Wednesday, September 21, 2016

AlzAuthors: Joy Johnston and The Memories Project

By 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.

About the Author

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.
 
Connect with Joy Johnston
 

Monday, September 19, 2016

Misty of Chincoteague: A Children’s Classic Defines an Island


In a gift shop
I’d venture to say most adults are familiar with Marguerite Henry’s classic children’s book Misty of Chincoteague. Published in 1947, it became a Newbery Honor Book, and in 1961 a major motion picture. It spawned a series of sequels. For decades, teachers assigned it to their students. It is as ingrained in our American culture as apple pie and ice cream. As an author, I marvel at the prospect of writing such a timeless, resilient book, just 173 pages long.    

At the National Seashore gift shop
Chincoteague is a sleepy little island off the shore of Virginia, protected by the barrier island Assateague. Known primarily for the wild ponies that have lived on Assateague for more than 350 years, Henry’s book brought the town to national and worldwide renown. Visitors flock to the island to see the wild ponies. Each July more than 40,000 people attend the annual Pony Swim. And copies of Misty - and the subsequent books in the series - are available for purchase just about everywhere: gift shops, gas stations, delicatessens, hotels. Everywhere.  


Never have I seen a book so proudly
and prominently displayed.
 
In a gift shop
 
Never has a book made such
an impact on a small town.

In a gift shop


In a deli
If you visit Chincoteague today, you will see evidence of Henry’s legacy all over the island. A statue depicting Misty is in the town center. The Beebe family, depicted in the book, owns and operates the Chincoteague Pony Center. During Pony Week, the Chamber of Commerce runs the Misty movie daily in the island’s lone movie theater.

Marguerite Henry was not a native of Chincoteague. She was born in Milwaukee, Wisconsin in 1902. On a visit to the island on Pony Penning Day, Henry learned the story of Misty, and wrote the book with illustrator Wesley Dennis. Published by Random House, it became a huge success, and launched her career as a children’s author. She published 59 books throughout her life, and won the Newbery Medal in 1946, 1948, and 1949. Her last book was Brown Sunshine of Sawdust Valley, a 93-page novel published in September 1996, when she was 94 years old. Marguerite Henry passed away in Rancho Santa Fe, California in 1997.

Wednesday, September 14, 2016

AlzAuthors: Deborah Shouse, 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.

About the Author
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



Monday, September 12, 2016

The Wild Ponies of Assateague Island


Assateague ponies walk the beach.

The 300 or so wild ponies that make their home on the 37-mile barrier island named Assateague are a national treasure. How they got there is up to debate. Some believe they’re descendants of survivors of a shipwrecked Spanish galleon some 350 years ago. Others surmise they're descended from herds local farmers brought to the island to graze tax-free. No matter how or why they came to inhabit this picturesque island, they are a wonder to behold. A glimpse of them grazing in the marshes, running on the beach, or swimming in the ocean evokes sentiments of freedom, mystery, and romance.


Assateague Island stretches from Maryland to Virginia off the Delmarva Peninsula on the Atlantic Coast. It enjoys protection from development and commercialism through the federal government via the National Park Service, U.S. Fish and Wildlife Service, and Department of Natural Resources. In 1965, an act of Congress designated it Assateague Island National Seashore. Left in its natural state, it’s subject to all the elements of nature without help from humans. A simple wire fence at the Virginia/Maryland state line separates each half of the island. The NPS manages the Maryland ponies, while The Chincoteague Volunteer Fire Company owns and manages the Virginia herd.

I’ve been visiting Assateague for more than ten years and never tire of its beautiful coastline, four-wheeling on its beaches, swimming in its waters, and, of course, seeing its beautiful ponies.

One of the best ways to enjoy the island is to visit via the sleepy little town of Chincoteague, Virginia, just minutes from Assategaue's beach. The ponies living on this end of the island are wild but not free. The CVFC guards them closely within acres of fenced land, limiting contact with humans. Interaction with people endangers the animals in a variety of ways: they’ve been hit and killed by automobiles and become accustomed to “people food,” unhealthy for them. They are also known to bite, kick, and injure those who get too close.

The ponies are herded three times a year – April, July, and October - for a head count and, if needed, medical care. July’s roundup is open to the public and a huge event. This is when the CVFC Saltwater Cowboys herd the animals for their annual Pony Week, which includes the Walk, Penning, Swim, Auction, and Carnival. This summer I had the pleasure of participating in my first Pony Week.

Saltwater Cowboys round up the north herd and walk them down the beach.

The events kicked off with the Pony Walk on Monday morning. At 5 am, my family ventured out to the north beach to watch the Cowboys escort 100+ ponies down the shoreline to newly built holding pens within the park. At that time, the public had the opportunity to view the ponies up close, although feeding and handling them was, as always, prohibited.


On Wednesday morning, more than 40,000 visitors flocked to Chincoteague, many before dawn, to watch the Cowboys move the animals from their pens in the national seashore park to marshes across from the island and, when the slack tide was just right, across the channel to Chincoteague.


The Pony Swim was quite a spectacle. The ponies, all natural swimmers, swam the channel in neck deep water while the Cowboys led them to shore. In the Swim's 91 year history not one pony has ever been lost.

Once on land, the Cowboys walked the ponies through town to the carnival grounds and penned them overnight. While there, veterinarians examined them for potential health issues and injuries.


A hungry foal munches on hay after the Pony Swim and walk through town.


On Thursday morning, the CVFC auctioned off this year’s foals. The auction has been an island tradition since 1925 to manage the population so resources aren't depleted. Once purchased, the ponies can be transported anywhere in the United States, and people come from all over to buy a Chincoteague pony. This summer, 57 ponies were sold (including 7 buybacks which were returned to the island) at an average bid of $2,659. Total sales were $151,55o. All proceeds benefit the fire department, currently raising funds for a new firehouse.

Early Friday morning, with much less fanfare, the cowboys led the ponies back to Assateague Island where they resumed their natural lifestyle away from the interruption and interference of humans.


Assateague ponies at home on the beach.

On the Maryland side of the island, the ponies roam free within the confines of the national seashore. They have become acclimated to humans and have no problem raiding campsites and picnic areas for food. For everyone’s safety, interaction with them in any way – getting within ten feet, touching or feeding them – is forbidden because of their unpredictability as wild animals. Violators may be fined. There are no roundups, no Pony Swims, no auctions. The NPS manages the herd’s population with contraception. There is no veterinary care unless due to accident or injury. The Maryland herd is truly wild and free.

The best way to enjoy the Maryland half of Assateague is via Ocean City, as different from Chincoteague Island as night is to day. Ocean City is an exciting vacation spot with more restaurants and shopping than you can fit into your stay, amusement parks, a 2.5-mile boardwalk, and the accompanying crowds and traffic. A visit to Assateague is a terrific way to relax from all that sensory overload.

Whether you choose to enjoy the wild horses of Assateague from the eclectic Ocean City or the idyllic Chincoteague Island, a visit is a must to-do on your bucket list.

Friday, September 9, 2016

AlzAuthors: Kathryn Harrison, Picture Book Author & Illustrator

By Kathryn Harrison 
 
“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. 
 
About the Author
 
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.

Wednesday, September 7, 2016

AlzAuthors: Tracy Vanderneck


By Tracy Vanderneck

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.

Connect with Tracy Vanderneck

Website

Amazon

Facebook

Thursday, September 1, 2016

AlzAuthors: Rose Lamatt, Just a Word

by Rose Lamatt
 

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