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 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
Instagram: srkarfelt
Google+: S.R. Karfelt
Pinterest: S.R. Karfelt

Wednesday, December 27, 2017

Meet Crissi Langwell, author of "Come Here, Cupcake", a novel


The story of Come Here, Cupcake focuses on an aspiring baker, Morgan Truly, and the magical ability she’s discovered that allows her to infuse her baking with feelings. If she feels sad while baking, anyone who eats it will feel sad. If she feels happy, her baking will make people feel happy. And if she bakes while feeling romantic…well, you can guess what happens to anyone who tries it. This new ability, along with finding new love, is confusing enough. But adding to Morgan’s life changes is caring for her mother, Karen Truly, who is suffering from Alzheimer’s.

Morgan moved back home to help care for her mom, unwilling to put her in any kind of care facility. She hired an aide to help with Karen’s care, but Morgan still found herself caring for her mom in ways she never had to worry about before. At one point, Karen shatters a glass on the floor in anger, endangering her bare feet. In another scene, she tries to burn the house down. Later, she runs away.

The theme of Alzheimer’s has found its way into more of my books than just this one. In my book, The Road to Hope, one of the main characters is suffering from the early stages of Alzheimer’s, experiencing bouts of forgetfulness. In the sequel book, Hope at the Crossroads, this character’s Alzheimer’s has advanced rapidly, and she is unable to remember anyone. In Come Here, Cupcake, Karen doesn’t recognize her own daughter, mistaking Morgan for a variety of different roles.

When certain themes show up in my writing, it’s usually because I’m working them out in my real life. Alzheimer’s is no exception. My grandmother had Alzheimer’s before she passed away in 2010. I remember the last time I saw her. She’d kept her eyes closed most of the visit, almost as if she were ignoring all of us. When my aunt announced who was there, she opened her eyes when she heard my name.

“Well,” she said, one of the only words I heard her say that day. I’ll always remember that word from her, even the way she said it. That word let me know that she remembered me, even when she’d forgotten everything else.

Knowing my grandmother had Alzheimer’s, I sometimes wonder if this is my fate. Even at just 40, I’ve recognized a few holes in my memory. I blame it on the abuse I suffered in my first marriage and my memory’s protection by forgetting certain traumas. That forgetfulness has haunted me. A few years ago, I went for a run in my neighborhood, and then stopped when I realized I’d run to an unfamiliar street. Panic welled up inside me as I looked around, trying to make a connection to where I was. Everything seemed both strange and familiar, and I knew I was supposed to recognize my surroundings. As my clarity slowly returned, I realized I was only around the corner from my house, and I was on a street I’d been on many times before. The fact that I’d forgotten my own neighborhood was more jarring than actually being lost.

I may face Alzheimer’s again, whether through my parents, my relatives, or even in myself. It’s something many of us have to face. In the meantime, I work out my thoughts and feelings about Alzheimer’s through my characters, letting them make mistakes or figure out triumphs on my behalf, and hoping that someone else who is caring for someone with Alzheimer’s will find a friend in the story.
About the AuthorCrissi Langwell
Crissi Langwell is a writer, blogger, and novelist. She has 9 published fiction and non-fiction books and lives in Northern California with her husband, their blended family of three teens and a ridiculous teenage dog. You can find her at crissilangwell.com.
Purchase Come Here, Cupcake

Wednesday, December 20, 2017

Meet Irene Frances Olson, author of "Requiem for the Status Quo"



My name is Irene Frances Olson, and I survived being an Alzheimer’s caregiver for family members…twice.

My father, Don Patrick Desonier, to whom my novel Requiem for the Status Quo was dedicated, was the first such family member. The second family member was my sister-in-law who was diagnosed with mixed dementia just one month after my father’s death in 2007. My brother was an extraordinary caregiver for his wife; I was just the go-to person for advice, direction, and the occasional caregiving day. I guess having been front and center on my father’s three year Alzheimer’s path gave me an “edge” on experience.

My life after Alzheimer’s saw me volunteering as an Alzheimer’s Association support group facilitator. Concurrent with that work was my job as a certified long-term care (LTC) ombudsman for the State of Washington as an advocate for adults living in LTC facilities. All those experiences culminated in the writing of my first novel.

I started to write Requiem for the Status Quo five years after my father’s death. Back in 2012, it just seemed to me that what I experienced as my father’s caregiver was meant to go further than the confines of my own heart and experience. I was pretty certain a debut author wouldn’t make a ton of money, but that was okay with me because my goal in writing Requiem was to encourage and educate others who might be called upon to take on the role of family caregiver. I figured if I could ease the way for some, then I could at least celebrate that my family’s journey benefited others.

A peek at Requiem’s storyline:

Family caregivers are oftentimes ruthlessly challenged by uninvolved family members who are quick to condemn, but reticent to offer assistance. Such is the case for Colleen Strand, a widow who recently found her own footing who takes on the task of caring for her father, Patrick Quinn, recently diagnosed with Alzheimer’s disease.

Her older brother, Jonathan, criticizes Colleen at every turn and verbally abuses the father when he has the gall to exhibit symptoms of his disease. In short, Jonathan travels down the road of denial, leaving Colleen to deal with all matters regarding their father’s care.

Connected tenuously to a father who barely remembers her and a brother who has become an enigma, Colleen faces the moving target that is Alzheimer's disease, determined to clothe her father with the dignity he deserves, while struggling to squeeze every minute of time she can from him.

Now several months after my novel’s release, I take comfort in the blessings my novel has bestowed on others. Shortly after its release, reviews started pouring in from those who indicated that they could relate to the characters I chose to include in my story. Some readers even indicated they wished they had had access to my novel while they were still on their caregiving journey because they felt it would have opened their eyes more clearly and given them positive direction in the way things might have gone for their loved one.

Many readers, male and female, said they were glad to have a box of tissues handy, both for the sorrowful episodes and the humorous ones found on the pages of my novel. As anyone who has gone through this experience can attest, humor can certainly be found, even in one of the least humorous diseases known to man.

My current journey remains to get my book in as many hands as possible. I continue to hold author readings at senior centers and long-term care housing communities and I offer my novel at a highly-discounted rate to those seniors. If they are not able to pay, I simply ask for whatever donation they are able to provide. As long as they read my book and pass it along to others, I’ll be a happy camper, regardless of the bottom line.

It is such an honor being a part of the AlzAuthors community. I consider my membership in this community as a major highlight in my publishing career.


My author site: www.irenefrancesolson.com

My personal blog: www.babyboomersandmore.com, also known as Living: the ultimate team sport.

Facebook author page: RedmondWriter https://www.facebook.com/RedmondWriter/

Twitter handle: @Boomer98053

Instagram: irenefrancesolsonauthor

Friday, December 15, 2017

Wednesday, December 13, 2017

Meet author and blogger, Wendy Mitchell


Imagine yourself being given a diagnosis of Young Onset Dementia. Your life falls apart, you feel worthless, and of no use to anyone any more. Services are nonexistent, so you feel abandoned
That’s what happened to me in July 2014, when I was diagnosed with young onset dementia at the age of 58, and still working full-time in the NHS. I retired at the age of 59, due to ill health, thinking there was no alternative. Then I sat waiting for services to kick in, but, of course, nothing happened. There were no services.

I could have given up and gone into a deep state of depression, but I knew there must be more. We all had talents before a diagnosis of dementia; we don’t suddenly lose all those talents overnight when we get a diagnosis.

Opportunities started to come my way, first with research. That was once I’d gotten over the barrier of health care professionals thinking it was their right to deny me the option. Taking part in research gives me hope and I need hope. I could be helping create a better future for my daughters, so taking part in research was a no-brainer for me. Many people, when they hear the word ‘research’ have an image of men in white coats handing out dodgy drugs. That couldn’t be further from the truth. Social and technological research is equally important while we await that elusive cure. I’ve taken part in drugs trials, but also social research to find the best ways to live with dementia and care for those no longer able to care for themselves. I’ve tested apps, I’ve commented on web sites. Yes, me a person with dementia. After all, how do the so-called ‘experts’ know they’re getting it right if they don’t ask the real experts – those of us living with dementia now?

My blog, whichmeamitoday.wordpress.com is for me, simply “my memory.” I couldn’t tell you what I did yesterday unless I read my blog. That other people all over the world choose to read it is humbling, plus it’s enabled me to raise awareness. All I'm doing in my own little way is to show others what can be achieved and not to give up. I also hope it will help others look at dementia differently.

Oh, and I've just finished writing my book, Somebody I Used to Know, which is due out in the UK in the New Year and America in May, along with a little “firewalking” in October for my local Hospice.

So, as you can see, I’m a great believer in concentrating on what I still CAN do and not dwelling on the issues that dementia throws at me.

About the Author
I was diagnosed with Young Onset Dementia on the 31st July 2014 at the age of 58 years young. I might not have much of a short-term memory, but that’s one date I’ll never forget.
I have two daughters and live happily in Yorkshire.
Twitter:  @WendyPMitchell