A Scuffle with My Mother - And a Poem

A Scuffle with My Mother

Yesterday, I got into a fight with my eighty-six year old mother.  You ask how is this possible and I say, its completely so.

I had an hour between meetings near her care home and the sun was a glorious golden orange for the afternoon. My mother loves the sun, and in my heart, I know it helps lighten her attitude.

I found her exiting her room, following lunch and a clothing change by one of the caregivers.  As she approached me, we exchanged hello’s, she with faint recognition of me. Since she was already making forward progress, and she gets easily distracted, I immediately coaxed her towards the door to the courtyard.

“Let’s go outside, Mom.”

“Why?”

“Why? To get some sun?”

“But I don’t want to get sun.”

“But you love the sun.”

“No, I don’t.”

Exasperated, but determined, I knew her time in the sun was waning, as colder weather approached and she tended not to venture outdoors at the slightest chill, not understanding she simply needed a coat or sweater.

She grabbed my pinky finger and began to twist it around. Her face curled up in snarl.

“Ow. Mom that hurt.”  I scolded her.

“Well. Well,” she replied with little knowledge of the pain she had inflicted - and why.

“Oh, Mom. I know you hate me telling you what to do, but just trust me.”

And suddenly, her eyes brightened.  “Yes,” she answered. She followed me obediently towards the door, though it wasn’t clear which she was responding yes to, my bossiness towards her or her trust in me.

I maneuvered around her body, as she still had my hand in a death grip, to lead her to a chair in the sunshine. She no sooner sat down, relieved, closed her eyes and muttered, “Oh. That sun today is something else.”

Yes, it was something else. She was something else. For between those moments of loving each other, we both fought for control, we were both something else.

An hour later, I left her seated on the chair, snoozing with glass of strawberry Gatorade in hand, wondering if she would spill it on herself when she woke.  I didn’t care. I will lose this war with her dementia, but at least for the day, I won a small skirmish. She, in the glorious sun, won a little battle too.

This piece was inspired by the declining number of days in which I know Mom will be able to sit outside at peace.

Opus Dei

Her head drops

amidst the blue screen of sky,

as if her crown has landed

on a white pillow of down.

Eyelids closed,

she is the picture of infant innocence

even past eighty-six.

God has painted her as art today,

a stained glass creation.

Close up, diamonds of skin

are flushed in flesh.

Her lips have been brushed with a faint rose.

Her ears softly fold over pixie-cut

gray hair. Brown lashes and brows -

near invisible lines -

He has deftly touched

to define what she can still see.

Occasionally, His masterpiece

wakes to the chirp of a bird

then returns to slumber in sun,

his final touches glazed in bronze.

She will never be more beautiful

than in this

moment of mastery,

subject of the maker’s brush.

Alive Inside: The Movie and My Mother

Musis is…truth (Kerouac), magic (Rowling), the existence of God (Vonnegut), the food of love (Shakespeare).  Music is the self still alive, as evidenced in the documentary Alive Inside.  Alive Inside is the story of a social worker, Dan, who uses music via personal music players, to awaken the inner lives of those afflicted with dementia or other diseases whose existence is limited to a nursing home or long-term care.

From our earliest beginnings, scientists have discovered patterns in a baby’s cries which mimic those of a mother’s voice. The power to imitate, to repeat, to be moved. That is music.

I have spent hours with my mother, seated at her side in her care home, where the strains of Tommy Dorsey, Billy Holliday, and her beloved Frank Sinatra float between us. I can say with certainty, a surreal recognition glides over her face, whether she is at rest, in the sun, or in bed, recognition far more powerful than recognition of my face, or that of my father in their wedding picture. It is a recognition of self. 

When Dan interviews one of his clients and asks, “What is it you don’t remember, or would like to remember,” she replies, “Who I was, after I was a young girl.” Dementia, Alzheimer’s, old age takes many back to the far reaches of youth’s shore, but there are lost years that cannot be accessed by a photograph, a spoken memory, even a daughter.

As outsiders, we don’t know which years are the lost ones. But we can rule some out, speculate about others, and use music to zero in on a few.

Were I to develop some kind of dementia, and my spouse or children planned to place a music player to my ears, they for certain would know to play The Boss, right?

But would they know to play ZZ Top, who I saw in concert in college, with my ultra-conservative roommate Janice, and we played air guitars to Sharp-Dressed Man, or would they play Robert Palmer, for when my sister and I dressed as the Palmer girls one Halloween during my first year living in Cincinnati?  Would they select Joshua Kadison’s Beautiful in My Eyes, from my first wedding, The Servant Song, from my second?  Would they know, when Seger’s Against the Wind plays, the song conjures up memories of high school track, and from then on, every life challenge I ever met and surmounted?

Or would they play Sinatra, as homage to my mother, and the times she and I journeyed together and separate, seated in the sunshine on worn wooden benches, each of us lost in a world our minds created?

Dan, the social worker has a worthy goal for his Music and Memory program, placing personal music players inside 16,000 nursing homes across the U.S.  I don’t know if this goal also includes long-term care centers such as my mother’s. And there are plenty of logistical challenges to this, yet centers across the U.S. are implementing this program every week.

A few weeks ago, I told the activities director at Arden Courts, Becky, and the corporate nursing director, Jesse, about Alive Inside.  I had been an early Kickstarter funder for the movie, despite receiving no scrolling credits at the end.  But I invested because I believed in its mission. I had witnessed it firsthand.  I cheered when the movie was accepted at Sundance, and said, “Of course,” when Alive Inside won the Audience Award.  I badgered the producers, When will you come to Cincinnati, because the movie had been out since July and only now, has it appeared in a local theatre. Columbus got the screening before Cincinnati did.

Becky is now looking closely at the program, seeking funding and discerning training methods.  Offering to assist in these efforts, I have spurred her on. After all, Becky is the person who approached me, about bringing Matt Snow, Cincinnati’s Sinatra, to Arden Courts for my mother’s birthday, while throwing a Spaghetti Dinner party for residents.

I am a bit young, by demographics, to be the daughter of a woman of near 87.  Many family visitors are ten to fifteen years older, and have not been exposed to technology that can make an impact in the life of someone with dementia.

Even if Becky does not succeed in implementing the program, the next generation of family caregivers, those in my age bracket who can maximize technology and whose parents are approaching the age in which they might not access music on their own, will stimulate continued development of programs like Music and Memory.

In ten years, Dan’s personal work will still continue to inspire the likes of me, as I sit, grounded with my mother, and select just the right song for her.  She has a CD player at her bedside, and one of my favorite past times, when she doesn’t feel like rising from bed, is to play Louis Prima because he tosses Italian phrases into his music that she repeats, and understands. Another unrealized benefit to music is that music in a foreign language reawakens another part of the mind, in particular for my mother when her parents spoke Italian. I’ll also play a little Mario Lanza, just to throw her a curve. She laughs when I sway at her bedside, and some days, she will join me. It is the sweetest of times.  

I have specific playlists for Mom, and make unwise use of Pandora, which is why I have more data usage than the rest of the family. I load up YouTube videos showing Frank actually singing with the Rat Pack, or with just Dean Martin, and a drink in hand. When Mom visits our home, Mark cues up Sinatra on our sound system so that “Frank” is playing before she walks in the door, and she knows is she in a home that embraces who she is.

I can’t make my mother’s life perfect, and despite her best efforts to do so when we were younger, it never was.  Sometimes, I neglect to make an appointment for her haircut.  She has gone without matching socks for a few weeks, because I forget until I arrive, then am too tired when I leave to go shopping and return.  She doesn’t drink purple Gatorade, “tastes funny,” but I show up with wrong color anyhow.

But the days we dance and sing and she nods to strains of Sinatra are the best days, when I leave weeping and beaming. Tears because I am so desperate to know that person in her lost years. Smiles because in some small way my mother has found, or recognized, herself as being whole in those moments of music.

When the movie was over, I walked out, and the only words out of my mouth were, “Well, at least I didn’t cry for all 78 minutes.” 

The stories were heartwarming and heartbreaking, but I cried only with joy. The one small gift I can my mother over and over, is the gift of song, when my mother’s physical welfare takes a back seat to the well-being of her soul.

Kay in Your Corner

Kay in Your Corner

Last night, I had the unique opportunity to sit next to Kay Geiger at a PNC dinner. Kay is president of PNC Bank, Greater Cincinnati and Kentucky, but she is so much more. We were seated in a square, which is as close to a writing circle one can get in a restaurant’s private dining room. The evening began with a brief introduction by Kay where she emphasized how Cincinnatians had a tendency to be humble, but now was not that time. She skillfully facilitated a sharing by all at the table, inviting each PNC employee to speak, then engaging with that person on the topics the employee touched upon. Kay went around the table a second time, and invited each guest to do the same. I was the only writer, in a room full of suits and C-suite officers, and one of two female guests.

And yet, because of her ability to honor each voice, and connect with each guest regarding his or her narrative, I felt comfortable with making jokes about my husband being excellent at putting people to sleep (he’s an anesthesiologist), and sharing details of my life, as new city resident, empty nester (soon, soon), and writer.

Over the past months, we have been engaged with PNC employees encouraging us to move our accounts to PNC, and we have listened for so many reasons.  But the primary reason, is because they are everywhere in the community.  Seventy percent of their commercial banking is family-owned business, along with the Krogers of city.  They sponsor more events and non-profits locally than I have room to name.

Over the course of the past year, Mark and I had the opportunity to attend the ballet, the symphony, Ensemble Theatre, Washington Park and Fountain Square events, Reds games and non-descript fundraisers. And each time, we were surprised that PNC was a major sponsor. 

After meeting Kay, I am no longer surprised.  She is generous with her time and attention. She crosses the boundaries of market interest rates and Cincinnati Symphony performances with the ease of a classically trained ballerina.  Cincinnati is a vibrant community because of PNC, their philanthropic and community-minded work, and Kay Geiger.

I must admit to some nerves calmed only by a glass of pinot gris, as I sat to dine with one of the most influential women in the city.  But our conversation ran the gamut from working at Star Bank (she did too), to affordable housing, how best to partner with OTRCH and maintain diversity in Over-the-Rhine of housing stock and people, to the Ray Rice situation and support of the YWCA, and how it is time for women to step up.  I thought, we can no longer wait on the old NOW, NOW is us. 

She looked out across the room, and saw, as I once did in college courses and early banking days, white males, and talked about how each day, she asks her leadership, what are we doing to become more diverse, to lift up others to become a part of the banking world.

She then began asking ME about transitioning into the city, how did we repurpose our home. She and her husband were about to the do the same, inside another Civil War era home. And of course, the topic of writing a book came up as we talked about Women Writing for a Change, and a writer-friend we had in common.  Kay noted she had the title for her someday book, and I said, “It’s the best place to start.”

At one point in the evening, Mark leaned over and asked Kay, “How many Kay’s are there of you, are there like six, because you are everywhere.”  She refuted the notion, saying, “No, cloning is still illegal.”

I left the evening with pride not only in becoming a PNC customer, but also in becoming a woman of Cincinnati.  I left with a sense that I could achieve so much more. I left wishing there were 100 Kay Geiger’s in the city, knowing how much women could accomplish with just one Kay in their corner.

9/11/2014

AJW

The Longest Day – Why Not Be Idle?

Social media has been abuzz with The Longest Day Campaign, sponsored by the Alzherimer Association, in conjunction with June’s National Alzheimer’s Awareness Month.

“On The Longest Day, teams around the world come together to honor the strength, passion and endurance of those facing Alzheimer's with a day of activity. Held on the summer solstice, June 21, 2014, this event calls on participants to raise funds and awareness to advance the efforts of the Alzheimer's Association.” – Alz website.

One participates by selecting a hobby or activity that one loves, or the hobby of someone who suffers from dementia or Alzheimer’s and encourage others to join in the fundraising. Then to celebrate at day’s end.

One of the concepts of The Longest Day stems from the notion that when you are with someone with dementia, an hour can feel like the longest day. When you are caring for them, feeding them, or simply sitting side by side with that person, time slows to a crawl.

And while the day promotes a day of activity to honor the endurance of those with the disease, I advocate a time of sitting still.

My mother suffers from dementia. When I visit her, I often refer to my time as an “A day” or “B day.” The term comes from my son’s high school schedule. His best days were often “B days,” shorter, more creative classes and teachers, more breaks. The “A days” were longer, with more grueling courses.

So if Mom is having an A day, it is a time filled with anger, angst, anxiety, aggravation, and anything in between.  If she is having a B day, she is boisterous, beguiling and beautiful.

I tell this to my friend T, whose sister suffered from a stroke and dementia. “You never know what you’re gonna get, when you show up to visit,” she agrees.

“Its true. You don’t know when you set foot in the door, if its an A day or B day.  And they sometimes alternate within the duration of one visit.”

On the days when I say to Mom, “Lets go for a walk,” she will ask, “Why?” and refuse. Then, I might suggest the same minutes later and she will rise.

But many times, she doesn’t want me telling her what to do. She has caregivers for that, and they actually leave her alone more often than I do. She wants me to sit. To hold her hand. To look her in the eye.

And to do so takes not a day’s worth of activity, but a moment of intention. Of setting aside the phones and emails, and what you think your mother needs. A moment of stillness.

Recently, in our conscious feminine leadership gathering, we discussed the notion of idleness, and one participant Phebe noted she often acted as if she were talking to her dog, when she reminded herself to be still. “Phebe, sit,” she would mutter to herself.

Idleness is not a sport we as a culture excel in. It is also something that we cannot raise funds for.  But it is a key aspect when raising awareness about dementia/Alzheimer’s.  Because when we are idle, we see the little moments. We see around the edges of the person in front of us. We see all of them, not the person they used to be.

I recently brought my mother to visit at my new house. After lunch and some time in the courtyard, I escorted her to the car, so I could drive her back to her care home.

As we sat at a red light, beyond the intersection rose a billboard for Three Olives Vodka, with a photo of Clive Owen as pitchman.  It was a long light, and as I turned to check on Mom, she was smiling back at the photograph.

“Mom, what is it you’re smiling about?  What are you seeing?”

 “He has a lot of light around him,” she said, pointing to rugged face emanating from off the billboard.

“Light? What?”  I didn’t get it, but she kept grinning ear to ear.  I just wasn’t sure what she meant by it. Even as I turned the car in the opposite direction, she craned her neck to get one last glimpse of Clive.

Now, I too, find Clive attractive in a British sort of way. But he in no way resembles any of those blue eyed handsome devils that Mom is famous for stalking, whether she knows that person or not.  He doesn’t even have blue eyes. His eyes are green, which might be somewhat difficult to distinguish in the billboard.

While I saw only dimness in the ad, she saw the light around the edges of his face.

The moment passed, and Mom began reading green highway signs once more. But my mother still saw light in something as simple as an advertisement, and I need to be mindful enough to honor that.

I will probably visit my mom tomorrow.  I will probably give her a few instructions that she may or may not have wanted to hear. I might comb over her hair and cause her some aggravation. I might hug her, and ask if she will hug me back.

But the best awareness I can raise is through my own consciousness.  Afterall, a wise boater once told me, and reminds me often, “Idle moves the boat forward.”  And in the slippery waters of dementia, that seems like the best course of action.

Author’s note: Remember Alzheimer’s is just one form of dementia and not the other way around.  View this page and you will see from a marketing standpoint, that dementia and Alzheimer’s are used interchangeably, mostly for the benefit of convenience or branding. http://act.alz.org/site/TR?fr_id=5860&pg=informational&sid=18343. Of course, this is another issue for another time.