Thursday, October 02, 2014

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 InsideAlive 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.

Thursday, September 18, 2014

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.


Friday, June 20, 2014

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. Of course, this is another issue for another time.

Sunday, June 15, 2014

What We Leave Open

The week Mark and I got married was in the midst of a humidity tidal wave.  The evening before the temperatures had reached into the 90’s and we were grateful that the high temperature the day of our wedding was only supposed to reach 88 degrees.

Second weddings are not typical weddings.  We held a party over an entire weekend, to accommodate four families, and friends from many walks of life. We had hired a photographer to capture the formal shots, and relied upon the good intentions of our friends to do the rest. Ironically, the only photos that remain from that day are those of the photographer.

He captured Davis and Mark in this photo, as they were putting on their flowers. They were in a back room of the church. I can’t even say for certain where I was, so caught up in the moment.  Before he left the house, Davis had muttered, “This is the most dressed up I’ve ever been.”  And it would last that way for years.

As we were in the midst of raising three teenage girls, the relationship between Mark and Davis was not always apparent. No one worked at, as we were busy working at “all of it.” 

When it came time for Davis to enter high school, he was given the option to look at Moeller.  Mark had graduated from Moeller, as had his two brothers.  There was no legacy conversation, but Mark sat Davis down, and relayed to him what he thought the benefits were, at least from his viewpoint which was by then, how shall I say, old.

At any rate, that conversation was the only talk the two had about Davis attending Moeller.  Davis never said another word about his intentions, until the time arrived for a decision. Some of this may have been due to teasing at his public school based on his decision, some due to the fact he had already made up his mind, and would tell us in his time.

He chose Moeller. And I was always grateful that Mark had not influenced him, or the outcome. Davis would succeed and fail at many endeavors, but would only do so, by his own choosing, and not some legacy he thought he had to fulfill.  

Davis graduated, only weeks ago. From Moeller. The two, over the course of four years time, shared many stories about teachers, history of the school, history of the school sports programs.  But Davis made his own way there, in no small part, because Mark allowed for that to happen. Davis never had to be anyone’s son, though he enjoyed being Cheryl’s brother, with the French teacher. 

In the past two years, the girls migrated many directions and Davis remained in the nest.  During our first Friday in the new house, National Donut Day, no less, I had taken Enzo out for a walk. I received a text from Mark. “We are going to Holtman’s. Want to come?”  I was right around the corner, so I came in the back, took the dog out the front, and found my two boys, waiting for me, mostly for donuts.

We walked the two short blocks to the donut shop.  I chose to stay outside with the dog.  The line was long, and occasionally, I peeked inside to watch the two of the them, Davis now somewhat towering over his stepfather.  They were eagerly pointing at various donuts, the likes of which can only be imagined, or paralleled to VooDoo donuts.

The two years alone with Davis, without the girls in the home, I was grateful to have witnessed many father-son moments transpiring between Mark and Davis. I still crack up, when Davis calls him, “MM” because no other name seemed quite right at the time. And none still does. And I am often the target of their teasing, which I am quite comfortable in taking, when I know it is creating a bond between them.  And while Davis still has a long way to go in adopting ND football, though Mark is coming along quite nicely as a Duck, the two of them still count down the days to the beginning of college football season, and the arrival of a certain someone’s rants about ND.

I have only gratitude that Mark never treated Davis any different than he treated his birth daughters. Mark had been parenting many years before I came on the scene as parent, and I am still learning from him, how to open up a heart.