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 20, 2017

Meet Candy Abbott, author of I've Never Loved Him More


 



By Candy Abbott


A Husband’s Alzheimer’s, A Wife’s Devotion

“Mom,” my daughter Kim said, “You know you’re going to have to write a book about how you’re dealing with Dad.”

I recoiled at the thought. It was all I could do to get through each day of unknowns and added responsibilities. “No, hon. I have to live this before I can write about it. I have no energy to think about ministering to others right now. Maybe after it’s all over—maybe then, I could think about writing—but not while I’m dealing with all this raw emotion. I’m still finding my way.”

A couple of weeks later, I shared my struggles as an Alzheimer’s caregiver with Delmarva Christian Writers’ Fellowship. During the coffee break, Claire Smith touched my arm and looked deep into my eyes. “Candy, you need to write a book about this, you know.”

I flinched and felt my face flush. “That’s what Kim said, but I don’t think so. Not for years, anyway. I have to get through this first.”

She tilted her head and said with a knowing look. “We’ll see.”

I wanted to smack her encouraging prophetic face. Instead, I smiled sweetly. But a seed had taken root. I felt it in the core of my soul.

And then came the phone conversation with my writing mentor, Nancy Rue.

“Everywhere I turn, people are telling me that I need to write about this, and I don’t have the time, energy, or inclination.”

“Well,” she said, “don’t think of it in terms of writing a book. Just try capturing some scenes now and then that seem significant. I think it could be therapeutic for you. No pressure, no goals, just get some of these things out of your head and heart and onto paper where you can look at them. It’ll give you a little bit of control, and it won’t be hard. Just capture some scenes.”

Nancy was on target. Right from the beginning, my manuscript began teaching me things about myself as I recorded my raw emotions and the mysterious changes taking place in Drew. I shared parts of the manuscript with Sara Lewis, and she said, “Candy, people need this NOW. You have to publish this as soon as possible.”

And so I did. Drew is still in the moderate phase of Alzheimer’s, and I have to hide all evidence of the book as he thinks he’s perfectly fine. But I have peace that I’m doing the right thing by releasing our story while he’s still living.

One woman said the first few pages brought healing of unresolved grief over her grandfather. Another said she overcame guilt over how she had cared for her husband until she recognized herself as a Proverbs 31 Woman. A seven-year-old granddaughter with severe anxiety reads the book with her grandmother every night. “She may not understand everything,” Sharon said, “but she feels the love.”

What pleases me most is that people see hope between the pages. I suspect my hardest days are yet ahead, and I’m still writing. But this I know: Alzheimer’s doesn’t have to break you. It can make you trust God more and teach you to appreciate living in the moment. It’s all about finding a depth of love you didn’t know you had in you.

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Wednesday, September 13, 2017

Meet Christina Britton Conroy, author of "How to have Fun with your Aging Parents"


By Christina Britton Conroy

When I was twenty-seven, my sixty-year-old mother died of cancer. I was left to care for my temperamental, over-controlling, eighty-year-old father. While grieving for my mother, I was also angry with her for dying young. Taking care of her elderly husband was supposed to have been her job, not mine.

Dad was bored, lonely, and wanted me to come over daily. I was a fulltime musical theatre performer struggling to build a career, find a husband, and a start a family of my own. An aging father did not fit into that equation.

We had never had fun together, and I didn’t know what to do with him. I finally figured out that the only thing he enjoyed was talking about himself. I didn’t know it, but reminiscing with him was the start of my work as a Creative Arts Therapist.

I bought Dad a small cassette tape recorder and he recorded his stories. Every time he held a finished tape in his hand, he felt happily fulfilled. He died peacefully at the age of 92.

The next Christmas, I was hired to sing carols at a nursing home. I took my small Irish harp and entertained a half-dozen residents at a time in several locations around the building.

Unlike singing on a stage with a faceless audience in the dark, these few, frail people stared vacantly. I started singing Hark the Herald Angels Sing. Suddenly, like wilted flowers given water, they seemed to bloom with new life. Shouting out the lyrics, they sat up singing with pure joy. For the first time, I realized that music could be much more than just entertainment.

That night changed my life. I applied, auditioned, and was accepted into NYU’s Music Therapy Master's Degree program.

Years later, I was the director of a senior center for the well-elderly. One member was 67-year-old Bill, crippled from polio and wearing leg-braces. He had never attended academic school, but only a trade school where he learned make costume jewelry. He was shy and bored, had little musical ability, but enjoyed singing in my chorus, and playing in musical improvisation sessions.

After about a year of improvising, Bill and a few other center members asked me to start a band. Shocked, but intrigued, I carefully explained that playing “real music,” meant they had to learn to play musical instruments. They were still adamant, so the band was formed.

Bill played the bass drum, loved it, and his self-esteem grew. He became so proud of himself; he volunteered to teach a jewelry-making class. Before long, his two-dozen elderly students opened a store and were selling jewelry. The sales made money for the center, and he was suddenly a very important guy. If Bill had never tried playing a drum, he might never have gained the personal confidence to teach a jewelry-making class, rediscover his old passion, and create a product that benefitted so many.

Learning a new skill can rekindle passion in an old one. Sharing a passion, can ignite passionate joy in others.

* *

"To all adult children, caregivers, professionals read this book! Conroy's approach aligns with 'Positive Psychology' – focusing on one's passions and strengths.

Gerald Solk, Ph.D., CUNY, Psychologist, Gracie square Hospital

"…an insightful, unique approach to helping people cope with the demands of dealing with the elderly." 

John J. Daly, M.D., NYC Police Surgeon, St. Vincent's Hospital, NYC

"…social workers, nursing home and community center staffers, psychologists and family members… could all benefit from this information."

Judy Foust, R.N., U.S. Army Hospital, retired, Low Vision Specialist, Lighthouse, NYC

About the Author


Christina Britton Conroy, M.A., L.C.A.T., C.M.T. is the founder and Executive Director of Music Gives Life, bringing musical performing into the lives of senior citizens. Many of her elderly showstoppers, ages 60- 101, never performed in public before joining Christina’s program. NY1 - TV NEWS named them NYers of the Week. A former senior center director, nursing home music therapist, and primary caregiver for two elderly family members, Christina has unique insights into the joys and frustrations shared by geriatric patients and their caregivers. Also a classically trained musician/actor, Christina toured the world performing musical theatre. She lives in Greenwich Village, NYC with her husband, actor/media-coach/cartoonist Larry Conroy.

Wednesday, September 6, 2017

Meet Lori LaBey, founder of Alzheimer's Speaks

A Gift in a Strange Package




By Lori La Bey, founder of Alzheimer’s Speaks

I have to admit caring for my Mother with dementia was not on my bucket list. In fact, the possibility never crossed my mind. Dementia crept into our lives slowly. Its visits were spontaneous and behavior changes subtle giving me the perfect excuse to live in denial.

Mom’s dementia symptoms began our thirty year journey down the yellow brick road. We were off to see the Wizard. Yet along the way, I found I had the answers I needed: acceptance, forgiveness, compassion and unconditional love. All were tools my Mother taught me growing up. I also needed to acknowledge and embrace our new lives. You see, dementia was not just my Mother’s disease. It was “our disease,” hers, mine and everyone she encountered. I found each of us has a choice on how we are going to live with dementia.

Will it Be a Gift or a Disaster in Your Life?

Through illness, I was taught life lessons I wouldn’t have experienced otherwise. The beauty of each lesson can’t be put into words, but each is embedded in my heart and my soul. Each is a memory of magnificent proportion. Each was brought forth by a simple question I would ask myelf.

“What’s the Lesson?”

Each lesson was wrapped in a love deeper than I previously knew. By asking this simple question when I felt pushed up against a wall, simple answers came.

Answers Changed My Career and My Life

I felt strongly that the old ways of caring and serving those with dementia wasn’t working, and for me working in a broken system wasn’t an option. So, in 2009, Alzheimer’s Speaks was born. My goal was to raise all voices, share knowledge and empower all to shift our dementia care culture from crisis to comfort.

Today, we are an advocacy group and media outlet making an international impact. We provide education and support for those dealing with all forms of dementias. Two of our educational platforms are: Alzheimer’s Speaks Radio believed to be the first program dedicated to dementia in the world and a webinar series called, “Dementia Chats™” whose experts are those diagnosed with some form of dementia.


Maria Shriver honored La Bey as an “Architect of Change” for Humanity.


Named the “#1 Influencer Online for Alzheimer’s” by Sharecare and Dr. Oz 

People kindly refer to me as the spark igniting the first Dementia Friendly Community in the United States and for helping expand the UK’s Memory CafĂ© concept in America.

There is nothing like finding your purpose and passion in life which allows you to help others. This fall we are setting sail with a Dementia Friendly Symposium and Cruise which will be an exceptional experience as we live gracefully together with dementia.

Makers of the Hollywood film, “His Neighbor Phil,” consulted with me to design a marketing plan. I was thrilled they were willing to try something new. The response has been remarkable as I have taken the film around the country doing talk backs. The film has proven its extraordinary ability to connect with audiences, remove stigmas and give hope.

As for the future, I will continue to keynote, speak, train, write, advocate, collaborate and push innovation forward developing new delivery systems and attitudes towards those living with and dealing with dementia.

For additional information, resources or to be a featured guest or sponsor visit: www.AlzheimersSpeaks.com

Wednesday, August 30, 2017

Meet Margo Rose, author of "Body Aware Grieving"


The Last Christmas Present

By Margo Rose

The first client with advanced Alzheimer's who I worked with as a fitness trainer was named Gwen.

When I met her, she was 92 years old and had already lived for five years in the dementia section of an assisted care facility.

I never met Gwen’s adult daughter, who had seen on the internet that I work as a fitness trainer doing on-site senior wellness. My only point of contact was a phone call from the daughter asking me to help her frail mother stay as strong as possible, and a monthly check that arrived in the mail.

I didn't know much about Gwen’s personal life, or what she had been like before Alzheimer's had influenced her personality.

Gwen was so sweet and easy to love! She never remembered me, but was happy to meet me twice each week. Since she was physically so weak, we would do some exercises from her bed and others from her wheelchair and still have time remaining in our one hour session.

“Would you like to go explore the garden, Gwen?”

The answer was always "yes," so I would roll her wheelchair out to a shady spot on the beautiful patio.

It was hard for Gwen to make conversation and since I didn't really know her, I would guess at what keywords might trigger happy and fond memories for her. Do you like to have picnics? Have you been to the beach? What are your favorite drinks? Do you enjoy lemonade?

Soon after my first Christmas with her, I was surprised, but not really, to get a phone call from her daughter letting me know that Gwen had passed away peacefully.

What the daughter said next remains to this day, my favorite and most touching compliment ever as a fitness trainer. She told me that after five years of extremely depressing Christmases with Gwen’s declining conversation skills, during this recent and final visit Gwen had been more able to talk with her family.

I do not claim to be responsible for the improvement in Gwen's communication abilities. Her daughter, though, said to me, "You've given our family a beautiful gift. Our last memories with our mother and grandmother are very loving, and we will cherish them.”

Wow. It is such an honor to be invited into people's families and to meet their parents, who are still so beautiful, despite their decline and challenges.

I send love to each of you reading this who are caring for someone. One thing I have seen in every caregiving circumstance so far, is that your friend or family member who is struggling with the frustrations of aging and/or illness appreciates your help much, much more than they are able to express to you directly.

About the Author:

Margo Rose is a fitness trainer, author, and radio podcast host.

She has created a system of self-care called Body Aware Grieving that helps people avoid accidents, injuries, and stress-related setbacks during times of loss or grief.


More info, blog and podcasts on her website: https://www.bodyawaregrieving.com/ 

For bulk discounts on books, or personalized consulting Margo can be reached by email: https://www.bodyawaregrieving.com/contact/ 

Twitter: @BodyAwareGrief

Wednesday, August 23, 2017

Meet H.A. Robinson, author of The Pebble Jar



By H.A. Robinson

When I sat down to write The Pebble Jar around this time last year, I had no idea of the personal journey the book would take me on. In March of 2016, my little Nana passed away at the age of ninety-one after a long and painful battle with Alzheimer’s. By the time she fell asleep for the last time, we had almost completely lost the essence of who she had once been, leaving us with a shell of the person we loved.

As a child, I remember her being this amazing force of life, so vibrant and always happy. She was the life and soul of every party she went to, and I can still hear the infectious sound of her laughter even though it’s been so long since any of us really heard it.

In a way that none of my other books have, this one tore me apart and sewed me back together as I wrote.

At its heart, it is a love story about two teenagers, Abigail Costa and Elliot Peterson, who have been best friends for as long as they can remember. When the teenage years start to come thick and fast, their dynamic changes and our old friends, the hormones, begin to take over. While Abbi is dealing with the usual teenage angst that everybody goes through, though, she also finds herself struggling to cope with the changes she sees in her beloved grandmother, Nonna. As Alzheimer’s slowly but surely steals away the person she loves most in the world, she is left feeling alone and frightened, unable to truly cope with what’s happening in front of her eyes.

Alzheimer’s isn’t a glamourous Hollywood disease. It isn’t something that receives a great deal of attention in the media, yet it has to be one of the most heartbreaking things to watch a loved one go through. In writing The Pebble Jar, I really wanted to communicate that feeling of isolation you experience while watching somebody you loved being torn away from you. Of knowing that the person you once knew is effectively gone, even though they’re still there in front of you. That gut-wrenching pain of having them look at you as though you’re a stranger when they’ve known you your entire life.

The response I’ve received since releasing the book has absolutely blown me away. I’ve had messages from people I’ve never spoken to before telling me how deeply the book resonated with them. People who have been through similar experiences have contacted me to say thank you. I’ve always believed in the power of literature to support people through hard times and make them feel less alone, but I never in a million years expected my story to be one of them. I’m over the moon that even one person has found the book to be a comfort, and hope it can continue to support those who need to feel like somebody understands and maybe help start conversations about Alzheimer’s.


Social media:


Twitter: @H_ARobinson

Instagram: www.instagram.com/h.a.robinson/

Wednesday, August 16, 2017

Welcome Sisters Susan Kiser Scarff & Ann Kiser Zultner, Authors of Dementia: The Journey Ahead

By Susan Kiser Scarff

Within a year of my husband receiving his dementia diagnosis, I had a classic case of caregiver burnout. I couldn't concentrate at work and most of my time was taken up with worrying about my husband's uncharacteristic and impulsive behavior. I was petrified and intimidated about the future…overwhelmed with basic day-to-day activities. Further, I was apprehensive about making the transition from wife to protector, nurse, and mother.

At the suggestion of a health professional, I began documenting the daily struggles of caregiving. After my husband passed away, I realized my daily journaling could be modified and turned into a valuable and timely resource for other caregivers in similar situations. Writing the book, and in turn helping others in similar situations, helped me to feel that my husband’s illness and my own caregiving struggles were not in vain. Something positive was able to come from the horrific disease called Dementia. Hopefully, the book, written with the help of my sister, Ann Kiser Zultner, will help fill in the huge gap between medical and in-home care for dementia patients.

Our book is intentionally designed as a practical guide for dementia caregivers. It begins with the diagnosis, and then moves into dealing with behavioral issues, managing daily living, safety concerns and late-stage. It also includes an assortment of caregiver tools and an extensive list of caregiver resources carers can use to find additional information on a variety of topics. Finally, the paperback version of the book (as opposed to the Kindle version) includes an Index that readers can use to go straight to any topic. I felt this was important since caregivers do not have time to sit down and read anything from start to finish, let alone spend hours researching. Every section also includes how I resolved many of the daily issues while caring for my husband…honestly, I learned everything by trial and error.

My husband, Red, proved to me that patience is a prerequisite, laughter is the best medicine, and a smile is worth a thousand words.

Purchase Dementia: The Journey Ahead - A Practical Guide for In-Home Caregivers, available on Amazon in Kindle and paperback.

About the Authors


Susan Kiser Scarff

I was born and raised a California girl. I live and thrive in Phoenix, Arizona since 1974. I graduated from Northern Arizona University in 1973 with a BS in secondary education with four and ½ years’ experience as a generational hippy and flower child. I come from a lineage of doctors, psychiatrists, and nurses. Our father and brother were both diagnosed with debilitating disorders shortly after I graduated from high school. I believe the culmination of our/my life experiences and family dynamics prepared me for the imminent role in life as a caregiver, aka, mother of all. I just can’t help it. My collective societal roles range from flipping burgers at the San Diego Zoo, multimedia artist and business owner, coaching junior’s tennis, tennis coordinator, volunteer and staff member at Desert Botanical Garden and last but most challenging …caring for my husband, diagnosed with FTD, for roughly 15 years in our home. It was a very long and difficult labor of love. Candidly, high school lesson plans, country club newsletters, botanical garden training manuals, several magazine articles, and one book sums up my prolific writing expertise. I believe our text is a wonderful starter book for novice dementia caregivers. If you have been a caregiver for a number of years...you can undoubtedly write your own book by now or already have.

Ann Kiser Zultner

I learned about dementia and caregiving through my sister, Susan, and her husband, Red. After Red’s dementia diagnosis, Susan and I would have weekly telephone conversations where she would describe Red’s new behaviors as the disease progressed and her ingenious ways of managing and coping with the resulting chaos and stress. Dementia: The Journey Ahead is designed to be a reference guide for dementia caregivers providing helpful and creative ideas on how to manage daily living. The book also includes some humor since that is the way our family seems to deal with just about everything. (Thanks, Mom.)

Follow Susan Kiser Scarff & Ann Kiser Zultner

Our Facebook page, Dementia: The Journey Ahead Caregiving 101, provides caregivers with much needed advice, support, and guidance, to help prepare and take charge of the challenging and demanding journey ahead.

Wednesday, August 9, 2017

Meet Bryan Wiggins, author of Autumn Imago




By Bryan Wiggins

No one I know has Alzheimer’s disease. My parents have entered their eighties with their sharp minds intact. Only one of my four grandparents suffered any kind of dementia, and Granny’s wasn’t that severe. So when I forget a name, lose my car keys, or question what the heck I’m doing standing in the basement after clomping down the stairs, I shrug my shoulders and carry on. I could still get Alzheimer’s, of course, but with no family history of it behind me, I find other things to worry about.

But when I decided to write a novel with a protagonist whose mother was in the early stages of Alzheimer’s, my lack of firsthand experience with the disease threatened to damage the one thing most critical to building the fictive world that readers love to lose themselves within: character credibility. So I set out to do the research that could show me what my own experience had failed to teach me. I went to a talk by a nationally known Alzheimer’s expert at my local memory care center. I dove deep into the web. I read Still Alice to see how someone far more qualified than me—a neuroscientist with a Harvard Ph.D. and a grandmother who had died from the disease—built a book that rang true for the readers I was most concerned about pleasing: those who either suffered from the disease or loved someone who did.


Somewhere between my worries about getting things right and penning the final lines of Autumn Imago, I created Mara, the 70-year old mother of my story’s hero, park ranger Paul Strand. Mara’s condition compels Paul to bring Mara and the rest of the family he’s abandoned to his remote Maine campground for a tempestuous ten-day reunion. After the book was published, I was honored to receive letters from a few family members of Alzheimer victims who shared how moved they’d been by my tale. That response inspired me to go back to examine how the largely intuitive process that guided my writing had worked to shape the woman who became the moral center of my story. What I discovered was that I’d built Mara less from an examination of her disease than of the impact she and it had on the family that surrounded her.


For Paul, the kitchen fire Mara starts in the home she shares with Paul’s sister, Kim and her family is the warning shot that brings him back to his family again. It signals the limited time he has to heal the breach between himself and his mother before she finally slips away. Every conversation with his mother becomes a struggle over whether to share the feelings he’s buried from their past or the compassion that can comfort her as she faces a frightening future. For Kim, Mara’s caregiver, Mara becomes the test of selfless giving mandated by her calling as a pastor. Kim struggles to live up to that divine ideal while battling the all-too-human emotions of anger and frustration experienced by anyone whose attended to an Alzheimer’s victim’s long term care. Kim’s husband, Robert, exploits Mara’s condition, as he challenges her failing memory when her instincts get her too close to the secrets he keeps from his wife and family.


Kim and Robert’s fiery teenage daughter, Aida, lashes out at everyone except Mara, revealing the compassionate heart that beats beneath an angry and conflicted girl. Aida’s tubby, shy, and brilliant 13-year-old brother, Aaron, may be the one who sees Mara, and her situation, most clearly. He diagnoses both the early stage of his grandmother’s disease and the mental acuity that still illuminates her while others can see only the dark shadows of things to come. Finally, Paul’s younger brother Tommy, a recently-recovered drug addict, provides the true litmus test for Mara’s competency. When Mara’s slight-of-hand provides Tommy with protection from the prosecution of a crime Paul believes Tommy should pay for, Paul later learns that his brother deserved the second chance his mother afforded him.


Mara, of course, is defined less by how these family members see her than how she sees herself. She possesses a wisdom and will that become more apparent as the story unfolds. And though the progression of her disease escalates the rate at which she breaks her connection to both her family and her world, that loss of every person and place that she loves is, in the end, one we all must surrender to. If writing Mara taught me anything, it’s how much I have to learn from those with Alzheimer’s Disease. They and their families are people who cherish the core component of our identity that I take so blithely for granted. My discovery of a character struggling to hold both herself and her family together before both slipped away reminded me that every day—and every memory we make in it—is a gift.


For me, that’s a lesson to remember.




BRYAN WIGGINS is a Maine-based author whose works have been published in The Maine Review, Canoe & Kayak, and Sea Kayaker magazines. For the past nine years he has been the host of the Pine Cone Writers’ Den, a Maine novelists’ collective, and a regular speaker on the New England writing circuit. By day Bryan works as an advertising agency brand strategist and copywriter. For the past thirty-four years, he has made annual pilgrimages to explore the rugged mountain landscape of Baxter State Park that is the setting for his second novel, Autumn Imago. That recently published story of family and natural drama was one of only three books selected to launch Harper Legend, a new HarperCollins imprint of “visionary fiction.” Bryan is currently at work on 48, the second book in his “Imago Trilogy.” This latest novel is a cautionary tale of personal ambition that follows its protagonist’s lifelong pursuit of hiking New Hampshire’s 48 4000 foot+ peaks. You can learn more about Bryan and his work at wigginscreative.com