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.

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.

What Was Handed Down

Devin wanted nothing more than to be a father.  He came from a long line of strong, thoughtful, intelligent and sometimes humorous fathers. He intended to fulfill his place in that lineage.

The Father’s Day prior to Davis’ birth, Devin and I watched the U.S. Open, a tradition in the Wick family.  Davis Love, III, was interviewed on TV that day. Devin had already been lobbying for our baby to be named Davis, if in fact, the baby was a boy. I was so certain I was having a girl, coming from a long line of Januzzi women, first in my grandfather’s family, then in my own.  I thought nothing of it his pleas, I continued to lobby for Dylan (“of the sea”), while the only Davis meaning I could locate was “of David’s son”, and though that lineage was not one to argue with, the connection was only meaninful to a brother of mine who died at birth.

Three months later, my intuition and I lost a bet with Devin, and I birthed a baby boy.  I swear I hardly had to lift a finger in Davis’s first days, as Devin was so overcome with his new son, he hardly let him out of his arms, let alone out of his sight.

Devin went back on the road, traveling for work, each Monday heartbroken to have to leave, each Friday, a bit more weary, but more content, to reach into the crib and pull his son back into his arms.

The routine went on for months, and soon, Davis and I began traveling with Devin, as the three of us could hardly stand time away from each other.  We celebrated Devin’s first official Father’s Day during a rare time at our beach house in Oceanside.   We also celebrated Devin’s birthday. He turned 37, and never looked more radiant and alive than when he squeezed the pudgy stomach of his little boy and threw him into the air.

Months later, his journey as father took on an urgency that never relented, and he was diagnosed with leukemia. For three years, he took on cancer. And for three years, we shared a depth in our lives that few would ever replicate.  And while the low times came swift and sudden, Devin cherished the high times with equal rigor and enthusiasm.  And in times of weakness, he still had the energy and inner composure to sweep up his young son.  And in times of strength, he fully occupied that space of father.

In our innermost conversations, Devin always regretted he had not been home more often during Davis’ early months. Not because he didn’t trust me, or worried about us, but that he had missed out on something extraordinary. A life opening up.  I told him he shouldn’t regret a few months, out of a life of forty years, and yes, he agreed, it was true.

In his final weeks, he left no stone unturned in sharing his narrative with Davis, through words he left behind.  No one has read those words, not even me. They were for Davis. They were part of what was handed down. They were meant to build up Davis when he needed lifting, or had questions about his own constitution. 

There are many ways to be a father, to leave behind a legacy. And his became larger, after his passing, via golf outings, memoirs, remembrances and shoes to fill.  But his passion to go forth, despite all else failing him, will be his lasting. I pray he left Davis directions on how to do so in his little book.

6/15/2014

AJW

What We Embrace

My father held a lot of babies in his time, five of his own, six grandchildren, and embraced three more.  He watched over the lives of his own dogs, Lucky and Blacky, when he was younger. But this iconic photo is my favorite remembrance because, long after marriages, grandchildren and step-grandchildren, he continued to embrace whoever or whatever graced our household with its presence.

We brought Enzo home at Eastertime. Actually, we picked him up from the breeder that weekend, and as the breeder lived near my parents, Enzo spent his first weekend as part of the family in Amherst.  He slept soundly his first night with us, as if he already knew the love in the house would keep him safe.

I thought of this photo again, after I moved, and I was unpacking boxes of miscellaneous cards that I had randomly stored in a lower drawer of my desk.  I was delighted to find a gift card for a pedicure, which I used promptly following the move, and a certificate to our favorite taco bar, which I was surprised no kids had snuck out of the house to use.  But had I lost any of those in the move or my mess, I would not have shed a tear.  What I treasured rediscovering was a card from my father.

My mother was the sender of greeting cards.  She wrote letters, and cards.  And more letters and cards.  My father did not.  He was a man of few words and even lesser actions when it came to cards.  On special occasions, if one of the kids was making a run to Drug Mart to buy a card for Mom on Mother’s Day or their anniversary, he always pulled us aside to ask if we would buy one for him to give to Mom as well.  We were always happy – forced- to comply, as he was also the procurer of tampons for us during his own Drug Mart runs.

Several years ago, I made a challenging visit to my parents. We were going in search of long term housing for their final stages of life.  My mother had begun her descent into dementia, and my father’s Parkinson had been diagnosed.  Managing those diseases and finding housing to accommodate would be no easy task.  The week was filled with heartening realizations and even tougher words.

I returned to Cincinnati, and fell ill, with a relentless cold.  In subsequent conversations with parents, they learned of my health challenges, and no sooner did I hang up the phone, and a greeting card showed up in the mail.

I was surprised to find my father’s handwriting on the envelope. And even more astonished to view the card that was sent displayed his handwriting on the inside.  The card cover showed a photograph of a Cavalier King Charles, pouting in a stance closely resembling Enzo. Inside, the card read, “Dear Annette,”  (So formal, because he always called me ‘Net Marie.), “I thought you enjoy [sic] this card.” Again, the grammar was not surprising, as he was a man of few words. “Thanks for everything you do for me and mom.”

While the exterior of the card showed my father’s humor and creativity, the interior, the sentiment I treasured most. A man thanking me for supporting the alteration of the course of his and my mother's life. While no one ever rested peacefully with the eventual decisions, I rest peacefully today in my lasting memories of a father who embraced whoever and whatever crossed the threshold of his life.

6/15/2014

AJW