Posted: November 15, 2017 Filed under: Alzheimer's, Books, Health, Writing | Tags: Alzheimer's, appreciation, Books, eBooks, health, sale, writing
November is National Caregiver Appreciation Month, a time to recognize the long hours, sacrifice, and love all caregivers bring to the task of caring for a loved one with dementia or any long-term illness. In honor of their efforts, AlzAuthors is hosting an eBook sale and giveaway! This is a terrific way for caregivers who are looking for knowledge, guidance, and support to find carefully vetted books to help guide and inspire them everyday.
Consider this from the Alzheimer’s Association:
In 2016, 15.9 million family and friends provided 18.2 billion hours of unpaid assistance to those with Alzheimer’s and other dementias, a contribution to the nation valued at $230.1 billion.
- Approximately two-thirds of caregivers are women, and 34 percent are age 65 or older.
- 41 percent of caregivers have a household income of $50,000 or less.
- Approximately one quarter of dementia caregivers are “sandwich generation” caregivers — meaning that they care not only for an aging parent, but also for children under age 18.
Starting today through November 21st, you can take advantage of this excellent opportunity to check out some of our books at reduced prices, ranging from free to $2.99. We offer a variety of genres, including fiction, memoir, non-fiction, and children’s literature. Many of our books are also available in paperback and audio, so check them out too.
Our books are written from a deep place of understanding, experience, knowledge, and love. May you find one – or two, or more! – to help guide you on your own dementia journey.
I’m so pleased to be a part of the AlzAuthors’ administrative team. Working with Marianne Sciucco, Jean Lee, Vicki Tapia and Kathryn Harrison, the women who make up this team, is a privilege. They are all brilliant, kind, hardworking and generous. Each one has a story of how Alzheimer’s has impacted her life.
If you haven’t read their stories, you should! This week is the perfect opportunity. All of their books will be on sale
To see the wide selection of books on sale, visit AlzAuthors.com by clicking here.
Posted: November 9, 2017 Filed under: Alzheimer's, Books, Family, Health, nature, poetry | Tags: Alzheimer's, appreciation, beauty, family, gifts, gratitude, grief, health, joy, love, nature, poems, poetry, renewal, serenity, transitions, writing
(This post was first published on the AlzAuthors
Expressing the Inexpressible through Poetry
By Ann Campanella
When I was in my early thirties, my mother began showing signs of Alzheimer’s. She was 41 when I was born, so I suppose it shouldn’t have been a shock to see her aging in this way. But it was.
I always knew she was an “older mom.” She had been a fount of wisdom for me during my adolescence and early years of marriage.
Mom always said her children kept her young. There was a span of ten years among us, and I had vivid memories of my mother hiking, playing tennis, swimming and sailing at the upstate New York lake we visited each summer.
My grandmother and great aunts lived into their nineties. I had imagined my mother would always be there for me, at least until she was well into her eighties. But it wasn’t to be.
My mother’s mind began to unspool at the same time I was trying to become a mother and struggling through a series of miscarriages. At first her memory became slippery and she began repeating stories. Her emotions seemed out of proportion to what was happening in her life. Her words no longer matched her behavior.
Mom’s descent into Alzheimer’s was heartbreaking and beautiful at the same time. Heartbreaking because she was aware that “something wasn’t right.” It was painful to see her struggling to present a healthy face to the world when her memory was disintegrating. Beautiful because my mother’s spirit showed through her trauma, and the disease became a stage upon which the love in our family could be illuminated and acted out.
Poetry has long been a way for me to attempt to express the inexpressible. When the jagged edges of loss threatened to undo me, writing poems provided a way to hold onto pieces of my mother. Each poem or “stage act” allowed me to bathe my mother’s life in light and meaning.
What Flies Away is a collection of poetry that tells the story of my mother’s illness, my father’s sudden death and the miraculous birth of my daughter. This collection of poems won second place in the Oscar Arnold Young Book Award for the best book of poems in North Carolina in 2007. I was also honored that two of the poems, “The Chase” and “How to Grieve,” earned the Poet Laureate Award.
Now, ten years later, my collection, The Beach Poems, has been published. I consider it a sequel to What Flies Away, as this group of poems shares the story of what “comes after.”
I’ve always loved Anne Morrow Lindbergh’s Gift from the Sea, a book where the author reflects on the patterns of her own life. I was able to do this at the beach.
My mother had Alzheimer’s for fourteen years, and her disease changed me. After a decade and a half of caretaking, it took time for me to find myself again.
During a series of retreats, I spent time walking the sand and absorbing the rhythm and beauty of the coastline. Gradually, held in the arms of the wind and waves, I was able to release my grief and begin to heal. Memories of my mother and the time before she was ill slowly trickled in. To my surprise, joy washed over me and I felt my spirit come alive again.
Writing about my mother’s Alzheimer’s experience, whether through poetry or prose has been a privilege. I spent 20 years working on my memoir, Motherhood: Lost and Found, which was featured on this site on January 18th, 2017. My memoir has been recognized internationally and my poems have received many awards.
But I’m most grateful to have had the opportunity – through readings and speaking engagements – to meet and link hearts with those who are walking their own difficult path through Alzheimer’s. The Beach Poems is my gift to them.
I am here
at the edge
of the earth
on a mat of sand
wind cups the curves
of my body, waves
a constant roar
in my ears
blue belt of sky
presses against the horizon
I think of my mother –
all that was and never will be –
cry out into the void
but wind and sand and sea
my mother is here
and not here
and always will be
I hug the earth.
(from The Beach Poems, Main Street Rag Publishing Company)
About the Author
Ann Campanella is the author of the award-winning memoir, Motherhood: Lost and Found. Formerly a magazine and newspaper editor, her writing has been widely published. She blogs about her life and horses at Fields of Grace and has been a guest on many blogs and podcasts. Ann’s poetry has been featured on Garrison Keillor’s The Writer’s Almanac. Twice, she has received the Poet Laureate Award from the North Carolina Poetry Society. She lives on a small horse farm in North Carolina with her family and animals.
Fields of Grace
https://www.amazon.com/Ann-Campanella/e/B001JOWQ3A (Amazon Author page)
https://mainstreetragbookstore.com/?product=the-beach-poems (Main Street Rag Online Bookstore)
Posted: November 3, 2017 Filed under: Alzheimer's, Books, nature, poetry, Writing | Tags: Alzheimer's, appreciation, beauty, gratitude, grief, joy, lessons, poems, poetry, renewal, serenity, transitions, writing
Happy November, everyone! I have a couple of special announcements today. First, November marks the release of The Beach Poems! If you took advantage of the pre-publication discount, you should be receiving your book soon.
November is National Caregivers’ Month. It’s so perfect that The Beach Poems was birthed during this particular month because these poems tell the story of what it was like being a caregiver for my mother who had Alzheimer’s for 14 years and what it was like after she passed away.
The beach was the place I went for respite and healing. I took a series of retreats on the coast and in the midst of the wind and the waves, I gradually rediscovered who I was again. Memories of my mother and my younger self came flooding back to me, and I was able to release the grief I had carried for so many years.
Like a shell caught in the tide, it felt as if my heart was rinsed over and over, scrubbing away the grime of what had weighed me down. My mother was now free and so was I.
I hope you’ll enjoy reading about the transformative power of the sea as much as I enjoyed working on this collection. Over the coming weeks, I’ll share a few stories and poems from that time.
The next big announcement is that for the entire month of November, in honor of my mother and all the hardworking caregivers, the eBook of Motherhood: Lost and Found will be available for only $2.99, less than half the original price of $7.99. Click here to get your copy, and feel free to share the word!
For anyone interested in a signed copy of The Beach Poems, leave a comment and include your email.
Thank you to the many friends who supported me on the journey of caring for my mother and sharing our story through poetry and memoir.
Posted: October 19, 2017 Filed under: Alzheimer's, Health | Tags: Alzheimer's, gratitude, hope, joy, lessons, transitions
In Part I, Brian faced the devastating diagnosis of early-onset Alzheimer’s, and in Part II, he moved from depression to action. To begin the series, click here.
Brian and his daughter running a race together in 2015, before his diagnosis of early-onset Alzheimer’s. Brian is running again, but his most important race is spreading the word about Faith2Care while he still can.
With all the media attention Brian has received, he realized, “I’ve been given a platform, and I don’t want to waste it.” He wanted to bring those with early-onset Alzheimer’s to withALZmyHeart, but he wondered who else he could help. He wondered and waited.
Brian began spending time on several Facebook caregiver groups. As anyone who cares for someone with Alzheimer’s knows, the work can be exhausting and emotional. “The posts broke my heart,” he said, “The suffering in these groups is mindboggling and outrageously sad.”
“I’m a fixer, so I wanted to help,” Brian said. “But I didn’t have answers.” He became involved with NAPA (the National Alzheimer’s Project Act), but soon realized that government could not address the problems caregivers had. Who could? he wondered.
The answer that came to him was: the faith community. Not just one religion or faith, but all of them. “When the idea hit me, I started thinking about the problems and the roadblocks,” said Brian.
One of the tenets of faith communities is to help the needy. “Caregivers are a hidden group,” says 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.”
With Faith2Care, Brian’s innovative website, he could find caregivers that need help – anything from mowing a lawn to fixing a leaky pipe or providing respite care – and match them up with those in the faith community who want to help. “It’s all about crowdsourcing,” he says.
The Faith2Care website would be the hub, providing a safe funnel where people could connect. He has already hired a company to help him manage all the data, and Faith2Care was recently granted 501C3 status.
Brian’s dreams are big. He hopes to get grants and large donors, so that he can hire people to run the program when he is no longer able. “I’m doing this because I have to,” says Brian. “I’m so motivated because I see it as an answer to all these hurting people.”
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.
Brian sees the silver lining in his own diagnosis: “This disease has given me my joy back! I am more fulfilled and more motivated than I have been in years.”
Brian meeting with students involved in The Youth Movement Against Alzheimer’s
To read Part I: A Devastating Diagnosis, click here.
To read Part II: From Depression to Action, click here.
Connect with Brian through his social media:
Websites: withALZmyHEART and Faith2Care
Posted: October 12, 2017 Filed under: Alzheimer's, Health | Tags: advocacy, Alzheimer's, friends, grief, health, lessons, transitions
In Part I, Brian faced the devastating diagnosis of early-onset Alzheimer’s. To read about it, click here.
It gradually dawned on Brian that he had only three of four years ahead of him of being cognitively aware. “I thought back to my counseling days when I had to show people that their perspective was keeping them trapped,” says Brian. “I had accepted the perspective that Alzheimer’s wants to give you: You might as well give up. There’s no cure. No hope. I had swallowed it hook, line and sinker.”
Brian realized he had a choice. He wondered what would make him happy and fulfilled. “The answer for me was helping people,” he says. “When I help someone, I feel good.”
This shift in perspective led Brian to create withALZmyHEART, a website that walks people through a diagnosis of early-onset Alzheimer’s. Brian says there were no blogs about adapting to dementia and mild cognitive impairment, so he went about changing that. He tells his story on the blog, shares a wide variety of advocacy projects he’s involved with and offers a page of helpful links.
Brian understands hardship. Soon after his diagnosis, he not only lost his job and his fiancée, but he had to give up his home and even his dogs. Because of his limited income, he had to move into a small apartment. He’s also no longer able to drive.
But none of this has stopped Brian from helping others. He attends conferences and reaches out through social media to others affected by Alzheimer’s.
“I stumbled into being an advocate,” Brian says. 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, an advertisement promoting Alzheimer’s researchers and patients that runs on multiple 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.
“Because I present well, people don’t know I have Alzheimer’s when they meet me,” says Brian. But, at home, it’s a different story. Brian leaves notes for himself, sets alarms to help him remember appointments and tries to schedule tasks that demand mental alertness early in the day. He explains to reporters that he might interrupt them in the middle of a question, because he doesn’t want to forget an important thought.
To be continued…Part III: Brian’s Biggest Project — Faith2Care
To read Part I: A Devastating Diagnosis, click here. To read Part III: Brian’s Biggest Project — Faith2Care, click here.
Connect with Brian through his social media:
Websites: withALZmyHEART and Faith2Care
Posted: October 5, 2017 Filed under: Alzheimer's, Health | Tags: advocacy, Alzheimer's, dementia, early-onset, friends, grief, health, lessons, transitions
I had the privilege of meeting Brian at one of my readings. We connected immediately because of our intimate understanding of Alzheimer’s. I am pleased to be able to share his story.
Brian Kursonis was a father with a fiancée, a good job, a home and even beloved dogs when his world came crashing down around him. At the age of 55 he was diagnosed with early-onset Alzheimer’s.
A former counselor, Brian worked for a large financial company as an analyst for retirement accounts. He crunched numbers all day long and spit out reports. Suddenly, he started “blanking out” on the job. Time would go by and he’d have no awareness of what he’d been doing. It was as if he’d gone unconscious.
He thought it might be Vertigo, so he went to a doctor, hoping for a quick fix. His fiancée accompanied him and mentioned in passing that Brian’s memory was terrible. The doctor ran some tests and eventually sent him to a neurologist. This doctor used the word, “dementia.”
“I was stunned beyond stunned,” Brian says. He didn’t think it was possible. “I considered dementia synonymous with senility, and I knew I wasn’t senile.”
With early-onset Alzheimer’s, the diagnosis comes in stages, says Brian. “The first thing they tell you is you have dementia, then mild cognitive impairment, then you learn you have Alzheimer’s or Lewy Bodies,” he says. “The doctors give you a label, but nobody explains anything.”
Initially, Brian kept his prognosis from his family. He knew it would be devastating. And it was.
It changed the dynamics within the family. Brian’s position, which had been head of the household, dropped to the role of “handicapped dad.” His opinions no longer mattered. Eventually, his fiancée left him.
Brian felt himself slipping into a depression. With his counseling background, he recognized the signs. A former runner, he stopped exercising and gained 30 pounds. “My life consisted of sitting in an easy chair and taking care of the dogs,” says Brian.
To be continued…Part II: From Depression to Action Brian explains how he rejected the perspective that Alzheimer’s wanted to give him and began to make an impact as an advocate.
Connect with Brian through his social media:
Websites: withALZmyHEART and Faith2Care
Posted: September 27, 2017 Filed under: Alzheimer's, Books, Health, Writing | Tags: Alzheimer's, appreciation, Books, health, sale, writing
I’m so excited to announced the AlzAuthors eBook Sale that starts today! You can find lots of great memoirs, fictional stories, caregiving guides, etc. at fantastic prices!
The Kindle version of Motherhood: Lost and Found will be available at its lowest price: 99 cents! starting at 11 a.m. Eastern Standard Time. And, as a special bonus, you can get the audiobook for only $7.49 (a discount of almost 70 percent) if you purchase the eBook.
Click here to go to the sale! It lasts through Saturday, Sept. 30th, the last day of World Alzheimer’s Month.