Book Review: My Mother, My Son by Dwayne Clark

“Antidote to Invisibility” [first posted May 8, 2012 in www.aquajane-musings.blogspot.com]

Moved by grief over his mother’s decline into Alzheimer’s and Parkinson’s diseases and sorrow over society’s tendency to make patients’ diagnoses their new identities,  Dwayne Clark set out to keep his mother Colleen’s lifetime achievements and identity alive. The result is a memoir-tribute, My Mother, My Son. With remarkable candor, Clark chooses stories to aptly illustrate his mother’s feisty personality, character, and values, and her contributions to his development. Woven throughout these stories is their fierce mutual devotion.

Each story (chapter) is dated. Chapters from the 1920s, 1930s, and 1940s recall Colleen’s early influences. Anecdotes from 1960s and 1970s illustrate Dwayne’s family upbringing. From about 1999 through 2010, stories chronicle Colleen’s decline and the family’s decisions regarding her care. Chapters do not proceed chronologically; rather, they bounce from present to past, usually for a logical purpose. Generally, zigzagging flashbacks disorient me, and a few times while reading this book, I had that feeling. Most of the time, however, I could see why certain stories were placed where they were. For example, when Dwayne senses Colleen’s disorientation and loneliness upon finding herself in a nursing facility, he wonders if perhaps she now feels how she had felt as a young war bride making a long journey from her childhood home in India to her new home in Washington state, so he tells the sea-voyage story at that point.

I wanted to read this book because of the holding on–letting go tug of war in my own heart over my father’s decline into Alzheimer’s. Dwayne Clark articulately wrote out emotions I’d only been able to weep out. Here is one example: “It was as if I had come down with a spiritual and emotional flu, letting all the anger, fear, worry, and loss fully infect my soul.” Reading this book gave me a sense that I’m not alone. Not only did his struggle touch my heart, but it also was lively, interesting reading. Although I could relate to his not wanting to lose his mom in this tragic way, I could not relate to much of his family background. Still, his stories were fun to read. And I really, really wanted to get to know his mom. I’m not even sure I would have liked his mom, had I known her in real life. But I loved her fierce devotion to him, her support of him, her encouragement of him. And as the book points out, her consistent, confidence-building words came full-circle when he grew up to design the very memory-care communities that would embrace his own mother. One of the most encouraging messages of this book, for me anyway, was that our parents live on in us. I don’t want to lose my parents; they carry their own torches more brilliantly than I’ll be able to. Still, I am who I am because of who they are. Despite the heart-breaking subject, this book maintains a positive outlook.

As memoir, My Mother, My Son is universally engaging, especially to those of us in the midst of elder care, but also to a society tempted to diminish the impact of the elderly and infirm. Colleen Clark was not her diseases. Like all dear people afflicted by Alzheimer’s disease, she was a vibrant person who led a full life making a difference in others’ lives. She may forget her stories, but the people she influenced dare not reduce them to invisibility. In this moving tribute, My Mother, My Son, Dwayne Clark succeeds in providing an “antidote to invisibility.”

Because Dwayne Clark is in the business of providing residential care to mature adults, after he finishes his story, he offers practical advice, guidelines, and resources for those on the elder-care journey. I found this section helpful as well.

I received a copy of this book from the book’s publicist. To buy this book on Amazon.com, click this link:

 http://www.amazon.com/My-Mother-Son-determination-memories-lost/dp/098481521X/ref=sr_1_1?ie=UTF8&qid=1336506953&sr=8-1

I'm the Entertainment???

I’m the Entertainment??? [first posted April 25, 2012]

This might not seem funny to you moms and dads. You are used to thinking up stuff to entertain children. I, on the other hand, have not had children. Only now, I have an elderly father whose jigsaw puzzle level is 25 pieces. The box says this cute 25-piece puzzle of a puppy on a red-checked picnic blanket is for people 3 years old and up. Yup, that’s about right. I like providing activities that Dad particularly enjoys and can feel successful at, since he’s lost so many abilities.

To be equipped for my weekly entertainer role at the nursing home, I now travel with the puppy puzzle in my car, along with a book of animal photographs, and a CD of Dad’s favorite music that he recorded in more lucid years. My "normal" life is reading, writing, editing, walking, cooking, and gardening—all quiet pursuits. Suddenly I’m thrust into a situation where I’m somebody’s entertainment. It feels so odd … maybe like a man who is a plumber or a painter in “real” life but who always has a clown suit in the trunk of his car for occasions when he needs to put on a happy face for kids in the local hospital’s cancer wing or show kids at the library how much fun reading is.  

Today I put my “clown suit” in a green cloth bag, sign in at the nursing home, and then hoof it halfway around the building to a free elevator. (The elevator by the sign-in desk is being held for paramedics responding to a 911 call. Paramedics say they average about 6 calls a day to this nursing home. Sigh.) First, Dad and I listen to some of his favorite songs. He bobs his head side to side to the beat. I put the CD back in my bag and pull out the nature photos. Dad sits in his wheelchair and carefully turns every page. He knows the porcupine and zebra but not bears or penguins or seals, or any others. He used to know giraffes and lions but does not mention them today. Back into the green bag goes the photography book, and I pull out the puzzle box and hold it up.

“Look at this cute puzzle! Would you like to do it?”

“Yes, I believe I would.”

“Okay, let’s ride around to find a table to put the puzzle on.”

I know he likes wheeling around the first floor. He always comments on how beautiful everything is. And he does today, too. We wheel in to the little museum. Every week I tap out a few letters on the antique Remington. Most weeks he recognizes the sound. Today he does not. Every week I tell him how hard he worked to support our family; he taught school all day and wrote textbooks at night. Every week I tell him I remember falling asleep every night to the tap-tap-tap sound of his hard work. Every week, and today too, he nods and beams.

We find an open table in a quiet sitting area. I ask him to put all the puzzle pieces right-side-up. He does. I put the bottom and top edges of the picture together, then hold back. He picks up pieces one by one and tries them. Today he is able to match the red-and-white-checked parts, the sunflower petals, and grassy background. We’re both pleased.

Puzzle back in the box, box back in the bag, Dad back up to his spot at the lunch table on his floor. Kiss, kiss, goodbye, goodbye, I’ll see you again soon, I hope so. He doesn’t cry or grab my arm today when he says, “I hope so.” I feel light-hearted as I carry my green bag of tricks back to my car. Clown gig over … and I’m surprised to be looking forward to the next time.

A Better Day

A Better Day [first posted April 7, 2012]

Thankfully, Friday’s visit to Dad was without Tuesday’s anniversary angst. Though Friday wasn’t one of his more responsive days, his eyes did brighten when my chatter turned to family stories. The words “You used to …” or “We kids used to …” evoked smiles, if not actual memories. Friday he didn’t seem to recognize me, so I even added a few “You and Mom used to …” phrases to give him further frame of reference. As always, when I played his music tapes, he smiled and gyrated his hands to the music. I thought about his anniversary earlier this week, but no tears came. I was just there to bring a few moments of joy, so delight being with Dad was uppermost in my heart.

The day even held some tears of laughter for me. My mom, my sister Joan, and I played Bananagrams because I was too intimidated by their linguistic litheness to play Scrabble with them. Their Scrabble playoff match (I’m serious) was scheduled for later Friday anyway, so the best I could do was warm them up with a few rounds of Bananagrams. After each round, we’d inspect, admire, and sometimes giggle at each other’s words. This reminded Joan of a Simpsons episode where Lisa’s brainiac rival and she were challenged to rearrange letters of a person’s name into an anagram describing that person. Lisa’s rival was given Alec Guinness and immediately came up with genuine class. Then Lisa was given Jeremy Irons; her lame anagram was jeremys iron. The three of us laughed till the table shook.

Even though I was likely the only one at the table who felt how Lisa Simpson felt, Joan’s story had warmed me up for more humor therapy. Driving home, I chuckled at the totally serious No More Head Lice billboard I passed.  At home, a full apron to protect my church outfit did not help when I splattered grease all the way up onto my shoulder. Uncharacteristically, I found that funny, as well as getting hiccups right before our somber Good Friday service at church. Reverence replaced hiccups just in time for me to be deeply touched anew by Christ’s sobering, life-giving death. But on this particular Good Friday, I had also needed a lighter touch, and God provided that as well.

Sappy Anniversary

Sappy Anniversary [first posted April 4, 2012]

I really don’t want to think about this anniversary. 

Unlike tomorrow, which is the 10^th anniversary of our being in this house. I will want to celebrate that. I will want to hold my husband’s hand and walk around the yard and celebrate every strawberry, blueberry, and raspberry we savored from our own fruit patches. I will want for us to tell their stories. For example, when we first moved here to a house we had little furniture to fill, we made a trip to southwest Michigan and purchased one-of-a-kind cottage-style stuff, which we crammed into our little red Mazda up to its ceiling. On the way home, we passed a blueberry farm selling blueberry bushes for $3. We bought six and since the only space left in the car was the back shelf, that’s where the bushes rode on their way to their new home in Chicago.

Today, however, is not a homey blueberry-cobbler type of anniversary. Rather, it was one year ago today that my sweet father, content to smile over peanut butter sandwiches at his beloved wife of 62 years, entered the Alzheimer’s wing of a nursing home so near and yet so far from the kitchen table where he’d squeeze Mom's hand after lunch and announce, “I’m going to go brush my tooth.” It was what he had said for years after meals, and we always laughed. Not so much because it was funny or even one of his many priceless puns. Just because he thought it was funny. And he was so happy to toddle around his home from table to toothbrush to TV with maybe an unannounced stop at the cookie jar

Home is where the heart is. One year later, my dad’s distance from his home evokes strong emotions in me. My broken heart over his broken heart, which he keenly felt one year ago but most likely rarely remembers now, is a hand holding an hourglass whose “sand” is my life, my very breath, and my tears. Sometimes Dad’s safety in the nursing home opens my grateful palm to lightly swing the timepiece in rhythm with the folks who kindly feed and clothe, cheerfully bathe and diaper my hero as Alzheimer’s shuts off switch after switch in his body. Sometimes, with reminders of his simple pleasures stolen, choking grief tightens its grip on the hourglass throat so that my breaths trying to flow freely barely dribble through. Sometimes, outrage that he is reduced to helplessness is a fist angry enough to crush the hourglass to shards, sending tears cascading.

Yesterday I drove 20 miles to visit my father. I was crying so hard in the car that I drove right past the nursing home and drove 20 miles back home. The last few months my hand has been swinging the hourglass. I’ve been able to breathe okay and haven’t cried much for my father. My mom’s health crisis in February rendered my visits to Dad delightful child’s play. I thought perhaps my grief over his decline had plateaued in the acceptance stage. 

But yesterday I passed a tiny, white brick, two-dormer colonial house that played a part of an early childhood memory for me. When the high school my dad taught at was still the only one for four towns around, its homecoming parade route went past this house, which in the 1950s was red brick. What most fascinated me as a little girl was a tiny pond with gold fish in the front yard near where my parents, my brother, and I sat on a blanket to watch the home team’s cheerleaders, pompom squad, and spirited band march by in all their red-and-white youthful glory. No one else in my family remembers this event. The pond has long been sodded over. Memory Lane hit me hard as I drove to visit my father on the day before his one-year anniversary. I couldn’t visit him. I just couldn’t.    

Ya Gotta Laugh

Ya Gotta Laugh [first posted February 2, 2012]
 
So it’s been a stressful week. I mean, really stressful. Mom in ICU, four days later blood counts too low to release her, no solution in sight. My days are dizzying: Visit Mom, try to remember what three nurses and two doctors said and all their names, decipher nursespeak like FFP and POA, determine which cellphone in the room is ringing, pick up sister from train, pick up Mom’s mail, visit Dad at nursing home, e-mail updates to family … you get the picture.

People use the word zoo to describe weeks like this, though every zoo I’ve ever been to is a sea of tranquility compared with this. An elephant languidly swinging its trunk and emitting the occasional bellow? Yes, much calmer than nurses, aides, orderlies, and doctors madly sprinting past each other, then sliding to Mom’s bedside for an earnest heart-to-heart. Mid-sentence, they fumble in their vibrating pocket to grab the cellphone whose ring has been programmed to ironically mellow Yanni-like keyboard riffs. Then they dash off, phone plastered to ear. I can’t help but think of scenes from the Jim Carrey movie Mr. Popper’s Penguins: Flippers flapping, penguins speedily slip-sliding on wet hallway floors.

Which brings me to Dad’s Alzheimer’s unit. Believe me, I mean no offense to dear folks with Alzheimer’s, but my visit to Dad right after the ICU zoo, struck me as funny. Their bubbly activities director had lined up some folks in wheelchairs in the sunroom to watch the Doris Day movie Please Don’t Eat the Daisies.  While Doris Day’s four mischievous boys dropped water balloons out a second-story window onto pedestrians below and tangled her phone cord and asked a million questions, a lady two wheelchairs down from Dad’s constantly repeated, “Hail Mary, Hail Mary, Hail Mary …” Maybe she was praying for Doris Day, who knows? In the middle of on-screen chaos, Doris Day’s doorbell rang. At the nursing home, bubbly activities director’s pocket rang, so she grabbed her phone and began to yell into it, which I suppose she had to do since the TV volume had to be loud enough for residents to hear the movie. Just then, the one lady in Dad’s hall who still walks hobbled to the sunroom’s aviary and began pounding flat-palmed on the glass to get the birds to fly around. Ten colorful little birds flitted and swooped but as soon as they lit on a branch, the lady pounded on the glass again. I laughed and thought, “Oh, this is perfect.”

But I was wrong.  On my drive back to the hospital to check in again on Mom, I passed a man riding a bicycle. On top of his parka hood was a beanie with a propeller whirring. He was too bundled up for me to see his face, but I’m pretty sure it would have looked like Alfred E. Newman’s of MAD magazine. A propeller beanie? Okay, now it's perfect.   

Seeing the End

Seeing the End [first posted July 15, 2011]

You’ve donned a sweater most days for two weeks, and then weathermen predict one day in the 80s. Don’t you long for one last picnic before winter? After you’ve made the hard decision to part with a favorite dress you haven’t worn (Why? It is so cute!) in two years, don’t you consider wearing it one last time before putting the box out for Salvation Army pickup? As the library due date nears, and you finish a novel you enjoyed, don’t you page back to reread the parts that made you laugh out loud? Driving away from your vacation cottage, you call out, “Bye, cottage! Bye, lake! Bye, kayak rental place! Bye, lighthouse! Bye, ice cream shop!” Don’t you? I do. I know I will miss these things.

Recently, I visited my 91-year-old mother on my “regular” day despite my raging headache. In retrospect, I shouldn’t have wanted to not disappoint her more than I wanted to be a safe driver. The pain was borderline blinding; and a simple phone call could have absolved me of my promise to visit. Mom is a reasonable, caring woman. I knew this. But the damage was done—I had driven 20 miles to her house and now faced another such drive to get home. But if I had done the smart thing and stayed home, I would have missed a big blessing.

Mom asked me if I wanted her to massage my head. Everything in me said no, because I am the one who has to be strong now. Plus, one of her hands is bandaged; she shouldn’t be applying pressure with her fingers. But then I remembered that when I was sick as a little girl, I just wanted my mom. I wanted her to lie me down on the couch and tuck the blue afghan under my chin. That afghan was such scratchy wool, it may as well have been woven of porcupine needles, but it felt light and soft to me, because it represented my mother’s caring touch. I remembered her hands tipping a water glass toward my lips and smoothing a cool washcloth on my forehead. And I remembered my mom’s saying when she was sick as an older adult, she still just wanted her mom. I remembered I wouldn’t have many more offers like the one my mother had just made. I said yes.

No blue afghan this time, I laid on the couch with my head on my mother’s lap. Her middle fingers made small, gentle circles on my temples. Using all her fingers, she feathered my forehead. I needn’t have worried about her applying too much pressure with the bandaged hand; I knew then, those arthritic fingers were no longer capable of standard massage. With all fingers barely touching my scalp, she combed my hair. I fell asleep. But not before we’d reminisced about the 1960s and ’70s when she’d had migraines and my two sisters and I had massaged her head. And we laughed remembering how sometimes the four of us would all lie on our left sides on her and Dad’s big bed and scratch the back of the girl in front of us. Then we’d switch to our right sides. Dad and our brother could never understand how good this assembly-line back scratching felt.

It was a sweet half-hour or so. Made sweeter by seeing the end and setting aside my foolish pride long enough to admit I just wanted my mom.

Ease Burden of Caring for a Parent

Filled with practical resources, Anne Tergesen's article, "Ease Burden of Caring for a Parent" appeared in Sunday's Wall Street Journal Sunday. Here are just a few examples of her helpful info.

Fifty-three percent of companies in a 600-company survey offer flexible work hours for caregivers. Forty-five percent allow telecommuting, 35 percent compressed workweeks, and 13 percent job sharing. In addition, 50+-employee companies must offer up to 12 weeks unpaid leave each year to caregivers.

You can get information on everyday issues such as in-home care and transportation at www.eldercare.gov and the names of geriatric care managers at www.caremanager.org. The National Council on Aging has databases and programs you can explore at www.BenefitsCheckUp.org. 


I encourage you to read the complete Wall Street Journal article at:
http://online.wsj.com/article/SB10001424052702304782404577488921344247372.html?mod=googlenews_wsj