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, January 31, 2018

Meet blogger, Amie McGraham “Taking Care”


LIFE, REPURPOSED

By Amie McGraham

The year I turned fifty, I transitioned from a successful thirty-year sales and marketing career to the role of primary caregiver for my mother, returning to the island home of my childhood three thousand miles away. Mom has had Alzheimer’s for the past few years and, while she’s aware that she’s slowly slipping away, refuses to recognize this because of her religious beliefs. Disease of any type is a topic we never talk about. For her, to acknowledge dementia would be to admit that disease is real: that God’s plan has been altered.

I was raised in this religion. Based on faith healing, it rejects medicine, doctors and hospitals; prohibits alcohol, tobacco, caffeine and drugs. My parents divorced when I was eleven and I divorced myself from religion, beginning a twenty-five year spiral into a life of alcoholism, half measures and wanderlust; unfulfilled careers and relationships. Eventually, I clawed my way out and began rebuilding my life.

Repairing the relationship with my mother is part of my recovery. Immersion into the world of Alzheimer’s caregiving initially felt like a labyrinth in which all roads seemed to lead to frustration, anger and impatience. Sometimes it seemed more like a duty. But caregiving, I’ve discovered, is truly the best form of service. It’s taken a while to embrace this; longer to actually live it. In caring for my mother — actually living with her for the first time since my reckless departure from her life at age thirteen — I have developed real compassion. For my mother. For others. And for myself.

Now, I’m giving back by writing about the Alzheimer’s caregiving experience. My writing roots go back nearly a century; both grandparents were published authors. At age eight, I aspired to be a famous novelist, furiously scribbling stories in my office in the garage. But life happened, and my future dreams of a writing career were shelved until now.

I’ve transferred my passion for writing into purpose, with a flash blog launched in 2017. As the only child, long distance caregiver to my mother whose faith-based religion disallows acknowledgement of her Alzheimer’s, I offer a unique perspective in caregiving. My words take the reader on a holistic journey beyond the clinical aspects of the disease and into the emotional core of caregiving.

My audience includes caregivers and caregiving organizations worldwide. Since a caregiver’s free time and attention span is limited, I keep my message laser-focused; every post is 140 words or less. Although I’m active on various social media platforms, promoting my blog and website is an intentionally understated effort, out of respect for family privacy and due to time constraints as Alzheimer’s rapidly progresses.

As caregivers, we, too, live this disease. Untethered in time and space, we become the mirrors of our carees’ emotions. And through our shared experiences, together we can strengthen the bond of compassionate caregiving.

Recent Feedback

“I’ve been loving your recent posts, bittersweet as they are.”

–Michelle Seitzer, Eldercare storyteller & advocate

“Your blog reminds me of my own caregiving journey. You have a way with words.”

–Melody Leavitt, caregiver to parents with Alzheimer’s

“A brief and important post . . . often the caregiver and young carer roles are far more than personal care. It’s those other tasks that can be your undoing.”

–Lillian Lake, caregiver and young carers advocate

About the Author

Amie McGraham grew up on a small island off the coast of Maine. She has written and published more than 300 articles on animal advocacy for Best Friends Animal Society, the largest no-kill animal sanctuary in the nation and is currently writing her first novel. She received her BA in English from Arizona State University. Now a family caregiver and occasional pet sitter, she splits her time between Maine and Arizona. Her article, “Staying in the Okay Part,” was a featured Caregiver Story on The Caregiver Space. Her blog, Taking Care, shares her journey as caregiver to a mother with Alzheimer’s and is read in ten countries.

Follow her on Twitter, Facebook, Instagram, and on the Taking Care website.

Wednesday, January 24, 2018

Meet Lauren Dykovitz, author of “Learning to Weather the Storm: A Story of Life, Love, and Alzheimer’s”


When I was just 25 years old, my whole world was turned upside down. My mom, who was 62 at the time, was diagnosed with Early Onset Alzheimer’s Disease. I remember that phone call like it was yesterday, although it has been over seven years now. I immediately felt completely alone and utterly lost. I didn’t know anyone my age who had a parent with Alzheimer’s. I had heard a few people talk about a grandparent who had died of the disease, but never a parent. I felt like I had nowhere to turn and no one to confide in, so I didn’t tell anyone about it. I had just gotten engaged that same month and spent the next year of my life planning my wedding without my mom, while grieving small losses of her along the way. And yet, no one knew that I was suffering. Depressed, helpless, hopeless, and lost, somehow, I got through that very dark time.

At age 28, I made the decision to quit my full-time job and became a part-time caregiver for my mom. My experience as a caregiver taught me many lessons of life, love, and Alzheimer’s. I eventually came to accept my mom’s illness and began looking at it in a whole new way. Thinking back on the beginning, I remembered those feelings of loneliness and isolation all too well. I wondered how many other younger people were dealing with a parent’s Alzheimer’s and felt like I once did. I wanted to help them. I decided to share my story with others by writing a blog. The encouragement and praise of my readers led me to write my book, “Learning to Weather the Storm: A Story of Life, Love, and Alzheimer’s.”

It was very important to me that my book be an honest account of my experience. Although Alzheimer’s is not my whole life, it is a very large part of it and has had a great impact on many of my life choices. I wanted to convey the struggles of a young caregiver dealing with her mom’s illness, while still living her own life. I didn’t want to compromise any part of my story or myself. I wanted it to be authentically me. I also wanted my book to be relatable. I wanted readers to feel like they were talking to an old friend. I’m happy to say that these are the exact things readers have said about my book. I’ve been told that it is real and raw. Readers of all ages have said that my book is sad at times, but funny at others, and that they found it to be inspirational. One of my favorite compliments from a reader is that you can see me grow as a person throughout the book.

One of the main reasons I decided to share my story was that I wanted to help people. I wanted to be who I needed when my mom was first diagnosed with Alzheimer’s. Shortly after my book was released, I began receiving messages from total strangers who had read my book. They thanked me for writing it. They said that they felt like they could have written it themselves and that it was as if I was telling their story. Complete strangers say that they feel like they know me after having read my book, as if I was talking to them through the pages. They have thanked me for putting their feelings into words and for not sugarcoating anything about Alzheimer’s.

My book has allowed me to become the voice for those who have not yet found their own. I have become someone who younger people can turn to when their parent receives an Alzheimer’s diagnosis. If they don’t know anyone their age who has ever been in their shoes, then at least they have me and my words. I can proudly say that I am exactly who I needed when I was younger and first learned of my mom’s Alzheimer’s. I will continue sharing my story until everyone realizes that Alzheimer’s is not an old person’s disease. It doesn’t need to be whispered about behind closed doors. It isn’t something to be ashamed of. People need to feel like they can talk about it openly. The more we all share our journeys, the less alone we will feel.

About the Author

Lauren Dykovitz lives in Delaware with her husband and her two black labs. Her mom, Jerie, is still living with Alzheimer’s disease. She is now 69-years-old.

“Learning to Weather the Storm” is Lauren’s first book. She hopes that it will be the first of many, as she plans to continue sharing her story and all of the lessons she learns along the way. Lauren also writes about her experiences on her blog, “Life, Love, and Alzheimer’s.” She has been a contributing writer for several other Alzheimer’s blogs and websites, as well. Please visit lifeloveandalzheimers.com to learn more about Lauren’s journey.

Connect with Lauren


Wednesday, January 17, 2018

Brian Kursonis: Early Onset Alzheimer’s Patient and Advocate Has a Heart to Help


by Ann Campanella

Brian Kursonis, who has early-onset Alzheimer’s, and I met for the first time back in April of 2017. He showed up at the memory care facility where I was doing a reading from Motherhood: Lost and Found, a memoir about my mother’s descent into Alzheimer’s. He had reached out to me a few months earlier after seeing some posts on social media about my mother’s illness.

Brian had attempted to meet me at two earlier book signing events. The first one came and went because, well, he forgot about it. The second one, there was some confusion about which Barnes & Noble I would be at, so we ended up missing each other.

The third time was the charm. When Brian walked into the dining room of the memory care facility, I recognized him immediately from photos I’d seen on Facebook and Twitter. I asked him to join our group that had gathered around a long table. I was struck by Brian’s kind smile, his intelligence and wisdom and the fact that he and I were almost the same age.AlzAuthor Ann Campanella with Brian Kursonis

At the time, Brian was 55 and I was 56. We connected instantly, perhaps because I had experienced 14 years of my mother’s Alzheimer’s, and he was at the beginning of his journey. According to research studies, he may only live 8 to 12 more years, and his cognitive function will likely decline within 2 to 4 years.

During the reading, I asked Brian tentatively if he was comfortable talking about his condition. He cleared his throat and said, “Sure. I’d be happy to.”

Brian told the story of being diagnosed after “blanking out” repeatedly at his job where he was a process analyst of retirement accounts. The work load was heavy, with lots of number crunching, and he was used to being good at it. But suddenly he was on the verge of being fired.

He went to the doctor for Vertigo, expecting an easy fix. Brian’s fiancé, who accompanied him, mentioned in passing to the doctor that his memory was terrible. This led Brian to a seeing a neurologist. The diagnosis came in stages, and his doctor used the word, “dementia.”

“I was stunned beyond stunned,” said Brian. “I didn’t even know that was a possibility
.Brian with one of his dogs

Brian’s life changed dramatically. Suddenly, he was no longer working and, instead, spent his days in an easy chair, caring for the dogs. Gradually, Brian realized he could waste the rest of his life feeling depressed with nothing to live for, or he could move forward. He began reaching out and connecting with others (like me) in the Alzheimer’s world.

By the end of the evening, I felt as if I’d met a sibling, someone who knew what it was like to stand on the precipice of Alzheimer’s and still have hope.

Recently, I set up an interview with Brian, and he shared more of what happened after his diagnosis.

After the Diagnosis

After his period of grief and adjustment, Brian realized that helping others made him happy. So he set about finding ways within the Alzheimer’s world to do just that. He drew from his experience in a former line of work as a counselor and created a website called withALZmyHEART. The website walks people through an early-onset diagnosis and offers hope.Brian with Alzheimer’s advocate Ann Tillery

“I stumbled into being an advocate for Alzheimer’s,” Brian said. He met people online and at conferences. With the awareness that he was running out of time, he reached out to more people through social media. Because of his unique ability to articulate about a disease that is a mystery to many, he has been offered speaking engagements and interviews with national publications.

Brian has become the face of Alzheimer’s in PhRMA’s National GoBoldly Campaign, a public service announcement that runs on many television channels. Men’s Health Magazine and The L.A. Times ran stories on him, and he’s been interviewed by CBS Evening News and for a PBS documentary coming out in 2018.

Faith2Care

However, the project dearest to Brian’s heart is Faith2Care, an innovative plan to connect caregivers, people of faith and those in need. The idea came to him after spending time on several Facebook caregiver groups. “The posts broke my heart,” he said. “I had to find a way to help.”
Brian working on his most important project: Faith2Care.

Brian wants to find all the caregivers that need help – anything from mowing a lawn to giving someone a ride or providing respite care – and match them up with those in the faith community who want to help.

“Caregivers are a hidden group,” said Brian. “They don’t have time to have a voice. The faith community wants to help, but they don’t know how to find the caregivers.”

“I want to do this on a grassroots level,” said Brian, “bringing people together.” His Faith2Care website will be the hub, and he has hired a company to help him manage all the data.

Brian has not allowed his disease to define him. “I don’t care how people see me,” he said. “I just want to help.”

The future does not concern Brian. He’s focused on the present and doing everything he can to make the world a more compassionate place for caregivers and those who are living with Alzheimer’s.

Ann Campanella joined the management team of AlzAuthors last year. She is the author of Motherhood: Lost and Found, a memoir that tells the story of her mother’s descent into Alzheimer’s at the same time Ann was trying to become a parent and experiencing infertility.

Connect with Brian on his social media:

Websites: withALZmyHEART and Faith2Care




Wednesday, January 10, 2018

Harriet Hodgson writes a new book, “Smiling Through Your Tears: Anticipating Grief”


Anticipatory Grief: Powerful Feelings for Alzheimer’s Caregivers

By Harriet Hodgson

After my father died, my mother moved to Florida to be near her older sister. Two years later her sister died, and Mom felt lost without her. To fill her days, Mom went on a variety of trips, often with a friend. One day she called to tell me she was “out West.”

“What state are you in?” I asked.

“I don’t know.”

What town are you in?”

“I don’t know.”

“Well, where are you now?”

“I’m in a phone booth!” she replied in an angry voice. (Phone booths still existed then.)

Was my mother with a tour group? Did she have enough money? When would she be home? I didn’t have a chance to ask these questions because Mom blurted, “But I can’t talk to you now because the boat is going down the Colorado.” Then she hung up.

I stood in the kitchen, with the phone in my hand, and started laughing. Always interested in the world, I pictured Mom in a pith helmet, clad in waterproof gear, sitting in an inflatable boat with tourists, and shooting over rapids. Minutes later my laughter turned to tears. During our regular phone calls I realized the intelligent, dependable, funny mother of my childhood had become a different person—confused, impatient, and angry.

On the morning of my father’s funeral Mom had suffered a mini stroke. The strokes continued in Florida. When she was found wandering in a Sears store (Mom was looking for her car), I moved her to my hometown, Rochester, Minnesota. I found an apartment for her in an assisted living community. Mom was quite happy there, but, as the years passed, her dementia worsened. According to her doctor, Mom’s mini strokes added up to Alzheimer’s.

He didn’t order cognitive tests for her because, as he noted, “We already know the results.” Cell-by-cell, my mother was dying right before my eyes. Witnessing her decline was heartbreaking. I felt like a black cloud followed me everywhere I went. A friend of mine, who is a certified grief counselor, asked how I was feeling. I told her I was stressed and exhausted. “You’re going through anticipatory grief, and it’s very powerful,” she explained.

Her comment led to my research on anticipatory grief, and my research continues to this day. What is anticipatory grief?

Anticipatory grief is a feeling of loss before a death or dreaded event occurs. Everyone goes through anticipatory grief, yet many have never heard the term. I decided to write a book on the topic and worked on it for a dozen years. I sent the outline, along with a cover letter, to my New York City publisher, and waited anxiously for a reply. Nothing. Finally, I called the acquisitions editor. Yes, she had read my letter and outline. “I don’t get it,” the editor said. “I just don’t get it.”

From the sound of her voice, I could tell the editor was young and hadn’t experienced anticipatory grief yet. There was no way I could make her “get it.” Still, the editor gave me some smart advice: get a medical co-author. I followed her advice and contacted Dr. Lois Krahn, a Mayo Clinic psychiatrist who lived in my neighborhood. Dr. Krahn was willing to read the manuscript, vet the contents, and contribute to it.

With patience and skill, Dr. Krahn wove her points into the existing manuscript. We tried to find a publisher, but struck out. The traditional publishers weren’t interested in grief, so we turned to CreateSpace, Amazon’s publishing company. After the book was released Dr. Krahn called me. She said she hadn’t thought about anticipatory grief before working on the book. “Now I realize it walks into my office every day.”

Anticipatory grief may have walked into your life. Smiling Through Your Tears may be just the help you need. It focuses on anticipatory grief’s uniqueness, grief of terrorism, anticipatory grief as a reaction to change, factors that shape this grief, symptoms and stages, responses to anticipatory grief, complications, coping tips, and how early grief may help you. Each chapter ends with Healing Steps you may take.

Amazon reviews of the book are rewarding:
A life changing book.
Anticipatory grief is very hard. Good guide to get through it.
They have provided a guide for the emotional dynamic and healing path to wholeness.
Very good book about a painful subject.
If you are a long term caregiver, as I am, this book is a must.

You don’t have to go through anticipatory grief alone. Smiling Through Your Tears may serve as your guide and companion. Most important, it can lead you to the future. I give workshops about this form of grief. At the end of a workshop an audience member thanked me for doing it. “I didn’t know what was happening to me,” she admitted. “Now I know and can give it a name.”







Wednesday, January 3, 2018

Meet S. R. Karfelt, author of "Nobody Told Me: Love in the Time of Dementia"


By S. R. Karfelt
Writing about memory loss wasn’t something I’d planned to do.

I’m a fiction writer. But when my mother-in-law could no longer live on her own she moved in with me and my husband, her son.

That same husband and son had to go work in Asia soon after she arrived, leaving me alone with Gummy for a short but difficult while. His parting words were, “Do whatever it takes to survive it.”
What do writers do to survive? They write.

Even then I didn’t plan to write a book. I had my next fiction book lined up. My grand plan was to get Gummy settled, on medication, and used to her life here. Then I’d get back to writing. I’d blocked off a couple months to accomplish this.

Is it even possible to get someone used to losing their memory? I was so young and naïve last year. Gummy couldn’t remember where she was or why. She packed to go and asked questions non-stop until she’d drop from exhaustion, and later wake up panicked and deep into sundowning in the middle of the night.

At some point I wrote a desperate post on Facebook. The tsunami of support that came from others who were going through the same thing, or had, surprised me. It helped knowing I wasn’t alone. I continued writing about Gummy privately. Eventually I told my publisher the expected book wasn’t going to happen. I could barely take the time to go into the bathroom alone, let alone write.

Saffi? Saffi? Where’d you go?

I’m in the shower, Gummy! I’ll be right out!

Hello? Is anybody here?

My publisher is the first one who said, “Why don’t you put those Facebook posts into a manuscript and see if you can turn it into a book?”

It makes me laugh now to remember my thoughts then. Wow. I could do that. I’ll just whip out a little memoir, and fulfil my publishing obligation in no time. That won’t be too hard. Talk about naïve. I rewrote that book eighteen times before it even went to the editor. Then there were another ten revisions with her. I cried over that book, and occasionally laughed like a lunatic.

Trying to help Gummy during the day and then write about it at night was an emotional bloodbath. Pawing through my memories of us and laying them bare for the world made this the hardest thing I’ve ever written.

Gummy is one of my favorite people. I adore her. As I say in the book, I’ve been married to her son for eighty billion years. I know her. She knows me. Even now, as bad as the disease has progressed, I cannot look her in the eye and lie. She knows. Over the years we’ve had little in common but our dry humor and stubbornness, and that is the one thing that hasn’t changed. That’s why it took so long to write.

By the time I began writing the book, Gummy had gone into a local memory care facility. Then I turned my focus and time into helping her get comfortable there. At night I wrote and rewrote that book until I found hope and humor in this godawful situation. It may have taken a few years off my life, but I found it.

About the Author
An entrepreneur, wife, mother, and novelist, S.R. Karfelt helps care for her mother-in-law, Gummy. S.R. authored a memoir about their relationship, for better or worse—a daughter-in-law’s journey, it’s entitled NOBODY TOLD ME: love in the time of dementia.
Twitter: @SRKarfelt
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