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, December 7, 2016

Robin Perini, Author of Romance, Mystery, and Thriller Novels and Creator of the 1Memory Challenge



 

By Robin Perini

Looking back, it all started one Christmas morning with a seemingly minor event. Unlike every Christmas in the past, that morning my mom couldn’t remember which presents belonged to whom under the tree without looking at the tags. I didn’t know it then, but it would be the beginning of an over fifteen-year journey that still hasn’t ended.

My mother suffers from Alzheimer’s disease.

I won’t explain how long the illness took to diagnose, how many years it took to know what was wrong, or how much false hope we were given with phrases like Mild Cognitive Impairment. That information is available on the blog I’m writing with my dad, Moments of Clarity.

I will say that it’s a horrible disease. My mother is only seventy-six years old. She and my dad should be enjoying retirement, traveling, playing with the grandkids. But those dreams and expectations were not to be, and over the last decade my family has learned two very important truths:
As your loved one’s brain is destroyed, whatever its manifestations, it’s the disease, not them.
Be thankful and appreciative of what you still have, not resentful for what you have lost—and continue to lose.

Those two tenets have helped us through this difficult journey. In fact, my mom’s journey—our family’s journey—is what inspired my latest book, FORGOTTEN SECRETS. It's not a book about Alzheimer’s. It's a romantic mystery/thriller novel revolving around a kidnapping. However, the only witness is the victim’s grandmother who has Alzheimer’s disease.

My hope for this story is it will entertain while raising awareness and understanding for families battling this disease. In addition, I am donating 10% of the royalties I receive from Forgotten Secrets to the Alzheimer’s Association, an organization that has been a God-send to me and my family in so many ways. Apart from the education and personal support, they were the ones who helped my family realize—finally—that we are not alone. The Alzheimer’s Association’s vision is a world without Alzheimer’s. I pray for that day.

I have never been more nervous for a book to be released. FORGOTTEN SECRETS came out on July 19, 2016 and I didn’t know what to expect. Truth be told, I didn’t really anticipate the response I’ve received. I have been unbelievably moved by the words of my readers. So many have written, thanking me for bringing awareness and for showing a slice of truth about Alzheimer’s. Some have the disease; some are caregivers; some have lost a loved one; some have never known anyone with Alzheimer’s but have thanked me for showing them a small window into the world of this difficult illness. I have been so gratified and encouraged. Sometimes I wonder if this moment in time is why I became a writer in the first place.

While writing FORGOTTEN SECRETS, all I ever wanted was to do my mother justice. I pray I have done so, but once the book was completed, I realized I wanted to do more, something that would impact more people, so I also created the 1Memory Challenge (#1Memory Challenge). The reason: I so wish that I could talk to my mom again, share memories, ask her questions about her life as a child, growing up, as a young woman. I can’t do that, but I can share my memories with loved ones. I can record them so they won’t be lost. And I can encourage others to do the same. Because once those memories fade (whatever the cause), they are gone.

I decided to challenge friends and family to do the following:

1) Record a memory through a video, photo and/or writing a story and post it on social media.

2) Challenge 2-5 others to share a memory and tag them.

3) Give them 24 hours to accomplish the challenge or to donate to the Alzheimer’s Association (or another organization).

The #1MemoryChallenge was a success for me personally because my dad began recording videos for the grandkids, to give them advice and wisdom. For our family, those videos will always be priceless. He will also be recording a few videos for my mom. So they will learn to know the amazing person their grandmother is.

So, to those of you reading this, I may share my heart, my memories, my vision, my soul through my fiction writing…but your memories can do the same. So, I want to challenge each and every one of you to take the #1MemoryChallenge. For yourself and your loved ones. Share your memories. Pass them on. Consider donating to the cause. And hold your loved ones tight.

Hopefully someday, none of us will have to worry about losing or longing for those forgotten secrets.

Links to more information and some memories shared:







About Robin Perini

International and Publisher’s Weekly bestselling and award-winning author Robin Perini is devoted to giving her readers fast-paced, high-stakes adventures with a love story sure to melt their hearts. A RITA Award finalist, she sold fourteen titles to publishers in less than two years after winning the prestigious Romance Writers of America Golden Heart Award in 2011. An analyst for an advanced technology corporation, she is also a nationally acclaimed writing instructor and enjoys small-bore rifle silhouette shooting. As a result of her mother’s battle with Alzheimer’s Disease, Robin has become an advocate. She is donating 10% of her royalties received from her novel, FORGOTTEN SECRETS, to the Alzheimer’s Association. In addition, she started the 1 Memory Challenge, a challenge to encourage others to share memories and donate to the Alzheimer’s Association, whose vision is a world without Alzheimer’s. You can learn more and connect with her by visiting her website at www.robinperini.com.

Wednesday, November 30, 2016

Meet Jana Panarites, author of "Scattered: My Year As An Accidental Caregiver"

By Jana Panarites

On a Monday night in November 2009, I had what turned out to be the last conversation I would ever have with my father. He and my mother had just come back from a trip to New York and they were now back in our family home in Maryland. Out in Los Angeles, I paced the floor as I spoke with them. My career was at a standstill. I was scrambling to make ends meet. I didn’t think life could get any worse, but it did the next morning when I learned my father was dead. Hours after we’d gotten off the phone, his heart had stopping beating.

Devastated, I flew east for the funeral and arrived at my parents’ house to find my once vibrant eighty-year-old mother standing hollow-eyed in the hallway. My parents had been married for fifty-six years. I knew that in good marriages like theirs, it wasn’t unusual for one spouse to die soon after the other because the surviving spouse loses the will to live. Having just lost my father, I couldn’t bear the thought of losing my mother too. So after spending my entire adult life in New York and LA, I moved back to the Maryland suburbs, into my childhood home—determined to save my career and my one remaining parent.

Like most caregivers, I had no idea what I was getting myself into. In between taking my mother to medical appointments and trying to make sense of her increasingly absent-minded behavior, I tried to earn a living. It took me a while to realize I already had a full-time job: caring for Mom. We wound up living together for a little more than three years, and in the third year my mother was diagnosed with the early stages of Alzheimer’s disease.

I wrote Scattered to contribute to a much-needed conversation about the impact of Alzheimer’s on family members. Before my mother was diagnosed, no one I knew talked about Alzheimer’s and I knew little about the disease. In the midst of grief and career transition, I felt confused, isolated and anxious—not just about my future, but about my mother’s. Scattered was my way of coming to terms with her illness and assuring readers with family members who have dementia that they are not alone.

Readers have praised Scattered for its candidness, accessibility and humor. A reviewer on Amazon wrote, “Reading it gave me tears but also laughter as I read her definition of "hanging in [t]here." I have recently used that phrase when asked about my husband's condition and the author's definition is perfect. Thank you Jana!”

Knowing I’ve helped even one reader feel less alone in their Alzheimer’s journey has given me great joy. Writing Scattered wasn’t easy, but I’m at peace with what I wrote mostly because of my mother’s response when I told her she might not like some of the things I’d written about her. She said, “It’s the truth, isn’t it?” Priceless. And vintage Mom.

About the author: Jana Panarites was born in Washington, DC to Greek-American parents. Her professional experience runs the gamut, from working in network television production and writing screenplays to managing the needs of high net-worth clients as a criminal litigation paralegal. In December 2014 she founded Agewyz Media Group, LLC to raise awareness about the plight of caregivers and promote healthy aging across the generations. Through her book, Scattered: My Year As An Accidental Caregiver and her weekly radio show, The Agewyz Podcast, she aims to provide people with tools and resources to make every moment in life count, at every age and even under the most difficult of circumstances. Jana is a graduate of the University of Vermont, where she earned a Bachelor of Arts degree in Communications; and the University of Southern California, where she earned a Master’s in Public Diplomacy, a joint degree from the Annenberg School of Communications & Journalism, and the School of International Relations.


Jana on Twitter: https://twitter.com/JanaPanarites

Agewyz Facebook page: https://www.facebook.com/agewyz/

LinkedIn profile: https://www.linkedin.com/in/janapanarites

Scattered on the Agewyz website: http://agewyz.com/scattered/

Scattered on Amazon: http://amzn.to/2dcXCFs



Wednesday, November 23, 2016

Meet Angela G. Gentile M.S.W., R.S.W. , author of Caring for a Husband with Dementia

cfh-cover


by Angela G. Gentile, M.S.W., R.S.W.

When I titled my book “Caring for a Husband with Dementia: The Ultimate Survival Guide” (2015) I did not expect to have people mistakenly assume that I am a wife caring for a husband with dementia. The warmth and sympathy I receive from people who don’t know me personally has been incredible. I gently explain that I am not a wife caregiver and that the book is inspired by the experience I had in counseling eight amazing caregiving women.

When I was deciding on a topic for my master’s degree final project, I decided to focus on older women. I explored what issues are affecting them, and the subject of caregiving came up quite often. I did some research on the subject and discovered that there was very little written about women who care for husbands with Alzheimer’s or a related dementia. My career as a geriatric clinician and social worker exposes me to many different mental health issues, and dementia is unfortunately a common one. I quickly became an expert in assessing and screening for dementia, and recognizing the symptoms of caregiver stress and burnout.

The short-term, individual counseling program I designed, implemented and evaluated with eight caregiving wives was very rewarding and successful. It inspired me to want to help others like the women I had learned so much from. What started out as a small booklet turned into a 16-chapter book. “Caring for a Husband with Dementia” was written specifically to help women who care for husbands who have been diagnosed with a dementing illness such as vascular dementia or Alzheimer’s disease. I dedicated this book to caregiving wives, everywhere.

Writing this book came surprisingly easy to me. I called it a “Divine Intervention.” I received help from colleagues and other experts in the field who generously donated their time reviewing, editing and offering feedback. It is a unique, informative and therapeutic self-help type of book. The book offers opportunity to make it personal for the reader. There is space for self-reflection on important questions. Don’t know what to “Google” to find your local resources? I’ll help with that, too. There is a listing of helpful and important resources, plus more.

All of the reviews and feedback I have received thus far has been very positive. Some of the more helpful feedback has been that this book is written not only for wives, but for all caregivers. I have been told this book is like a bible and it is kept at the bedside and is read every night. It’s a reference guide, a companion, and a source of education and support. It’s like a year’s worth of therapy all in one book.

I know this book has helped spouses and other caregivers. They have told me, “Everything I was thinking, feeling and wondering about was written in this book.” I am honoured to be able to help those who are struggling with the issues of diagnosis, getting help, difficult behaviours, grief and loss, legal issues and more. I have been at book signing events where even men say they want their wives to buy this book as they want them to be prepared – “…just in case.”

My hope is that this book reaches those who are in need of education, support and tips on how to survive the difficult task of caring for a loved one with dementia. It is also a great gift for someone in need. 


About the Author


Angela G. Gentile, M.S.W., R.S.W. is a clinician, older adult specialist and author who has more than 25 years of experience working with older adults and their families in a variety of capacities. She is currently employed as a Geriatric Mental Health Clinician and enjoys writing, traveling, photography and exploring what it means to age well. She is a realistic optimist who lives in Winnipeg, Manitoba with her husband and two children. For more information, please go to: www.AngelaGGentile.com.

Wednesday, November 16, 2016

Meet Laurie C. Lewis author of The Dragons of Alsace Farm


By Laurie C. Lewis

Like our family, my proposed WWII mystery, The Dragons of Alsace Farm, was also changed by our mother’s diagnosis of dementia.

After my father’s passing, Mom threw herself into her farm and animals, finding purpose in the care of her “babies” and the maintenance of her land. Progress on the book slowed when our previously happy, healthy mother began exhibiting signs of what we assumed was depression, needing more of our time and care. Her mood swings were erratic and her reality seemed very skewed. She was often sick, and we suspected that her hygiene and cooking skills were slipping, causing recurring stomach distress.

Over and over, we took her to her internist, pulling the physician aside to express our concerns that something was amiss. Each time, Mom charmed her, redirecting all questions about her health and routine to another topic with the skill of a railroad switch operator. We were always assured that she was great, and dismissed without getting any solid help. But the changes increased, and a neurologist finally concluded that Mom had dementia. Fear became her new reality. Fear, frustration, and guilt became ours.

After interviews with caregivers, loved ones, and health care providers, we realized we weren’t alone. Although most people are impacted by dementia in some way, I was aware of only a few books tackling the topic. I decided to ramp up the tension in my book by placing my WWII survivor, Agnes, on the dementia spectrum, allowing me to offer readers a glimpse into the impact of the disease on individuals and entire families.

Soon after Mom’s diagnosis, we found a young couple with mild disabilities who wanted more independence. They moved into Mom’s home for a time, offering farm help and companionship in exchange for rent. Mom believed she was helping them, and they felt they were helping her. As a result, the three of them rose above their limitations to lift and serve one another.

Inspired by these observations, I spoke with counselors at the local Department of Aging to see if we could pair people who have a home but need help, with people who could help but need a home.

Legal barriers killed the idea, but I decided to introduce this dynamic into the book. I turned to two friends/family therapists to help me accurately create Noah and Tayte—characters with alternative challenges who would similarly impact Agnes. My mystery had now morphed into a family drama about internal dragons—the fears and secrets we all battle.

It’s been very gratifying to see how people are reacting to the book. Many say it hits close to home. Readers love the characters, especially Agnes, who reminds them of some loved one who has been similarly affected by dementia. They also mention the hopeful, redemptive message in “The Dragons of Alsace Farm.”

On a personal note, writing “Dragons” was cathartic and healing. Writing Agnes’s scenes helped me step away from my concerns and see things from Mom’s perspective. Like Tayte, I finally stopped trying to “restore” her, and learned to appreciate her for whom, and where, she is. Like Noah, I recognize that she still remembers what matter—love.

About the Author
Laurie L.C. Lewis also writes as Addison Tayte. She is the author of The Dragons of Alsace Farm, and other novels, including the Free Men and Dreamers historical fiction series.

Connect with Laurie (L.C.) Lewis

Saturday, November 12, 2016

Meet Judith Henry, author of The Dutiful Daughter's Guide to Caregiving: A Practical Memoir




What was your motivation to write about your experience as a caregiver? I believe some of our most profound lessons come, not from books, but from being there for people in ways we never imagined. During the six years I was a caregiver for my mother and father, not a day went by that I didn’t discover something new about myself, my parents, my siblings, human nature in general, and how to deal with a broken medical system when it comes to our elders. Realizing that, it became very important to share what I learned to prepare other daughters and sons in similar situations.

Was it personal? Professional? Writing The Dutiful Daughter’s Guide to Caregiving was as much a personal journey as the actual experience of caring for my parents. What I didn’t anticipate was how it would become such a catalyst for me, professionally. I now do talks and workshops on caregiving issues; facilitate a writer’s group specifically for caregivers that I want to begin offering online; and I’m also working on another book about the healing power of expressive writing.

Have you gotten feedback? The feedback has been food for the soul. People have shared ways they’ve used the book to start important conversations with their parents about getting legal documents in order, especially end-of-life wishes; one reader is a social worker who sent copies to each of her adult children to make their lives, and hers, easier when she needed care; another admitted she bought it to be polite, then found herself relying on the chapter guides a month later when her mother became ill.

Do you feel your book helps other caregivers? The comments received continue to make me believe that I’m on the right path with this book. Even though our circumstances and stories may be different, there are still common threads that connect us to each other in the caregiving community.

We often feel isolated. We judge ourselves against a standard of perfection that is unattainable, since we’re often dealing with impossible situations that would make anyone snap with frustration and exhaustion. So, it’s important that readers feel like they’re sitting down with a supportive, albeit mouthy best friend who understands the roller coaster of emotions that accompany this job, and reminds them that they’re simply human.

And since we have to figure out a way to make friends with both the light and the dark side of this experience, humor is often my delivery system, even when introducing tough subjects.

Ultimately, the true gift from writing a book to help others, is realizing it has helped me, most of all. I was finally able to grieve the loss of my mother and father, and at the same time, hold them close through the stories I shared. It helped me forgive myself for not being the perfect daughter or caregiver. It also gave me a much deeper appreciation for my parents – their strength, their stubbornness, and their courage.

Social media:






Bio:

When Judith set out to write a book about caring for her elderly parents, there were only a few things she knew for sure. It had to be small enough to read anywhere - an airport, an ER Waiting Room at 2 AM or on a lunch break at the office. The story would be open and honest because she's not a rainbow or pink unicorn kind of gal, and above all, it needed to be useful.

The end result is The Dutiful Daughter’s Guide to Caregiving, a combination of how-to, humor and hardship. As one reader describes it, "Helpful to the core; worthy of your time; and funny, to boot."

In addition to article writing, Judith offers consultations, talks, and workshops on caring for older adults, preparing ahead for caregiving, dealing with grief and loss, the benefits of expressive writing, and how to create a legacy letter for family and friends. She is also the creator of a well-loved writer’s group for caregivers in the Tampa area.

Wednesday, November 9, 2016

Meet Constance Vincent, PhD, author of Not Going Gently


When my parents first began to have memory problems, I was in denial. As a psychologist teaching university classes on aging, I had always emphasized the positive aspects of growing older. Alzheimer’s disease had never been on my radar. It is now.

Mom and Dad were relatively young and quite healthy in 1978 when they moved from their small town in Pennsylvania to live near my three siblings and me in southern California.  For the next ten years, my husband Ed and I socialized with my parents frequently––even taking vacations together.  Then Ed and I moved to the San Francisco Bay area, and with more time between visits, I began to notice gradual differences in my dad.  He called it “slowing down.” He was almost eighty when he made the decision for him and Mom to follow my only brother and move near Las Vegas.  It seemed logical enough; my brother was not only the youngest in our family and a medical doctor, he was divorced and had no children.  My father gave him power of attorney and basically turned himself and my mother over to my brother’s care.

When my father died at the age of 87, my mother was 85 and showing signs of mild cognitive impairment (MCI). A year later, my brother and one sister moved Mom into a senior residence without a family discussion.  My mother was distraught; she had never lived apart from her family before.

I became a long-distance caregiver with no authority, influence, or even information (no HIPPA reports). For the next two years I visited Mom in Nevada as often as possible, brought her to Puerto Vallarta with us twice and to our home in CA three times.

But then the first of three dramatic changes occurred.  My brother found Mom delirious and dehydrated after she was left alone for an unknown time.  She was quickly diagnosed with Alzheimer’s and transferred to a memory care unit.  Now there would be no more trips for her.  I called her often to give her comfort and stimulation; her conversations included the hope of escaping and the fear of losing her identity. Her feelings were so poignant that I wrote down her words after each call. 

The next two dramatic changes involved her losing her sight for several months and then, two years later, breaking her hip. She passed away at the age of 96, after living in institutions for ten years.

Sometime between Mom’s eye and hip incidents, I began to write her story, including the feelings she had shared.  I was learning so much about AD through my research, but I was powerless to change her circumstances of loneliness, depression, lack of nutrients, and losses (even of vision).   As much as I wanted to help her avoid the risks of AD, I soon realized I was too late. 

Yet I’m not too late to fight for myself––and the millions like me who are also at risk for AD, by age and genetics and even by sex.  Hence the title of what became my book:  Not Going Gently:  A Psychologist Fights Back against Alzheimer's for Her Mother. . .and Perhaps Herself. 

In talks with groups, radio interviews, and blogs I emphasize three key areas in fighting Alzheimer’s disease:  First prevention––the individual’s role; Second––planning, for the family; Third, protection––the role of society for research, education, and better care.  My YouTube video elaborates the first need: New Directions in Preventing AD. https://www.youtube.com/watch?v=TYLijPyemQE.
           
Most readers feel the story “needs to be told—so many others will identify with this.”  One said, “You’ve given me a lot of information—regarding nutrition, etc.—that I’ve already started trying to put into practice with my own family. And your encouragement to have conversations with family and to be prepared for the worst has prompted me to start broaching these subjects with my parents as well.”


I have been fortunate to receive almost all five star reviews such as this:
“. . .a touching and harrowing narrative combined with the latest scientific/medical facts about the disease. Most practical books are slow reads. Yours is so personal and compelling. Most of us, in our lives, will need a book like this to help us through the tough times when a friend or family member may be diagnosed with dementia or Alzheimer's.”


One reader said: “As a primary caregiver for a family member in the first stages of this disease, I found this book extremely helpful and enlightening and would highly recommend it to all baby boomers who are or might possibly be caring for aging loved ones.” 



Link to book: Not Going Gently

   

Tuesday, November 1, 2016

Meet Sandra Bulllock Smith, author of Trading Places: Becoming My Mother's Mother


When I first started caring for my mother, I had no apprehension over how difficult the caregiving job would be. I am a strong, capable woman and my mother was gracious, sweet and appreciative. She tended to know the limitations age delivered to her. I tended to know everything. I had siblings who could help me care for her. What could go wrong? The short answer is “a lot.”

One day as I sat in a hospital with my mother, I realized that in so many ways we had traded places. I was now the mother. I was not prepared for that role reversal. I was not prepared for the emotional challenges of my mother’s declining health and mental abilities. I was not prepared for the myriad situations for which there was no “right” answer. I sought out reading material that would help me feel like I was doing the right thing, making the best decisions. I wanted to read about other’s experiences while caring for a parent. Sadly, there was little I could find on the topic.

While caring for Mom, I found I was using phrases with her that she used with us as children. Phrases such as, “don’t give your food to the dog” and “you’ve had enough sugar today.” I kept a journal of these phrases and other experiences of caregiving. At some point I looked at my notes and thought if I could turn my experiences into a book, it might be helpful to others who were caring for a family member. That was the genesis of my book, Trading Places: Becoming My Mother’s Mother.

This book is a very personal collection of stories for me. Trading Places documents the living, breathing caregiving for my beloved mother. Some of the stories might have been embarrassing to her, so I decided not to publish it until she passed away. Even then, the thought of publishing these personal stories still terrified me. But I did it. A friend told me that I had “dared greatly” by publishing the stories. He said, “What you’ve done is remarkable.” When I started to get feedback from my readers, I knew I had done the right thing. One reader wrote, “For any potential caregiver who has staved off acceptance of the probability of filling these shoes, Trading Places is where to begin. This beautifully narrated account is the light that expunges the monster from under the bed. It is a deep breath of acknowledgment and determination.”

Another reader emailed me and explained that she felt such guilt about whether she had done the right things for her parent until she read my book. She was able to see that my experiences and hers were very similar. To know this book helped even one person to deal with the powerful emotions of caregiving makes me very grateful.

My goal in writing this book was to deliver a very heartfelt, uplifting message about family caregiving. I think I succeeded based on the sincere, touching reviews the book has received. But it is much more than a book about caring for an aging parent. It’s a book about a life well-lived. It’s a book about treating others with dignity and respect. It’s a book about love.
About the Author:

Sandra Bullock Smith is a retired human resources executive, world traveler, angler, adventure junkie and storyteller. She grew up in northwest Florida and spent 20+ years in the colorful gumbo of south Louisiana. Her current home base is Santa Fe, New Mexico, where she lives with her husband, Mike and their mongrel pups. Mike is an endurance runner so you can often find her out in the woods supporting ultra runners at 100 mile trail runs.

One of her greatest challenges in life was the ten-year period during which she and her siblings cared for their aging mother. This experience led her to pen her first book, Trading Places: Becoming My Mother's Mother. She hopes it offers insight and encouragement to anyone involved in a similar labor of love.


website: Blog

Find her book on: Amazon