Secrets

If you have not been a caregiver--if you’re not living with the disease, you may not understand the concept of secrets when dealing with Alzheimer’s.

If I had been an observer I would have thought, why would anyone keep a diagnosis a secret?

But, I was not an observer. Alzheimer’s invaded and took over my parents’ lives as well as my own when they were both diagnosed on the same day. I was working full time as an elementary teacher, living in the same small town in which I’d grown up, when I assumed the primary caregiving, decision-making role with my 86-year-old parents. They were small business owners, my father still drove, and they lived independently in their own home.

On the day of their diagnosis my dad struggled to his feet shouting, “How dare you use the A. word with me.” as Mom wagged her finger at the doctor scolding, “Shame on you.”

We came home from that appointment and conversation about the diagnosis stopped, unless I brought it up. They denied, saying they didn’t want anyone to know, to think they were crazy, or start gossip.

To respect the parents who had given me everything, I propped them up, protected them and their dignity, while I felt immense guilt whittling everything away piece by piece: their independence, their driving, forcing my dad to retire, moving them eventually to a locked memory unit.

I did not write, Alzheimer’s Daughter, to come clean, be honest, or tell secrets. Through the journey I sought support by reading about personal experiences. Each time I found a similar situation, I thought, If this person survived, so will I. Keep breathing. One week after my mother’s death, when I realized my father had no memory of her or their 66-year marriage, my secrets could no longer be contained, so I wrote the book I needed to read all along. Reviewers say it is written with wincing honesty about the cruel affects of the disease, but a WWII love story held together by faith and family is contained within the pages.

I see a new openness about the disease, especially in those touched by early onset, through books like Greg O’Brien’s On Pluto, B.Smith and Dad Gasby’s Before I Forget as well as Kimberly Williams Paisley’s Where the Light Gets In. When each of us tell our stories and combine our voices, we form a large pool of collaborators offering resources, support, understanding, and empathy.

Let’s not keep secrets any longer. Join us during June, Alzheimer’s and Brain Awareness Month. Speak out.

Meet Tryn Rose Seley, author of 15 Minutes of Fame, One Photo Does Wonders to Bring You Both to Solid Ground

One photo, one song, one story does wonders for your daily life. 

Roll out the red carpet of success for you, the one you care for and any who join your circle of care. 

My book 15 Minutes of Fame: One Photo Does Wonders To Bring You Both Back to Solid Ground empowers professional or family caregivers of those with Alzheimer's and other dementias. Here I share the caregiving strategies that lead me and the ones I care for back to solid ground every day. You'll find ideas that turn a stressful or regular day into an extraordinary one, sparking creativity and gratitude on this path of caregiving.

In my book I share simple yet powerful ways to engage and connect with the person you care for, creating trust between you, allowing you to accomplish your daily tasks with greater ease. I found in my full-time professional caregiving work that something was working; working to alleviate stress, confusion, sadness, and loneliness. It was to tell a person his or her best stories of life. I learned them from nurses, Executive Directors, Activities Directors, or the person themselves: What are the high points of this person's life? Can I bring back the feelings of pride and delight in one's lifetime of accomplishments? The answer is yes, and I felt strongly compelled to write about it, to empower other caregivers, family or professional, to do the same. It filled my cup when I gave full care to those who needed it, and it filled the cup of the person with dementia as well. I wrote this book, and I'm glad to share it with people on the journey with Alzheimer's. 

I currently teach a class called Mindful Art at an adult day program in Phoenix where I see people re-emerge from lost and lonely to connected and calm in each session we spend together. We sing, tell stories, and create art. Currently, the most satisfying part of my work is to share this opportunity with nursing psych students here in the Valley of the Sun; they bring their gifts of kindness, patience, and positive energy to the class, and leave with a broader and more beautiful picture of human beings with Alzheimer's or other dementias. These young people will spread the expertise around as they enter their particular careers, and I am excited that they are building authentic relationships with these people, see them as people first, and value them for who they truly are.

About the Author

Tryn Rose Seley is a professional photographer and sought-after musician. She has supported the lives of young children, those with special needs, and elders with Alzheimer's and related dementias for over 25 years. All of her projects and offerings are designed to empower caregivers and the one they care for. 

Purchase 15 Minutes of Fame: One Photo Does Wonders to Bring You Both Back to Solid Ground 

Connect with Tryn Rose Seley 

Meet Jane Gayer, creator of Dementia City--Adventures of Joe and Al and Jane

It doesn’t matter where we live, what religion we are, how much (or how little) we have, what language we speak or the color of our skin.  Throughout the world, Alzheimer’s is the same monster and we are all just trying to figure out how to deal with it.

You couldn’t write a script with a more compelling storyline of love, laughter, sorrow and loss than what’s being lived right now by Alzheimer’s families around the globe. 

This is our family’s story, simple and real.

My name is Jane and Joe, my husband of 35 years, was diagnosed with Dementia/Alzheimer’s about two and a half years ago. 

I wouldn’t call myself a writer. In fact, I’m dyslexic, which makes writing an interesting challenge.  

My career was in business management.  That fed my purse, but to feed my soul I was an abstract artist, designer, and an actor and director in Community Theater. 

I can find humor in most things. To me life is a comedy, better set to music than tears. But I also know that sometimes life can be a dark comedy, filled with pain and loss.  Someone said to me once, “Don’t you ever take anything seriously?” The answer, “Not if I can help it.”

I decided to personify my husband’s disease and call it “Al” thinking of him as our “uninvited guest”, the hanger-on, the guy who doesn’t know when to go home.  So Al is a metaphor, an image and symbol of what we must live with and struggle through every day.

I wasn’t sure writing a blog was the right thing to do. I worried it might somehow become an embarrassment or humiliation for Joe and for our family. I didn’t know how people would react to so much openness about our struggles; would they think I was trying to garner sympathy or indulging in our troubles?  Would writing about my life provide psychological relief, or would it make things worse?

I have always been able to see the humor in life’s experiences (good or bad) and laugh about them. But Alzheimer’s is serious business. Would I offend readers by making light of all the craziness that comes with it?  

I decided I would have to focus on my own experiences with this disease, to speak solely from the point of view of a caregiver. I would never be able to feel what Joe was feeling, much less capture it in print.

  

I’ve often questioned what I write, fearing I might be in denial or becoming paranoid.  Are things really the way I think they are? (This disease can often play tricks on the caregiver.)

With that said, here I am, with 44 posts hanging out there in the vastness of cyberspace.  So I ask myself, “Would I do it again?” 

The answer is simply, “Yes.”

This little blog is now read in over 25 countries.  It truly is “Al” over the world.  The responses from readers have been heart-warming, serving as a lifeline for me.

So welcome to our world, Dementia City--TheAdventures of Joe and Al and Jane.

Jane Gayer currently lives in Arizona with her husband Joe, but is an Oregonian at heart, having lived in the Northwest most of her life.  The couple has four adult children and eight grandchildren spread around the country.  Jane is retired from a successful career in high technology having managed a number of business entities.  Throughout her life, she has maintained involvement with the arts as an abstract artist, designer and actor and director in community theatre.  In 2013 she received a nomination for Best Dramatic Actress from Southern California’s Desert Theater League. She currently is a caregiver for her husband who was diagnosed with Dementia/Alzheimer’s in 2013.

Hello Everyone,

So many helpful books and blogs are written about Alzheimer’s and dementia. I remember spending hours, day after day, searching online and on Amazon for written material to help me with my caregiving journey.

During June, Alzheimer's and Brain Awareness Month, Marianne Sciucco, Vicki Tapia, Shannon Wiersbitzky and I have taken on a mission – to make it easier to find resources for those whose lives are affected.

We’ve approached 20 other authors who write about dementia, asking them to explain why they wrote their books and we will be posting those articles on a new blog AlzAuthors.wordpress.com. Those articles will also be cross posted on our own blogs.

As an intro, here is a piece written by Marianne Sciucco.

We are AlzAuthors, four daughters who have experienced the pain and loss of a loved one with Alzheimer's disease or dementia. We know the pain of being forgotten. We have all witnessed decline. Most of us have provided countless hours of caregiving. Although we haven't met personally, we have found each other through the books we wrote to share our experiences and become friends. We have all chosen to write about our personal and painful dementia stories to help others who may be on their own journeys. Together we advocate for those with dementia and their families, providing education and awareness of a disease projected to affect 131million people worldwide by 2050. Our stories can serve as guides to the disease process, a caregiver's handbook, or simply the catalyst to much needed conversations among families.

One year ago, we formed a collaboration to pool our talents, skills, and resources to raise awareness during June, Alzheimer's and Brain Awareness Month. This campaign resulted in exposure across dozens of Alzheimer's and dementia websites and blogs and social media. We have come together again to continue our mission to educate and enlighten. This time, we are featuring the work of other authors writing on this subject, to increase exposure of their work and to enable caregivers to discover work that may help them get through their challenging times. It's also an opportunity for caregivers and others to share their dementia stories. Let's start a conversation!

Follow us on our new AlzAuthorsblog, our AlzAuthors Facebook group, and #AlzAuthors on Twitter. Please share your stories. We're waiting to hear from you.

AlzAuthors is:

Jean Lee, author of Alzheimer's Daughter, cared for her mother and father who were both diagnosed with Alzheimer's on the same day. "I wrote the book I needed to read while caregiving for my parents," she says. Jean lived only one mile from them, and her only sibling, a sister, lived 1,000 miles away. "She suggested I keep a journal of things that concerned me about our parents’ health and safety," Jean says. "The journal allowed us to be proactive rather than react to a crisis. I only shared my parents’ illness with a handful of friends and coworkers. I remember them telling me I should write a book about this dual decline. I was too busy trying to stay afloat to give any thought to writing about the experience, except in my sister-journal. However, less than one week after my mother died, while visiting with my dad, I saw he had no memory of Mom or their 66-year marriage. I was stunned, and at that point came to believe my journal could become the core of a book honoring my parents’ love story and documenting their simultaneous decline." Her memoir Alzheimer's Daughter is a beautiful but poignant tribute to her parents and a source of support for caregivers.

Vicki Tapia also cared for both parents. Her mother had Alzheimer's and her father had Parkinson's- related dementia. Vicki chronicled the days she spent with her parents caring for them in their home and then throughout assisted living facilities and nursing homes until their deaths. These diaries became the foundation of her book, Somebody Stole My Iron: A Family Memoir of Dementia. Filled with personal lessons learned along the way, ideas and tips for managing the day-to-day difficulties of dementia, and useful information from experts within the field of Alzheimer’s research, this memoir is a must read for caregivers. "While I cannot tell you it was easy or even pleasant traveling down that rabbit hole of dementia," Tapia says, "for me it was a time of personal growth, as we maneuvered through the disease’s many challenges. Interspersed with those challenges were moments of tenderness and brief, fleeting times of lucidity in one or the other parent that I still cherish. I learned to parent my parents with patience and compassion; caring for them, much as they’d cared for me as a child, so many years ago."

Marianne Sciucco is a registered nurse who assisted hundreds of families on their dementia journeys and watched three aunts succumb to the disease. She recently became the caregiver to a family member newly diagnosed with mixed dementia. Her novel, Blue Hydrangeas, an Alzheimer's love story, is based on many couples she worked with, one in particular. "As a nurse, I'm the keeper of many stories," she says, "which really are about the human experience, and because I write and have those skills, and I desire to do so, I feel I have an obligation to tell these stories." It is ironic she is now living out a dementia story of her own. "Alzheimer's is always on my radar, but I did not expect this person to be the one. Suddenly, I am the one with all the answers, all the responsibility. It's overwhelming. The wealth of knowledge I have gained from my years as a nurse and writing about it keeps me sane."

Shannon Wiersbitzky witnessed the decline of her beloved grandfather from Alzheimer's when she was just a child. "I spent my childhood summers with my grandparents in a small town in West Virginia, not totally unlike the fictional town of Tucker’s Ferry in my book," she says. "As a result, my grandparents became like second parents. When I was in my twenties, my grandfather was diagnosed with Alzheimer’s. I hoped and prayed that he wouldn’t forget me. But of course, the disease doesn’t work that way, and I was forgotten along with everyone else he loved. The moment I realized he no longer knew who I was is something I will never forget. It broke my heart. And it was that nugget which inspired my novel, What Flowers Remember." In the drama of Alzheimer's, children are often overlooked, their observations and points of view neglected. What Flowers Remember helps open a discussion with young people about what's happening with Grandma or Grandpa. It is a heartwarming story of love and loss, of a young girl coming to understand that even when people die, they live on in our minds, our hearts, and our stories.

Chantilly Kisses

My sister lives in Florida, I in Ohio. I remained the home town girl, living within one mile of my parents. Even though my sister lived 1000 miles away. She was actively involved in their care prior to and throughout their illness. She often flew in specifically to be the bad cop, so I could remain the loving caregiver.

She helped with three moves, first relocating Mom and Dad from their long-time home to a senior facility, second to assisted living, and last to a locked memory care unit.

When she wasn't with me, she was my therapist by phone. I called her on my drive home after every visit.

We felt so lucky that she was able return home in time for both Mom and Dad's passing, only made possible by the keen awareness of Hospice caregivers.

Today marks the sixth anniversary of our mom's passing. Although my sister and I talk by phone regularly and have seen each other a couple of times a year since our parents passed, we've not been able to be together to mark this anniversary since the morning we held Mom's hands as she took her last breath. 

My husband and I are on a short vacation in Florida, staying about two hours south of my sister's home. Tonight we are driving half way to meet for dinner. 

I'm taking my sister the scent Mom always wore in hopes that we both feel her kiss when we spritz.

An Alzheimer's Love Story

When I wrote Alzheimer's Daughter I was plagued by guilt from exposing what I thought were privacies. 

Even though I tried to bury the manuscript many times, it kept coming back, haunting me when I was doing the mundane such as driving, working in the yard, laundry. Beautiful phrases entered my dreams and woke me at hours too early to be called morning.

Mom and Dad's love letters, from their early dating through their early marriage, 1943-1944, found their way into the book as chapter beginnings. These letters speak the language of WWII. She tells him he looks 'swell' in his Army uniform. He wishes he could mail himself to her. He compliments her on the perfume she spritzed on his last letter. She tells him she received $2 as a bridal shower gift and put it immediately into War bonds. I almost didn't publish the letters because I was convinced it was another breach of their privacy.

I thought I was writing about Alzheimer's. But reader's who review the book speak equally about the love story. Without Mom and Dad's voices, Alzheimer's Daughter would be depressing and nothing but a sad decline. Their letters tell of the enduring love which began more than half century ago and sustained them to their dying breaths. If only we could all be so blessed. 

Thank you, Ed and Ibby for entering the manuscript and letting your own love shine through to readers. 

I post this as Valentines Day, the season of love, approaches but love has no time or date. Love never ends. 

Small Town Living

Snow is predicted here over the next couple of days. We're ready, after all it's January in Ohio and so far we've had a Carolina winter.

 

Now that I'm retired, I've become compulsive about scraping and shoveling. I've slipped on ice before and injured my knee. So I don't want to be the cause of anyone hurting themselves in my driveway. 

However, always when it snows, I remember back to the winters Mom and Dad were still in their home and I was working full time. Hurrying in the morning, I'd bundle up in my boots, start my Jeep, let the defrost and heat run until I could scrape my windows, then I'd inch my way to school. When I stopped at the single traffic light in my little community, I'd hope and pray that my mid-80ish, fragile parents wouldn't venture outside in the treacherous conditions. 

I'd repeat the scraping and defrosting ritual at the end of the workday as I left school to head home. On my way I'd stop by Mom and Dad's house to check on them, thinking I'd probably have to shovel a path to the door. Instead, I'd be flooded with warmth and relief to find that a kind neighbor had plowed the drive and shoveled the walks. Now, that's small town love and caring. 

I'm so thankful to have been raised and nurtured in a small town where people know and care for each other.

Even though I've moved from that small town to a smaller town—we don't even have a stoplight, just a roundabout—neighbors care for one another. We trade baked goods, babysitting, and fix-it talents. We watch each other's homes and gather mail when anyone is out of town. And inevitably when there is a big snow, I hear a tractor in the driveway digging us out.