Fly on the Wall

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What would a fly on our apartment wall make of a day watching my husband and me? How would we—the caregiver and the man with dementia– look to an observer’s eyes?

The moment I awaken and sit up, I hear my husband say, “Good morning, dear.” I mutter “Mornin’” or give a silent wave in return. I don’t transition well from sleep to wakefulness, Fly. I’m not a cheery, chirpy robin, first thing. To me, it feels like my husband needs to know that I know he’s there, from the second I open my eyes.

But how does this look to you, Fly? Do I appear grumpy and unkind?

During the day, there are times I avoid meeting his eyes. I make him disappear by withdrawing my visual attention. My excuse for this behavior is that I crave solitude, so I don’t acknowledge his presence with my eyes. Multiple times a day, though, I do look up and he’s watching me. I have an audience all of my waking hours, Fly. Even when we’re not in the same room, he’s listening. If I drop a book or make a loud noise, he comes trundling up the stairs. “Are you all right? I heard a noise.”

Fly, I know he does it because he’s so anxious. He depends on me for everything. Am I being mean in the way I respond, Fly? It’s just too much sometimes, him clinging and watching. I get impatient, Fly. You’ve heard my tone of voice. I’ve heard it, too, and I feel guilty. But I’m not a saint, Fly.

In my defense, Fly, you do realize that we’ve been shut up in this apartment with only each other for over two months now. Am I making excuses?

He’s an old man, Fly. When we take our daily walk, he shuffles along behind me on his arthritic knees. I do turn back to catch up with him, Fly. And if the tension in my muscles is too much, I jog ahead for a while and then jog back to him.

I’m embarrassed to have you observe our mealtimes, Fly. We both read while we eat. There’s not much talk, because he doesn’t have much to say. He tries, though. Sometimes he’ll read aloud part of an article from The Week magazine. And read it to me again a minute or two later.

Oh, Fly, you’ve heard me tell him, “You already read that.” I know I should nod and smile and listen and offer an appropriate comment. But, Fly, it’s like living with emptiness. And it’s so sad, Fly.

Do you see the sadness of it, sitting there on the wall? Do you hear how he asks me, “Is it okay if I eat this?” “Where does this go?” “Is something cooking?” “What’s on the agenda today?” “Did I eat breakfast already?” His whole life resides in me, Fly. The truth is sometimes I hate it.

I know you’ve seen me weeping, Fly. I admit to wallowing in self-pity. It’s been hard to let the dreams go, Fly. It’s been hard.

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The Issue of Hair

fullsizeoutput_362Hair has always been an issue for me.  Well, not always.  Until I hit puberty, around twelve years old, my hair was brown and straight and not particularly worthy of attention.  Then along came adolescence.  My hair went wild.  All over.  The hair on my head grew wiry and frizzy.  The hair on my legs gradually became dark and too thick to ignore. To my horror, I grew a faint mustache.

In middle school and high school, I spent hours dealing with my hair.  Twice a week, I tamed the stuff on my head with plastic rollers the size of soup cans. (Remember, this was the 1960s, when long, straight hippie hair was cool.) It took more than an hour under the hair dryer to achieve the final smoothness.  In between washings, I’d clip it around my head at night to stop the frizzy waves.

When I was in ninth grade, all that effort went for naught because I had swimming for  first period P.E.   It was some kind of cruel test for freshmen.  The required bathing caps weren’t much help.  I went through the rest of the day with frizzy hair and smelling like chlorine.

To deal with the mustache, I used a bleaching cream.  And I shaved and shaved my legs.

So much hair.

So much time spent managing it.

Three years ago, in Spain, I had my hair cut really short.  I was 66.  It’s been the best choice regarding hair that I have made in years.  Wash and wear.  No blow-dry, no rollers or ties or scrunchies or clips.  Whew.

 

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That was the good aspect of aging, getting brave and practical about how much of my remaining time I chose to spend fussing with my hair.

But there’s a not-so-good aspect to aging and hair.  The stuff just keeps on sprouting!  In the weirdest places, too.  Now I have to check my nose and my eyebrows and chin for rogue hairs.  Some are white and stand out defiantly.  And I’ve acquired a light layer of blond fuzz all over my cheeks.  It takes diligent daily effort to keep everything mowed and pruned.

God laughs and shakes an admonishing finger.  “One place or another, you’re gonna have hair.”

Art as a Healing Force

 

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When I was eighteen years old, a senior in high school, my mother was dying of cancer. No one said the words out loud, but we all knew.

Of that time, I most remember sitting at my desk and drawing. With a crow quill pen and a bottle of India ink, I used minute lines to create intricate pictures. None of them remain save one, a portrait of my cat asleep on my bed.

I would scratch away with the tiny pen point for hours, until my blood sugar dropped so low that my hand began to shake. In that universe bound by the edge of the paper, I discovered a grim joy. Certainly I found something I could control; control that did not exist anywhere else in my life at home. There was no conscious realization that I was using creativity to defy death, or that those myriad lines of ink were healing me and holding me together like stitches. But that is what happened.

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During that time, I also kept a journal. Later, I referred to my journals as my “garbage cans,” receptacles where I could throw anything. There were no rules for these writings. I wrote whatever inspired me, whenever I felt the need to write. Poems, the beginnings of sappy romances, and a lot of whining filled the pages. Some of those notebooks still exist, stashed in a plastic bin. Fifty years have passed and I am still unwilling to read them.

To this day, I find solace in creating, be it writing, drawing, or sewing. Each of these activities carries its particular medicine. Writing lets me pour pent-up emotions, persistent thoughts, and fantasies, and then it teaches me where I am. Drawing and painting focus me and put me back together. Sewing grounds me as I use my hands to produce something utilitarian and attractive.

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The stories I wrote during my first two years in a writing group helped me exorcise the collected bitterness and sorrow of a failed marriage. When at last I spread those vignettes across the carpet and arranged them in chronological order, I found I had created a novelette. What a satisfying result from so many pages of tearful memory! The best part was that the sadness and anger were no longer sitting like sewage waste in my gut. Like compost, the smelly mess was transformed into something of positive value.

Art is not an elitist activity. As one of my writing mentors, Pat Schneider, states in her Five Essential Affirmations , “A writer is someone who writes.”* Publication is not a requirement to claim that title.  The same can be said of any medium. Pat Schneider also affirms that “Everyone is born with creative genius.” No matter who you are, or what you have been told about yourself, you can pick up a brush or a pen or a needle and thread and access the joy and the healing power of artistic self-expression.

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*Schneider, Pat. Writing Alone and With Others. Oxford University Press, Inc. New York, 2003.

The Language of Dementia

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In one of life’s many curious twists, my granddaughter of 15 months is gaining language while my husband with dementia is losing it.

Lately I’ve been noticing the language tricks he uses to compensate for the word loss and continue to participate in conversation.  Three of his all-purpose words are: guys, affair and operation.  “Guy” or “guys” can refer to any object, such as “What should I do with these guys?” meaning the mail.  He often asks, “Where does this guy go?” when putting away a utensil.  (As noted previously, all kitchen drawers and cabinets are labeled, so maybe it’s just laziness?) “Look at that guy!” pointing to a tree in bloom.

“Affair” and “operation” are pretty much interchangeable.  When we’re walking, he may say, “That’s a nice operation,” meaning the layout of the house we’re passing.  “Affair” can also be a catch-all for any activity, from dinner with friends to a game of Scrabble.

He also has favorite phrases that are prompted by events.  At the end of our daily walk, he says, “That was a nice little jaunt.”  Sadly for me, I wait for the comment as we come up the stairs and then grind my teeth when–yes–he says it again.

Here I have to confess my own personal terror: I, too, am losing words.  A couple of weeks ago, I could not find the word “ostracize.”  I knew it was hiding in my mind somewhere.  I knew Pete Seeger used that very word in the story-song Abiyoyo.  “The townspeople _____________ the boy and his father.  That means they made ’em live on the edge of town.”  But I couldn’t think of it.

These blanks come too often for comfort, especially for a writer like me.

I remember my mother asking me to “bring me the thing on the thing.”  Right.  A little trouble retrieving words is part of normal aging.  But when isn’t it normal?

What if I’m getting dementia?  How will we manage, the two of us?

Fiddler on the Roof Redux

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Tevye:  “Do you love me?”

Golde:  “Do I WHAT?”

My husband with dementia–asked me that last night.

“What is this, Fiddler on the Roof?” I replied (continuing the Jewish technique of answering a question with a question).

Tevye: “Do you love me?”

But my husband, not a musical theater buff, sat there waiting.  So I channeled Golde and sang,

Golde: “Do I love you? For twenty-five years, I’ve washed your clothes, cooked your meals, cleaned your house.  Given you children, milked the cow.  After twenty-five years, why talk about love right now?”

He still sat there, with his stupid knitted nightcap on, waiting for an answer.

“Would I be doing this if I didn’t?” I finally said.

But, oh, what a torrent of troubled thoughts and emotions his question brought.

Do I love him?

This man with whom I share a bed, a home, lockdown, days of sameness and dullness–this man who has lost much of his–of our–past, who mainly converses about the present moment–this man is not the man I married.

Where did that lively, alert, busy guy go?  It was the connection of our spiritual path that reeled me in.  For years, we did seva–“selfless service”–together at the ashram.  We went to programs there, signed up for longer retreats.  That connection was our anchor and our hub.

Alas, our seva at the ashram was “concluded” two years ago, when the food service supervisors decided that my husband’s dementia was too much of a liability.  After that, I couldn’t imagine leaving him at home to volunteer by myself. How would I explain it to him?

Love changes.  That’s for sure.  These days, I don’t know what I’m feeling about love or about him.

In the beginning, when we were getting to know each other, I borrowed from John Gray’s Men Are From Mars, Women Are From Venus to explain myself.  Gray says that men are like rubber bands, and women are like waves.  “But I’m a rubber band,” I told him.  “I need to get away, to be alone in order to come back,” I said.   Maybe most introverts are like that.

So much for those needs being met.  I haven’t really been away from him for weeks.  Months.  Years.

So do I love him?  I’m still here.  He needs a caregiver. I’m it.   There is no one else.

Golde: Maybe it’s indigestion.

Tevye: Golde, I’m asking you a question.  Do you love me?

Golde: Do I love him?  For twenty-five years, I’ve lived with him, fought with him, starved with him.  For twenty-five years, my bed is his.  If that’s not love, what is?

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Pete Seeger: Then, Oh, Then

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When I was about five years old—that would be 1956, when the U.S. was crawling out from the McCarthy era–my parents took me to a children’s concert. I sat close to the stage, looking way, way up at this beanpole of a man. He stretched his neck like a plucked chicken, and picked tinny notes from a long-necked banjo. He told a story about a scary giant with slobbery teeth. To my utter amazement, he sang and danced like a demented cricket all around the stage. I’d never seen a grown-up act so silly. It was wonderful.

It seemed like all the adults in my life knew Pete’s songs. At home, my parents played Weavers’ albums.

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At summer camp, one of the counselors played the banjo just like Pete. The whole camp gathered in one big room. Counselor Tom led our afternoon Sing Time. “Go tell Aunt Rhody,” we sang, and I wondered why the goose died in a “milk pond.”

In the 1960s, the songs of the Civil Rights Movement flowed through my days. I listened to the record album We Shall Overcome over and over.

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Then I was a camp counselor myself, teaching the kids to sing Pete Seeger songs: “Ragapati ragava raja Ram.” And later I was a teacher, and a mother, passing on these songs that were woven into the fabric of my life.

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Wonder of wonders, we moved to the Hudson Valley and joined the Beacon Sloop Club. At the 1983 Clearwater Revival, when my baby girl was just three months old, I sat with her on my lap listening to Pete and the Sloop Singers sing about the Broad Ol’ River while cottonwood fluff drifted overhead.

Had you told me when I was an eighteen-year-old camp counselor that one day I’d be sharing the stage with Pete Seeger, I would not have believed it. Those days as a Sloop Singer were some of the richest, most exciting experiences of my life. To sing in the company of Pete and all the other accomplished musicians (far more able than I) was utter joy.

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So were the seasonal festivals. My kids and I sold tickets at the Clearwater Revival, cooked chili at the Pumpkin Festival (where Toshi scolded me for composting celery ends), and got happily soaked at the Weed Wallow.

A song by Greg Brown that I brought from Iowa particularly took Pete’s interest. “Early Iowa” stuck to me and became “my” song when Sloop Singers gathered. It was an ironic match, as my sojourn in Iowa had been a tough, lonely couple of years in my married life. But there I was, singing about Iowa with a full backup chorus.

On Friday nights at the Beacon Sloop Club meetings, the members traded songs with Pete who grinned and sang and told stories. My son stayed close by, but my baby girl passed from lap to lap. That small cabin filled with joyful noise, a whirlwind of harmony swirling around the man who was a musical lodestone for much of my life.

I owe most of the songs I know to Pete Seeger. He is lodged in my cellular memory. He taught us all the power of song. In the same way that I hold my parents in my heart, Pete Seeger is a continuous living presence.

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Deer Watching

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Our balcony gives us the perfect vantage point for critter-watching.  The mallard ducks come almost daily to feed in the little stream at the edge of the woods.  Deer visits hadn’t been so frequent until a couple of weeks ago.

At the beginning of March, in an attempt to draw the deer more often, I bought a salt lick.  The label said it was apple-scented and good for enticing bucks.  We tromped through the gush of muddy March and set the brick of salt on a stump.

And then we watched.

Nothing.

No animal was interested, not even the squirrels.

The brick of salt slowly started to disintegrate.  After every rain, there would be a crust of white on its top.

Sometime a deer or two would graze close to the stump, but never actually noticed the salt lick.

And then, one day, a yearling found it!

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Now we have frequent visitors.  They come for the salt and for the carrots our neighbor tosses across the stream.

I’m not sure about the ethics of encouraging deer.  They do carry Lyme ticks, chew up peoples’ gardens, and have no natural predators here in the village.  However, deer are such graceful, pretty animals.  We do delight in watching them.  One doe is obviously pregnant.  Maybe we’ll have a fawn or two to enjoy in a couple of months.

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Hidden in Plain Site: Mill Brook Preserve

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Recently, an avid hiker friend mentioned the existence of a spot she liked.  I stored the information away until a few days ago, when I sought out the Mill Brook Preserve.  It was not, as one would expect, at the end of Millrock Avenue.  On a whim, I drove one street further and there it was, right at the north end of my very own street!

We parked the car and set off on the Blue Trail Loop.  On that path, I figured, we’d eventually get back to the car.

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Not far from the parking area we came to the Mill Brook.  ctOnLHYORJOP6v4aioiLow

And a fairy forest of whispering white leaves.

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A beaver dam with beaver-felled trees.

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A lovely heron eyed us.

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There are three marked trails at the Preserve.  We’re planning on trying a new one, if it ever stops raining.

 

Ripples of Magic: Coming Soon!

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Born half-selkie, half Traveler, twelve-year-old Demara wants to live in the sea with her selkie father. Yearning and restless, she sets out with her relatives to try out the Traveler life. Her quest to be a full faerie selkie takes her to the faerie queen. On the journey, she learns more about family, friendship, and her own calling. Will Demara find the magic she seeks? Will she choose life in the sea or on the land?

Graphic designer Nicki Hansen of Handersen Publishing did a superb job with the layout of Book IV of the Karakesh Chronicles.  We’re in the final stages of editing.

Look for Ripples of Magic on Amazon.com sometime in May.

And if you haven’t read Books I – IV, you’d better catch up!

Tangled in Magic      Guided by Magic       Awakening Magic — all at

www.amazon.com    or www.handersenpublishing.com

 

A Memory of Mesa, Arizona

There I was (before COVID-19), working at my computer in Barnes and Noble, when five people from a facility for the disabled arrived at the cafe.  One woman with Down syndrome, three men, and the supervisor made up the group.  Two men and the supervisor were engaged in an animated discussion about an error in their schedule.  The supervisor conversed loudly on her cell phone.  The woman with Down Syndrome hugged the man with gray hair, draping herself over him.  They kissed softly, and I remembered Ralph and Darla from Marc Center.

Ralph and Darla had Down Syndrome.  They were lovers, sweet and fun, and prone to sneaking away to neck in the back yard.  They lived in separate men’s and women’s apartments in a group home operated by Marc Center, in Mesa, Arizona.

Known as Marc Center (Mesa Association for Retarded Citizens, founded in 1957), this organization provided a job for me and housing for our family until my son was a year old.

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While my husband worked long days at the Veteran’s Administration, my job was to be the supervisor for the four men and four women who lived in two of the three apartments in our building.

I was on duty from 8:00 pm to 8:00 am.  The eight residents went to work in the morning, and returned at about 3:30 pm in the afternoon, when the life skills instructors arrived to guide everyone through daily chores and meal preparation.  Every other weekend, my husband and I were expected to provide some activities and outings.

Watching the supervisor and her charges here in Barnes and Noble, I was reminded of myself when I juggled new motherhood and the same job.  Memories returned, making me smile, and shake my head in wonder, amusement, and tenderness:

-the time Lenny set fire to the string in the bottom drawer of his dresser

-the many times Sylvia begged to hold my precious, new baby boy, and drooled with joy all over his head

-the time Duke put his fist through the plate glass window and I found him holding his bleeding wrist over the bathroom sink

-the thrilling success of arranging a trip home for Sylvia, who missed her family

-the time Lenny (again) stole Sylvia’s big tricycle and rode off into Mesa

-how the four men idolized The Fonz, and religiously watched Happy Days

-how hot and dry and brown it was in Arizona, and how much I missed green trees and the sea

I reflected on all that I learned from the residents and the life skills instructors.

Searching online, I found that Marc Center is alive and thriving.

Marc Community Resources, Inc. is a private nonprofit corporation providing educational, therapeutic, rehabilitation and social services to children and adults with developmental and, physical disabilities and behavioral health challenges.