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.

Saturday, December 19, 2015

The Whistling Teakettle

Today I had a vivid flash of memory. Happens to all of us, triggered by something which brings up emotion. Maybe I’ve started paying more attention to life’s details because of writing, and I welcome and build on these vivid flashes rather than dismiss them.

This is what happened. Last night I attended my writers’ club Christmas gathering. This get together is always more relaxed than our normal critique sessions. As the evening began the editor who leads our group asked each person to state their goals for the coming year. After listening, she added her perceptions and pointed us in a direction based upon our goals.

This meeting was in a member’s home, not in our standard conference room at the library. We had festive food, not our usual sparse basics of a pot heating water for instant coffee. People prepared a favorite recipe to share, so we weren’t stuck passing around the never-ending bag of leftover Halloween candy.

I had helped myself to a piece of apple pie and chex mix. My sweet and salty belly was fat and happy. Then I smelled coffee, good coffee. The gal next to me was sipping hers, saying, “I’ll probably be up half the night, but this coffee is worth it.” I went into the kitchen to get a cup and found it was coffee made in a French press.

I’d only had French press coffee two other times. Once in a restaurant, which prompted me to buy a French press carafe. I only used it once. It did make great coffee but it reminded me of the old percolator we’d used when we camped. It was a mess to clean up, not nearly as effortless as my Keurig, with its disposable pods.

Today while at home I was getting ready to finish reading a book and write a review. As I settled in I thought, Boy, a cup of that French press coffee would taste great.

I contemplated heating the water in the microwave, with the least effort and mess possible, but then thought, Oh, come on, Jean, at least you can use your teakettle. I dusted off the kettle because it hadn’t been used in quite some time. I emptied the old water, refilled and turned on the burner under the kettle while I scooped grounds into the French press.

In a minute or so, I heard the whistle of the teakettle. That’ 
The sound took me back instantly through time and place, as though I was standing in Mom’s kitchen.

Mom did not enjoy coffee, but loved her Lipton’s with a spoonful of sugar and a douse of milk. I remember her teakettle vividly; stainless steel, Revere Ware with a copper bottom and black plastic whistle spout. The sound would start out as a low rumble but in less than two seconds it became a steaming shrill scream demanding immediate removal from the burner.

As my parents declined from age and Alzheimer's, and she lost the ability to manage food and keep her kitchen clean, the teabags became a source of angst between Mom and me.

Excerpt from Alzheimer’s Daughter:

This morning Mom called saying she was sick. Even though digestive issues often plagued her, it was unlike her to ever call me to complain. I took her bananas, 7-UP and applesauce.
      When I arrived I found her alone, sitting feebly on the couch, hair uncombed, in her bathrobe. I made warm lime Jello for her to sip. She made this for Annette and me when we were sick as youngsters to give comfort, calories and a bit of substance to a sick stomach.
     While she sipped I went to the kitchen and cleaned moldy food out of the refrigerator and scrubbed the kitchen counter and sink with Clorox. I told her she must not keep leftovers too long in the refrigerator nor leave them out on the counter to spoil.
She’s a tea drinker, so she keeps all used teabags in overflowing jars, rotting with cloudy green mold, on the counter, intending to dig them into the soil around her rose bushes as fertilizer. I told her these putrid tea bags grow bacteria. She became angry, trying to get to her feet, saying, “Don’t throw my teabags away. They keep my roses blooming.” I quietly ignored her and dumped them in the trash, taking the trash to the garage, hoping she’d forget about the rancid bags. I should have dug them in around the rose bushes for her. 

Maybe being a lifelong tea drinker is part of what kept Mom physically healthy to nearly 90. However, I often thought the milk in Mom’s tea was the only calcium she consumed.

Not only did Mom enjoy her own tea, but every evening after supper she’d offer endless cups of tea to my dad. It was her act of love toward him. She’d give him this warm cup of sweetness and they’d sit, sip and refill until her head nodded and she’d doze while stiches dropped from her knitting needles and he’d watch the 11:00 p.m. news. Then he’d gently wake her to go to bed.

As I sit at my computer sipping a cup of French press coffee, I’m warmed by the bubbling of many memories stirred by the whistling teakettle. I’ll be sure to offer my hubby some French press coffee tonight.

Thursday, December 17, 2015

Snow Couple Pin

For 22 years I taught elementary school, most of those years were spent at 3rd grade. I loved third graders. They were young enough to enjoy school, plus they were thirsty learners. We became like a second family as a year progressed.

Beginning the first day back to school after Thanksgiving weekend, every teacher pulled out all of their red and green clothing as well as every piece of dime-store Christmas jewelry—blinking earrings, jingle bell bracelets, Santa necklaces, and a variety of pins.

This pin was always my favorite. It brought a calm upon me. The posture of the snow people demonstrated caring, love, and protectiveness—a soft-spoken calm in an otherwise noisy season.

Rather than wear the pin on a blouse or sweater, I pinned it on the left lapel of my winter coat, so it was a daily part of me. I’d forget about it as the season progressed, but often someone would compliment and I’d remember the pin I wore over my heart. The sweetness of the snow people reminded me of my mom and dad’s relationship.

I don’t recall how I obtained the pin. Maybe I bought it, but I imagine Mom gave it to me as a thoughtful little gift.

I don’t wear all of the glitzy glittery Christmas jangles now, but I’m thankful for the Christmas memory of Mom and Dad as I attach this pin to my coat this season.

Wednesday, December 16, 2015

Two Wonderful Books about Alzheimer's

This week I finished reading two wonderful books about Alzheimer's. 

Mary Cail wrote Alzheimer's: A Crash Course For Friends and Relatives (The All Weather Friend)

Here is my review on Amazon.

After experiencing the tragic loss of her husband, Mary Cail is drawn to work with those living with dementia and Alzheimer's. Her book is profound and almost poetic, as she describes what other writers of non-fiction about the disease write in dry bulleted lists. She touches the heart of the reader as she explains how left out the person with dementia feels, like a repeat of being the last to be chosen in gym class. In reference to the caregiver she says, "Staying upbeat is like trying to swim wearing a pair of mud boots." Thank you Mary Cail for writing such a lovely book creating understanding from all sides of the disease.

I also read a book for children, The Forgetful Elephant, by Irene MacKay. Amazon review copied below.

I highly recommend this book for any young child who has a grandparent with dementia or Alzheimer's Thank you, Irene Mackay for writing such a sensitive book. Beautifully illustrated.

Five stars to each!

Monday, December 14, 2015

My Little Girl Christmas Picture

Yesterday I was designing a graphic to use on Twitter. I thought it would be nice to create a seasonal graphic, so I added a red background and a Christmas tree, then thought it would be fun to use a vintage picture from a Christmas when I was little. I love seeing vintage photos others post. The images always stop me in my tracks and make half a century dissolve.

I started skimming through old family pictures I’d scanned when moving Mom and Dad out of their home, with one in mind of my sister and me peeking around the Christmas tree on Christmas morning, but I knew I’d used that in a blog post last Christmas. During the search I stumbled upon a picture I’d completely forgotten. I’m standing alone by the Christmas tree, my short hair wavy with a spit-curl right in the middle of my forehead. I estimated it must have been taken when I was about four. Then I thought, I should ask my sister how old I am in this picture. It takes my sister to nail down my age when we look back because she's seven years older and remembers more about my early childhood than I.

Often when we’ve poured over pictures, she’s said, “You were three years old in that picture because you were wearing a babushka to cover your scars.” or “You must have been between three and four because your hair is still growing back after your meningitis.”

When I was two and a half years old I became ill with spinal meningitis. I was one of three children in an isolation unit at Akron Children’s Hospital. Two tragically died. But, in a last-ditch procedure, doctors drilled three holes in my skull to relieve pressure. My dad fainted when nurses shaved my head to prepare for the surgery. Mom knelt at the bathroom sink and begged for the life of her baby. Doctors warned if I survived, I’d probably never be normal.

We lived in a very small town, 700 population. At that time, people owned one car, worked and shopped in that small town. They didn’t leave town much. I had an uncommon bloodtype and had lost a lot of blood during the procedure. People in my community who also had B- blood drove to Akron to donate in hopes of saving this little sick child. My name was whispered in prayers for healing in all three of the town’s churches.

This brush with near death impacted my family deeply and the story was repeated to me often. It was told with the expectation that I should be thankful and never complain, remaining aware that every day I could stand and breathe on my own was a gift, one I might not have had without the prayers and caring of my community as well as doctors willing to take a risk.

During my career as an elementary teacher, occasionally we’d encounter critical illness with a student. I’d tell my 3rd graders my story. I’d tell them how doctors had said I’d probably never be normal, but reassured them I was as normal as anyone else. Then I’d let them feel the dents that remain, now filled in with bone. I’d say, “Our friend can recover, let’s keep positive thoughts so we can welcome them when they return.”

To my sister, thank you for being my fierce protector when we were children and even as we pass through mid-life together. I hope the grateful attitude of our parents continues to live through generations.

Thank you, friends, for reading. Bountiful blessings to you and yours as you share your love and your stories with those close to you this holiday season.

Saturday, December 12, 2015

Powerful Moments Last Week

Warning: today’s post rambles.

As I think back on last week I'm writing about three treasures I hope I’ll remember forever.

First rambling: I had the opportunity babysit for my almost four-year-old granddaughter, my daughter’s daughter. We baked Christmas cookies—peanut butter kiss cookies. As we rolled the dough into balls, forked the crisscrosses, sprinkled sugar and plopped the kisses on top, she jabbered non-stop about starting a bakery with her three-year-old cousin, my son’s daughter. My daughter and my daughter-in-law are busy ladies, there is little time to bake with children because there are meals to prepare, laundry to wash and fold, bathrooms to clean, vacuuming to complete, and much more. But when Granny comes I’m unencumbered by these tasks and they let me do the fun stuff. As we baked my mind wandered to the many times my mom spent in the kitchen with my son and daughter teaching them details that were later repeated to me in the kitchen, “Mommy, Grandma says to scrape the extra flour off the top of the cup with a knife.” Mom taught my children these small lessons, but many larger life lessons by spending time with them. I hope I’m forging the same bond.

Second rambling: I was awed and honored to be published in a blog interview with Hélène Tragos Stelian, Next Act for Women. When Hélène and I worked on this article some months ago I described how Alzheimer’s Daughter grew out of the pain resulting from the ravaging of the disease upon both of my parents. But when Hélène’s article was published last week, it struck me in a very different, impactful way. Her article created a liberating story from the pain. It created healing in me and made me realize that positive outcomes grow from negative situations. The next act in our lives can be the goodness that sprouts from pain.

Third rambling: On Tuesday night I was invited by a friend and fellow writer to speak at her church. Public speaking terrifies me. So I spent the afternoon trying to calm my racing pulse. However, when I arrived at the church, I was welcomed as though into someone’s home. About 15 of us spent the evening talking like old friends over coffee. We sang my mom’s favorite hymn, “I Come to the Garden Alone.” I read excerpts from Alzheimer’s Daughter, invoking many questions and comments from this group comprised of people like me, taking care of a parent, as well as those who were taking care of a husband or wife. That day would have been my dad’s 95th birthday, so I closed by reading my account of his last birthday before his death, his 91st.

I visited Dad on his 91st birthday in December of 2010. When I entered the unit a couple people were moaning. Someone had just fallen. Staff were assessing for possible broken bones. A gurney was being wheeled in to transport the victim to the emergency room. There was a faint smell of urine.
            I spoke to no one but scurried back to Dad’s room. My heart always raced as I approached his door because I never knew how I’d find him. Sometimes he was in bed­­ fully dressed but sleeping, looking dead. Other times I found him stumbling around the room looking for a shoe, a belt or eye-glasses. Sometimes the room smelled all right, other times there was a strong odor of a diaper needing changing.
That evening he was neatly dressed, wearing a dark-red, knit shirt, tan pants and his WWII Army Veteran cap atop his head. He napped in a chair facing the window even though it was dark outside. A sitcom laughed from the TV in the background. He heard me enter, awoke, turned the plaid swivel chair toward me and said, while putting his right hand out to shake mine, “Hello, I’m Ed Church.”
I grasped his hand saying, “I know who you are, because you’re my dad and I’m your daughter, Rosie.”
I delivered two birthday cards, one from me and one from Annette. As I read the cards he marveled at the beauty of the poetry smiling so brightly his eyes squinted. He thanked me. 
We talked for a little while. During our conversation he used the word ‘wife.’ I told him Ibby and his loved ones formed a cloud of angels waiting for him in heaven. Smiling, he said, “I’ll be there soon.” He gazed out the dark window, waving his hand, as if waving to Mom sitting on a cloud. I wished he could will himself to go.
When we left his room and made our way to the dining room, he announced, “I’m ninety-one!”
Annette had sent a bunch of colorful balloons that were placed in the middle of the table Dad shared with three other people. I sat on the seat of Dad’s walker at the corner of the table. The gravity-defying balloons amazed Dad and his tablemates. They took turns reaching for the balloons trying to hold them down, giggling as the orbs flew like birds. During the meal, Dad tried at least four times to feed me, putting his fork filled with food close to my lips. I thanked him but told him my supper was waiting for me at home.
I’d ordered a birthday cake. At the end of supper, less than an hour after a resident had been taken to the hospital by ambulance, everyone sang “Happy Birthday,” and aides cut and served the cake. Dad kept saying, “I’m so happy. I’ve been so lucky.” With tears in his eyes, he said, “I don’t deserve all the good things I’ve had in life.”
        His words haunted me because I knew he deserved much more. He complimented the staff many times. He said, “They take good care of me here.” There was no doubt he was well cared for but it was sad to think of my father at the end of his life, locked away twenty-four hours a day, with 15 to 20 people, all of them losing their minds.
         Even though he was surrounded by negativity he seemed to block out the pessimism. He was tolerant of others and tried to be pleasant, lifting them out of their funk. He lived within the confines of his circumstance and continued to exude cheerfulness.  

What ties these ramblings together? They are positive points in my life, making me reflect upon the love of family. They all help me heal. I don’t mourn my parents’ passing. They lived long healthy lives and died at age 89 and 91. Their passing was a near decade of good-byes. I mourn the fact that I had to make decisions for them, taking away their independence, decisions that felt like betrayal. In talking with others, I know I’m not alone. Caregivers are left with guilt. That guilt does not dissolve with the words, “I did the best I could.” We aren’t comfortable talking about guilt, but we should be. We should talk about how family continues by building on the solid foundation of the old supporting the young, then flip flopping as the young protect the old. We should repeat the memories and stories, letting sadness birth positives. By sharing our depth, families go forward and heal.

Thank you for reading. Treasure your family during this holiday season, those with you near and far, and let the young hear about those who live in your memory.