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, October 18, 2017

Meet Marita Golden, author of "The Wide Circumference of Love"


Silent Storm: What We Remember, What We Forget, What We Discover

A Novelist Meditates on Writing about Alzheimer’s

By Marita Golden

I didn’t choose. I was called. That’s how inspiration, art, and creativity work sometimes. I am often asked why I wrote a novel about Alzheimer’s disease.

I am not caring for anyone afflicted with it and no one in my family, from what I know, has ever been diagnosed with dementia or Alzheimer’s. So there was nothing in my life, my past or my then-present to explain the fictional expedition I launched. This is what happened: I was trapped inside the wrong story. I had written 100 pages of a novel that was going nowhere very fast. So I stopped, took a breath and gave the process over quite literally to a higher power. I was willing to “let it be.” Two weeks later I was writing the story of a wife who finds herself and the nature and meaning of love transformed as she cares for her husband who has been diagnosed with early Alzheimer’s disease. Sometimes as a writer you get called, summoned to dive in, to plunge into the terrifying beauty of a completely unknown narrative landscape. When you report for duty, that is when you know you are writer.

Four years later, after hearing the stories of those with Alzheimer’s, their caretakers, the professionals who care for them, the families who are burdened and sometimes buoyed by the demands of the disease, the researchers trying to find a cure, the was novel finished. I realized that I had started out as a novelist and ended up as not only a novelist, but an activist/advocate for greater awareness about the epidemic of Alzheimer’s in Black America.

I met adult children who found themselves stunned and incompetent in the face of a parent’s diminished capacity, and others who unflinchingly faced the disease and embraced their parent with the kind of transcendent love and loyalty of which they never knew themselves capable. I gave a 20-minute talk and reading about my life as writer before a group of residents of a memory care unit. They taught me to be here now, the value of the present moment and that they are indeed present, sensitive, intuitive. They remember the most important things--the meaning of human touch, an honest look in someone’s eyes, that a whole story can be told in a fleeting fragment of an iridescent memory of joy, and that words are often overrated.

But it was the statistics that turned me into an activist/advocate, that convinced me that maybe I was the right vessel to capture, contain and pour this story into the hearts and minds of readers. Statistics reveal a “silent storm” raging in the Black community. If Alzheimer’s is a crisis for America, it is an epidemic for Black America. African Americans are twice as likely as whites to develop the disease, are only three percent of those enrolled in trial to find a cure, and could be 40% of all those with Alzheimer’s by 2050.

Sometimes a story asks to be written and then asks to be used as a platform. My novel, The Wide Circumference of Love, about the Tate family, Gregory, Diane, Lauren and Sean is a story for everyone who has been alive long enough to hurt and heal, to feel coursing through their blood the strange strength borne of all we are sure we cannot bear.

All art is political, and social, and at its best engages in a frenzied dance with everything being thought and lived and denied and discovered swirling around it.

A story is never “just a story”. A book is never “just a book.” A story, a book, can set the world on fire or give a writer, or a reader, something to believe in or fight for.

About the Author:

Co-founder and President Emeritus of the Zora Neale Hurston/ Richard Wright Foundation, Marita Golden is a veteran teacher of writing and an acclaimed award-winning author of over a dozen works of fiction and nonfiction. As a teacher of writing she has served as a member of the faculties of the MFA Graduate Creative Writing Programs at George Mason University and Virginia Commonwealth University and in the MA Creative Writing Program at John Hopkins University. She has taught writing workshops nationally and internationally to a variety of constituencies.

Her new novel is The Wide Circumference of Love. Her other books include the novels, After and The Edge of Heaven and the memoirs Migrations of the Heart, Saving Our Sons and Don’t Play in the Sun: One Woman’s Journey Through the Color Complex. She is the recipient of many awards, including the Writers for Writers Award presented by Barnes & Noble and Poets and Writers and the Fiction Award for her novel After awarded by the Black Caucus of the American Library Association.

Her cover story for the Washington Post Sunday Magazine on African Americans and Alzheimer’s diease can be found here:

African Americans are more likely than whites to develop Alzheimer’s. Why?

Connect with Marita:

www.facebook.com/marita.golden

www.maritagolden.com

Amazon

Wednesday, October 11, 2017

Meet Philip D. Sloane, MD, author of "Alzheimer’s Medical Advisor: A Caregiver’s Guide"


By Philip D. Sloane, MD

I was six years into my medical training – a second year resident in family medicine – when I saw the first patient who I now know had Alzheimer’s disease. A middle-aged man brought her in, explaining that she was his mother and that the family was at wits end. His mother didn’t seem sick, he explained, but she couldn’t remember “anything,” made poor decisions, and would wander off and get lost if left alone. In the examining room, she wouldn’t sit down. From my limited history and examination, it was clear that she had a problem involving memory, judgment, and communication. This was not a little forgetfulness, it was a progressive problem that the family was struggling to understand and cope with. I asked my faculty preceptor what to do, and he had no idea. I still remember how helpless I felt, because something was so wrong and yet I had nothing to offer. It was 1977.

In the forty years since then, so much has changed and yet so little. Back then we called it senility and knew almost nothing about it; today we can talk at great length about the different cognitive disorders, of which Alzheimer’s disease is the most prominent, and about amyloid precursor protein, tau microfilaments, PET image studies, and so on. Back then it seemed rare; today it’s a leading cause of death and disability – widespread and widely recognized. But the impact on families hasn’t changed at all.

Since then, much of my career and life has focused on aging, Alzheimer’s disease and other dementias. I obtained certification in geriatric medicine; worked in nursing homes, assisted living and home care settings; authored 18 books, including a textbook of geriatric medicine; and conducted numerous research studies on Alzheimer’s care. My mother, who died at 98, and my father-in-law, who died at 87, both had cognitive disorders and died after a long period of illness. I developed training programs for doctors, nurses, nursing assistants, and other professional caregivers on diagnosis and management of persons with dementia. All of this was part of a general awakening among health professionals of the challenges family caregivers face providing day-to-day care of a loved one.

The Alzheimer’s Medical Advisor: A Caregiver’s Guide was written to help share with family caregivers the practical knowledge that has accumulated during the past 40 years. A major focus of the book is helping family caregivers know what to do when confronted with new or worsening symptoms – from medical problems like abdominal pain, cough, and diarrhea; to behavioral symptoms such as hitting, hollering, or refusing care; to more vague issues like not eating well. It also contains sections on working with the health care system, medications, watching for conditions such as pain and dehydration, and self-care advice for caregivers. An advisory group of nine family caregivers helped shape the book. Dozens of health professionals and students contributed background research, thanks in part to financial support from the National Institutes of Health. To make the book attractive and easy to read, we partnered with a nationally-prominent graphics designer. To field test an early version of the book, 50 family caregivers used it for six months and told us what they liked and what needed to be changed. Our final book was published in July of this year (2017) by Sunrise River Press. Feedback has been gratifyingly positive.

About the Author

Dr. Philip Sloane is the Elizabeth and Oscar Goodwin Distinguished Professor of Family Medicine at the University of North Carolina at Chapel Hill. Jointly certified in family medicine and geriatric medicine, he has served as medical director of a skilled nursing facility, medical director of an Alzheimer's Unit, national advisor on Alzheimer's care for a major nursing home chain, director of a nursing home teaching service, and physician and quality consultant to a Program of All-Inclusive Care for the Elderly. As a researcher, he’s conducted over 20 studies in nursing homes and assisted living, including the research that developed two award-winning training programs, Bathing without a Battle and Mouth Care Without a Battle. He was the recipient of the prestigious Pioneer Award from the national Alzheimer’s Association.

The Alzheimer’s Medical Advisor (Sunrise River Press, 2017) is available from major retailers like Barnes & Noble and Amazon, and from the Sunrise River Press website.

Amazon

Sunrise River Press

Wednesday, October 4, 2017

Meet Niki Kapsambelis author of The Inheritance


By Niki Kapsambelis

On a drizzly April day in 2009, I walked into a hotel suite in downtown Pittsburgh to meet members of a North Dakota family stricken with a rare genetic mutation that guarantees early-onset Alzheimer’s disease.

My life changed profoundly that day. Up to that point, I knew precious little about Alzheimer’s. I was a journalist on assignment for the University of Pittsburgh, whose Alzheimer’s Disease Research Center had been studying the DeMoe family for a few years. I was stunned by the magnitude and extent of their courage. Here was a family straight out of middle America, committing itself across generations to serving as research subjects for the most baffling disease of this generation. What science had not been able to solve in more than a century, the DeMoes vowed to defeat – or die trying.

Just as Alzheimer’s has been a formidable enemy hiding in plain sight, here now were its heroes, living next door in relative obscurity. Nobody knew what they were doing, save a few close friends. I wanted to change that.

My book, The Inheritance, took five years to research. Not only did I track multiple branches of the family across different states, I also had to retrace the history of the disease from Alois Alzheimer’s discovery in 1906 to the human clinical trials of today. In the process, I met several brilliant people I now consider friends, and was awed by the depth of their commitment.

I also gained a family. The DeMoes were more than any journalist could ever hope for: honest, charming, forthright, and welcoming. Their trust in me was at times overwhelming, and I felt an acute sense of responsibility to be worthy of that trust and to tell their story as faithfully and completely as I could. Not all of the people who started this journey with me lived to see its conclusion, but I felt their presence keenly as I wrote. I was there for births, deaths, weddings, graduations, divorces, goodbyes and new beginnings. I celebrated with one young woman as she learned she did not carry the mutation, and I delivered the eulogies at two funerals for those who did.

As each surviving family member held the book in their hands, I sensed that my task was complete, but my journey was only beginning. Through the sacrifices of this family, I hope to educate the world about the public health crisis we all now face, and inspire them to come together to finish what the DeMoes – and others – have started.

Niki Kapsambelis may be reached at www.nikikaps.com, via Twitter at @nikikaps, or on Facebook.

Author’s bio:

Niki Kapsambelis’ work has appeared in publications around the world, including the Washington Post, Los Angeles Times, People, and the Associated Press. A native of Boston, she now lives in Pennsylvania. The Inheritance is her first book.

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.

facebook.com/candyabbott

Twitter @CandyAbbott

LinkedIn candy-abbott

Pinterest CandyAbbott

www.fruitbearer.com

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


Wednesday, August 2, 2017

"Meet Me Where I am - An Alzheimer's Care Guide" by Mary Ann Drummond


By: Mary Ann Drummond, RN

When I was a young girl I dreamed I would grow up and become a nurse. I seldom left home without my nurse’s kit filled with band-aides, cotton balls, and gum drop pills just in case my services were needed. It seemed so simple in those days to comfort and to heal, or at least that is what my Grandmother led me to believe each time she let me practice my skills on her.

If only caregiving were that easy! The reality is there are wounds a band aid cannot heal, diseases medication cannot cure, and hearts so burdened by the weight of caregiving, comfort cannot be found.

I was motivated to write Meet Me Where I Am – An Alzheimer’s Care Guide to share what I have learned from the greatest teachers of all…those whom I have had the pleasure of knowing and caring for along life’s journey who have dementias such as Alzheimer’s.

Serving many years as an executive in the assisted living industry, my passion for dementia care grew stronger as I continued to see how the application of key concepts created beautiful success stories for the residents, the care givers and their loved ones!

I began to teach my care concepts in support groups, public health seminars and caregiver symposiums. I would often hear from attendees afterward how helpful the information had been and would be asked if I had ever considered writing a book? With this prompting, the seeds to write the book were planted.

Meet Me Where I Am – An Alzheimer’s Care Guide was published in 2014. Writing this book has been a life changing experience. Caring for someone with Alzheimer’s disease requires an abundance of knowledge, patience and love. My goal was to give caregivers a tool that would teach, enlighten, and comfort while preparing them for the journey ahead. I was humbled to hear from the many readers how beneficial they found the book to be. When you have someone bring your book to you with the pages coffee stained, dog eared, passages highlighted, and they tell you it was given to them by a friend of a friend, and the same person is wiping tears from their eyes as they thank you for writing the book that has helped them so much, you say a prayer of thanks for being able to be there when you were needed.

Dr. Lisa Verges of MemoryCare Asheville, North Carolina refers to the book as providing “…useful strategies for navigating this journey with grace. It is an excellent and meaningful book and I highly recommend it.” Dr. Kathleen Hayden of Bryan Alzheimer’s Disease Research Center, Duke University, states “This book will help caregivers and family members understand dementia from the patients’ perspective. Meet Me Where I Am is a must-read for caregivers of all kinds.”

About the Author


Mary Ann Drummond, RN, is the author of Meet Me Where I Am – An Alzheimer’s Care Guide and I Choose to Remember. As the CEO of Angel Tree Consulting, Drummond has a passion for presenting innovative and successful strategies in both caregiver and provider settings to assist individuals with dementia “live their best” each day. With over thirty years of nursing experience and sixteen years as a VP in the assisted living industry developing programs for dementia care, she credits much of her expert knowledge to the greatest teachers of all, those who live daily with Alzheimer’s disease and related dementias. Meet Me Where I Am has entered a third print and has won three IPPY awards including: 2015 Silver Medalist Living Now Book Award for Caregiving, 2016 1st Place Gold Medalist Beverly Hills Book Award for Caregiving, and 2015 CIPA EVVYY 1st Place Book Award for Health and Diet. Ms. Drummond enjoys working with organizations across the country to increase successful outcomes in dementia care.


Twitter@RN4ALZ



Wednesday, July 26, 2017

Meet Suzka Collins, author of Wonders in Dementialand



By Suzka Collins

Ah… the wonders I found living with my mother in Dementialand. It all started almost minutes after she was diagnosed with progressive dementia. The cause was meningitis encephalitis. There seemed to be no choice at the time. I had to leave my bohemian life in the art world in California to return to a Chicago suburb where my mom was living. I am a painter. This had all the markings of a disaster.

After four years living in Dementialand, I returned to California and remember my friends telling me how sorry they were, how horrible it must have been and what a great sacrifice I made taking care of her. I hadn’t a clue what they were talking about. For me, I was on a crazy cruise of chaos and enchantment. I had to write a book. Dementia was getting a bad rap.

Wonders in Dementialand is a quirky, meta-fictional memoir. The book is composed of 350 pages with oddly connected sections that range from flashback memories of something that might have actually happened, to pure fantasy.

The architecture of the book is noticeably whimsical. Parts are pure imaginary. I metaphorically humanized ‘dementia’ mirroring a male character named Skeeter - an uncommon approach. Violet (my mother and main character) meets Skeeter in a port-of-crossing terminal. As Violet attempts to cross the border, she trips and falls in the arms of this handsome suitor. The suitor takes her away to exotic and alluring places that Violet keeps secret. Like a schoolgirl, Violet is smitten and scared. But Skeeter (similar to dementia) is persistent in pursuing Violet. Other parts have dreamlike processions and hallucinatory imagery depicting the facade of life with a fragmented potpourri of characters. Large balloons with cartoon faces of the Cookie monster, Dora, Betty Boop and Miss Kitty parade themselves about everywhere making all the craziness palpable and even mysterious at times. It’s funny and sad and touching at the same time. Yet through this book there shines the light of an authentic truism. Nothing is trivialized. The delusions, the paranoia and the discombobulated conversations are still there.

Wonders in Dementialand breaks through the stigma of dementia, which is now being called the defining medical concern of this generation. Today more than 47.5 million are living with dementia worldwide. Multiply that number by the family members and caregivers affected by dementia directly, day in and day out, and you have a universe of people living in dementialand. It’s a subject that matters.

Amazon > Wonders In Dementialand > Comments 

5.0 out of 5 stars

What wonders you’ll find… By H

I love this book because of its attitude - vibrant, free-spirited, and positive.
A book like this is precious. Reading it gives me the energy I need to tackle the world and notice the colors of what otherwise might be a debilitating tragedy. Dementia can destroy the lives of everyone involved, but in this book, Suzka gives the gift of a new perspective-- accepting, open, and daring enough to have fun.

5.0 out of 5 stars

I loved reading this book By Christi

Suzka explored dementia as only an artist could. As I read her book, I felt that I could actually see what she was seeing and feel the withdrawal from the everyday understanding of the "real" world that was being replaced with an other-worldly view that leaves all the baggage and preconceived notions behind. It is a unique view of dementia from a caring, loving daughter who accompanied her mother as she made this journey. I loved reading this book.


Suzka, painter-author



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Twitter: @Dementialand

Instagram: Dementialand

Dementialand™

Wednesday, July 19, 2017

Meet Emily Page, author of "Fractured Memories"



By Emily Page
Writing about dementia came about fairly slowly and organically. I'm an artist, so when my dad was diagnosed with frontotemporal dementia at the age of 65, my natural inclination was to start doing paintings about our journey as a sort of self-prescribed art therapy. I used an elephant as both a symbol for and a talisman against dementia, because "an elephant never forgets." As I created paintings, I posted them on social media with an explanation of their meaning, and people really responded to them. At the insistence of a friend, I started a blog to help promote my artwork, and it became a kind of online journal. Before long, I was getting tons of great feedback from my readers when I posted about what we were experiencing as we coped with caregiving. "Me, too!" was a phrase I started hearing a lot.
After my dad passed away in early 2016, my readers kept calling for me to turn the writing and artwork into a book, which was a fairly terrifying thought. I don't consider myself a writer, so the thought of sitting down and writing a book was daunting, but I knew that what I'd been writing about on my blog had spoken to people, and I hoped that the book would do the same thing.
When my dad was diagnosed, he was really open about his diagnosis, and so I decided that honesty was paramount if my book was going to do him justice. In our home, honesty meant not just talking about the really hard stuff, but laughing at the ridiculous stuff, too. There's plenty of both. My motto was, "We laugh when we can, we cry when we must." So I talked about the silly things he did as a result of the disease, and I talked about the raw, painful stuff that we were going through in our efforts to give him the best care possible. There are moments when I don't make myself look so great, but I thought it was important for other caregivers to be able to see themselves in the writing and know that it's okay and forgivable to not be perfect. We're all just struggling to do our best for the people we love.
I'm getting some great reviews on Amazon, but even more important to me are the people who've been given the book by a friend and have taken the time to look me up and email me to say, "Thank you. You said all the things I've been thinking."
About the Author
Emily Page is a professional artist and part-time writer. Working out of Raleigh, NC, Page spends most of her time elbow deep in paint, but comes up for air periodically to share her art and thoughts on her blog. She translated her ridiculous musings about her family’s journey through her father’s dementia into a book, Fractured Memories: Because Demented People Need Love, Too, available at http://shop.emilypageart.com/.
Follow her on Twitter at @EmilyPageArt23, and read her blog at https://emilypageart.net/.


Wednesday, July 12, 2017

Meet Ann Hedreen author of Her Beautiful Brain


By Ann Hedreen

Without quite knowing it at the time, I began working on Her Beautiful Brain in 2004, when my husband and I made an award-winning documentary film about my mother called Quick Brown Fox: an Alzheimer's Story, which has had a long life on PBS stations and remains in distribution through Women Make Movies, Amazon and other sites. Making Quick Brown Fox made me realize there was so much more of my mom's story to tell than our film could contain. I also began to understand that, while I love filmmaking (which is what I do for a living), I have been a writer since I could hold a pencil and I longed to write much more than I was then writing as a filmmaker and occasional journalist. 

In 2008, the incredible gift of a two-week residency at the Hedgebrook retreat for women writers got me going and the Goddard MFA program, which I completed in July 2010, kept me going on what became a book-length memoir. 

Her Beautiful Brain is the story of my mother, a copper miner’s daughter who was divorced twice, widowed once, raised six kids singlehandedly, got her B.A. and M.A. at 40 so she could support us as a Seattle schoolteacher—only to start showing signs of Alzheimer’s in her late fifties, taking us all on a long descent we never could have anticipated or imagined. 

The book begins in Haiti, where Mom is visiting two of her daughters, one a Peace Corps volunteer and one—me—a journalist, and where we first suspect that something is wrong. From Haiti back to Seattle and back to the mine-gouged Finntown neighborhood in Butte, Montana where she was born; from her historic Seattle neighborhood to a locked geropsychiatric ward, Her Beautiful Brain travels the terrain of a heartbreaking illness: one that currently affects more than 5.5 million American families—a number that is expected to double or even triple by mid-century. 

The tone of the book is essay-like, not blow-by-blow or how-to or what-to-expect. It is a reflection on the life of one person and how Alzheimer’s disease bent the trajectory of that life. Her Beautiful Brain tells the story of who my mom was, the seismic social changes she and we lived through and how her illness changed not only her life but my life, forever. And not just mine but my whole family’s: my five siblings, our spouses, Mom’s 14 grandchildren. We’re a great example of the ripple effect of this most insidious and quietly cruel of killers. We are the children and grandchildren of a woman who lost not her mind but her beautiful, wonderful brain, as it was called by her high school classmates in Butte, Montana, where she was once known as the smartest girl in the school. 

Since Her Beautiful Brain was published in September 2014, feedback has been so poignant and meaningful. You get it, people say. You don’t try to make it pretty. As a caregiver, I feel less alone now. That’s why I wrote the book. Families living with Alzheimer’s disease are becoming ever braver about speaking out and busting through all the shame and stigma and misconceptions that surround Alzheimer’s and other dementias, and I believe it is because more and more of us are sharing our stories. 


You can find me at annhedreen.com, on twitter at @restlessnest and on Facebook.


Wednesday, July 5, 2017

Welcome Peggy Bushy, author of "Lewy, Mom, and Me"



By Peggy Bushy

When Lewy Body Dementia entered my home, the world as I knew it began to shift, and I found myself in a constant state of confusion. My sweet mother, who lived in our home, was hallucinating, her stories and behavior were becoming more and more bizarre, and I had no idea why - neither did any of the doctors I consulted. Lost and alone, I could feel myself becoming a little more unglued with every passing day while I watched the family rules fly out the window one by one. "Wait! I depend on those family rules." They may not be the same as the neighbor's rules but they're mine, they've been mine forever, and I'm comfortable with them.
 
Written or unwritten family rules become our guidebook. Even as adults when we partner up with someone else who has a different set of rules, it doesn't take long before we meld them together and find comfort and harmony with the new set. When dementia crept into my life and disorder began to rear its ugly head, my home felt like a foreign country and I didn't speak its language. Confusion and disorder visited before. I was used to a little fracture here and there in my routine. My feathers got ruffled, I talked about it, or researched it, and sometimes received a remedy for an outside source. This time, as hard as I looked I couldn't find a single answer and it wasn't long before all hell broke loose and my harmonious routine turned into anarchy. That's when I joined a support group and the company of others. That's when I learned I had to think outside the guidebook.
 
My mother was diagnosed with Lewy Body Dementia years after my search for answers and years after family harmony fell apart. After a few weeks of processing the information, I looked for some comfort in a book. I found a few books related to the topic but they were all medical or clinical. I wanted a memoir. A book that would make me laugh, cry, relate, and feel not so alone. Having found nothing, I gathered up my years of journals, and wrote one.
 
Peggy Bushy Author PhotoWriting Lewy, Mom, and Me was difficult. Re-living the journey over and over was often painful, but also has been enriching. In the end it brought me a huge sense of accomplishment - especially when I hear from my readers. Many people have reached out to thank me for sharing my story and tell me how closely they relate to my stories. I am so happy to be able to offer the kind of support that I was looking for when I was lost and searching for comfort.





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Wednesday, June 28, 2017

Meet Judy Cornish, author of "The Dementia Handbook"



By Judy Cornish

Seven years ago I left my law practice in Portland, Oregon, in search of a small town where I could semi-retire and practice elder law. I found the community I was looking for in Moscow, Idaho, but not retirement. Instead, I’m now the owner of two businesses, an author, and the creator of the DAWN Method, a unique approach to dementia care that helps families keep their loved ones at home with more comfort and less stress. It all began with a courageous, sweet, whitehaired woman who lived across the street from me.

She lived alone, with no children nearby, and had been diagnosed with Alzheimer’s several years earlier. When her family said they were moving her into a care facility because she could no longer drive, I volunteered to help her stay on at home. Within a few months, I was helping so many neighbors it became necessary to hire staff. Palouse Dementia Care was born.

From the start, my goal was simple: I wanted to help her—and each of my new clients--continue to live where they wished to live, with dignity and autonomy. My training, however, was not in medicine or social work. I was a lawyer with a classical education.

And yet, my background became an asset: it caused me to see my clients’ dementia from a different perspective. In their changing abilities I saw a pattern. They were experiencing distress over the loss of rational thought but, if I encouraged them to communicate using intuitive thought, they relaxed and found comfort and success. And, although they were losing both memory and memories (their remembering selves), when I joined them in experiencing the present, they were delighted and blossomed, because their experiential selves were intact.

At first I trained only my staff, but soon families were asking what we were doing that helped their loved ones become so comfortable. In 2014, I formed the Dementia & Alzheimer’s Wellbeing Network® (DAWN) and, in 2015, started writing.

The Dementia Handbook: How to Provide Dementia Care at Home was published this spring. It explains the simple pattern of abilities and disabilities I first saw in dementia. My second book, Dementia With Dignity: Using the Tools of the DAWN Method, will come out this fall. It details the emotional needs caused by dementia and provides specific techniques for responding to each of them. I wrote both books for us—the families and friends of people who are experiencing dementia.

The response to my dementia care approach has been very positive from the start here on the Palouse, with many people volunteering and helping me make it available to a wider audience. The response to the book has been positive, too. On Amazon.com, we’ve been on the first page of dementia books almost from publication.

Although my retirement goal changed, my goal in working with and writing about dementia has never wavered. I want to help us, as families, to provide the kindest dementia care possible, enabling our elders to live longer at home with dignity and autonomy. Thank you, AlzAuthors, for the opportunity to share my hope with you and your readers.

About the Author 

Judy Cornish is an elder law attorney and geriatric care manager who has spent the past seven years working with families and people experiencing dementia in northern Idaho. Prior to her work in dementia care, she practiced law, worked in vocational rehabilitation with traumatic brain injury, and spent a year as a psychosocial skills trainer in an enhanced care unit for the mentally ill. With her varied background—and education in literature, languages, fine arts and the law—she brings a diverse set of skills and a unique approach to dementia care. Her DAWN Method enables families to keep their loved ones at home longer, with less stress and more comfort. Today, Judy runs Palouse Dementia Care, providing case management and care services on the Palouse, and the Dementia & Alzheimer’s Wellbeing Network® (DAWN), through which she consults and provides training in the DAWN Method.

The Dementia Handbook on Amazon

Dementia & Alzheimer’s Wellbeing Network® (DAWN):


judy@thedawnmethod.com
www.thedawnmethod.com




The DAWN Method Facebook Page
The DAWN Method Twitter
The DAWN Method LinkedIn




Judy Cornish, JD:
Judy Cornish Public Figure Facebook Page
Judy Cornish Twitter
Judy Cornish LinkedIn




Judy’s dementia care company in Moscow, ID:
www.palousedementiacare.com
Palouse Dementia Care Facebook Page