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.

Tuesday, August 23, 2016

Meet Marcee Corn and Susan McCulloch, authors of Unclaimed Baggage

Unclaimed Baggage is our personal story about Martha, our mother, and her journey through life and ultimately through Alzheimer’s disease. Our account is told in snippets of anecdotes from our mother’s perspective as well as other family members’ perspectives.

As we begin our narrative, we are driving our mother to the Assisted Living Facility that we collectively agreed was where she needed to be.

Excerpt from Unclaimed Baggage:

Alzheimer’s leaps off the neatly painted sign, as if in neon, beckoning the driver to come on in.

Upon seeing that sign fastened to the front of the building, we feel like traitors, like terrible daughters, and worse, uncaring caregivers. As we enter the lobby Mom is distracted by the colorful parrot in the cage in the corner. She walks the few steps over to him leaving us, and the Assisted Living facility behind, as she is transported back to Bush Gardens, Florida in the year 1963.

She believes this caged parrot is the same one seen all those years ago. In her mind she recalls a memory of when she lined up the five of us to take a family vacation photo. Leslie, the youngest, won’t cooperate and the brightly colored parrot sitting on Bob’s shoulder won’t either. Suddenly the bird bends his head slowly downward and snaps off her husband’s collar button. The whole family laughs as Bob swooshes the squawking bird with his hand. To our dismay, Martha laughs aloud in the quiet lobby.

Unclaimed Baggage is a love story as it spans over generations weaving back and forth over eras. Our tale travels through young Martha’s girlhood, through two wars, over changing decades, right up until the present as she faces and ultimately dies from Alzheimer’s.

It is the story of a real life romance between Martha and Bob, our father. Portions of our story take place in the 1940s world of elevator boys and stolen glances between a young officer and a budding artist in NYC during WWII.

It is also a love story of three daughters who become the caregivers of their mother, after the death of their father. One of the most heart-wrenching things we had to do was to stop calling her Mom, changing that familiar name to Martha, the only name she knew.

Ultimately, it is a love story of God’s love for us, his children.

We wrote Unclaimed Baggage originally for our children and grandchildren, so they could know their Grandmother. It turned out to be so much more than that. Ours is a timeless American story, but a universal one as well, as most of us know of someone or have had first hand experience with Alzheimer’s.

We have had an unbelievable response to our book. When we speak to groups, sharing our story of hope, we are sure to say that we are not experts on this disease. But we do have a unique story to tell.

We have found that Unclaimed Baggage, with its positive twist on a devastating disease, has brought hope to our readers.

As one reader says, “It is a story of heart, hope and courage and sometimes hopelessness, like life itself."

Marcee Corn-author

Susan McCulloch-author

Twitter account: @marceecorn

Thursday, August 18, 2016

Meet Arthur A. Levine, author of What a Beautiful Morning

 Last night I lit a Yahrzeit candle for my father, who’s been gone for two years. And I decided, at the last second, that rather than sing a traditional prayer, I’d just sing a few lines from one of his favorite Broadway tunes. It made me smile in a moment that was otherwise sad.

Like many, my father’s struggle with Alzheimer’s was a long and gradual one, but that did not make it easier for him, and it didn’t make it easier for all of the people who loved him. We had to say goodbye over and over as parts of who he had been vanished like color from a beloved garment, never to be restored.

It was toward the end of my father’s struggle (though even then, the end was agonizingly attenuated) that I wrote WHAT A BEAUTIFUL MORNING, a picture book about a boy and his grandfather (and grandmother!) coping as best they can with the changes forced upon them. I had been visiting my parents every summer on the island where they had a home. It was a special place for all of us.

When my son was a baby, those two-week visits were a blessed reprieve, as my parents would joyfully babysit while my husband and I snuck away for an hour or two to play tennis or go to a movie. And as my son grew, so did his love for these visits. He spent precious unstructured time following his grandfather around and helping with tasks like cleaning up the garden, raking sticks, riding to the garbage dump!

But now everything had changed. My son was still helping, but he was helping my father find his way around his own home. He was making sure grandpa got to the dinner table. It was crushing to him. And confusing.

Now I used my two-hour “break” not to relinquish childcare, but to cope with my own emotions about my father’s struggle, so I could come back and be helpful to my mother, and to my son. So I wrote about my dad and how much he loved to sing. I wrote about the very real way we could still – even as other means of communication had vanished! – sing songs together, how my father’s face would light up as all the lyrics of a complicated song would come flowing out of him. In those few moments of music-making, it felt like we were having a conversation again. And we were.

A dear friend who had been through this same loss advised me that, rather than focus on the long road of loss ahead, I should try to celebrate each individual day in the present knowing and appreciating that it was the best my dad would ever be. I found that awareness and appreciation in music. And I hope maybe reading WHAT A BEAUTIFUL MORNING will bring a moment of comfort to other families as well.

Arthur Levine is the publisher of Arthur A. Levine Books at Scholastic, whose books include the Harry Potter series. He is the author, most recently, of the picture book “What a Beautiful Morning,” about a family dealing with Alzheimer’s disease.

Tuesday, August 16, 2016

Meet Karen Malena, author of Love Woven in Time

Love in the senior years: A true inspiration to me. My parents are married over sixty years as of this writing. Sixty years of ups and downs, good health and bad, happiness and sadness. But one thing remains: a steadfast love. It is this love that inspired me to write; theirs, and another couple: my husband’s elderly aunt and uncle.

You see, when I was a little girl, my mother suffered from mental illness. There were times in her delusion when she barely knew who she was, much like Alzheimer’s. It wasn’t easy and she was hospitalized many times. That is why her recent diagnosis of dementia has been very difficult to take. But as I saw when I was a child, my father puts all of my mother’s needs first. At complete disregard for his own comfort, he would do anything for Mom. He’s remained by her side, loyal, loving, respectful, treating her as if she’s the young beauty he first married so long ago.

I saw another great love. Louise, my husband’s aunt, had a stroke several years back and was hospitalized and eventually moved into a nursing home. Her husband, Hubert, took the time every single day driving to see her, helping her to eat, talking with her even though she couldn’t speak well, and making sure every need of hers was met. There came a time he couldn’t drive any longer, and he would wait as the senior bus picked him up, not missing one day with his wife. When he suffered his own health crisis, he ended up in the same care facility. Though they weren’t in the same room, Uncle Hubert would wheel himself down the hall to spend time with his beloved each and every day.

Hubert and Louise didn’t have many family members, so I became a regular visitor of theirs. I watched as love appeared to grow even stronger as Hubert sat by his wife’s side, gazing upon her as if she was the most beautiful woman he’d ever seen, and talking to her as if she was the only person in the world who mattered.

It was then that a story began forming in my mind. What if an older couple actually met for the first time in an assisted living center? What if a warm friendship was forged, and eventually led to love? My book Love Woven in Time was born.

It chronicles the lives of Harry and Rose, two people who meet in the golden years, both with their own sets of challenges, but the main one being Harry’s onset of dementia. It was carefully written with the help of a dementia coach and author, Carol Howell, and with thoughts of my parents and my husband’s uncle and aunt, giving a story that is tender, believable, and written from the heart.

Though Hubert and Louise have passed, I am blessed to still have my parents. I continue to watch, grow, and learn from them about true love. A bond that cannot be broken. Even with the ravages of time, age, and memory loss.

Connect with Karen Malena at:

Thursday, August 11, 2016

Meet Carol Howell, author of Let's Talk Dementia

My mother, Vera, was diagnosed with Alzheimer’s in October of 2006. That was the day my world changed – forever. I will never forget (or is that statement actually true?) the day I received the phone call. “Mrs. Howell, I am calling to tell you your mother has dementia.” The doctor lacked bedside manner, and he assured me he could call in medications that would make Momma better.

My grandmother (Momma’s mother) had been living with Alzheimer’s for many years at that point, and I knew just enough about the disease to be frightened by the phone call. I felt my knees buckle and my stomach churn as I listened to the doctor talk about Momma, her brain, and her future. 

After finding a new doctor, doing research on my own, reading, reading, and reading, I knew education was a must. I needed to know everything I could to help Momma in this new phase of her life. And so, my dementia caregiving journey began.

After completing classes about dementia and dementia caregiving, I felt compelled to share what I had learned with anyone who would listen. My Amazon #1 Best Seller, LET’S TALK DEMENTIA, is a result of that desire. I felt a need for caregivers to experience HOPE in their caregiving journey. I believed then, and I still believe today, that KNOWLEDGE brings POWER. Power brings HOPE. Hope brings SMILES. And we all need more SMILES!

In addition to writing LET’S TALK DEMENTIA, I started a non-profit named Senior Life Journeys. Through our company we educate caregivers and we offer Creative Music Experiences for individuals with cognitive disorders and for those folks who are on hospice care.

While writing LET’S TALK DEMENTIA, I realized I was doing more for my own healing purposes than anything else. But, as time went by, I knew I wanted to share it with others. I began searching for an agent and a publisher, and God blessed these efforts. Today my book is represented by Hartline Literary, and I couldn’t be more pleased. Through their marketing efforts, I have been able to reach individuals in four countries, been offered speaking opportunities throughout our country (where we educate about dementia but keep the audience giggling and engaged), and began blogging and podcasting about dementia.

Did I ever dream the book would be a best seller? Not in my wildest imaginings! My writing has always been a source of comfort. I can allow my feelings to flow through my fingertips. I can erase and edit and change and add to until my heart is happy with the final product. These words are then shared through books, blogs, and even our new podcast – also titled LET’S TALK DEMENTIA. It thrills me to know my thoughts and education, my tips and hints, my jokes and quips can bring hope and light into the world of individuals who are facing dementia.

We are available at:

Podcast –

Tuesday, August 9, 2016

Meet Marsha L. Burris, author of Miracles All Around Me

My parents raised four children in a small community located near Charlotte, NC where they were active in social and church affairs. Jim coached Little League and Rusty directed the polling place in our precinct. My siblings and I grew up, went to school, and made life-long friends there. But then, gradually, negotiating the complexities of social interactions became more difficult for Mom and Dad and they withdrew from the activities they once enjoyed.

Rusty began losing bits of herself down a dark path through early onset Alzheimer’s. She was the age I am now. My dad had his own set of health issues that ultimately concluded in a stroke. Despite these challenges they worked to maintain their independence at home as long as possible, but eventually they needed help. I lived near them so dropping off groceries on my way home from work, and taking them to various medical appointments, were convenient and happy excuses to see them often. 

The damage caused by the hateful disease of mangled plaques and tangles robbed my mother of her memories and her capacity to conduct her own affairs. This meant my role in their daily survival grew more extensive. I placed all career aspirations on hold and my objective became one of endurance - to simply endure this dreadful course my parents were on. My only goal was to survive the ordeal. A bleak outlook, I know. 

A friend loaned me her copy of John Bayley’s Elegy for Iris in hopes that it would give me solace. I finally read it. This was the first miracle introduced into my life. The book stressed this message: Alzheimer’s disease brings with it its own ‘compensations’ if only you look for them. I begged to differ with Mr. Bayley as I saw no advantages to the destruction Alzheimer’s visited upon my mother’s brilliant and active mind. I set out to prove him wrong but I did the opposite. And this was miracle number two. 

Rusty and I negotiated the world together through the lens of Alzheimer’s for ten years. It was never easy or painless, or without effort. But because I changed my attitude, I became aware of the Miracles All Around Me and accepted the possibility of unexpected gifts associated with the disease, the very things that Bayley called ‘compensations’. 

Chronicling Rusty’s story and giving her a voice helped me place in perspective the profound sorrow I felt because of my father’s stroke and my brother’s suicide while losing Rusty to Alzheimer’s. When I had done this, I was able to feel the grace granted us all when we must face times of crisis.      

Thursday, August 4, 2016

Meet Tanya Ward Goodman, author of Leaving Tinkertown

I grew up in in the mountains of New Mexico in a roadside attraction built by my father.

With the exception of, “I love you,” I have probably spoken this one sentence more than any other. I defined myself as the daughter of Ross Ward, the man who created Tinkertown Museum.

I did not mean to write a book. After my father died from complications of early onset Alzheimer’s disease, I sat down with my journals to try to understand what had happened to me and to my family in a five-year period that began just before I turned thirty.

I often say that caregiving is all about being just hands and feet. You’re running and doing. You’re putting out fires (in my case both real and metaphorical,) without any time for introspection or emotion. As I burrowed into my stacks of yellow legal pads, it was the head and the heart that I was after.

I sat with all of the pages and all of the photographs I’d taken and tried to pay attention to where I felt a kind of heat. I wrote to figure out where I’d been. I wrote to understand what I’d lost. As I wrote, I began to see not just my journey, but the journey of my family. As I wrote, my compassion deepened. I wrote toward questions. Eventually, I wrote my father back to life.

“Leaving Tinkertown,” was published by the University of New Mexico Press in 2013. I have such a hardwired connection to my family and to the glorious red dirt of my home state that it makes a lot of sense to me that I would find my identity as a writer by telling the story of my relationship with my dad.

In the years since the book came out, many people have gifted me with their own tales of my father. Other readers, who didn’t know my dad in life, tell me they feel as though they’ve made a new friend. I’ve met other caregivers and joined my voice in the chorus of those working to raise awareness of Alzheimer’s. We need to find ways to provide respite and home care. We need to increase federal funding for research and ultimately we must find a cure. To achieve these noble ends, it’s my belief that we all need to see the faces of those affected by this terrible disease. We need to hear the stories. All the stories. Writing and publishing “Leaving Tinkertown,” has expanded my life in so many surprising ways. It’s a fitting memorial to the man who showed me how to live with humor, creativity and joy.

When Dad was first diagnosed with Alzheimer’s, we were all sad and angry and afraid, but with Dad’s carny credo, “The show must go on,” as our mantra, we kept moving. The “show” is still on the road. Tinkertown Museum is open to the public and my kids sell tickets during the summer months. They never got a chance to meet their grandfather, but he is a big part of their lives. I’m so glad they have the old stories to keep them company as they begin to tell their own.