family member with an overwhelming responsibility to figure out what a good day is for someone else?

I wasn’t around in the years when I should have been asking those questions. I wasn’t the kid chatting about boyfriends with Mom over the phone. I was the kid who challenged my mother’s beliefs or reported for duty, and left.

My time with Mom ended an hour and a half later. I often berated myself for leaving when I had time available, but ninety minutes was heroic for those that didn’t actually work in the dementia field. It took pots of patience for me to cook up ways for Mom and I to interact in that stretch around the clock.

Mom reached for my purse as a handle and I stumbled backwards. “Here. Here,” she warned as I nearly backed into a fake streetlamp.” Translation: look out.

Finally, I nudged her back. We were caught in tug of war.

I was her gravitational pull as she scooted towards a bench and shot more invectives my way.

She plunked down on the tufted cushion where the afternoon sun shone low through the thinning oaks and maples.

I propped up Mom’s arms with two fringed, elephant pillows. Her feet, shod in black Velcro shoes, swung off the ground.

I kneeled in front of her, slowed her feet to standstill, and placed my hands in her lap. “Mom, I’ll see you later.”

“What’s that sweetie?” She tapped the tip of my nose with her index finger.

Did she really mean sweetie? And was the 90 minutes of haranguing worth one moment of this adoration?

Well, Dr. Gawande, it was.

 

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Cheering on Lives

68718I entered Arden Courts, arms loaded with a box of cookies. High-pitched vocals echoed through the hallways and I cringed.

From down the hall, a familiar voice rang out. “Your mom’s down here.” It was Becky, the activities director.

I nodded her direction. “Ok. I’ll just put the cookies away (meaning out of sight of lurking cookie monsters) and come find Mom.” I shuddered to shake off the shrill, but pleasing, notes drifting alongside me as I coursed through the hallways.

I let one of the caregivers know about the cookies’ whereabouts and sauntered towards the community center. As I closed in, the singing voices sounded more like, well, cheerleaders. Wasn’t it way too early in the day and my coffee intake for cheerleading?

I approached the doorway, glancing around the room for signs of Mom. At first, my eyes skipped over my own mother because she was squirming in a wheelchair. Probably to move her more effectively for the music show.

I entered the room from the rear. Blood pulsed through my ears as they were again struck by the voices of the woman crooning and carousing with the crowd of residents who merengued with shakers and tambourines to the tunes. A chorus of residents hollered, “You’ve got the cutest little, baby face.”

For a spell, I watched this spectacle and Mom from back of the room. Like the bouncing ball over top of old songs on TV, Mom’s eyes followed the bopping women around a room cramped with wheelchairs and restless residents.

Finally, the two blonde-haired women and their accompanist, one female singer and one male, stopped to catch their breath.

“Hi, Mom,” I whispered in her ear. I kneeled down and lifted her hands to help shake the plastic maracas she held. I couldn’t tell Mom to do so, because, well, she wouldn’t.

Hints of Me and My Gal floated around the room. I couldn’t move, mesmerized by the women and their accompanists with such chipper manners and the thinnest layer of makeup to enhance the joy they exuded and extracted. The two lead singers’ faces gleamed while they danced around in blacks tights and a purple sleeveless athletic shirt. They also wore something else. Contagious smiles.

Becky leaned in to me. “They’re former Ben-Gals. Priscilla, and Julie helped, started this group and they’ll be coming the next few weeks.”

Another resident wandered off and a chair opened up next to Mom. Settled into an oversized- transport chair, Mom wasn’t likely to meander. Each time Julie or Priscilla patted Mom’s arm or passed her by while dancing to Ain’t She Sweet, Mom’s hazel eyes grew brighter. She lifted her eyebrows as if in disbelief.

Over the course of an hour, the women met Mom’s gaze or that of the other residents with an intensity I cannot replicate. One ran her hands along the sleeve of Mom’s bejeweled shirt and Mom caressed the performer’s glistening cheek in return.

During the next song, Priscilla stood before Mom, holding and swinging hands. She was the true founder of Cheering for Charity. Priscilla’s mother passed away in 2008 from Alzheimer’s complications and Priscilla founded the organization shortly thereafter, to bring more life into the world of those with dementia or living in other care homes.

Still locking arms with Mom, Priscilla spoke her words to me. “I see my mom everywhere.”

I nodded. Her work had become about her mother’s life. That mantra I understood.

The pianist played a few notes, prodding the audience towards the next tune. “Shine on, Harvest Moon,” she serenaded the residents and the velvety tones covered the room in warmth. Then, I Want A Girl (Just Like The Girl That Married Dear Old Dad) followed.

Peggy, a petite and ebullient resident, stood from her chair and tugged at Julie’s sleeve. “Do you want to see the gal that married dear old dad?” Her hands shook. From between two tattered cards carried in her purse (many women carried purses), she pulled out an old-fashioned, airbrushed photo of her mother.

“She’s beautiful. She looks just like you,” Julie directed back.

Peggy beamed. “Everyone says that.”

I bent over the photo. “What was your mother’s name?”

“Margaret. Just like me.” Her chubby cheeks grew round.

After the close of the event, Leah, the pianist, handed me a business card. Later, I sent the group an email in appreciation for their gift of goodwill: My mother is not one to follow directions, so she won’t shake a tambourine for instance, if you tell her to, but I discerned, from her smile, that she found your presence a light in the midst of her sometimes dark mind.

I meant it. Theirs had been the rare entertainment with exuberant voices, a hop in their steps, glowing smiles, and a compassionate touch.

Only an hour earlier, I had sat in the parking lot, hands glued to the my steering wheel, debating whether or not to listen to the president’s press conference about the mass shooting in Las Vegas. My heart clamped down to prevent the flow of news. I exited the car and trudged into Arden Courts.

When I departed 90 minutes later, I faced the bleakness again, this time with more strength. There had been a catharsis in those moments with the cheerleaders. I used that term with the utmost respect.

I had given up cheerleading in ninth grade to tryout for volleyball (it was a win-win for many folks). Throughout the morning performance of Cheering for Charity, I had maneuvered my thoughts away from Las Vegas and towards my junior high cheerleading days. Getting stuck grabbing a basketball net while another cheerleader walked out from beneath me, and our seventh grade history teacher who tried to helped me down. Skirts flipped up by the boys seated behind me in Spanish class. The fact I could never do the splits, not all the way.

Many ah-ha moments often washed over me whenever I left my mother. Pressing the ignition button with my index finger, I hummed to myself. “I’ll be loving you, always. Always.” I tried to mimic Julie’s sweet tone. The memory of the glow circling my mother’s face lit up the interior of my car.

That particular day, the women had not only cheered on Mom to find a way back to the youthful lightness of her days. The group had cheered on the ever-so-small movements in the midst of a horrific maelstrom occurring 2,000 miles away. For forty-five minutes, I too had forgotten my despondence and joined in the chorus of cheering on lives.

AJW, 10/3/17

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In Theory, Practice, Life

In Theory

FullSizeRender (76)“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.

Cobbler's apprenticeHis 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.”

IMG_3575In 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.

IMG_3695I 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)

 

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The Sacrament of Cookies

Cookies for Arden flashed on my calendar that Friday. It was time again for the weekly rite.

IMG-3186Arden 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.

Five years was an eternity to evaluate the relationship I had to my mother’s disease. But the span offered me the gift of not only loving and caring for Mom, but of embracing other residents and caregivers.

It was on a different Friday, a year or so ago, the notion of “Cookies for Arden” was mixed, rolled, baked, frosted, and served.

I was departing the city for the weekend. The cookies were essentially a bribe to the caregivers to watch over Mom for the weekend (as if they didn’t already do that with such care).

Regina, an older caregiver, was delighted when I produced the sweet bounty of colorful tea cookies boxed up from Busken. Jillian, Mom’s most consistent caregiver, groaned. She had been trying to lose weight, despite chasing after the ever-active residents and her obligation to feed, clothe, and bath 15 women and men.

When I held out the box, Mom’s hand aimed for one on top. She grabbed several cookies, denting the swirled frosting on each.

Another resident, B., who was charming and cunning all in one instant, beckoned me towards her. “Hey, I’ll pay you if you bring me in a full box for myself.”

“And they better be Busken. Those Servatti cookies are Italian and they’re not made with the same butter as Busken.

B. had insulted a whole forest of my family trees and was clearly wrong in her presumption that Servatti cookies were made by Italians. The bakery was named after a cafe where the cookies were sold in Munster, Germany, in a location near the Church of St. Servatii, an Italian saint. And, the cookies were made by Germans. But B. also made a point. I, too, relished in the Busken cookies over Servatii’s.

Astounded by such reception, I erratically continued the tradition of bringing in the cookies. Always on a Friday, but not every week.

When I finally typed the entry Cookies for Arden in my calendar, I found that I routinely fulfilled my duties.

The same duty my mother once fulfilled on a September day, in 1994, for my marriage to Devin. My mother baked four of my favorite varieties of her Italian cookies. Pizzelles, rolled Italian cookies, nutroll, nut horns. She obsessively placed them in old May Company shirt boxes layered with waxed paper, and transported the goods from northern Ohio to Cincinnati in the back of Dad’s suburban. My entire family relayed the cargo across Fountain Square through Oktoberfest to our wedding reception at the Banker’s Club, ten stories above.

No image better signified Mom’s dedication to cookies as consecration than that of white department store boxes filled with cookies, bouncing along the heads of siblings towards the delicacies’ eventual consumption that night.

No matter where I am in the world – at home with the dog, in Washington Park, in Oregon or northern Ohio, if its Friday, Cookies for Arden pops up on my phone screen. And I smile.

On the most recent Friday, the cue flickered on my screen while I was in the midst of a neighborhood walk through West Price Hill.

“Yes, yes,” I spoke out loud to the phone. “I got it.”

Hours after my shower, I stopped at Busken Bakery, only to find the bakery cases emptied. I was stupefied. “Where are all the tea cookies, where are the sprinkled ones?”

The clerk offered me a morsel of relief. “Oh don’t worry. They’re in the back. We got wiped out today. It was back to school week.”

In a matter of minutes, the clerk loaded up a box with piles of red, blue, white and sprinkled mounds of butter. (I do wonder who decides on the color scheme each week).

When I arrived at Arden, the receptionist spotted the gold container with a plastic window into the world of delight. “It must be Friday.”

I lifted up the box with a broad grin on my face. “You bet.”

As I entered the kitchen of Mom’s hallway, many of the women were still seated around their breakfast table, including Mom.

“Hello, girls.” I announced. “I’ve got cookies.

Miss J., the other Miss J., lit up at the word, “cookie.”

I sauntered over to Miss R., relegated to a corner table filled with wooden abacus like toys, and she took a pink one. “Thank you,” she mumbled and her visage returned to a blank stare.

Miss M., known for crying without tears ( which may be a condition known as pseudobulbar), accepted a green one from me. However, not even cookies could stop someone from overcoming that condition.

Again, Miss B. proposed payment for the entire collection. I politely declined, though she was good for her word and the money.

FullSizeRender (60)Mom finally acknowledged my presence – and that of the cookies. She waved her hands in the air. “Hey, hey.”

I inched towards Mom and presented to her the box resplendent with rainbows. Mom fingered three of them, placed the first one wholly in her mouth, and clasped the other two, again crushing the swirl of icing between her fingers.

I stashed the remainder on top of the microwave, where all the staffers would know where to look for the prize. The hiding place was like the cookie drawer in our home on Lincoln Street. But Mom never stored her good cookies there, only the packaged ones. The good cookies were kept locked away in old Charles’ Chips cans, like the sacramental offering they were.

At the last minute, I swiped a cookie for myself, to join in the ceremony of cookies. It was the closest I came to receiving a blessing that morning.

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Organizing a Mind – Writing Our Lives as Caregivers Workshop

Writing Our Lives as Caregivers 8-2017 (1) (1)-page-001When my mother began her slow waltz with dementia, I was living in southern Ohio, dancing in new love and blending families. Mom still resided up north, near Cleveland. Each time I visited, I had witnessed various versions of a mom I didn’t recognize. Each time I drove back to Cincinnati, I was steeped in the shadows of what was soon becoming, or had already become, the darkening of her memory.

The story of how she got from there to here has been the subject of poems, blogs and novels. But the narrative of writing as a tool to forge a new relationship with my mother is a story that is boundless.

Not long after I accepted (maybe not really) Mom’s stage in life, I had been listening to a podcast about an Alzheimer’s writing circle, begun by a well-known psychologist, Dr. Alan Dienstag, and famous novelist/playwright, Don DeLillo. I was prompted to undertake the same.

One day, sipping coffee with Leigh, a good friend from Loveland, I mentioned the prospect. She dropped a hint into our conversation.” If you ever do that, let me know. I might have some time to help.”

Thus was born Found Voices, a writing circle for individuals with mild to moderate cognitive loss who lived at the Alois Alzheimer’s Center in Cincinnati, a facility renowned for their approach in caring for residents, and also renowned for their costs.

The program director not only welcomed my pilot program. She connected us to the executive director, who promptly paid us well for such work. Little did either know, at the time, I had proposed the program to alleviate guilt I was accumulating, while not traveling the miles to see Mom.

For three years, Leigh and I plotted and planned out themes for our circle: Flying and planes. Summer. School. Baseball. Home. Love.

The participants who were with us those three years became dear to us. Mary Lou, Willhemma, Betty. Dotti. We embraced their lives and their hearts. Whatever life those residents had left to give, they gave their all.

That work that propelled me forward to write about my own mother. (www.findyouinthesun.com) That work became the seed in a relationship with Pauletta Hansel, Cincinnati’s Poet Laureate, whose own mother experienced dementia. And the two of us arrived simultaneously at the intersection of art and life. We have decided to stay there a while.

Last summer and winter, through the Alzheimer’s Association of Greater Cincinnati, we offered sessions for caregivers to write and share their musings and mutterings about their loved one experiencing Alzheimer’s or dementia. Or to write and share about the struggle in their own lives, as they contemplate a future without their loved one or a future that might closely resemble that of their mother’s, like I often do.

The poem below was excerpted from Pauletta’s blog, from our summer workshop.

The Alzheimer’s Association of Cincinnati has been enthusiastic in their support of our work. We will offer three caregiver workshops, two in coordination with the Memories in the Making program, and one trial run with professional caregivers, because they too have stories to tell, especially when they sit in for a family who can’t or won’t.

FullSizeRender (34)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.

FREE workshops August 12, October 21 & February 10th. Sessions begin at 9 a.m. Each session is hosted at a different venue. Check the website for details.

 

This poem is a weaving together of snippets of writing from the participants of Cincinnati Poet Laureate Pauletta Hansel’s workshop at the Alzheimer’s Association of Greater Cincinnati on July 16, 2016. Innumerable residents of Cincinnati are caring for loved ones with dementia —mothers, fathers, husbands, wives. Their experiences of tenderness and loss are all too often untold. Credit to Pauletta Hansel for the weaving. Read more.
For As Long As We Can: Writing our Lives as Caregivers

There is much more hurting than healing
in our lives right now.
An incredible sadness.
Robbed of all this time,
many years, with my mother.
I let go of the colorful gal I once knew;
now her words cut through me like a machete,
leave a hemorrhage like no other.
All this before I even sit down.
I want so desperately to believe
God has a miracle for my dad,
for my beautiful Gina, in beautiful Bermuda—
how I would love to take her again,
away from the tiny world she knows
—and the bitterness of that impossibility.

I hold to every word, to every syllable,
to every streak of black
remaining in Mom’s soft white hair.
I know I am still her baby girl.
I cling to my old memories.
I don’t want it to change, but it does.
But then, a conversation—mother and daughter.
Mom hunched her shoulders
and walked in a silly way, making me laugh.
She doesn’t need that jacket on,
but she’ll wear it anyway,
singing “76 Trombones” and I join in.
It takes her a moment to connect
my place in her room
with my place in her life.
I know she is in there.
She looked in my eyes; I let her love me.
Mom was back,
but not for long.
The touch of your hand—unnerving,
unbounded by time.
At Mirror Lake in Eden Park
the air had cleared,
the colors of sunset filled the western sky.
Tiny blue gills swirled alone in lazy Van Gogh circles.
Heads together, giggling like conspirators
and wishing for more.
I am still comforted by your touch.
Moments—come and gone—
that would not have been
had we not been present.
Engulfing moments unborn, unknown by us.
A salve to put on the wounds part—
the baggage of the day
and my beat-up body,
the parts that broke,
under the pressure of loneliness.
I breathe deep until the next time;
I sink into the car
and think about doing it again tomorrow.
The contrast—the leaving,
the spent memories so different,
so contrary, so final.
Or maybe not final,
maybe this too will change.
I hold her strength, yet I cannot find her.
The joy we had, the hope
and promise of things to come.
I want to believe.
I cling to these prayerful words:
Relax, you are safe.
I will be here for you—not forever,
but for as long as I can.

From participants in Writing Our Lives as Caregivers
with Pauletta Hansel, Cincinnati Poet Laureate, and Annette Januzzi Wick
Alzheimer’s Association of Greater Cincinnati

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What Is a Weekend…At a Memory Care Home?

IMG_2461I 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.

Arden Courts was not responsible for my social life. I handled that fairly well. But they were responsible for Mom’s, and by proxy, that meant me too.

I prided myself in my near-perfect attendance for major events that occurred at Arden Courts. With a flexible schedule and even more flexible husband, I have attended Teddy Bear teas, senior proms, Valentine’s Day dances, chili cook-offs (a risky proposition) and Catholic holiday masses.

My schedule with Mom was somewhat regular, somewhat not, and somewhat dependent on the weather. I charted my time based on if I could urge her outside or not, and how long one of us could withstand the stinky heat. Then, when winter blew in, as if Mom’s disposition was not already thrown into disarray, doors locked and Mom and I were stuck staring at a sun that clearly quit its job in December, January and February.

When Mom first moved to Arden Courts, I diligently attended to her every other day. On weekends, I dropped in twice – most weekends were only two days long. Thus, I had tried out all the activities. I actually watched Cleveland Browns-Cincinnati Bengals football games, complete with popcorn, in the community room with Mom because it was less painful than to view the game with my husband and son, and their pithy Cleveland jokes running in the background.

Family members and friends struggled with ways to stay engaged with loved ones, but I didn’t. I loved singing with the Merry Moores because of their corny humor. I loved Chaplain Geoff and his booming voice. I relished in Friday mornings, because the activity was like Jazzercise, only from the seated position. I called it a Dance Party, but Arden Courts called it exercise. Mom never, NEVER, moved an inch if she didn’t want to, so swinging to Jerry Lee Lewis, just to get her heart rate up, was not going to happen. Still, I was there.

Later, I started missing days on the weekend. Then, I skipped a full weekend, but showed up Monday, Tuesday, Wednesday, out of guilt, obligation and the fact that I had missed out on activities like the luau or race car simulations or Irish dancing.

And I told myself, “Its OK. You’re working too.” I secretly confessed my sins to my rearview mirror, instead of waiting for the priest to arrive at Catholic mass at Arden.

I missed one Mother’s Day. Possibly Easter. A Fourth of July (read more about why that date was important). One Christmas Eve (Try taking out an 80 something-year-old in southern Ohio sleet and see if your loved one speaks to you again.)

Mom didn’t know one day from the next. She didn’t know if she missed hula-hoop class, for which she might be thankful. Or if she skipped communion, which the Eucharist tended to stick in her throat since she had been prescribed a soft mechanical diet.

But I knew. And I knew Mom had never missed a track meet of mine. She postponed cancer treatments to travel to Oregon when Davis was born. Mom gave up weeks to help during my first husband’s cancer diagnosis and in my next days as single mother.

She had a long record of showing up. “Wherever there was the need,” she said. That included toting six-dozen, neatly-boxed Italian cookies to Cincinnati for my first wedding reception, and a repeat of that Herculean effort for reception number two. She knew how to show up. And she filled that space with who she was.

These days, Mom and I have to get creative in how we filled time. Her hourglass rotated unceasingly, as if before the sands of time ran out, the glass automatically flipped when neither of us were looking.

download-2In those moments, time became seamless and nearly weightless, as a scene from Downton Abbey with Violet Crawley, Dowager Countess of Grantham, played in my mind, complete with British accent.

At the dinner table, Matthew Crawley is speaking about a job.

His father-in-law, Robert Crawley, Earl of Grantham, is incredulous. “You do know I mean to involve you in the running of the estate?”

“There are plenty of hours in the day,” Matthew responds. “And of course, I’ll have the weekend.”

The acerbic Viola interjects. “What…is a weekend?”

It was hard to lose hours with Mom, who couldn’t comprehend the dimensions of her space and time. But the sands of time kept rotating, and it was only silly humans who attached actual schedules to our time to love.

It was a Friday. It had been three days since my last visit. Mom was seated outside, in the shade. I tugged at her sleeve and kissed her on the cheek. “Hi, beautiful.”

FullSizeRender (33)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.

Maybe she still knows what is a weekend after all.

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“Baby, You’re a Firework”

(https://findyouinthesun.com/2017/07/06/baby-youre-a-firework)

 

IMG_1680“I’m taking Mom on picnic.” I said to my husband, Mark, who wiped his eyes and blinked at the clock.

It was six a.m. on the Fourth of July.

“But I need your help,” I pleaded to him, plagued by a duty I couldn’t shirk.

Mark mumbled and rolled over until our fluffy dog whacked his tail around in his crate.

I had stopped escorting my mother out of her care home. On a previous escapade, our antics resembled an Abbott and Costello routine as I revolved Mom’s body into a seated position in the car. Our arms in a tangle, I held her at the waist while lifting her leg into the seat well. Mom stared at me with her watery eyes graying around the edges like the soft hair around her temples then fought back with her typical line of questioning. What car? This car? Why way? This way? Which way is this? 

Now, with my husband, Mark, and our daughter, Shannon, I drove Mom from her care home to a nearby community park. Like a tugboat, Mark and I escorted Mom out of the car and along a cracked asphalt path toward a picnic shelter with a roof drooping along the shady side. We were the only park guests other than a teenager who clutched a bulky picnic basket waiting for a dining companion.

As we approached the lineup of picnic tables, I harkened back to my mother’s Fourth of July cookouts.

When my mother insisted on eating outside no matter the humidity, we groaned. Soon, Aunt Joan arrived with baked beans and my siblings and I groaned again. Mom would grill my father about his barbecuing techniques, which always resulted in an added charcoal flavor to the meats and additional wait time. The kids were excused from a table blanketed in gold-checked cloths and instructed to play until called.

Mom’s meals always populated an extra picnic table with a buffet large enough to feed a team of twelve-year-olds. She topped off the spread with traditional angel food cake, frosted with Cool Whip and dotted with blueberries and strawberries to honor the stars and stripes—and her marriage.

Yes, my parent’s wedding anniversary fell on the Fourth of July. Legend had it, my father’s family shoe store closed during the holiday which made the date perfect for a marriage ceremony. As a youngster, I never recognized the Fourth of July as a special day for my parents. Their anniversary was overshadowed by the country’s birthday, neighborhood bike parades, never-ending softball games, and Italian sausage with fennel seeds cooked to a crisp.

As they aged, my parents celebrated by driving the winding road along Lake Erie to buy an ice cream cone at Toft’s Parlor. My mother loved to park with the car’s nose pointed toward the lake. Though Mom couldn’t swim, she was soothed by the endless waves of blue.

Before we sat down to our meager picnic, Shannon wiped the morning dew off the table with disposable wipes from Mom’s supplies. The air was now scented with baby powder and not fresh-cut grass. We unpacked slices of cucumbers, bags of Bing cherries and chocolate chip cookies, and Mom’s cherished peanut butter and jelly sandwich.

Mom singled out the chocolate-chip cookie first, and by habit, picked at whatever food item I deposited on my plate.

I regaled Shannon and Mark with stories about my hometown’s International Festival and parade where my siblings and I ate pierogies, baklava, and stromboli, all in the course of an hour. One year, my older sister, Laura, was crowned Italian Princess, and soon after, Ms. Congeniality.

Mark chewed through his allotted cookie. “How come you didn’t enter?”

I narrowed my gaze. “Who wants to compete with Miss Congeniality?” Besides, I was as far from a princess as any DC Comic character.

Mom nodded along as she consumed her second cookie and crushed the last cherry in her mouth. Her chin, splotched with cherry stain, dropped near the edge of the table and her elbows slipped off the glossy wood paint.

It was time to go.

We reversed course and returned Mom to her nest.

FullSizeRenderSettling 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.

Mom and I had been conjoined for five years. Five years without Dad. She and I had grown together in the way a married couple grew together except I returned to the outside world and she remained in her inner one.

I could finish Mom’s sentences by tone and not knowledge. If we were seated outside within the vicinity of the bird feeder, and dozens of wings flapped around us, Mom pointed to the birds and her voice rose. “Well, on there is something.” I would confirm there was not one, but three cardinals, and noted the addition of a yellow finch.

Mom relished in the lack of activity and stroked my arm. She embraced the summer days not for the rays but because she could touch skin. She slid her fingers up and down my legs, an act which might appear odd to an outsider. But Mom was only admiring the brown skin of her youth.

In five years’ time, I had loved my parents differently. Mom was alive and her breath lived in me. But there was some inexplicable tie that had nothing to do with mothering or daughtering because neither of us had accomplished much in those roles our last five years together, though we hadn’t lacked in trying.

I disengaged my fingers from the ageless beauty in front of me. But Mom grasped my tan arms as if she could feel the warm kisses the sun once planted on my skin.

I straightened up and cradled Mom’s head as she leaned into my soft tank dress and again wove her fingers through mine. My husband and daughter stood behind me and waited a while. I didn’t care. Mom and I had shuffled along too many corridors together for me to rush our goodbyes.

In a flash, I became a conduit for a presence I could not name. The Fourth of July burst through me and filled the moment with fireworks neither Mom nor I could see. But we felt them.

Yeah, we felt them.

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Her Superhero Power

(https://findyouinthesun.com/2017/06/14/her-superhero-power)

 

IMG_1220“Jeannie’s got strong hands,” Randy said. He glanced at my mother’s unshakeable clamp on my wrist while she and I strolled the halls of Arden Courts. Randy was the son of another resident who lived in the same memory care home.

“One day, I helped her outside because she kept pushin’ on the door. She had an amazing grip on my hands.” Randy grinned while he gazed at his fingers and turned over his palms.

I too gawked at Randy’s hands. They were sturdy. They had been built for football.

My Italian mother’s hands had been built for something else.

“I know what you mean.” I cringed and disengaged my twisted fingers from Mom’s hands. “Her hands are her superhero power.”

My mother’s hands had always held my imagination sway. She was a magician with her biscotti and nutroll as her fingers flew across the mixing bowl or dough to cut and roll or press and dust. Mom demonstrated a sleight of hand on par with Houdini in turning flour, sugar, and egg into memories I could not live without.

Her fingers were longer than mine. I verified that fact on numerous occasions. And often, I used that excuse when my pastas and pastries didn’t measure up to hers. In truth, Mom spent a lifetime perfecting her feats, thus qualifying them as superhuman.

My mother’s superhero power did not mean she could close off a teenage mouth with a force field. She was not a shapeshifter unless you counted her six pregnancies. Nor did she move at great speeds unless she was caught in the rain after her hair appointment.

No, Mom’s superhero power had always been in her hands.

When she spanked us, or worse, wielded the wooden spoon. When she circled mistakes on our homework. When she hemmed or altered suit pants or communion dresses. When she sprinkled water and ironed over my father’s work shirts. When she dusted or mopped or rubbed Pledge on her coffee tables to shine the furniture. When she neatly penned the names of every person on her Christmas card list— and it was a long list.

And, given her ancestry, when she spoke or sang.

Long ago, Mom instituted “the death grip” as we orbited the corridors of her care home. She owned a walker, and following a fall or seizure, her therapist often put that walker into practice. Mom no sooner wheeled it front of her, wandered off, and clapped a hand on to the nearest set of arms or the handles of someone else’s wheelchair as a counterbalance to her toddling self.

IMG_0580“Good luck with her hands,” Randy joked as we all parted ways.

I lowered Mom onto a green wrought iron bench and plopped down at her side.

She reached for my hand, rubbed the soft hairs on my arm, and refused to release me to the outside world.

All of Mom’s actions were tied up in her hands. When she avoided the mumbling resident by pushing her away. When she squeezed my hand while I combed her hair because squeezing was her means of communicating frustration. When she pinched at clothes dotted with sequins or cookies spritzed with colored sugar.

Even my mother’s baby doll was not free of her grasp. I often sought out Baby Doll to replace my hands when my fingers cramped from Mom’s crush.

For countless years, Mom used her hands to change the world through baking Italian Christmas cookies and caressing the faces of grandchildren. She held on to those she loved as life tossed her around few curves and now, she clutched the hands of those who cared for her or could maneuver her in and out of the sun’s rays.

When Mom finally lets go, she will liberate what she has prized for many decades—her power to hold on to whatever life has thrown at her, including a sometimes intransigent daughter, and still cling to love.

 

 

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Still Life

Carolina Marches

My life with Mom was not always about Mom’s life.

The day after Memorial Day, she and I strolled outdoors while she was arguably distraught with the landscapers who had left a mess of mulch spread across the sidewalk while sprucing up the garden beds of Arden Courts.

She simultaneously scowled at the young men, while also brandishing her trademark, I’m so sweet, smile.

Then, her eyes locked in on the benches. She marched straight for one in the sun and sat down.

In a little while, Jack wheeled outside to join us. Jack was younger than Mom, was afflicted with Parkinson’s, but recalled Mom’s name and remembered I was her daughter.

We filled our minutes with talk about what constituted the perfect summer day, and also, how to be on the lookout for sunburn. He told a story about his mother, seated on boat for eight hours, who never once considered she might have needed sunscreen and, only later, screeched at the mere touch of her arm.

The activities director joined us, and produced earphones and iShuffles for both Jack and Mom. The implements were part of the Music and Memory program recently instituted at Arden Courts. Mom’s playlist was crammed full of Sinatra, while Jack’s contained Simon and Garfunkel, and there the age difference was apparent.

After the director departed, Jack realized his iShuffle wasn’t working, so he struck up a conversation with me again. Mom’s headphones had been connected to my iPhone, so I let her mind spin on to the tunes on my player while Jack and I conversed.

I must admit to the difficulty of sitting with someone with Parkinson’s. While Jack stumbled over his words, I wanted to jump in and finish his sentence, despite knowing that was wrong, and also frustrating for him. Numerous times, I held back, held my breath and waited for just the right word to come from his mouth and not mine.

FullSizeRender-102The sun’s intensity that morning had been too much for all to bear. I escorted Mom inside to the join the resident cat, and Jack came along, courtesy of the activities director.

As I tried to part ways with both Mom and Jack, Jack asked if I could stay a few more minutes. He had something he wanted to show me. I was already late and promised to track him down when I returned. In hindsight….there was always hindsight.

Jack had been an avid photographer when he was younger and less afflicted. Of all the reasons he offered for his passion, the last two stanzas of the poem stayed with me. Now, Jack and I were forever linked by art.

 

Still Life

He once shot photographs
of marshes in the Carolinas
– before the shaking
and stuttering –
when his hands were steady
and he could capture a still life
instead of leading one.

We are outside
on a sky blue day
breeze whispering in our ears
and the wheels of his chair
roll backwards
into a bed of irises
where the tires are stuck
in a triangular rut.

He asks, Please, help,
and for an instant
his life is immobile
caught in that moment
between harsh cold concrete
and soft landscape green.

Later, I show him a book,
The Art of Ages,
a photographic journey
in black and white
through the 20th century
of people and how they lived,
sometimes in filth,
sometimes in stealth.

I only photograph still life,
he repeats.

He wants his camera back,
won’t mess with a new, old Polaroid,
and wants his computer too.
Maybe his brother will bring it,
but not his son
who he sees every six months.

He wants to know
if I have photos of my mother
when she was younger,
as Mom’s head bobs into her chest
and she snores away
the perfect silence of a summer day.

Some, I tell him. I have some.

I keep mine altogether.
The words sputter from his mouth
as he pushes off toes
and his chair rolls
backwards in time.

I take photographs,
he stammers,
because I get to keep
the life I lived.

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The Rear Window Revisited

FullSizeRenderSometimes, the window is open a crack.

The neighbor, herein the observer, has lived there for five years, or at least, a Bengals and a Reds flag have been flying as long as such.

Glancing up at that window, one is reminded of The Rear Window, where the lead character, played by James Stewart, is wheelchair bound and spends his days looking out the glass panes, suspecting he has witnessed a murder.

Rear_Window_film_posterNothing nefarious happens at Mom’s home of Arden Courts, but there is a life worth watching from above, difficult to define, and best framed by the casement of a second-story window.

That window is one of two windows and they comprise of the only set of panes that lords over the bushy gardens and sparse courtyards contained within white fencing all four seasons of the year.

During fall, many maple and magnolia leaves will have floated through the air, such that the observer would have heard my mother cuss at the crisps and twigs that flutter to the ground and swirl around her feet, causing confusion and also, because of the nature of her perfection, some consternation too.

The winter watch would be particularly solitary, and possibly painful. All alone, the observer would be seated and studying from above, with no signs of life inside the white perimeter, other than the occasional caregiver slipping outside to catch a breath of fresh air or speak quickly on the phone, or the maintenance man undertaking another of his never-ending projects.

The doors are locked from the inside, and no resident slips through those doors lest they slip on the ice and snow and whatever the deluge of rains bring. The winter watch must certainly be a lonely one, where the observer can only contemplate the life inside Arden based on the plethora of switches whose lights flicker on and off through the windows. The observer would know the rooms that were occupied and thus, whose life is still illuminated, whose life has been turned off.

And there were many lives turned off this past winter, many more than in recent past. Did the observer feel my grief for those hardly known, because of the cumulative nature of the deaths, the open-spaced silences and picture boxes next to their door and empty name plates that were left behind? As if sometimes, the number of loved ones left to carry in the external energy, to bring in the fresh pop of People magazines or Busken tea cookies from outside the secure doors were also in decline.

Should the observer examine the course of activities from above, surely spring is the best of times, when the sun blossoms and the irises shine. And slowly, one lone woman emerges, cradling in her arms a small pet bed with a worn stuffed animal. Then, a diminutive man, cheeks sunken in, but still traipsing, still traipsing.

From above, there might be only two residents spotted all day. It is like watching for the rare birds, the colorful ones whose broken legs and hips and wings can still maneuver, but their minds cannot. And to listen for them too, for the rare speech the species might make, marveling at a hue of blue that they don’t remember ever witnessing, only because it was months ago when that blue could have shimmered so bright.

But the doors lock and unlock on the whims of Mother Nature during spring. And in past months, the observer would attest to even seeing Mom pushing at the locked doors, waiting for Spring to say yes, its time to let her back out into the real world. When the doors refuse to budge, Mom stands in the skylights anyhow, feeling the warmth with her hands pressed up against the glass.

And the observer would silently wish for the portals to be unlocked, pleading the maintenance or staff to open the doors. Let today be the day.

As recent temperatures climb, the Black-eyed Susans will soon spread their swath of happiness across an entire patch of garden and welcome summer with all its glory. And that’s when the observer would have counted more rare sightings.

IMG_0857On this day, the observer would have seen Mom and I walk “all the way around” and “all the way back”, less than three-tenths of a mile. But as Mom ages, it’s the movement of her feet the observer counts, and not the number of feet in her movement.

The observer would have also seen Mom with her Dr. “J” beats on, her head nodding to the noise thrumming through her soul. The noise which could only be Sinatra, or she would rather remove the headphones instead.

But this day is difficult, as one favorite resident, “Elaine”, has let go. And observer would also attest, so many lives let go over winter.

 

“to live in this world

you must be able

to do three things

to love what is mortal;

to hold it

against your bones knowing

your own life depends on it;

and, when the time comes to let it go,

to let it go”

― Mary Oliver, New and Selected Poems, Vol. 1

Lovingly, the observer would have noted how the husband tended to his wife’s every need, fed her meals, sometimes twice a day. And the husband made countless jokes with Mom.

“Wow, I didn’t think it would be this hard,” the observer would have heard the husband utter as “Elaine” entered her final stages.

And the observer would have also been privy to the conversation followed.

Mom and I are seated outside, on a heavenly blue day. Tears stream down my face.

My mother looks at me with her trademark furrowed brow.

“Mom, I have a friend who is dying.”

“Oh, well, I think that’s okay.” She pats my knee and smiles.

The neighbor, who could gaze out over the courtyard on any given day and see life, envision a snapshot of the residents’ life to come, would have said the same thing.

For the observer is uniquely positioned to see all that transpires, all the heartache and challenges of loving someone with dementia, of escorting someone on the journey to their death. Absorb all the self-recrimination and self-examination that fight for space inside the heads of loved ones. Check all the movements of the chess pieces that make up this life inside the perimeter of the fenced-in chessboard.

Perhaps the observer, the knower of all things, knew before anyone else that it was “Elaine’s” time.

Did the observer weep, as I did, when Elaine died?

When I am not with Mom, and she is outside, sometimes munching on flowers, or attempting to eat a rock, does the observer understand this too? And creating a crevice between window and sill, does the observer applaud at the music of Mom, a rare songbird, and implore her, silently, to sing on?

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