When I was a girl our yard became a field of yellow in May.

I remember walking gingerly in bare feet strategically placing each foot in a space with no honeybees. You could actually hear what sounded like the grass buzzing from all the bees.

I was allergic to honeybees. I remember telling Mom and Dad that I could live without honey if only there were no bees. They explained that we needed honeybees to make everything grow.

Now we see few dandelions and few honeybees. We believe a lush green lawn is the norm.

How different our way of life is now. We don't adapt to what nature gives us. We try to alter nature. 

Mom said, "God gave us so many dandelions. They must be a cure for something. We just don't know what, yet."

She thought maybe dandelions could cancer. But wouldn't it be wonderful if the bright, beautiful dandelion could cure Alzheimer's? 

Farmers at Heart

May 1st. 
The date gives us hope.
We realize that even after a very long, cold winter, summer will come!

My parents, Ed and Ibby, loved to garden. 
Mom was a farm girl. Dad was raised on property with an apple orchard which he tended as a young boy. 

My parents were most comfortable wearing old summer shorts and short sleeves, kneeling in the garden, planting or weeding. 

During the May rototilling they looked forward to August suppers of sweet corn, tomatoes, and green beans with a little bacon for flavor. 

In fact, as harvest time approached, the garden was Dad's first stop when he came home from work. He'd slip off his dress shoes in the garage and slide his feet into mud covered, grassy garden shoes that had lost their laces years before. Then he'd walk out to check on how the corn was tasseling and press his thumb firmly into red tomatoes to see if they were ripe enough for a dimple to be left behind. Those, he'd bring in for supper, even before he changed from his dress shirt and tie. 

In October Mom and Dad put the garden to bed by piling leaves atop in anticipation of enriched soil for the next growing season.

May 1st makes me long for the gushing first bite of one of Ed and Ibby's bright red, sun-warmed, garden tomatoes. None better. 

I plant about six every year because I love tomatoes, but mine never measure up to theirs.

Blogging is difficult for me. 

When I began this blog I posted excerpts of chapters of Alzheimer's Daughter, which was then a work in progress. Beyond that, coming up with blogposts was time consuming. I wanted to spend my time writing my book, not blogging. Sometimes a great blog topic would come to me and I'd even begin a draft blogpost, but by the time I returned to the draft the central idea had faded.

Most of those blogposts were prompted by an image, often old family photos or more recent photos I'd taken.

Even though I was frustrated by blogging, I found I loved Twitter. 

Twitter allows me to connect with like-minded people all over the world who write or share an interest in Alzheimer's or dementia.

The problem with Twitter is that each tweet is limited to 140 characters, including spaces and punctuation. Most of the time, I want to say more.

Another downside to Twitter is that the feed zips by so fast with mostly text, hashtags, @s, and links.

So Twitter was too short and blogging required too much length, but I hit the jackpot when I recently found an app called Canva (free from Canva.com). Look it up. Try it out. Using Canva, I can add text, overlays, and special effects to my own pictures. These pictures are colorful in a Twitter feed, standing out from the plain text and links of most tweets.

As I tweet pictures created using Canva, I find there is always a little more I want to say to explain the picture. 

My tweets are always Alzheimer's related, so I'm going to try posting them on this blog too, with just a little more explanation.

This picture of the dense layer of fog reminds me that Mom and Dad often seemed to be foggy in the early stages of the disease. They just couldn't quite retrieve the word they wanted to use, or they couldn't stick with a concept long enough to complete a task. 

The movie, Still Alice, conveyed this idea well. When Alice was lost, whether it was in a familiar place, or lost in a task, the camera blurred. It matched what I imagined my parents must have felt.

I'm tinged with fear whenever I can't recall a word. I haven't resorted to replacing the lost word with "thing-a-ma-jig" or "what-ja-ma-call-it" yet. I guess when I do that, I'll really worry.

If you love Twitter too, follow me at JeanLee18. If you haven't yet given it a try, join and observe for a while, then send me your first tweet.

Publication of Alzheimer's Daughter

After four years of writing, proofing, revising, querying, happy moments, and nervous stomach aches, Alzheimer's Daughter was published on January 16, 2015, the day that would have been my parents' 71st wedding anniversary. 

I began writing Alzheimer's Daughter shortly after my mom died. Dad lived another year. I kept writing, trying to find resolution. The words on the page became my daily connecting point with my parents. Through my words I felt as though I was able to explain to Mom and Dad what happened to them, as well as the actions my sister and I had to take to keep them safe. 

I am the kind of person who reads for support. I read to learn. So, during the path of my parents' disease, I searched for books to help. I found many about the medical science and theories of prevention of Alzheimer's through lifestyle and diet, but there were few personal accounts. 

As soon as I'd find a book that looked good, I'd devour it and search Amazon for another using the key word 'Alzheimer's,' looking hundreds of books deep. Many were negative in tone with longstanding strife between elderly parents and adult children, and even greater disagreement between siblings trying to share the caregiving role. I know there are plenty of negatives to this disease, and in Alzheimer's Daughter I write about those challenges honestly, but I needed positives to keep me afloat. So, I wrote Alzheimer's Daughter, combining love with honesty. I wrote what would have helped me. 

I've been asked if writing brought peace. I'd like to say yes, but it really didn't. The entire time I wrote I struggled because I felt guilt. Alzheimer's is a private disease. It's hard to talk about.

Right up until the actual moment of pushing the 'publish' button, I felt anguish because I didn't know if I had the right to tell this story. 

Peace has come to me through reactions to the book and reviews.

Readers write: 

     "There are smiles and tears in this tale of ultimate love, that which sees this family through a myriad of very hard choices. This book is worth reading, worth saving, and worth consulting if the unfortunate need arises. There are many books written about Alzheimer's. This one opens the door and let's us in."

     "This book offers a deeply personal glimpse into the life of a family battling Alzheimer’s, from its earliest stages – the odd forgetfulness, the tiny mistakes – to diagnosis, to denial, to the debate about safety, and managing simple daily life, to dignity, to end of life decisions, all told in a thoughtful, useful manner to guide others through this same process.

     Alzheimer’s Daughter is a book that will bring knowledge and solace to those grappling with this illness."   

     "Lee’s familiar Alzheimer’s memoir format is elevated to a classic love story by the revelation of Ed and Ibby Church’s extraordinary courtship and marriage. World War II lovebirds, the couple’s timeless love letters are shared at the beginning of each chapter, written during their separation while Ed served in the Army. This touching correspondence adds a romantic element to keep the couple’s devotion, for each other and their family, central to their inevitable fate.

     The dual diagnoses and deterioration, while difficult for Rosie and Annette to manage as caregivers, turns out to be the final blessing bestowed upon Ed and Ibby for a life well lived. The elderly couple’s oblivion to their plight helps them fade away together hand in hand, with neither forced to endure the other’s incapacity.

      Alzheimer’s Daughter is a beautifully written tribute to the extraordinary love and lives of the author’s parents. The story offers a map on how to maneuver through the pitfalls of dementia care while honoring our parents with dignity and love through faith. The memoir reveals a modern day path many others will travel as dementia snowballs into an epidemic as baby boomers age. The journey of Alzheimer’s Daughter leads the reader through a tragic but rewarding love story with heart, like a true version of The Notebook."

If I hadn't written Alzheimer's Daughter I would have only shared small parts of this story in hushed tones with those also on this journey. Instead, by releasing the story, I hope it will help others search for light in the darkness, sunshine through the clouds of Alzheimer's.

Wishing peace and calm for those with whom I share a caregiving brotherhood and sisterhood.

Jean

January 16th would have been my parents' 71st wedding anniversary. Reposting this from two years ago, slightly revised.

Happy Anniversary, Mom and Dad. I envision you reunited and restored, celebrating together in heaven––Dad, your arm is protectively around Mom's shoulders, her head is snuggled into the crook of your neck.

This is one of my favorite pictures of you. I believe it must have been taken when you were dating. When I cleaned out your house, I found the photo stashed in the front of a ripped cardboard box, with a gold foil paper-covered lid, which might have once held Hallmark cards. Inside that box, I found WWII dog tags and your early love letters from 1941 to 1944. I felt like a spy reading something so private between you. In fact, Annette and I nearly threw the envelopes away without ever opening, thinking we were invading your privacy by reading. But, as I started reading, I couldn't stop. The terms of endearment you used revealed much about the way lovers talked to one another. Some of the mundane events spoken of remind me a little of today's texting. In a few, your desire and longing for one another is palpable, yet written discretely.

Each chapter of Alzheimer's Daughter begins with one of your letters, showing your love written in your own words––the beginning of the devotion which allowed you to hold tight until life's end, even as Alzheimer's devoured and ravaged.

I think people can learn so much from your letters. Mom, here is your first letter to Dad. It's obvious you were nervous to write since you weren't dating yet and Dad had just left for the Army.

November 11, 1941

Dear Ed,

I don’t know why––but it seems so much easier for me to tell you in writing how much you mean to me. You know there isn’t anything I wouldn’t do for you. In these uncertain times everyone needs someone to live for, to dream about––without this we’re lost.

Ed, I love you with all my heart. I’d consider it an honor if you’d allow me to wait for you until the war is over.

Why couldn’t I have realized, and told you about my feelings in person, before you left for the Army? I am so very sure now. 

Lovingly,

Ibby 

 This letter was the beginning of a relationship lasting 66 years. Happy Anniversary, Mom and Dad!

Chantilly

If someone had asked me what scents and fragrances I remember from my childhood, apple pie, meat loaf, Wrigley’s spearmint gum, and line-dried clean sheets might have come to mind. But last Friday while at the checkout in Dollar General, I saw this.­­

Stopped in my tracks, paralyzed, I was unable to move forward. No, I didn’t need to spend the $2, but the coral and white paisley packaging as well as the memory of the soft spicy musk of Chantilly made it impossible for me leave without handing this to the clerk as she scanned my purchases. 

On my way home, memories drifted through my mind. My parents, my sister, and I lived in a small, three-bedroom ranch with one bathroom. By today’s standards, one bathroom might seem inconvenient, but in the late 1950s we just felt lucky to have a bathroom. No one I knew had more than one bathroom, and many families had five or six kids. The medicine cabinet held everyone’s toiletries and toothbrushes. But, the Chantilly dusting powder always sat beside the sink. Mom was the last to get ready for bed at night. She’d wait until everyone else had taken their bath, then take her own and scrub out the tub. If I was still awake by the time she was ready to crawl into bed, I’d smell the Chantilly dusting powder as the second-to-the-last step in her nighttime routine. The last step was kneeling to pray at her bedside.

Even though both of my parents died of Alzheimer’s, I feel so fortunate that they were sweet to each other and close until the end. Sometimes when I went to visit them in the nursing home, I’d find them curled up together, Dad’s chest snuggled into Mom’s back, spooned together, his arms around her.

I had not thought of Chantilly for years. But when I arrived at home from my errands, I opened the bottle, sniffed and dabbed a drop in the hollow of my throat. I’ve worn it every day since. Out of curiosity, I Googled Chantilly and learned that came to market in 1941, the year my parents started dating, the year my Dad entered the Army.

Amazing, isn’t it, the way a scent can trigger long forgotten recollections? Thanks for the memories, Chantilly.

Preschoolers and Alzheimer's Patients

When my parents lived in a locked memory care unit, time seemed to pass slowly. Many hours were spent sitting, watching television.

But whenever children entered the unit to visit, residents lit up! My own grandchildren brightened my parent's mood. Dad, who had not played with me much when I was a child, interacted with his great grandchildren, even though he didn't realize they were a part of his family tree.

I was touched by this video which shows preschoolers interacting with memory care patients.

thealzheimerssite.com

Wouldn't it be nice if nursing homes shared walls with preschools, or preschools partnered with senior care facilities for weekly field trips?