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.

Wednesday, September 21, 2016

Meet author and Alzheimer's caregiver advocate, Joy Johnston





I write about Alzheimer's because my father's experience with the disease turned me into an advocate, not just for those with Alzheimer's, but for their caregivers as well.

My father lived with Alzheimer's disease for about four years. In that time, my father went from fully independent to living in a memory care center. My mother went from healthy and active to stressed and exhausted, and I believe the prolonged period of stress contributed to her colon cancer diagnosis, just six months after my father died.

As a long-distance caregiver, I experienced my own challenges. It was difficult keeping track of my father's condition, as details were filtered through my mother's optimism, which was welcomed at times, and a hindrance at others. Because my father had not shared his end-of-life wishes, my mother and I were forced to muddle through those difficult decisions. I now encourage everyone to document their medical care wishes, regardless of age and current health.

Shortly after my father died, I began The Memories Project blog. I wanted to make sure I captured the memories I had of my father in writing, and through the process, I realized there was so much I did not know about him. The lesson I learned was to never take a loved one, and their stories, for granted, as Alzheimer’s can swoop in and rob a family of those precious memories. What began as a tribute to my father has transformed over the years to also include discussions on caregiving.

Starting the blog opened up other writing opportunities, which allowed me to further discuss Alzheimer's impact upon society. I was featured on NPR's Shots blog and also had an essay included in Chicken Soup for the Soul: Living with Alzheimer's and Other Dementias. I received the 2015 Rick Bragg Prize for Nonfiction from the Atlanta Writers Club for Greetings from the Nursing Home, a personal essay about my father's dementia experience.

I have gained blogging friends from The Memories Project that I hold dear in my heart. Over the years, some have lost parents or other loved ones, many to Alzheimer's or other forms of dementia. I have learned so much about dementia, in all of its dastardly forms, through their blogs. Hearing their stories only encourages me to continue advocating for better Alzheimer's treatment options and greater assistance and resources for caregivers.

Currently, I am a featured author on The Caregiver Space and am working on a collection of personal essays about Alzheimer's and caregiving. Alzheimer's may have claimed my father's memory, but I hope to never forget the impact the disease had on my family, and how we must come together as a community to raise awareness and push for better treatment options, more affordable care options, and financial and emotional support for caregivers.

# # #

Joy Johnston has been a digital journalist since 2002, and has worked for the Atlanta Journal-Constitution, About.com, and AOL. She currently serves as a National Content Editor for Cox Media Group, where she specializes in creating viral content that drives web traffic and social engagement.


Wednesday, September 14, 2016

Meet Deborah Shouse, author of Connecting in the Land of Dementia: Creative Activities to Explore Together


Fingers on the Keyboard, Heart on the Page
By Deborah Shouse


As my mother moved deeper into dementia, I treasured every moment of connection with her. Often it was only a minute or two, sitting shoulder to shoulder on the bench in the courtyard of the memory care unit, watching the community bunny rabbit nibble on grass. Leafing through a celebrity magazine and Mom pointing to George Clooney saying, “He’s good looking.” (Her first sentence in days—dare I tell my father?). Looking into her eyes and singing “Oh What a Beautiful Morning” and other songs from favorite musicals, I was always looking for new and creative ways to feel close to her.

After Mom died, my partner Ron's parents each lived with dementia and we continued our quest for connection.

This quest was extremely meaningful for me and I wanted to write about the creative possibilities inherent in being a care partner for someone living with dementia. But I didn’t know how or where to start. The documentary film, Alive Inside, pointed the way. When I watched this powerful movie about music transforming the lives of those living with dementia, I instantly knew I wanted to write about this subject.

I contacted a national magazine and suggested an article. The editor asked, “How else are people communicating with those living with memory loss?” As I researched the question, I discovered a whole new world. Across the globe, writers, painters, musicians, gardeners, dancers, expressive therapists, and other innovators were using the arts, creativity, and imagination to tap into the spirit that thrives in those living with dementia. I was intrigued and I knew family and professional care partners would benefit from their ideas.

My final motivation came from a friend, who plaintively asked, “What are we going to do all day?” Her husband was living with dementia and their normal activities were becoming harder to do. She helped me understand that whatever I wrote about needed to be accessible, adaptable, intriguing and easy to implement, for friends and care partners, both family and professional.

For me, this book was a work of the heart. I had already written about my experiences with my mother in Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey. I knew the emotional healing, the joyous sense of connection, the widening of my heart, and the expansion of my thinking that came from sharing my stories with others.

Before I began writing, I asked various family and professional care partners, “What do you think of this idea: a book about staying connected through creativity and imagination?” They were excited by the hope and engagement the book promised. So I started reaching out, often cold calling visionaries in the field. Every person I approached was excited by the subject matter and each interview inspired me and enriched my book. After each conversation, I asked, “Who else should I talk to?” By following the flow of ideas, I talked to dozens of creative experts in all areas of the world, collecting their ground-breaking ideas, and translating them into easy, meaningful activities both partners could do together.

This writing project is now complete and I am still following the flow as I seek ways to share and market the book. The cascade of ideas opens my mind and heart and reminds me to live in curiosity and wonder, a great state of mind for a writer.

Deborah Shouse is a writer, speaker, editor and dementia advocate. Deborah’s newest book, Connecting in the Land of Dementia: Creative Activities to Explore Together, features dozens of experts in the field of creativity and dementia. These innovators share ideas that engage the creative spirit so care partners and people living with dementia can continue to experience meaningful moments of connecting. Deborah and her partner Ron Zoglin raised more than $80,000 for Alzheimer’s programs by donating all proceeds from her initially self-published book, Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey, to dementia-based non-profits. Central Recovery Press has since published an updated version of Love in the Land. To learn more about Deborah and her work, visit DementiaJourney.org


Wednesday, September 7, 2016

Meet Kathryn Harrison, author of Weeds In Nana's Garden

To plant a garden is to believe in the future.” Anonymous


It was a spectacular day in my mother’s beautiful garden. And despite her recent decline from dementia, my mom, or “Nana”, walked happily together with my young daughter and I. My active 5-year-old girl skipped ahead through the now somewhat overgrown beds, but soon circled back with freshly picked blooms to share. 

Later that day, as we arranged the flowers, my daughter talked about how Nana’s garden had more weeds than before. This observation gave me an opportunity to explain again that her Nana had a type of brain disease that we’d call dementia. It was Frontal Temporal Degeneration. My young daughter then made a clever connection, remarking that like the weeds taking over the flowers, the disease was taking over Nana’s brain. 

This powerful metaphor immediately stuck and we used it throughout my mom’s dementia journey to help explain the disease. I found it particularly helpful to encourage my kids to stay connected with their Nana; something I treasured because having my young children remain involved really helped! 

My kids were more accepting of their Nana’s changes than most adults, not so much focusing on what we were losing with the illness but on what could be gained from the current situation! Early on, they found their Nana had a spontaneous spirit and was eager to play with them! Later, as she became quieter and less mobile, they found she was always available for hugs and listening. They remained positive throughout the journey and lent me strength. Further still, they learned to help care for her as she progressed, developing their own compassion and confidence.

From my dementia experience with my kids, I was motivated to look for ways to help other families further engage children. Fast forward several years and my daughter’s clever metaphor was the inspiration behind my just published illustrated children’s book about Alzheimer’s disease and other dementias, Weeds in Nana’s Garden. I decided to create an approachable but informative picture book so that I could help many children better understand these brain diseases and in so doing, facilitate their involvement and help even more families!

To bring the book to life, I spent much time in my mother’s garden and painted large scale illustrations. I also visually added a portrayal of the disease progression. As you turn each page, you see less colour and light, more darkness and tangled lines. Then, unlike relentless dementia, this garden gets a second life. The granddaughter in the story learns to take over as the magical garden’s caregiver and brightness starts to return to the pages. We’re left with hope for the future.

Today, this hope stems from the many efforts currently underway to support and find a cure for dementia diseases. And to join this movement, each book sold will contribute $1 towards the Alzheimer Society of Canada – an organization that has supported me greatly and Canada’s leading health charity for dementia diseases.

As well as receiving positive reviews and hearing from enthusiastic customers, a few surprises have resulted since my book’s launch 6 months ago. There has been a broader interest in the book for elementary schools than I expected. Many teachers are adding it to their classrooms and find that kids are not only drawn into the story but are bursting eagerly with questions afterwards. In fact, the interest is great enough that plans are underway to partner with my local Alzheimer Society and visit several elementary school assemblies this year. Using this forum, I can connect with hundreds of kids at once! I’m very excited to be able to open up the minds of so many children about dementia diseases, as it will certainly build greater overall understanding! 

Also unexpectedly, from my online communications about the book I have formed new, rich relationships with many people around the world who share a dementia experience. Although each person’s involvement is unique, we are powerfully connected by these diseases and provide frequent and heartfelt advice, encouragement and inspiration for one another. When I embarked on creating a book for kids, I never thought it would result in creating such supportive and meaningful interactions with adults! 

Today, I walk happily together with my now teenage daughter through my mother’s garden and feel proud and grateful about how, although different, her garden is still blooming with such important gifts to share.


BIO

Author / Illustrator Kathryn Harrison is a business professional turned artist. She has a B.Sc. in Psychology, an M.B.A and worked for over a decade as a Communications professional before earning a Fine Art Diploma from the Toronto School of Art. Although she has done much creating in her life, in writing and illustrating this picture book, Kathryn has been able to layer all her varied abilities together. 

Stirred by her personal experience with her mother’s dementia, Kathryn created this book to support families and spread awareness of Alzheimer’s disease and other dementias. To take it further, she founded Flipturn Publishing to publish the book, enabling her to make donations to the Alzheimer Society of Canada for every book sold. A former competitive swimmer, Kathryn used the name “Flipturn” to acknowledge the need to turn and face a new direction once dementia arrives in the family.


She dedicated the book to her mother, Bonnie Harrison, but it was created to honour all those who are afflicted with dementia diseases and all those who never stop loving as it endures.

Monday, September 5, 2016

Meet Tracy Vanderneck, author of The Risk of a Fall


Florida is the retiree mecca of the United States. As residents, we are used to conversations that begin with, “You live in Florida? My parents retired there…”. Yes, we know. Everyone’s parents retire here. My family was no different; we migrated after my grandparents retired here in the 1970s.

The reason I bring up the age and retirement demographic of the area is that it also means there are many people here in their forties, fifties, and sixties who are caregivers for older relatives. Dinner parties are fraught with stories of relatives’ broken hips, the anger that comes with loss of mobility, horrible driving, the forgetfulness and paranoia that comes with dementia, and most often – the cruelty that is heaped upon caregivers who once had close relationships with the person in their care. Plans are often postponed because friends have to deal with a medical or housing emergency that comes up for their elderly parent.

I wrote The Risk of a Fall, a novel, after a particularly difficult few years with my grandmother. She was in her late 90s, independent to a fault, and morphing from the spunky conversationalist she’d once been into the bitter, spiteful, distrusting, and paranoid person she became in her last few years.

The Risk of the Fall is a fictional amalgamation of thoughts, feelings, and situations that either happened in my own family or that I’d heard in stories from other people. The book is a bit unique in that it is written from two characters’ perspectives (actually three, as a third character narrates a few chapters). It first occurred to me to write it that way after I’d had a uniquely difficult conversation with my grandmother about her living arrangements.

To put it bluntly: she was pissed off. And I was on the receiving end of that ire. At first I was fuming, then hurt. Then I tried looking at it from her point of view. She’d lived to be in her late nineties, had been a widow taking care of her own affairs for the last twenty years, and now she was having to share decision-making about her life with a granddaughter sixty years her junior. I realized how powerless she must have felt, and that led me to the exercise of trying to view everything from her point of view.

Over time, I listened to caretakers in tears because of the awful things their elderly parents had said to them; I listened to seniors (especially in the few years when I took my dog to visit nursing homes as a therapy pet) complain about their families “doing everything wrong” and for treating them “like a child”.

Out of those experiences came the idea to write The Risk of a Fall from the perspective of both the caregiver and the person in need of care. In doing so, I think I was able to capture the frustration felt on both sides.

I have been told by caregivers and healthcare professionals that when they read The Risk of a Fall, it makes them feel like someone out there understands how hard they are trying and how soul-crushingly tired they feel. But it also gives them a bit of an “a-ha” moment when they stop and think of how their elderly relative or patient might be viewing the same situations.

The multi-view perspective the reader has of the family in The Risk of a Fall shows how desperately hard everyone tries, how much love is involved, and ultimately, how diseases that come with aging can be explosively destructive forces that leave no one unscathed. 



www.twvanderneck.com

https://www.amazon.com/Risk-Fall-T-W-Vanderneck-ebook/dp/B008BO0RBE/ref=sr_1_5?ie=UTF8&qid=1469998299&sr=8-5&keywords=the+risk+of+a+fall

https://www.facebook.com/TheRiskOfAFall/

Thursday, September 1, 2016

Meet Rose Lamatt, author of Just A Word


When I found Carol's little black date books in storage and my recordings of Carol's fight with Alzheimer's, I knew I needed to combine the two and write a book. That’s what I did, so others would know this awful disease.

In 1990 little was known about Alzheimer’s when the doctor called saying, “I’m sorry, Carol has a dementia disease known as Alzheimer’s.” She was sixty-four years old and I didn’t believe it. I had to fight my way in and out of the disease's process to learn it. Being a gay couple, we didn’t run into many folks like us at caregiver support groups and felt this story needed telling.

An excerpt:

"Today is the first day I've had the desire to write. I've thought about it for months, even years, but this is the first time I feel the need. I want to write of the struggle she's going through with this horrific disease; the everyday living. I want to write how the caregiver loses herself along with the victim. Victim--first time I've used that word. But there is no other word that best describes it. Carol is a victim of time. 

"I've lost any thought that she'll get better. I've come to the conclusion I'm living alone, even though she's with me in body. She doesn't talk to me in understandable conversation. We play charades to discover what she wants. I've stopped all walks and exercise. I don't want to go to the store because I'm alone, even though she's at my side. I hate life. I'm eating fatty foods, hoping to have a heart attack and die. Then I won't have to face her dying in front of me, inch by inch."

Alzheimer's. Just a word... How can one word destroy two lives...yet I learned so much from that one word. Through the years, those with the disease and their caregivers have thanked me for writing JUST A WORD. When I gave books to neighbors they said the book helped them know what the future held for them, how to plan ahead. At some point I’d hoped it would become a play. Maybe, who knows? 

Am I at peace with what I wrote? I’ll say yes, but at times I wish I had written it in story book form. But this was the truth, what actually happened, written in my words and Carol’s daily date books. But I won’t truly be at peace until I see a cure for this horrendous disease.

For these past ten or more years I’ve posted news articles so others can learn what Alzheimer’s does to the person who cares for the patient. How a patient can walk out the door of their home, or assisted facility, never to be found again. How a caregiver can become ill and destitute because the disease drains body and money.

Carol's Alzheimer's led me to lead support groups, work in Adult Day Care and an Assisted Living facility. Alzheimer’s is still in my life every day, as I help others online or wherever I live.

So many years later, Carol comes to me as Flutter By, her name for Butterfly. She comes in dreams. At times I feel her surround me saying, "Everything will be okay." Especially when I was living in a homeless shelter. 

Connect with Rose Lamatt






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

www.unclaimedbaggagethebook.com

www.facebook.com/unclaimedbaggagethebook

www.facebook.com/marceecornsusanmcculloch

unclaimedbaggagethebook@gmail.com

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.