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 26, 2016

Meet Tom & Karen Brenner, authors of "You Say Goodbye and We Say Hello: The Montessori Method for Positive Dementia Care"


By Tom Brenner, MA/Karen Brenner, MA

Tom and Karen’s Story

The couple, a man and woman, stood just outside the door of the Scandinavian Home, arguing. The autumn leaves from the towering elms on the grounds of the nursing home swirled around their feet as the cold wind snatched their voices away.

“I told you, Tom, I don’t want to go back today. I am afraid of some of those people. You know how much I hate scenes and last Saturday Bridget yelled at us and told us that nobody wanted us there. I just froze when she took off her slipper and started hitting that other woman on the head with it. You knew what to do, how to calm her down. Anyway, I don’t know what I’m doing here. I’m just a Montessori teacher. You’re the gerontologist, you’re the specialist on aging, you’re the one who spent the last six years researching dementia. I’m not going in there again!”

He took her hand. “I know this is kind of scary sometimes, but what about the other thing that happened last Saturday? You know, when you had everyone singing together, even Don, who never says a word. He was singing and clapping and for a few minutes, he was connected again. This is why we’re here, this is what we do.”

“I know, Tom. I know that’s what we’re supposed to do, to help people reconnect, but I’m so much more comfortable in a room full of little kids. You’re the expert, not me. I don’t know what I’m doing.”

“Come on, Karen, we’re in this thing together. We’ll learn how to do this as we go. We’re a great team, aren’t we? I mean, we’ve been married forever, we’ve raised great kids, so we can do this together, too.”

“Right, a great team. If we’re so great at this, how come Bridget hates us? Anyway, we argue all the time, we’re arguing now. What makes you think we can work together?”

He picked up her hand again. “Because we are meant to do this, because we beat cancer together, because I can’t do this without you.” He pushed the door open and pulled her in with him and with his lopsided smile, whispered to her, “Anyway, Bridget doesn’t hate us, Bridget hates you!”

That was the way we began our work in dementia care, learning from our mistakes, finding out what worked and trying to understand why it worked. We have had the enormous good fortune of meeting people with dementia who were kind and patient and generous with us. We have also met lots of ‘Bridgets,’ people who want nothing to do with us, who are difficult, sometimes violent. We’ve learned from these hard cases that if we don’t give up, we can find a way to reach even them.

Through field-testing the Montessori Method for dementia care, we found what absolutely would not work and we discovered what worked really well. For us, success is measured in a smile, wide awake eyes, laughter, some sign, no matter how small, that we are helping people with dementia connect once again. We have learned to be careful observers, to see the tiny step forward, the small improvement, the flash of joy. We know that we cannot cure the condition or bring back a fully functioning person, but we can share with you our experiences of discovery and connection.

We’ve taken the dementia journey with many, many people and their caregivers, both professional carers and family members. Our work is designed to help caregivers regain their footing when they falter, to encourage them to celebrate each tiny victory, to remind them that caregiving is a calling of the highest order. When we care for someone we are giving the greatest gift of all: our time, our love, our best effort.

About the Authors:

Tom Brenner is a gerontologist who specializes in creating dementia care programs that are strength-based and positive leaning. His wife, Karen, is a Montessori educator who co-founded a Montessori school for children who are deaf. The Brenners have worked together for the past twenty years researching and implementing the application of the Montessori Method for positive dementia care.

After years of working directly with people living with dementia and their caregivers, the Brenners published a book about their work, You Say Goodbye and We Say Hello: The Montessori Method for Positive Dementia Care. Tom and Karen travel throughout the United States presenting workshops, training programs and speaking engagements about their uplifting and positive approach to dementia care.

Contact Tom & Karen:


Twitter: @BrennerPathways

Wednesday, October 19, 2016

Meet Lisa Skinner, author of Not All Who Wander Need Be Lost

I wrote the book, Not All Who Wander Need Be Lost, Stories of Hope for Families Facing Alzheimer’s and Dementia for those who are coping with loved ones afflicted with a dementia-related illness, and crumbling with the anguish of helplessly standing by, watching your loved one decline, and not knowing how to make it better for all who are affected.

I have been in your shoes so many times. As a matter of fact, I have personally watched 7 of my family members go through all the stages of a dementia-related illness through the end of their life. The irony of my story is that in addition to having 7 family members afflicted with dementia, my 17 1/2 year -old cockapoo, Oliver, has also been diagnosed with doggie dementia! I believe this is my calling, and why I want to help you through your turbulent journey.

My name is Lisa Skinner. I am a behavior specialist dedicated to helping families understand the stages and related behaviors that are associated with dementia-related illnesses.

My first experience with dementia was when I was a teenager and my beloved grandma began displaying some pretty bizarre behaviors. Her doctor diagnosed her with what was referred to back in the 70’s as senile dementia. She displayed a gamut of behaviors including paranoia, hallucinations, and delusions, all of which are symptomatic of dementia; however, not all people who suffer from dementia display all these behaviors. Everyone is different. Everyone displays different symptoms, and the cause of the dementia can be a result of over 50 different illnesses or conditions. Alzheimer’s disease is the number one cause of dementia, but there are many other causes, as I will discuss.

My grandmother believed there were birds nesting in her mattress; rats running along the walls; people breaking into her home and stealing things, as well as men trying to kill her. She would call the police everyday and report one or more of these occurrences. Finally, one day, they got a hold of my mother and told her to do something with her, as she was a nutcase! I was so outraged! My grandma wasn’t a nut, she had an illness! Didn’t they get that? Apparently not, and neither did most other people, including the doctors. Not much was understood about dementia then. We were at a loss for help and understanding of what was happening to my grandma, and how to manage her unpredictable day to day behaviors.

Let’s fast forward 40 years now. I have worked in the senior living industry since 1996, and have helped thousands of families understand how to communicate with their loved one who has dementia. I have set up programming in dementia-care homes, as well as trained staff on how to care for those with dementia. I also hold an administrator’s certification through the Department of Social Services with the State of California. While working on a master’s degree in Psychology, I made the decision to specialize in dementia-related illnesses and teach families how they can have a better-quality relationship with their loved ones through education. Working in the aging care industry, I became aware that there were still very limited resources on this subject; although there was a dire need for families to comprehend it.

The greatest obstacle for family members, caregivers, and the ones afflicted with dementia is how to communicate effectively with one another. It’s a learning process, but one that can be extremely effective and bring joy to the lives of all.

Please join me as I share the stories of real people and real situations of those who have endured the difficult journey through dementia. My goal is that you will be able to relate them to your own situations and benefit from the experiences of others. Many of my readers have told me that they wished they had this information when their loved one had dementia, but that the information has given them closure now that they have a better understanding of what was happening to their loved one, and how all the behaviors that they witnessed finally make sense.

Lisa Skinner

Twitter: @LisaSkinner2015

Wednesday, October 12, 2016

Meet blogger, Lisa B. Capp, The Day the Wheels Fell Off

By Lisa B. Capp

Everyone knows someone touched by dementia or Alzheimer’s disease.

We write, because today these diseases cannot be prevented, slowed or cured. We seek answers because their manifestation is often irrational, frightening and perplexing. And, as human beings, we continually reach from darkness to find light, whether you’re someone living with dementia or you’re caring for a loved one with the disease.

Millennials grew up watching their parents shoulder the responsibility of a grandparent’s care or worse, witness to early onset of a parent. In the absence of a cure, millennials will likely become the primary caregivers to their own aging baby boomer parents; those who possess a cruel knowing of how this disease will change their lives.

Our world has faced many health crises and with enough time; talent and resource has moved the needle on many. My hope: we can do the same one-day for dementia. My aspiration: I can make a contribution to caregivers who struggle everyday in their role. My blog shares a caregiver “survivor” story of the 18-year dementia journey I shared with my mother, Vera.

“The day the wheels fell off” refers to the day my family was left with only one option – to involuntarily commit our otherwise healthy mother to a locked psychiatric ward so professionals might stabilize her psychotic delusions and hallucinations. My mother’s case presented little evidence of the more traditional memory loss and confusion that the media conditioned me to expect.

The role of primary caregiver fell to me; it was just geography. With a family steeped in the Italian-American tradition of cross-generational care there were ongoing expectations, compounded by feelings of falling short, wrapped around a perpetual sense of guilt and conflict. My family, like others, was beset by long-term strains. But as her illness deepened, we unified in the dedication to our mother’s care.

Sharing a home with my mother after my dad’s death, decline began and nighttime always bred apprehension. Women walked across the roof in high heels piercing the ceiling where she laid in bed and winged monkeys pried at her bedroom windows. Late night screams and emergency room visits were commonplace.

From my blog:


As a caregiver to someone with dementia

It’s difficult to remember what they were

Before the tangles and the plaques

If I close my eyes

And push the dementia away

I see her from the seat of my bike
She’s strong and vibrant

Standing behind me

Ready to catch, if I fall

I will stay with her

Standing sentinel

Witness to this long and slow descent

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About the Author: Lisa B. Capp

A transformation champion working with senior leaders of business, government and non-profit organizations across five continents focused on change. I helped organizations that wanted to change their vision, their strategy, their results or their very place in the world. It proved more difficult to help myself on the transformational journey of dementia that my mother and I shared.

Website & blog:

Social Media Links:

Wednesday, October 5, 2016

Meet Barbra Cohn, author of Calmer Waters

I spent a decade caring for my husband Morris, who died from younger-onset Alzheimer’s disease in August 2010. Afterward, I was compelled to write “Calmer Waters: The Caregiver’s Journey Through Alzheimer’s and Dementia” to help other caregivers feel happier, have more energy and time for themselves, sleep better, feel more relaxed and confident, and experience inner peace . . . because I had become an expert caregiver. I felt that if I didn’t reach out to help others my experience would have been for naught. 

I was in a unique position to write “Calmer Waters” because I’ve been a professional writer for the past 36 years and writing is the easiest way for me to express myself. Since I write for manufacturers of nutritional supplements, I am continuously researching the latest and greatest “silver bullets” to improve health, prevent disease and illness, and support cognitive function. 

Writing “Calmer Waters” was based on both my personal experience as a caregiver and my professional experience as a writer/researcher. 

How is “Calmer Waters” different? 

“Calmer Waters” is different from other books for the Alzheimer’s and dementia community. It includes my life story, inspirational essays and rituals from spiritual leaders, stories from family caregivers, and twenty healing modalities from renowned experts that can be practically incorporated into a daily regimen. An added bonus is that both care partners —the caregiver and memory-impaired individual—can use most of the healing modalities, allowing for a stronger connection between the two. 

Response to my book: 

The feedback I’ve received has been very positive. Readers have reported that the book is an excellent resource for all caregivers, regardless of the health issue they are dealing with. Non-caregivers are also enjoying “Calmer Waters” and are using it to improve their general health. 

Support for caregivers 

Personal accounts of the journeys that nine caregivers embarked on with their loved ones illustrate the challenging medical, financial, emotional, and social roadblocks that accompany coping with Alzheimer’s and dementia. 

A rare blend of storytelling and practical and spiritual advice, “Calmer Waters: The Caregiver’s Journey Through Alzheimer’s and Dementia” offers an uplifting account of the strength of the human spirit and a testament to the love and dedication of the 15 million Americans caring for a memory-impaired relative or friend. 

Author’s bio 

Barbra Cohn holds a Master’s degree in professional writing, a BA in English, a BA in Religious Studies, and a Certificate in Nutrition from the Bauman College of Holistic Nutrition and Culinary Arts. As a nutrition educator, she offers nutritional support to caregivers, guiding them to make healthy food and lifestyle choices. Barbra has been a professional writer for 36 years, and has written hundreds of health and travel articles for national, regional, and local publications. She lives in Boulder, Colorado where she and her late husband raised their two children. She is a devoted grandmother to three grandchildren and will soon welcome a granddaughter into the world. In her spare, time Barbra enjoys hiking in the Rocky Mountains, and dancing salsa, tango and Israeli folkdance. 

Social media links: 

@healthwriter1 (twitter) (thehealthcaregiverblog) 

“Calmer Waters: The Caregiver’s Journey Through Alzheimer’s and Dementia” (Blue River Press, 2016, ISBN 978-1-68157-014-3-51699, $16.99, 

Amazon author’s page:

Wednesday, September 28, 2016

Welcome Wendy Chanampa, author of "The Unseen Gifts of Alzheimer's Disease and Dementia"

“To love a person is to learn the song that is in their heart and to sing it to them when they have forgotten.” 
This was written by Arne Garborg, a Norwegian writer, and has been my inspiration for many years. Even though I have worked with people with dementia most of my adult life, it was not until my father was diagnosed that I actually experienced the significance and value of learning one’s song. As I became the student and my father, the teacher, I discovered that to truly accomplish learning his song, I had to lay aside my own agenda, listen and be present. And I learned that being fully present took practice. I found this opportunity for learning with all of my clients with dementia and with their families.

In my personal and professional life, I have aspired to follow this course. As I continue to encounter families and friends struggling with dementia, my desire is to share these lessons in order to assist and empower them. My longing resulted in the writing of The Unseen Gifts of Alzheimer's Disease and Dementia. This book guides us to focus on the gifts that remain in the midst of the storm; gifts that people living with dementia have shown me. Offering practical advice coupled with gentle self-care and love, this writing is intended as another tool for both family and professional caregivers. The beginning step to a deeper connection is recognizing that people with dementia are still with us. Even though their brain is changing and faltering, they are still here. As we understand that people with dementia cannot change where they are, we learn that we can change our responses. Personal change with an open heart is essential.

As we change, our challenge is to become willing to receive and recognize the gifts. There is a place that is very reachable within the faltering brain, well into the late stages of the disease process. I have been blessed with reaching this place on many occasions, with many people, my own father included. This, I realized, can be taught and shared with others. Trusting intuition and allowing an open heart prepares the space and attitude to recognize the sacred beauty of connecting with the individual’s personal song of life. These lessons are at the heart of what has motivated me to bring forth this book.

The feedback has been sincere and heartfelt. The positive impact on the readers is evidenced by calmer, more confident family caregivers. Dealing with their personal feelings has opened doors to a better relationship with their loved ones with dementia. Professional caregivers have commented that this writing provided them with better insight regarding approach and empathy. A deeper understanding regarding family member’s concerns and issues surfaced for many after reading the real life scenarios presented.

Ultimately, self aware and knowledgeable caregivers help facilitate better lives for people with all types of dementia. Because the many emotional challenges and losses often overshadow the well-being of the caregiver, self-care is emphasized. Letting go of dreams, expectations and our agenda can be extremely difficult. The Unseen Gifts of Alzheimer's Disease and Dementia offers a pathway towards this goal. Let us all see the gifts and know that those living with dementia are still with us and are able to teach us, touch us and bless us beyond words.

About the Author

Wendy Wells-Chanampa is a Registered Professional Guardian with expertise in senior care and is a Certified Dementia Care Practitioner and Certified Dementia Care Trainer through the National Council of Certified Dementia Practitioners and International Council of Certified Dementia Practitioners. She is also a Certified PAC (Positive Approach to Care) Dementia Care Trainer through Teepa Snow, MS, OTR/L, FAOTA and a new author.

Social Media Contacts


Wednesday, September 21, 2016

Meet author and Alzheimer's caregiver advocate, Joy Johnston

I write about Alzheimer's because my father's experience with the disease turned me into an advocate, not just for those with Alzheimer's, but for their caregivers as well.

My father lived with Alzheimer's disease for about four years. In that time, my father went from fully independent to living in a memory care center. My mother went from healthy and active to stressed and exhausted, and I believe the prolonged period of stress contributed to her colon cancer diagnosis, just six months after my father died.

As a long-distance caregiver, I experienced my own challenges. It was difficult keeping track of my father's condition, as details were filtered through my mother's optimism, which was welcomed at times, and a hindrance at others. Because my father had not shared his end-of-life wishes, my mother and I were forced to muddle through those difficult decisions. I now encourage everyone to document their medical care wishes, regardless of age and current health.

Shortly after my father died, I began The Memories Project blog. I wanted to make sure I captured the memories I had of my father in writing, and through the process, I realized there was so much I did not know about him. The lesson I learned was to never take a loved one, and their stories, for granted, as Alzheimer’s can swoop in and rob a family of those precious memories. What began as a tribute to my father has transformed over the years to also include discussions on caregiving.

Starting the blog opened up other writing opportunities, which allowed me to further discuss Alzheimer's impact upon society. I was featured on NPR's Shots blog and also had an essay included in Chicken Soup for the Soul: Living with Alzheimer's and Other Dementias. I received the 2015 Rick Bragg Prize for Nonfiction from the Atlanta Writers Club for Greetings from the Nursing Home, a personal essay about my father's dementia experience.

I have gained blogging friends from The Memories Project that I hold dear in my heart. Over the years, some have lost parents or other loved ones, many to Alzheimer's or other forms of dementia. I have learned so much about dementia, in all of its dastardly forms, through their blogs. Hearing their stories only encourages me to continue advocating for better Alzheimer's treatment options and greater assistance and resources for caregivers.

Currently, I am a featured author on The Caregiver Space and am working on a collection of personal essays about Alzheimer's and caregiving. Alzheimer's may have claimed my father's memory, but I hope to never forget the impact the disease had on my family, and how we must come together as a community to raise awareness and push for better treatment options, more affordable care options, and financial and emotional support for caregivers.

# # #

Joy Johnston has been a digital journalist since 2002, and has worked for the Atlanta Journal-Constitution,, and AOL. She currently serves as a National Content Editor for Cox Media Group, where she specializes in creating viral content that drives web traffic and social engagement.

Wednesday, September 14, 2016

Meet Deborah Shouse, author of Connecting in the Land of Dementia: Creative Activities to Explore Together

Fingers on the Keyboard, Heart on the Page
By Deborah Shouse

As my mother moved deeper into dementia, I treasured every moment of connection with her. Often it was only a minute or two, sitting shoulder to shoulder on the bench in the courtyard of the memory care unit, watching the community bunny rabbit nibble on grass. Leafing through a celebrity magazine and Mom pointing to George Clooney saying, “He’s good looking.” (Her first sentence in days—dare I tell my father?). Looking into her eyes and singing “Oh What a Beautiful Morning” and other songs from favorite musicals, I was always looking for new and creative ways to feel close to her.

After Mom died, my partner Ron's parents each lived with dementia and we continued our quest for connection.

This quest was extremely meaningful for me and I wanted to write about the creative possibilities inherent in being a care partner for someone living with dementia. But I didn’t know how or where to start. The documentary film, Alive Inside, pointed the way. When I watched this powerful movie about music transforming the lives of those living with dementia, I instantly knew I wanted to write about this subject.

I contacted a national magazine and suggested an article. The editor asked, “How else are people communicating with those living with memory loss?” As I researched the question, I discovered a whole new world. Across the globe, writers, painters, musicians, gardeners, dancers, expressive therapists, and other innovators were using the arts, creativity, and imagination to tap into the spirit that thrives in those living with dementia. I was intrigued and I knew family and professional care partners would benefit from their ideas.

My final motivation came from a friend, who plaintively asked, “What are we going to do all day?” Her husband was living with dementia and their normal activities were becoming harder to do. She helped me understand that whatever I wrote about needed to be accessible, adaptable, intriguing and easy to implement, for friends and care partners, both family and professional.

For me, this book was a work of the heart. I had already written about my experiences with my mother in Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey. I knew the emotional healing, the joyous sense of connection, the widening of my heart, and the expansion of my thinking that came from sharing my stories with others.

Before I began writing, I asked various family and professional care partners, “What do you think of this idea: a book about staying connected through creativity and imagination?” They were excited by the hope and engagement the book promised. So I started reaching out, often cold calling visionaries in the field. Every person I approached was excited by the subject matter and each interview inspired me and enriched my book. After each conversation, I asked, “Who else should I talk to?” By following the flow of ideas, I talked to dozens of creative experts in all areas of the world, collecting their ground-breaking ideas, and translating them into easy, meaningful activities both partners could do together.

This writing project is now complete and I am still following the flow as I seek ways to share and market the book. The cascade of ideas opens my mind and heart and reminds me to live in curiosity and wonder, a great state of mind for a writer.

Deborah Shouse is a writer, speaker, editor and dementia advocate. Deborah’s newest book, Connecting in the Land of Dementia: Creative Activities to Explore Together, features dozens of experts in the field of creativity and dementia. These innovators share ideas that engage the creative spirit so care partners and people living with dementia can continue to experience meaningful moments of connecting. Deborah and her partner Ron Zoglin raised more than $80,000 for Alzheimer’s programs by donating all proceeds from her initially self-published book, Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey, to dementia-based non-profits. Central Recovery Press has since published an updated version of Love in the Land. To learn more about Deborah and her work, visit