Ne pas oublier—one year later

Ne pas oublier. To not forget. Last Christmas, nearly all my father’s earthly possessions fit in my reusable bag sporting a French grocery list and reminder not to forget. Christmas morning after he died, my husband and I cleared his belongings from his room in the Alzheimer’s wing of the nursing home. I snapped this photo because I did not want to forget.

Forget what? My dear, sweet father, of course. His smile. His dignity as his mind and body declined. His love of music, tennis, wordplay, photography. His happy spirit. His love for my mom and our family. How he  recorded precious family moments on film because he did not want to forget them. The cruel irony of Alzheimer’s stealing his memory.

I also wanted this photo to remind me that life is fleeting and possessions don’t matter at the end. Because of the photo, all year, mere sight of this Ne pas oublier bag has triggered grief so deep that I could not use the bag. I would have to remember to buy fish and fruits another way.

One year and one day into my dad-grief journey, I thank God for His divine comfort and provision of compassionate friends and their hugs and prayers and laughter—and Puffs tissues. In fact, I dab sad tears as I type this. My heart has felt like dry, torn, straw tinder—itself dead, matted in the dirt—though now bathed in sunset’s hazy gold and smoky purple light. At some future dawn, God’s healing will be sufficient for new green shoots to sprout. In the meantime though, I can choose joy in God’s faithfulness and comfort, lovingkindness, promises and healing. It has taken me a year to make this decision. Sorry, Lord, for being so slow at this.

On Christmas Eve, the eve of the dreaded first anniversary, I packed up party supplies to take to Mom’s, including the DVD I’d had made from Dad’s 8mm films from the 1950s. I wanted our whole family to share in the joy Dad had taken in preserving precious family moments. We did! I wanted him to be present at our Christmas party. I wanted to remember his creativity and love. I decided to start using my Ne pas oublier bag again. I won’t forget.

I won't forget my father. Or his and my brief sojourn, and with God's help, I won't forget to choose joy.

Weeping may tarry for the night, but joy comes with the morning. Psalm 30:5

Raspberry Honey

Raspberry honey spread is exactly what I’d delighted to give my father over many decades. A jar of artisanal Miel Crémeux avec Framboises purchased this fall near Québec City summarized my sadness over not being able to give this type of gift to him over the last three years he’d been in a nursing home. Happy to be able to enjoy the whole fruity, sweet, smooth, mellow mélange myself, I also felt sad that I couldn’t bring back this souvenir for my dad. The nursing home fed him a special diet. I would have had to spoon the raspberry honey directly into his mouth, because he no longer ate bagels or muffins or crackers or other normal excuses to slather and savor raspberry honey spread’s wonderfulness.

Many mornings since my dad’s Alzheimer’s required nursing care, I have cried while drizzling honey into my bagel’s craters. I could stand at my kitchen counter and make something I love eating. He no longer could. The simple act of drizzling honey conjured long-ago mental pictures of him sitting at his and Mom’s kitchen table twirling a ridged honey dipper over his toasted English muffin. Enjoying raspberry-infused honey this fall, I recalled decades of making Dad raspberry desserts for his birthdays, and bringing back raspberry preserves from Michigan for my parents. Jars of raspberry everything are gone now; so is my father. Everyone in the family knew Dad’s favorite flavors. Knowing he could no longer enjoy favorite flavors made me sad.

I don’t know, of course, if locking honey and raspberries into his life’s dusty attic trunk ever depressed Dad. As taste buds age, they lose keenness. Alzheimer’s dulls cognition. Maybe he never missed pleasures of eating. Maybe raspberry honey spread only symbolized my loss. Either way, I will wish I could give him raspberry and honey for a while to come. 

“Antidote to Invisibility”

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??? (Or finding a clown suit that fits)

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

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

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.    

Father to the Fatherless

When I read in Psalm 68 that God is father to the fatherless, I think of children of single moms, or of friends whose fathers have passed away. Oh, I have thought of myself as a beneficiary of this wonderful fact, certainly, but more in the context of God’s being a perfect father, compared with my imperfect earthly father. Today is the first Father’s Day I’ve thought of myself as “fatherless,” and it feels odd, as though I’m wearing someone else’s name tag. 

Last June Dad understood the celebration. Today, although he was happy to receive gifts, he had no idea why we gave them to him. He made no comments about them. He recognized the cookies and candy; he didn’t recognize the jigsaw puzzles. He asked Mom to read our cards to him, but he didn’t assimilate the compliments. Mom had given him an ID bracelet so that he’d have something of his own in the nursing home. He liked the bracelet but didn’t recognize his name engraved on it.

Dad’s protection, provision, companionship, and guidance throughout my life are now all in a closed attic trunk of memories. This trunk is not yet locked or dusty; I still reach in and feel the warmth of those daddy memories that embraced and shaped me. An open trunk where current and future paternal experiences go will, however, contain none of these precious things. 

This morning when the radio played a song about holding our heavenly Father’s hand, I pictured myself a small child reaching for her father’s hand to cross the street. My daddy was not there, but God stepped in and took my hand. This little girl’s lips quivered and her eyes spilled over because she longed for her father’s familiar hand. But kindness and strength in this new hand collected her tears and calmed her lips. I can’t explain how, but I felt changed, as though God not only walked me across the street but also lifted me up onto a Segway and then hopped up behind me and off we zipped together. It seems at least one benefit of losing my dad to dementia is a deeper desire for and dependence on God’s fathering. Today I’m especially glad God is father to the fatherless.

Casual Shorts for Tennis & Skating

Taped to the side of a long, clear-plastic storage box was a 2-inch strip of yellow lined theme paper, cut perfectly straight along the bottom. With a faded blue marker, my dad had neatly printed in italic capitals: CASUAL SHORTS FOR TENNIS & SKATING.  My heart caught in my throat as I peeled Dad’s note off the box before displaying books in it for my garage sale. I’ll reuse the box but I don’t have the heart to discard the note.

Tennis and roller skating were my uber-athletic Dad’s retirement passions. Now he scoots along nursing home hallways on a tall silver walker with, ironically, day-glow yellow tennis balls steadying two of the walker legs. He doesn’t recognize his Senior Olympics tennis trophies. Whether he is in the mood nowadays to watch professional tennis on TV is iffy; used-to-be, he wouldn’t miss a tournament. Not so long ago, names like Roger Federer and Venus and Serena Williams sailed through the air in my parents’ TV den like blistering baseline backhands. And I have countless memories of Dad teaching me tennis when I was 11, Dad signing me up for private lessons, Dad and Mom playing mixed doubles, Dad inviting me to various tennis events throughout my life. Now I doubt he could even follow a tennis game on TV.

I haven’t quite wrapped my mind around this yet. Though difficult and sad, the natural, gradual physical decline of aging is easier to watch than the unnatural, gradual mental decline of Alzheimer’s. A future blog post focused on my 90-year-old mom’s sharp mind but failing body might reverse this assessment, I realize. The whole scene is just so sad. I feel like I’m standing onshore while the two dearest people in the world float out to sea in a dinghy with no oars. I cannot swim out to tow their dinghy back; I cannot toss oars to them; I have no choice but to watch as they toss toward the horizon on this trip they’ve so courageously embarked on.

A New Season

Never have I been so happy to flip my wall calendar to a new month. April took a lot out of me. If you’ve read my recent blog posts, you know our family is heartbroken that the time when my dear dad needs nursing home care finally came on April 4. I have my own grief to process; but then my mom and siblings and their kids are all grieving, too, and I want to be a blessing to them. Add to the grief, all the adjustments we need to make. And now my parents live in two different places, and we’re essentially setting up a new home for Dad. Every visit, though wonderful and precious, renews our pain to see his loneliness and confusion. Now that Mom can tend to her own medical needs because the nursing home can feed and keep Dad safe, she’s lamenting how feeble she feels.

So the month of April ushered in a whole new season of life for me and my family. More accurately, the last seven years have meandered it in; this April ushered it to my doorstep, rang the bell, and handed me an engraved invitation to enter a new season of serving my family. Symbolically, in April we spent almost a whole month watching ponderous, gray balls of rain somersaulting across the sky; hearing wind chimes thrashing everyone’s porch posts, winds whining past our windows, and gusts slamming against the house; and being soaked and chilled whenever we were outside due to icy, high winds rendering umbrellas useless. 

The good news is we ate a lot of healthy soups in April, and I kept my glasses cleaner than usual because I had to polish raindrops off them so often. And in the midst of my exhaustion and wondering how I could possibly glorify God by coming alongside anyone else to bring Jesus’ love to them when my heart was in such turmoil itself ~ God led me to another engraved invitation, this one to come to Him:

Psalm 96:6 Splendor and majesty are before him; strength and glory are in his sanctuary.

Spending quiet time with my Lord went from treasure to necessity in April (not that it will stop being a treasure). Interestingly, this morning when I went to put April’s darkness behind me and move into a hopefully brighter May, I saw the May calendar page features this quotation from Saint Augustine:

Where your pleasure is, there is your treasure, there your heart; where your heart, there your happiness.

Ephemera

ephemera. (1) something of no lasting significance (2) paper items that were originally intended to be discarded after use but have since become collectibles

Do you collect ephemera? I still have a folk music program with signatures of Joan Baez and Peter, Paul, and Mary. I used to follow the Blackhawks and have kept a program with players’ signatures. Though these represent nice memories for me, I hardly ever look at them. But I especially enjoy looking at postcards my grandparents, parents, and aunt sent me over five decades. Not only do I vicariously enjoy their adventures and penned personalities, but I also smile warmly at their thoughtfulness—while they were away from home, they thought of me.

Lately I’ve pondered ephemeral acts. Some people have asked me why I drive more than an hour to drop in on my dad in the Alzheimer’s unit of the nursing home when he won’t remember my visit, my words, my touch, and sometimes, not even my name. His face still lights up when he sees my face, but I know that won’t be the case much longer. And who knows how much he truly enjoys my reading jokes, prattling about my dog’s antics and family members’ travels, and mentioning little things I appreciate about him? Does his not remembering my visit negate its value? Certainly time spent with my dad has value for me. But what about my visit’s contribution to his life? Do 30 or 60 minutes matter?

My mother’s 30- and 60-minute meal prep times during my childhood laid the foundation for my quality of life 50 years later. Though I do not recall a single specific meal, I do remember feeling family warmth around the table. My grandmother’s 30-minute tea-and-cookie chats sent cozy and clear messages: I love spending time with you. Teachers—whose names I do not remember—who spent 10 seconds scrawling “excellent work” on my paper made a difference in my life. These few examples of positive influences encourage me to continue exchanging smiles—no matter how short-lived—with my father. His brain wires may be crossed, but his heartstrings are straight and true. That he might feel loved for 30 minutes that day is motivation enough.

Of what value is ephemera? The picture I get when I hear the word is of a child blowing on a dandelion seed head. White, feathery filaments fly away, never to be seen again. Or are they? Each filament is in fact a parachute transporting a seed that will produce another yellow flower. (For my metaphor to work, you have to think of a dandelion not as a despised weed, but as a bright, pretty flower. Maybe picturing a child surprising his mom with a dandelion bouquet might help.) Although we lose sight of the seed floating on the wind, we can be confident it will land, planted.

Visiting someone with Alzheimer’s fits both Webster’s definitions of ephemera. It may seem to have no lasting significance. For the visitee, fleeting significance may have to do. And for the visitor, each visit to the visitee becomes a precious collectible, an experiential postcard reminder of a loving connection.

Fences

Yesterday, 4-4-11, both logical routes to my folks’ house were closed for construction, so I went a longer way. I was glad for the country-drive detour—anything to delay the task at hand. Well, I wanted to be on time. But I didn’t want to go. Yesterday, 4-4-11, was to be the day my dad, my dear, sweet dad, would begin new life as a nursing home Alzheimer’s unit resident. In the 24 hours since I’d learned of Mom’s decision, I had barely been able to breathe.

New life was hardly my mindset. Despite unanimous medical professionals’ recommendations for nursing care now, this move felt more like it might be Dad’s anguishing death by loneliness. To be separated from his wife of 63 years, whom he deeply loved and depended completely on for his care, and not understanding why—not even capable of understanding why … I could hardly bear the thought of doing this to him. Actually, neither could Mom. That is why we arranged to be at the nursing home shortly after he’d been admitted and taken to his new room, the 10-by-10 walls that would define his new life.

I’m surprised my anxiety-narrowed eyes saw anything on my country drive. When my eye rested on an albino tree trunk shorn by lightning, I thought about Dad’s white-stubbled skin and dementia-stricken brain. A reddish flaking river birch trunk reminded me of odd-colored scales on Dad’s sun-spotted arms. I should remember to take lotion with me to the nursing home, I thought. Rolling horse pastures bordered by low, wide-posted, white fences did not affect me emotionally, but when I passed one farm with a small area, maybe 10-by-20, surrounded by a tall white fence with slats really close together, I could just feel my Dad suffocating after 89 years of having free run of a spacious home.

Round gray clouds sat heavily above me like herds of brooding elephants. Praise music on my car CD player comforted me, though I struggled to concentrate. One plaintive lyric, “You are my Father,” jarred me, because all I could think about was my earthly dad. But it was the reminder I needed at that time to reconnect with my heavenly Dad.

My parents’ house sat eerily silent and empty. I couldn’t see Mom, though she was there, but Dad was in the hospital, never to return here. Dad’s empty easy chair napped without him. The TV slept. His CD player and stacks of jewel cases were just shadowy shapes on a table. I wished I’d entered a toy store whose toys would come to life if I but flipped a light switch. Near the front door was the gym bag my mom and sister had packed up for Dad. It contained pajamas, toiletries, and a few things like M&Ms and a section of the Sunday paper for him to enjoy. Mom didn’t want to take personal, homey, décor  items his first day there, because she didn’t want to tell him yet that he’s not coming home, he’s staying home—there. No tennis trophies, no vacation photos, no model classic cars, no joke books or jigsaw puzzles—yet.  I had to trust her judgment about how much truth he could handle in a routine-change, but I still felt complicit in some sort of trickery. Plus, I dreaded seeing Dad’s puzzled expressions, or saying too much. Mom’s words and timing would have to be the gentle bridge Dad would cross to adapt to his new surroundings.

As Mom and I puttered in different parts of the house, we heard something clatter to the floor. I poked around various rooms looking for what might have fallen, but didn’t see anything. As we were about to leave for the nursing home, I spotted the fallen item. It was one of the leaded-glass sun-catchers hanging from suction cups on the window next to the door. Why couldn’t it have been the blue bird with the red berry? Why couldn’t it have been the brown and black and white raccoon? Why did it have to be the red and yellow classic car—the only sun-catcher that would remind me of my father? 

Our nursing home visit was tense. Crammed into a tiny nurses’ office, Mom answered questions and signed forms with the memorable, dreaded date 4-4-11. If his heart stops, do we want him resuscitated? Yes. Can they put bed rails up at night? Yes. Right outside the nurses’ station sat my bright-eyed dad in a wheelchair. I didn’t remember ever seeing him in a wheelchair. He was surrounded by other residents in wheelchairs. His face broadened into a big smile to see us. I heard him ask someone what was going on and when would he see his wife. I popped out to hold his hand, caress his crew-cut, and assure him Mom would be out in a few minutes. During our visit in his new confines, every time he asked Mom, “Yes, but when can I go home?” his slow, ongoing death by diminishment clutched at my heart. At 4:30 I wheeled my brave dad into the dining room to dine with strangers and drove Mom to her empty home.

I couldn’t wait to get home. My home was all I wanted. But it was an oxymoron of a slow rush hour and I was agitated. Scrolling through the day, my brain’s cursor eventually fell on the fallen sun-catcher, and I lost control of any calm or pseudo-calm I had had.  I called to tell my sister about the sun-catcher; together we cried at the tear-triggering symbolism. When I got home, I discovered walking the dog to be a healthy release of pent-up anxiety and profound grief. The thought that my sweet father might in any way feel abandoned brought gut-wrenching and wailing sobs that I hope none of my neighbors witnessed. But I needn’t have worried about my neighbors thinking me a lunatic, because today it was neighbors who consoled me and persuaded me—from their personal, similar experiences—to focus on the comfort of knowing how safe my dad now is. His tall fence with closely spaced slats protects him in ways his two-story rambling rooms can no longer. This perspective gives me hope that my dad can enjoy his last days and that I can put 4-4’s fence fears behind me to enjoy and comfort him again.

4-4-11 grief isn’t over by 4-5-11; I will no doubt sob again as I lose more and more of my dad. But I’m grateful to friends for guiding me by the elbow into a new room where a ray of sunlight glints yellow on a fallen sun-catcher. Dad will be safe and well cared for.

Cache and Carry

Uploaded the entire contents of my camera's memory card to my computer tonight, then cleared the card for new photos. Scrolling through all 1,300 pictures carried me back several years. In some cases, seeing certain images again reminded me of a glorious spring day with purple pansies and orange and yellow poppies at the Chicago Botanic Garden or a hot summer afternoon in the park with a granddaughter who couldn't be persuaded to stop sliding down the slide, even for the promise of a "possica" (Popsicle) if she'd come home. All seasons of the past few years were represented in my photos. And that granddaughter showed up older in subsequent photos. Tonight I revisited my parents' last few birthday parties, the last two Mothers' Days, Christmases, Thanksgivings, and twice-a-year visits to my beloved South Haven ~ all with their own happy memories.

A few photos saddened me. Like one of my dog Charlie surrounded by colorful autumn leaves two Octobers ago, because we were about a half mile from home when I shot that photo, and his arthritis would make it impossible for him to walk that far now. And like one of Charlie licking my dad's cheek, because as Alzheimer's has eroded his mind these past few years, he always still asks me how Charlie is ~ until the other day when he asked instead, "Is Charlie a dog?"

My photo cache can carry me from today's blizzard to summer sunflowers.

Love is patient. Love is kind.

Yesterday I stayed with my dad while my sister took my mom out for a fun break. We watched men’s figure skating championships, and although Dad announced he might nap, I was delighted he stayed awake and engaged the whole two hours. By engaged, I mean this:

During Jeremy Abbott’s first number, Dad exclaimed, “You know, when he jumps, I can’t tell how many times he goes around.” I answered, “Yeah, he spun so fast, didn’t he? Our only clue is if the announcer says it’s a triple axel or something.” He looked a bit puzzled, so I added, “Then we’d know it was three spins.” He nodded.

During Ryan Bradley’s first number, Dad exclaimed, “I just can’t count how many times he spins in the air.” I answered, “They really twirl so fast, it’s hard to count, isn’t it?” He nodded.

Richard Dornbush’s number elicited Dad’s now-familiar, “I just can’t tell how many times he spins in the air” and my now-standard response.

On this interaction went, punctuated by a few wows and did-you-see-thats, through the first round. When the second round began and Abbott was once again airborne, Dad continued his commentary mixed with awe and frustration. The same for Bradley’s, Dornbush’s, and the others’ second performances. I continued affirming the skaters’ dizzying speed, occasionally noting that the skater had referred to a “quad” in an interview, so he must have spun four times. Imagine that! Dad smiled and shook his head in awe.

Patience with my dad was abundant and natural because I know Alzheimer’s renders him incapable of more, and I was so delighted to be sharing this experience with him—on any level. I regret to admit I do not exhibit equal patience when my husband mentions three weeks in a row [let’s see, would that be a triple? :-)] he will check the windshield washer fluid in my car. I also wish I didn’t have to admit how much more patience my husband has with me when I perform a triple—promising three weeks (only with mending, it’s probably more like three months) in a row to sew a button on his shirt.

And then, there’s God’s patience with me, too. Yesterday in church during one worship song, I thrust both hands chandelier-ward (where apparently God resides during services) and belted out lyrics gushing my surrender of all that I am and all that I have to my Lord—who knows, in fact, all I’m holding back from surrendering. He loves my wanting to surrender all, even though He knows I’m not capable of even understanding that right now, let alone doing it.

I need to remember God is molding everyone’s clay just as He desires. As God pulls someone out of His kiln and paints on glaze, I might not need quite as much patience because s/he can already function as a teapot whose spout has been tested or as a graceful vase that doesn’t leak. But with people still wobbling on God’s spinning pottery wheel, I need to be patient with wet-clay slip that flies off and slaps me as they spin. I see today how slip-spattered God’s cheeks are with what’s flying off me as I spin on His wheel. Strong divine fingers that firm up my clay are bumpy with sloppy gray blobs of my broken promises, weak resolutions, selfish acts, and God’s quadruple axels unfathomably fast for my eyes. Yet He is patient with my limitations. And He is kind to me—way more tender than I deserve. And He delights that I want to share His life as I am able.

TinkerToy Tower

This is the promised continuation of my October 5 post about the elder care season of my life.

The short version of the story is that on October 1, I spent a day with Dad in day care. Later, when I shared observations with Mom, we realized that although Dad's perceptions don't always come across in the right words, he is expressing the true situation. Also, his brain synapses may no longer be fully firing, but his heartstrings flex, flutter, and flame as always. (Is this true for all people with Alzheimer's? I wonder.) Bottom line: this particular day care center, as high-quality as it is, will be death by depression for Dad at this stage. Sooner or later, we'll need to try another solution.

If you'd like more details of my day in adult day care, here's the long version of that story.

Dad dreads day care. Here's a typical airspace filler between the two green leather recliners in my parents' cozy den:

"When will I be sent to that place again?" Dad asks Mom.

"Tuesday," she gently answers.

"How many days till I have to go there again?" he asks a few minutes later.

"Today is Friday, so four more days." She adds with a teasing smile, "Are you that eager to go back?"

"No, I just want to know how many days I have to be free before I have to go back."

It breaks her heart. She's trying adult day care to give Dad some stimulating activity and social life and to give herself a much-needed break from 24-hour caregiving. So far, his major complaint is, "The people there are patients, and I don't want to be around patients." What exactly does that mean? We were soon to find out.

I supposed maybe it was difficult for Dad to converse with strangers. Because of the Alzheimer's, he might not have confidence to initiate conversation. Also, if Dad is indeed higher-functioning than the other "patients," perhaps he would find a sense of purpose in helping them do things. (He was a high school teacher, and I often tell him I couldn't have made it through high school without his help with my homework. He smiles aw-shucks, and I add, "It's the truth." He may be the most patient explainer I know, though my brother is a close second.) I volunteered to spend a day at Cherished Place with Dad to try to make this day care arrangement work, for both my Mom's and Dad's sakes. [Cherished Place is the real name of a fine, caring adult day care center, but I have changed the names of people we met.]

On Friday, October 1, my mom checked her two "kindergarteners" into school and left for a quiet day at home. Sporting standard-issue name tags, we found easy chairs at the back of the main room to watch a Wii Bowling activity. I am using the word "activity" loosely.

We sat between Bill, a glassy-eyed, mousy-haired, middle-aged man who smiled but seemed incapable of speech, and Caroline, a bright-eyed, golden-haired, middle-aged woman cradling a baby doll.

This main room was set up like a living room. Two rows of 10 green jungle-print upholstered wing-back chairs faced each other with about a 10-foot aisle down the center. A large flat-screen TV hung on the far wall. Twenty or so people sat vacantly staring and definitely not clapping whenever the staff cheerleader cheered the Wii bowler, “Yay, Lottie! Everyone clap for Lottie!” I gave Lottie a lot of credit. She may have been almost the only person in the room who could have balanced while swinging her arm in a bowling motion. I later tried a Wii tennis game and although I kept my balance, I missed almost every ball because I couldn’t coordinate in my brain when to press the front and back buttons of the remote. So Lottie may also have been the most mentally together person in that room!

My dad got up to go to the restroom, and a tall, man with a buzz-cut whizzed from God knows where into my dad’s chair. I politely explained my dad had been sitting there.

“That’s my chair,” Sal snarled.

“Well, my dad is coming right back from the washroom; he was sitting there.”

“It’s my seat. I like to sit there. Tell him to sit someplace else.”

Even adult day care centers have playground bullies! I got up to ask a staff person if my dad and I could work a jigsaw puzzle someplace else.

In a small room off the main living room, a.k.a. bowling alley, we spread out a 33-piece children’s jigsaw puzzle of a world map on a round table. Dad’s eyes brightened as he turned all the pieces face-up. The puzzle pieces had vibrant colors and a wooden thickness. Each continent and ocean contained images of its native animals and sea life. Sometimes Dad didn’t at first see that logically, a whale’s tail would go with a whale’s head. And I even wondered if he noticed that all Asia was deep green, so those pieces would all most likely go together. His best strategy was to see how shapes fit together. I am not sure I could have done that; I had to keep looking at the completed picture on the box top, which he hardly glanced at and didn’t seem to see its relationship to the scattered pieces. He had seemed genuinely eager for this activity and was very proud of his accomplishment. He wanted to leave his handiwork out on the table, so we did.

Together, we pushed the colorful world map to the opposite edge of the table, and Dad began turning up the mostly black-and-white pieces of a United States puzzle on the open table directly in front of him. I remembered my parents drilling us kids on state capitals and thought perhaps the capitals on this map would trigger my Dad’s memory of them. That proved untrue, however, although in this puzzle, Dad seemed to have two things going for him: his facility fitting shapes together and his reliable memory of where in the country the states fall.

When he and Mom work jigsaws on their dining table, Dad will sometimes comment, usually one of his trademark quips. For example, “You’re really good at ‘having fits.’” At Cherished Place, he was relatively silent. When someone wandered into our puzzle room from the bowling game, I’d introduce the person to Dad and make small talk, but Dad’s responses were minimal, and the person would amble on. One guy, Danny, came and stayed.

Danny wheeled into the puzzle room and maneuvered into a spot at the table on the other side of Dad. I cheerfully made the introductions, and Danny looked up and waving his hand toward the ceiling, offered, “I did the electrical work here. My father fixed cars. Sometimes he popped the dents out. Sometimes I did that too. My dad lives in Florida. He’s retired now.” I inquired if he meant he used to do the electrical work at Cherished Place. He said yes, looked up again and waved a limp hand at the ceiling. “I did the electrical work. My father fixed cars. Sometimes he popped the dents out. Sometimes I did that too. My dad lives in Florida. He’s retired now.”

My dad stated, “If you did electrical work, then you were an electrician.” Danny repeated his whole spiel, this time adding, “Accident. Brain injury. In a coma one two three four days. Four days in a coma. I didn’t expect that.” As he counted the days, he shook that number of fingers down toward the floor. When he finished the spiel, he hung his head, wagged it, and said, “It’s okay,” in the soothing, sing-song tone a dad might use with a toddler whose TinkerToy tower just collapsed. While talking, Danny placed puzzle pieces in their proper spots in the map as though he didn’t even have to think about it.

Meanwhile, Dad and I were struggling, I because this puzzle did not have a box with a picture on it, and Dad because some states did not fit where he thought they should go. Danny bailed us out by immediately grasping that Alaska, Hawaii, Puerto Rico, and parts of Canada were inset in framed boxes in the puzzle’s corners instead of where they really are on the map. His hands moved swiftly to create these inset boxes, which Dad and I then placed in their proper corners. When Danny put together the Hawaiian islands, he tapped the pieces and announced, again counting on his fingers, “Hawaii. My honeymoon. One two three four five six seven eight nine days off work for my honeymoon.” 

How the subject of student drivers came up, I don’t remember. I proudly told Danny that Dad had been a driver training instructor of high school students. Danny explained that his daughter just got her driver’s license. We learned he has two teenage daughters and his wife works. “She types,” Danny explains rippling fingers in the air over an imaginary keyboard. “I used to bring it in. I did electrical work,” he says with the now-familiar hand brushing the air toward the light fixtures. And then his resigned head wag and “It’s okay” and sweet-spirited laugh. I allow myself to look more closely at Danny. His hair is graying, but his face is smooth. He’s probably 10 to 20 years younger than I. He goes home after each day in Cherished Place to a wife and two teenage daughters, who lost him one day in an accident. I hope they, too, have come to a place where they can say, “It’s okay” and laugh.

We finish unifying the United States just as cherished folks begin hobbling and wheeling into the dining room adjacent to the living room/bowling alley. Dad and I sit in molded plastic chairs at a round white table. We enjoy canned pears, then opt for delicious salmon and mashed potatoes with stewed tomatoes. Dessert is yummy-looking ice cream studded with Oreo chunks. Oooh, I think, Dad, a.k.a. Cookie Monster, a.k.a. Mr. Ice Cream, will love this. He refuses it. Indeed, he has eaten the meal in sullen silence.

Our table mates are two barely functioning men slouching in wheelchairs and a large, loud, able-bodied man in a white T-shirt. One of the quiet men sports a U.S. Navy WWII Veteran cap. Great potential for a conversational bridge since Dad is also a WWII Navy veteran, I think. But then I see that the man’s dull eyes gaze only at his plate. I watch him saw his mashed potatoes with the side of a spoon and shakily shovel a forkful between sagging lips. He holds his fork handlebar-style like an infant first learning to eat. It takes all his concentration to lower his bottom lip and aim the fork. I abandon the idea of engaging this man with my dad and turn to quiet man number two. Due to his severely slouched angle and poor hand control, most of his lunch sits in dribbles on his belly. Cherished Place has extra Depends adult diapers on washroom shelves; I wonder they don’t provide bibs. He doesn’t look up either, so I turn to the larger-than-life Butch to chat in conversation that could include my dad.

This does not work well, because Butch is the stereotypical Marine drill sergeant. Almost before we have finished our pears, Butch snatches our bowls and trots them into the kitchen. Then he stands, feet planted wide and fists on hips; facing the whole room, he bellows marching orders, “Five four three two one” and proceeds to clear fruit dishes off the nine or so other tables. When he sits back down, he explains to me, “It’s my job, ma’am.” Then he leans toward Dad and pops out a poem, which sounds like it might be a real, classic poem. I compliment him on memorizing it, and he snappily, smilingly brags, “I’ve got lots more of those.” Then he hops up again to face his audience.” This time he does a little clapping dance as he sings out, “Swing your partners round and round …” and promptly sits back down. I ask if he was a square dance caller or auctioneer before retiring. His withering glance made me think, “No, of course not, you really were a Marine drill sergeant.” My dad steadily shrinks back from conversation with Butch, and I’m beginning to, too. The topic of Bunco comes up, and I remember one of the staff telling me that even though my dad has never played it, he’d probably catch on quickly because it’s extremely simple and involves numbers, one of my dad’s strengths. I ask Butch if he might be able to show Dad and me how to play Bunco after lunch. Folding thick arms across his chest and looking sternly at me, he booms, “I teach all the games, ma’am.” Dad desperately looked at what he has recently begun calling “the arrows” on his watch. Then he and I pushed away from that table with equal enthusiasm.

The next planned activity was karaoke, so Dad and I hustled into the living room to grab some wing-back chairs in the main area. While waiting for the music guy to set up, we kicked a large beach ball back and forth with the awake occupants of chairs opposite us. Bernard, the man on the other side of Dad, said he had played soccer in Italy, so I tried the sports conversation angle, talking professional teams and leading to Dad’s tennis passion and trophies. Dad watched Bernard’s and my exchange as though it were a tennis game but said nothing. From the other side of Bernard, I heard, “I did the electrical work. My father fixed cars. Sometimes he popped the dents out. Sometimes I did that too. My dad lives in Florida. He’s retired now,” and then the TinkerToy-toned “It’s okay,” and I knew Danny had wheeled himself into our row of chairs to await regular Friday karaoke.

The weekly music guy was wonderful, but karaoke this was not, since only he sang. He couldn’t persuade anyone else to do so, even though the songs were old Dean Martin and Frank Sinatra hits they all would have known backward and forward in their heyday. Plus, the lyrics showed on the video screen. The music guy handled a heckling comment from playground bully Sal with more grace than I would have had. He called out, “I like you, Sal!” to a few chuckles from the peanut gallery.

Some people mouthed the words to “Mack the Knife” and “You Are My Sunshine.” Some tapped their sensibly shoed feet. The lady across from me smiled at me in a familiar way, but I couldn’t place her anywhere in my past. She dozed a bit, waking every so often to mouth lyrics, but when her bottom lip fell down, her bottom teeth stood up. Meanwhile, Caroline now had her baby doll on her shoulder. Her hand “burping” the doll and her knees gently bouncing to the beat, Caroline approached the music guy, then danced around him and eventually disappeared into a small side room, where I noticed other women sitting with dolls. One bounced a doll on her knees to the rhythm. One koochi-kooed a little stuffed monkey into the tummy of her doll. Music guy ended with a rousing “God Bless America,” which many people waved their hands to, but few sang the words.

Midafternoon, when I had to leave, Dad wanted to walk me to the door. In the quiet of the hallway, he asked when Jean (my mom) would be coming for him. I said in less than an hour. He wondered if she’d forgotten about him. I reassured him she would pick him up soon. I said I’d enjoyed my time with him. In truth, I wouldn’t have traded one moment of that golden day for any treasure of the world. His eyes teared, and he explained, “I just never envisioned myself living like this.” He pointed down the hall toward the living room, where the music guy was packing up his stereo and patting the shoulders of various cherished folks. “I just want to live at home with my family, and I don’t understand why I can’t.” I mentioned that Mom worries about him being home alone when she goes out to buy him food, and if he’s at Cherished Place, she doesn’t have to worry about him when she’s at the grocery store.” I can hardly believe I’m simplifying and shrouding the issues like this. This is my father. I’m his child. But his world has become as simple as a child’s.

I couldn’t bear to leave him there, so I took him back into the dining room, where I had noticed some seemingly higher-functioning people earlier. Introductions all around. One woman welcomed him and even noticed his shoelace was untied and knelt to tie it before I could. She reassured me he’d be all right with them. So I left Dad there with them. I was hopeful until I saw his shoulders sagging forward. Sigh. As I walked outside to my car, I passed a school bus just outside the Cherished Place entrance. It was painted navy blue with a brightly painted Noah’s ark and animal pairs, some sheep and other figures, including Jesus saying “Let the little children come to me.” Luke 18:16.