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What Makes for a Good Day?

Mom CatchlightI hovered behind Mom’s chair, sticky with fingerprints, while she sat at her table for four in the kitchen at Arden Courts. 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 did for many years with tatted pillowcases and Dad’s shirts, but the napkin wouldn’t lie flat.

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

Dr. Gwande practiced endocrine and general surgery and wrote a New York Times best seller, On Being Mortal, Medicine and What Matters in the End. I never read his book. Anyone who has lost a loved one, especially out of chronological order, can tell you what matters.

But he had returned as guest on a favorite podcast, and the question, What does a good day look like, a question that transformed his practice, now played like an earworm, one worse than any Sinatra tune circling through my brain.

Leftover lunch scents of turkey and gravy wafted around the room. I swung my body around to peer into Mom’s field of vision, a field that was rapidly diminishing. This summer, Mom began to point her nose down, most often when she walked. I first thought her back was giving her fits, or at 4’ foot 7”, Mom had shrunk again. In dementia, loss of peripheral vision was common. It was her perspective that had been altered, not by choice, but by disease.

“Hi,” I said, closing in on Mom’s face, my nose taking in a whiff of lavender and almond oil emanating off her skin. Thursday was her shower day. She remained seated, staring at another resident, or outdoors, which she couldn’t access due to frosty conditions.

“Hi,” I uttered again and adjusted my stance. My foot slid as I smushed leftover stuffing Mom must have dropped on the floor while pinching a portion with her hands.

“Hi.” Mom’s tone was flat.

I reached out to encircle Mom in a hug. She pushed my arm away and my purse slipped off my shoulder and into the stuffing.

“What do you want with that? Oh go on. Don’t do that. You should when you….”

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 continued with her outburst. “No, I mean that one.” She jabbed a finger into the air, silently accusing another resident who had just dropped a plastic puzzle on the floor, the pieces shattering the silence that was even more jarring during meals. Mom was always quick to reproach another resident of looking, speaking, eating, or living.

I had rushed over to see Mom, in between a rash of meetings and car appointments, diligently plotting out my route to include a stop to see mia bella. 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 have priorities beyond just surviving. He recounted a story of a woman laying on her deathbed, a woman who would die 48 hours later, who asked if she could take her grandchildren to Disney World. Of course, it was too late. The medical community had missed that ask by looking at what the doctor could fix and not seeing what else could support her well-being.

Dr. Gawande defined well-being as: the reasons one wishes to be alive. Its been five years that I have overseen Mom’s care. Longer that she had been hidden behind the haze of dementia. And over the course of blog posts, laughter and tears, I wondered what were the reasons Mom wished to be alive – other than to torture me.

On occasion, I entered into Arden Courts and was forewarned about Mom’s mood, only to find her in a lighthearted disposition and joking in her own way about playing kickball inside, while another resident screamed out, “Kickball is outside game.”

Other times, I walked into that same setting, only to have my hopes dashed and hands too, at the hands of my mother, who, like a Ferrari, went from stillness to scowling in ninety seconds.

And so, my mother was mortal. We all were, but she was a lot closer to dying than some others her age, mainly because of her dementia. But she was not dying in the traditional terminal sense. Therefore, 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 through the feat of modern travel, medications or video transports?

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 that will not explode when slipped gingerly into the water and pushed ever so slightly under the roil and then lifted out with slotted spoon and cuddled with homemade sauce?

Those would be events happening at a conscious level for which Mom would have no grasp of what joy or meaning it might bring for her.

I don’t know what a good day looked like for Mom. She might grin at the smallest indiscretion of someone else, while also snarl in my ear if she’s left out of a conversation or could not follow the line of thinking due to her hearing or inability to comprehend.

I inserted myself back into Mom’s life and swung her chair from beneath the table. She yelled some more. She did this thing, where she grabbed my hand and squeezed as hard as she could, and grit her teeth, something akin to a grrrr….. was emitted from her vocal cords.

Like a mechanic jacking up a car, I raised her up through carefully placed shoulder anchors and footholds. Slowly, she straightened. One foot followed another until she was erect and on her way.

She wanted to walk. Her legs picked up speed. We traversed .3 miles that afternoon.

What does a good day look like? For eight hours with one caregiver, it looks like one thing. For another set of eight hours with another caregiver, it looks like something else. 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?

My mother and I didn’t know each other well. I wasn’t the kid chatting up a storm on the other end of the phone line. I was the kid who challenged her beliefs or reported in for duty, and hung up.

At least eight years ago, I sat at the oval kitchen table with Mom and Dad who filled in an outline of sort, of their medical background, and posted it to the refrigerator. It was called a File of Life. But it should have been named the File of Death. It so succinctly catalogued how one was failing, and not living.

And there was no line on which to answer, “What does a good day look like,” for someone whose mind would eventually turn blank.

Our language around death and dying and dementia dramatically altered in those intervening years. Only Mom and I could not take full advantage of the advances.

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

Mom moved me around, using me as her walker, as I stumbled backwards. She warned me about backing into a fake streetlamp. “Here. Here,” she called out. ” Translation: look out.

Finally, I had the gumption to push back, caught as we were in tug of war. I was her gravitational pull and she moved towards a bench while shooting more invectives my way.

I plopped her 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 shaggy pillows. Her feet, in black Velcro shoes, remained swinging.

I kneeled in front of her and slowed her feet to standstill. I placed my hands on her knees and looked into her face, as if asking the Pope for forgiveness.

“Mom, I’ll see you later.”

“What’s that sweetie?” So coherent. And did she really mean sweetie? And was the 90 minutes of haranguing worth the one moment of this adoration?

Well, Dr. Gawande. It was.

There will never be a good day for Mom and me. But there will be stuffing stuck to my winter boots, napkins she will keep trying to fold, fingers – hers and mine – cramping from loss of blood, a few juicy swear words from the mouth of a woman who once sang in a high contralto like Kate Smith. And if the sun ray’s touch her face at just the right angle, out of the corner of her eye, she’ll glimpse a reason for being alive.

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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

Maybe because it was the Fourth of July. Tears streamed down my face as I attempted to disengage from the ageless beauty in front of me. But Mom grasped my tan arms, as if she could feel the warmth that once emanated from off my skin.

IMG_1680Five days earlier, I had stopped to visit Mom, nagging her until she rose to walk outside and sit in the courtyard on a billowy summer day. I queued up all her music, cut and filed her nails and plucked a few chin hairs, at least the ones she would allow me to pluck, until she swatted my hands away. And, I watched the clock.

Tick. Tock.

My husband and I were traveling to Chicago to see Hamilton and attend a friend’s daughter’s wedding. The list of to-do’s back home couldn’t wait. I needed to finish the laundry before heading off to the FC Cincinnati vs. MLS Chicago Fire match that night. I didn’t want to be soaping and spinning past midnight.

So, I did the one thing I abhorred. I left Mom in a hurry, as if everything else in my life were more important than that moment.

Fast-forward to the Fourth of July.

“I want to take Mom on picnic,” I said to Mark. “But I need help.”

I had stopped taking her out as frequently as promised or used to when she was more lucid but would forget, but was as least lucid enough to understand. On a previous outing, our antics resembled an Abbott and Costello routine as I tried to revolve her body into a seated position once again. Our arms tangled as I held her at the waist while simultaneously lifting her leg into the seat well. “What car? This car? Why way? This way? Which way is this?” Valid point. Score one for Mom.

Mark, our daughter, Shannon, and I drove Mom out to nearby Champlain Park, a small Deer Park community park. Thanks to Shannon’s GPS guidance, she instructed us towards a separate entrance that would not require Mom to step over railroad tracks amidst mountains of gravel.

Mark and I tugged Mom up a cracked asphalt path to where we could sit beneath the picnic shelter. We were the only park guests for some time, other than the teenager holding a picnic basket, waiting impatiently for a girlfriend finally dropped off by a parent.

Approaching the long lines of picnic tables, I harkened back to my mother’s Fourth of July cookouts, where we lamented the presence of Aunt Joan’s baked beans, my mother’s insistence of eating outside no matter the humidity and her constant inquisition into my father’s grilling, uh, techniques. Mom had always spread the gold-checked cloth across freshly-painted tables and cooked enough to feed a team of twelve-year-olds. She had topped off the meal with her angel food cake and Cool Whip American flag, complete with blueberries and strawberries honoring the stars and stripes.

Mom and Dad’s wedding anniversary fell on the Fourth of July. Legend has it the shoe store was closed and the holiday made the fourth the perfect day for a marriage ceremony. As a youngster or teen, I had difficult recognizing the Fourth of July as a special holiday for them. Their anniversary was overshadowed by the country’s birthday, by neighborhood bike parades, long ball games and burnt Italian sausage, and by viewing of the Wimbledon matches, coupled with a few tennis matches with siblings.

Over the years, they celebrated in their own style, or probably just drove along the lake to get an ice cream cone at Toft’s Dairy Ice Cream Parlor. My mother loved to look at the lake. Though always afraid of immersing herself in the water because she couldn’t swim, she was certainly soothed by endless wave of blue.

Shannon wiped the table with the only tool at our disposal, 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 Mom’s cherished peanut butter and jelly sandwich. There was only one sandwich because I had run out of jam.

Mom successfully ate a peanut butter cookie first and picked at whatever food item was on my plate, which I had strategically planned for by pitting cherries in advance, splitting them in half and placing them on the side of my plate closest to Mom’s fingers.

I regaled Shannon and Mark with stories about Lorain’s International Festival and Parade. How we used to eat pierogies, baklava, stromboli, all in the course of an hour. One year, my oldest sister, Laura, had been named an Italian princess as part of the festival, and soon after, Ms. Congeniality.

“How come you didn’t enter?” Mark asked.

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

After consuming her second cookie and the last cherry, Mom’s head began to droop. She was bored. She nearly feel asleep on the picnic table as her chin dropped close to the edge and her elbows slipped off the glossy wood paint.

It was time to return Mom to her nest.

FullSizeRenderSettling her into an armchair with a tufted cushion in a cozy corner in the sunroom, I tried to leave but the tears kept me rooted as if they were essential to watering that family tree.

Mom and I had been together for five years. Five years without Dad. In that timespan, Mom and I had grown together in the way a married couple grew together, except that I returned to the outside world and she was left with her inner one.

I finished her sentences by tone and not knowledge. For instance, if we are seated outside, within the vicinity of the bird feeder, and there are dozens of wings flapping around, Mom indicates the bird in the feeder and her voice rises. “Well, on there is something.” “Yes, Mom, there’s the cardinal, there’s one, two, three chickadees (she likes that word), and a yellow finch.”

When Mom wants to sit in solitude, she strokes my arm. She embraces summer, not just for the rays, but because she can feel skin. She runs her fingers up and down my legs, which yes, it’s rather strange, until you know Mom is admiring the brown skin of her youth. We hug, and our cheeks rub up against one another and, after her shower and a few swaths of Oil of Olay, her skin is more supple than mine. Some days, she will reach for my arm and push the sleeve of a sweater or sweatshirt up to my elbow, so she can touch skin to skin.

In five year’s time, I was no more patient now than I had been then, but I was wiser. I took my cues from her. Oh how hard that was for a Januzzi woman to take her cue from another Januzzi woman.

While I had been in Chicago for the long weekend, I missed Mom terribly. It was odd the ways in which I loved my parents differently, and how I carried Mom in my heart. Because she was still alive, her life force still lived in me.

Dare I say, I felt something akin to marriage to this woman. But it was something more, some inexplicable tie that had nothing to do with relationships or mothering or daughtering. To be honest, neither of us had accomplished much in those roles our last five years, though we hadn’t lacked in trying.

I straightened up and cradled Mom’s head as she leaned into my soft tank dress and wove her fingers through mine. My husband waited behind me, my daughter in the car. I didn’t care. I wasn’t going to ruin this goodbye. We had shuffled along too many miles together for me to rush this time.

In that flash, I became a conduit for a presence I could only attribute to Dad, and the Fourth of July burst forth through me, filled with fireworks neither Mom nor I could see. But we felt them. Oh, yeah, we felt them.

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