Alzheimer's Daughter

The Story

Alzheimer’s Daughter introduces the reader to my healthy parents, Ed and Ibby, years before their diagnosis, then recounts painful details as our roles reversed and I became my parents’ parent.

Their disease started as translucent, confused thoughts and ended in a locked memory care unit after a near decade of descent into the opaque world of Alzheimer's.

I began writing Alzheimer’s Daughter one week after my mother's death––when I was stunned, realizing Dad had no memory of her or their 66-year marriage.

I write to pay tribute to the undying spirit at Ed and Ibby's core, and with the hope that the story of their parallel decline might be helpful to others.

Sunday, December 30, 2012

The Joy We Experience Gives Us Strength to Endure Sadness

Excerpt from Chapter Fourteen of Alzheimer's Daughter
With wind chills well below freezing, I picked my sister up at the airport late on the evening of December 21, 2008. We'd both just finished our last day of teaching before Christmas break, and Annette had flown immediately to Ohio. While driving to my house, we discussed how we should tell our parents about their move tomorrow to The Lodge, a locked dementia unit. Annette and I knew no other course of action existed. I'd been told Ed and Ibby were too confused to remain at their assisted living facility at Lakeview Reserve. This move would be different than any other. There would be no opportunity for our parents to give input, argue or disagree. Our primary goal was to relocate them lovingly, calmly, efficiently, and without upset. We decided we’d play it by ear the next morning.
I felt sick and threw up during the night. Ann tossed and turned. The wind howled, blizzard-like. The freezing torrent outside matched our internal turmoil. We woke bleary-eyed, but resolute––knowing we had no choice but to do what we dreaded.
By morning the wind had died down slightly and was replaced by a heavy freezing rain. During our drive to Lakeview Reserve, we lamented the regression in Ed and Ibby since we moved them out of their home two years earlier. At that time they had the cognitive ability of about fifth graders. They had basic, but rapidly dwindling understanding of dates, time, and money.  The four of us had been able to discuss the move from their home, and although unhappy about the situation, Mom and Dad had some ability to understand how their lives were changing.
Six months ago, at the time we moved them from independent living to assisted living, they had about as much understanding of life as my third grade students. They didn’t have full cognizance of time, dates, or money, but they could speak and still had limited control of their emotional reactions.
But now, six short months later, the disease had reverted them to the mentality of about a first grader. Annette and I were making this decision and completing this move for them, just as a parent would make choices for the welfare of a six or seven year old child. These eighty-eight year old first graders would not be able to control their emotional reaction. We just hoped and prayed they could retain some of the happiness which had sustained them all of their lives, even as they approached life in a locked Alzheimer’s unit.

As Annette and I arrived at Lakeview Reserve around 9:00 a.m. on the morning of December 22nd, we got out of my car and gulped some deep winter breaths. Our hearts drummed as the elevator took us to their apartment on the second floor. We tapped on the door. Mom answered and welcomed us in. It seemed odd that Mom and Dad were not surprised to see my sister from Florida. I think they were already losing the awareness of her geographic distance. Maybe in their confused minds, my sister and I blended together and they couldn’t distinguish one of us from the other.  We faked happy conversation, discussing the weather and the Christmas season, for about 30 minutes.
Then Annette and I made eye contact, stood, and rummaged through Mom and Dad’s closet for their winter coats. We brought the coats to the couch where they were sitting, asked them to stand, and started bundling them––saying only that we were taking them to live somewhere where they’d receive more care. They did not speak, but looked at us with puzzled questions on their faces, with the innocence of children––lambs led to slaughter––no mention of non-compliance.
On that bitter cold, sloppy morning, with wind chills hovering around freezing, Mom and Dad huddled in their winter coats, as we loaded them along with their walkers into my Jeep and drove them across town.
The staff greeted them as we walked into The Lodge. Their new room was warm and cozy, despite the ugly weather outside. We took their coats off and settled Dad into a plaid chair and Mom into a flowered chair, visiting with them for about 20 minutes. Mom commented, “This place reminds me of the farm.” I think the small delicate print on the wallpaper must have conjured up thoughts from her youth.
Aides came to walk them to lunch and gave Ann and me a signal to leave, nodding, indicating, “Don’t worry, everything will be all right.” We excused ourselves, assuring Mom and Dad we’d return with their things soon, knowing we had much work to do back at Lakeview Reserve.
Aides released us through the locked doors and Annette and I held hands, leaning on each other, choking back tears as we escaped to freedom through the front doors, scurrying to my Jeep.

We returned to Lakeview Reserve and began the whirlwind of completely dismantling Mom and Dad’s two bedroom apartment in two days. Annette and I divided and conquered, she on one end of the apartment, I on the other. We pitched, sorted, and bagged anything salvageable. Annette had contacted Salvation Army about a week earlier and they’d agreed to bring a truck on Christmas Eve day––in only two days.

A couple of times each day we’d rush back to The Lodge to check on Mom and Dad, taking small amounts of favorite, comfortable clothes, a few pairs of shoes, and basic necessities to their new room at The Lodge. Now, at the end of our parents’ lives, their existence was reduced to a couple of armloads of clothes and toiletries.            
We’d ask the staff how they were acclimating. Each time we arrived, for two straight days, we found them sitting bundled in their winter coats. We had to keep asking them to take their coats off. Aides told us Mom and Dad continued to put their coats back on saying, “We don’t live here. We’re leaving soon.” 

As we worked back at Lakeview Reserve, we found some sacred treasures. One unbelievable find was a beautifully handwritten note Mom had composed ten years earlier for her four grandchildren, intending it to be given to them when they became adults. My hands shook and I gasped as I silently read:
January 20, 1998
Dear Grandchildren,
I felt it necessary to write a letter of appreciation to you for your wonderful gifts at Christmas. Best, first, and most important is your gift of love. It was great that we could all go to candlelight communion on Christmas Eve. It meant so much to Grandpa and me.
            There are no more wonderful children and grandchildren than we have. You have grown up to be special in every way.
            It’s as though one day God sat beside his gigantic computer and said I will choose four babies who will grow up to be fine young people. I will send a boy and a girl to both of your daughters and their husbands. They will be taught to honor My name and they will respect all human life. They will know that the person they choose for their life’s partner will help raise their children, and they will choose wisely. Marriage is a sacred commitment.
Always seek to do good, and you will be richly rewarded just by knowing in your own soul that you did what was right.
Our hope and prayer for each of you is that you will be as happy as Grandpa and me.
Much Love and Many Prayers Always,
Grandma and Grandpa
            After I read the last words, I called Annette from the kitchen saying, “You’re not going to believe what I’ve found.” She read the note, equally amazed at its beauty. We couldn’t help but contrast Mom’s coherence just a few years ago, to how lost she was now. We felt touched by this reminder of who Mom really was––rather than the lost soul she’d become.

Annette and I were physically and emotionally spent as we left Lakeview Reserve on Christmas Eve. Annette’s family was flying in that night and our nearby relatives were coming on Christmas Day for dinner.
 Annette and I stopped at the grocery late on Christmas Eve, intending to buy a special ham for the next day. As we approached the meat section––the hams were sold out! We were spent, dirty, and exhausted––and now we were beaten by a ham. Standing at the meat case, shaking our heads, working on overload, we could have cried or laughed. Had I been alone, I would have cried––but Annette and I looked at each other and burst out laughing. Oh well, we bought something else––I don’t even remember what––and still had plenty of food.
It was a Christmas when being together was much more important than an elaborate dinner. Our family gathered together around Mom’s table for dinner, as Ann and I teetered on the edge of emotion because of the painful realization that Mom and Dad were locked away.

Sadness had snowballed over the past weeks, but consecutively, I was preparing for joy. Our son’s wedding was to take place on New Years Eve. The girl I’d first met on the weekend of our daughter’s wedding, two and a half years before, was to become my daughter-in-law. My son had proposed one year before on New Year’s Eve of 2007. The couple had been planning all year for a wedding on New Years Eve 2008, in less than one week.
The reality that Mom and Dad were in no shape to attend felt bittersweet. Our son was the youngest grandchild­­––the last to be married. Mom and Dad had attended the other weddings of their grandchildren, but with the location being three hours away, and their move just days ago, there was no way Ed and Ibby could be present.
I left my sadness and my parents locked behind the metal security doors of the dementia unit as our family traveled to the wedding. The events of that day rejuvenated my sapped spirit. My hands trembled as I tied the ivory sash on my daughter-in-law’s wedding dress, knowing that she and my son had an enduring, deep love, which could last well past six decades, like Ed and Ibby’s. After the wedding ceremony, we brought in the New Year by celebrating new love and a new marriage.
A picture of my son wearing goofy 2009 eye-glasses, and his wife wearing a ‘Happy New Year’ crown, tooting a noise maker, with the crowd circling around tossing confetti and streamers, made me realize––life goes on. Generations birth generations. The old raise the young. The young are packed with not only the chromosomes, but the spirits of those who came before. It gave me peace to know that my parents were in attendance through all of us.

Since Mom and Dad couldn’t attend the wedding, the bride and groom devised a plan to bring part of the wedding to them. Our pastor agreed to have our son and his wife repeat their vows in our home church. So, two days after their wedding, the newlyweds dressed again as bride and groom and drove three hours north, to say their vows in our home church with Mom and Dad present. The sanctuary was sunlit on what could have been a very gloomy January 3, 2009. Only thirteen of us were in attendance. 
In addition to the new couple’s wedding vows, our pastor crafted a service celebrating marriage and family by acknowledging Ed and Ibby’s sixty-fifth wedding anniversary––which would be in just two weeks––and gave a blessing to new life, through the upcoming birth of my niece and her husband’s first child due in April (my parents’ second great-grandchild).
This service provided an emotional outlet for feelings we’d all squelched. Liquid emotion ran down every cheek. We sobbed––the groom included. Throughout the service Mom and Dad seemed happy and content. I’m not sure how much of the service they understood. I’m not sure they knew their grandchildren, but they did understand their own marriage was being celebrated. I believe they felt our gratitude for the faith they’d given our family. Many pictures were taken, but the most important was of the bride and groom with their grandparents.
 Thoughts about the ways families grow and change with intense happiness and deep sadness floated through all our minds. On that day, we pondered birth, life, and the end of life.
We shed many tears during that holiday season––tears of sadness, pain, loss, and joy. A dear friend reminded me, we don’t have the ability to schedule our times of deep sadness separately from our times of great joy, nor should we. These powerful moments weave together to form the people we become. We can’t separate these positive and negative events into distinct timeframes––we must fully embrace each emotion. It may be the joy we allow ourselves to experience that gives us the strength to endure the sadness.

Sunday, December 23, 2012

The Power of Photos

     After my sister and I pried our mentally failing parents from their life-long home, moving them to a senior community, at the end of 2006, I started shoveling out the remainders of six decades of marriage and family. I had to be ruthless. The memories of these items had been lost to the disease--dissolved from my parents' minds, like sugar-cubes dissolving in Mom's hot cup of tea. I knew the items had intrinsic sweetness, but I couldn't connect the dots to find the meaning. Every day after work, as I stopped at the house––emptied of people, but filled with debris––I had to remind myself, Things are only things. Keeping things won't keep Mom and Dad, while I mourned the loss of my parents who were still living.

    Quickly sorted family photos––images turing from black and white to color as time moved forward––any having people, places, or situations I remembered, were rare items spared certain death in the garbage.

     We all have blurred memories of our past, but still photos rotate the camera lens of our lives into focus, showing clear details, reviving lost memories.

Annette, Ibby, me, Ed...who was taking the picture?

     Our eyes look to the left in this picture. Mom's pasted smile, and Dad's readiness to spring to action, make me imagine my sister may have been beckoning the dog, 'Midnight,' to creep into the picture. My mother's hand on Ann's elbow looks to have stilled my sister's gesturing. I fidgeted, my five-year-old attention span––gone.
     In those days, taking a picture in front of the television was like posing in front of a fireplace in today's world. The Philco in the background played three channels through a blizzard of black and white static. 

    Midnight merited his own picture.

     In this photo Annette and I stand on the spindle staircase Mom had stripped and refinished when they'd moved into the old house, then grumbled about dusting. She'd tell Annette and me to put socks on our hands and run them up and down the spindles. We'd soon lose interest and she'd have to finish the job.

     In the early 1960's, Santa delivered the baby doll I'd dreamed of. Annette received a transistor radio––the latest technology––sized like a large handbag. I don't think her allowance covered the cost of the eight D batteries required every few days. She slept with it playing under her pillow, even though Mom and Dad thought she'd turned it off. 

Fast forward half a century––Ed and Ibby––typical pose––typical smiles. 

     Minutes, days, months, and years chink forward, but the memory evoked by a photo transports us, timemachine-like, reeling backward through our own history. It's good to look back, to remember. Memories help us move forward with targeted intent, realizing how quickly time passes. 

     This Christmas, my family will gather around Mom's old dining room table. If you saw this table, you'd probably think it should have been put in the trash, or hauled to the garage and used for a work bench long ago. It's cracked and creaky, stained and gouged, held up by a four by four post in the center, but it's the place our family gathered every Christmas for my entire life. Sitting around it makes me think of Mom's homemade meatballs the size of tennis balls, soaking in her made-from-the-garden spaghetti sauce, and the many games of Uno and Monopoly played after dinner, while munching on her pies and cookies as the table was being cleared. Our world stopped to take time to be together around that dilapidated table. 

     This year I'll spread the old photos out with the new, in the middle of Mom's table, hoping to conjure conversation of the past, pass on tradition and memories, and build new ones by snapping the unposed and unsuspecting. Hopefully, some of these artifacts make the cut when my belongings are sorted, determining the trash from treasure, at my life's end.

     I'll miss you, Annette, and all far away family members, at Christmastime this year.
Christmas blessings to all reading Alzheimer's Daughter. Take some pictures and make some memories.


Friday, December 14, 2012

Christmas Memories

No question, the holidays make us think about Christmas times from the past.

I could write about recent unpleasant Christmas memories, such as Christmas 2006, the year my sister, Annette, and I forcibly moved our parents out of their home, and into a senior living facility––or Christmas 2008, when we had to move them to a dementia unit, leaving them behind locked security doors. Both situations are guilt-laden and still bring up nausea. So my mind cycles backward, like rewinding one of the early mechanical digital clocks where the numbers actually flipped on tabs so quickly you couldn’t distinguish individual digits as the clock was reset.

This ‘flashbacking’ was prompted by a conversation I had yesterday when speaking with a friend, comparing tales of Christmas times from our own childhood. This friend told me she believed in Santa until she was––as she put it–– ‘married.’ I’m sure she was kidding, or her husband might have wondered about her sanity. But the conversation took me back to childhood memories of my family Christmases in the 1950’s and 60’s.

My family attended church every Sunday. Christmas Eve Candlelight service was the most mystical of the year––with the exception of the year a friend’s screams as well as the smell of melting hair filled the sanctuary when her long locks brushed through her lit candle during Silent Night.

With church and faith as our focus, Santa just wasn’t. Ed and Ibby didn’t exclude “Santy,” as my dad called him, but Santa and church were kept separate.

Digging through old pictures, I found one of Annette and me on Christmas morning. There were few presents––the most exciting being the cardboard Corner Store Dad had assembled the night before. I felt like big stuff, because Mom let me put real Jello, BandAids, Corn Flakes, and canned goods on the shelves.

 I played with that store for years, begging Annette––seven years older––to play with me. This picture was snapped one of the times she gave in.

Our tree was decorated with ornaments we’d made at school, and silver tinsel, hung one tiny strand at a time. Annette and I usually gave Mom and Dad something we’d made at school. Mom treasured these trinkets, stashing them away for what she thought was forever. Those items resurrected, yellowed and stiff with age, to be put to final rest in the trash during my cleanout of their home.

Ed and Ibby didn’t exchange presents. They needed none, as they had each other. However, I do remember, after I was old enough to drive to the mall to Christmas shop with friends, Dad would sneak me $10, asking me to buy Chantilly cologne or dusting powder for Mom. I’ll always remember the light pink box with the white lace. Even now, when I see it in a store, I spritz the sample on my wrist, taking in my mother’s sweet, old-fashioned scent.

Long into my young adulthood, however, the Santa/Christ disconnect persisted for me. Church and Santa seemed opposite, yet connected in some way I couldn’t figure out.

When I had my own children, Santa played a role in our holiday. We decorated the house with Santa images, but Mom’s hand-me-down nativity took center stage under the tree. My children played with Mary and Joseph as though they were Barbie and Ken with a baby. I took the kids to see Santa, and my husband read The Night Before Christmas, but we never pushed literal belief in the man in the red suit.

At that time, we lived in a little cape cod house. Bedroom space was upstairs in a finished attic with steeply pitched ceilings and rough pine slats for flooring. One Christmas Eve, when our son was about age three, and our daughter seven, they sat at the bottom of the stairway behind the door that was appeared closed, but had been opened just enough for a peeking crack. As my husband and I carried presents hidden under the bed to the tree––our daughter whispered, “See, it’s Mom and Dad. There’s no Santa” to her younger brother. Wow, an older sibling can really burst your bubble.

It may have been that Christmas that I bought this small statue called the ‘Kneeling Santa’ for my mom for Christmas.

It’s one of the few things I kept from the cleanout, displaying it year round on my bookshelf.

That statue allowed me to let Santa and my faith cohabitate. I explained to my children that God gave us the gift of his son. We celebrate that birthday on Christmas, by giving gifts to those we love. Santa gives gifts to children to honor the child God gave to us.

The bitter conflict between faith and secular commercialism, was now resolved in my mind by this little statue.

I could go to lament the overindulgence of material things, and the grumpiness seeping out of us as we try to find the perfect gift and stretch our budgets to the point of a balloon ready to pop, but, you can breathe a sigh of relief––I won’t. Instead, I’ll just remember the simplicity of giving something from the heart, maybe a hug, homemade cookies, or a thank you, to those we love, and those in need, at this time of year.

Thank you for visiting Alzheimer’s Daughter. Blessings to you all, whatever your faith may be. Jean 

Wednesday, December 12, 2012


Hands tell the short story of a life.

In early 2010 my sister, Ann, was coming for a visit after our mother had fallen, breaking a hip. Mom was failing fast.

My niece had found a beautiful picture of multigenerational hands online and sent it to us, spurring us to try to duplicate the photo. We arrived at the dementia unit––I with my camera in hand.

In this picture, Dad’s creased and rough hands wear his class ring from 1939, and a Masonic ring. He always did love a bit of bling, but in his defense, one must actively wear all of these possessions in a locked dementia unit, or they end up missing, found on other people’s hands.

The ring you see my dad putting on my mother’s crooked fingers matches one on his hand. These were bands bought for their 25th wedding anniversary, 40 years earlier. 

When Mom and Dad died, Ann took Mom’s anniversary ring. I took Dad’s. His fits the middle finger on my right hand perfectly. When I’m brushing my teeth in the morning, the glint of the gold winks at me, reminding me of my parents’ love for each other, and my bond with my sister.

Yesterday, while babysitting my seven-month-old granddaughter, she rolled from her back to her stomach in her quest to explore her little world of the blanket on the living room floor. As I lay with her, playing, cooing, and peek-a-booing, she was mesmerized by Dad’s ring on my hand. She pulled my finger, examining every angle of the ring, as though she was a scientific researcher, pulling it closer to her face, closer to her eyes, then to her nose, finally trying like the dickens to slip my finger in her mouth to taste test.

I looked at her little, brand-new hands––her fingers about one-fifth the size of my own. Hers, fresh and plump––mine, crinkled and ruddy. I was struck by the presence of my parents, their essence felt through that small piece of metal that had wound around their fingers for decades.

At birth a baby reflexively grasps the hand of their parent. That baby grows to a child who holds their parents’ hands to be taught, to be protected. Over the next half century, the roles reverse as slowly as it takes wrinkles to form, eyesight to fade, and joints to wear out. If a parent lives long enough to become frail, that parent comes to hold their child’s hand for strength and safety. At death, the child grasps their parent’s hand, thanking them for life. Just like the never-ending circle of a ring, joy comes in holding the hands of future generations.  

Saturday, December 8, 2012

Happy 93rd Birthday, Dad

Today would have been my Dad's 93rd birthday. He died one year and eight months ago of Alzheimer’s.

My dad was a Depression Era kid and a WWII veteran.

When I was a growing up, my memories of Dad are scant. He was a driven businessman, working from before sun-up to after sundown, arriving home late for dinners, attending American Legion or Masonic meetings. When he was home, his time was spent working in the garden, completing home repairs, or watching the news.

Throughout my childhood, teenage years, and adulthood, I knew him as a hard-working father. However, I can honestly say, I never knew the heart of my dad until Alzheimer’s disease ravaged him to the point that he didn’t know himself.

As Dad lost his mind, I found the man who was my father.

I saw him as an unshakingly devoted husband to my mom. I remember him kissing her, as though they were honeymooners, leaning over the arm of her reclining wheelchair, as everyone else in the room knew she was dying. With a grin on his face, he repeated his mantra, “We’ve been so lucky––we’re so happy.”

I came to appreciate his joy in life as I walked toward him one day in the locked dementia unit, looking him in the eye and smiling. His face brightened––he was so excited he nearly wiggled out of his skin. We approached each other and he took my hand, bubbling, “It’s so wonderful to see you. This is the best day of my life! Now who are you?”

I witnessed his deep, yet innocent child-like faith, as I entered his room, on his last birthday, his 91st. He turned to face me, extended his right hand to shake mine, saying, “Hello, I’m Ed.” I told him I knew who he was, because he was my father, and I was his daughter. He replied, “Really?” He asked me, “Where are my parents and that woman I admired?” I told him they awaited his arrival in heaven. He turned to the window and waved at the clouds.

I was overwhelmed at his graciousness and peacefulness as his feverish hands gripped mine tightly, whispering his last words to me, “Thank you, thank you, thank you.” as I sat by his bed before he died.

The professional man, his goals, the career he’d built, all was gone, like ashes blown away in the morning after fire dies. The deeply buried embers, the man who was left at the end, the man dying of Alzheimer’s––that’s the man I carry in my heart as Dad.