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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: Inspiration

Be the LOVE

12 Saturday Nov 2016

Posted by Ann Napoletan in Inspiration

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Motherhood: Lost and Found, a Memoir of a Mother’s Alzheimer’s

10 Thursday Nov 2016

Posted by Ann Napoletan in Advocacy and Awareness, Books, Caregivers, Family, Guests, Helpful Resources, Inspiration, Life After Caregiving, Sandwich Generation

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alzheimer's books, alzheimers, alzheimers daughters, alzheimers memoir, dementia

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Ann Campanella with her mother

Today I’m very happy to share a guest post from award-winning author and blogger, Ann Campanella.

As Ann and I exchanged a few initial emails, I felt an immediate kinship with her. Alzheimer’s is life changing. For me, that manifested itself in a strong desire to use my experience for good – to help others. I’ve always said that I need to know this journey was not in vain and that our story has purpose. Ann shares that sentiment.

“Like you I’m passionate about reaching out to those who need support in their journey through Alzheimer’s,” she said. “My mother lived with the disease for almost a decade and a half, and, at the time, I felt very alone. That’s part of the reason I hope to share my story…to give others an emotional road map through this kind of difficult life circumstance.”

Please join me in thanking Ann for sharing her uniquely beautiful story with the world.

_____

A Guest Post by Ann Campanella

My mother was a kind and gentle soul who loved words. She came from a family of writers and artists who had a deep appreciation for nature and family relationships. Every summer, when I was a child, we canoed on the clear waters of Lake George near her ancestral home in upstate New York, and she taught me that if I looked closely, I could see all the way to the bottom.

After having Alzheimer’s disease for fourteen years, my mother passed away. But I’m still plumbing the depths, looking for beauty, the way she taught me.

In her early 70s, Mom first began showing signs of Alzheimer’s at the same time my husband I were trying to start a family. We had just moved from Houston to North Carolina, and were planning to build a barn for my horse Crimson.

I had my first miscarriage as Mom’s memory began slipping.

motherhood_ebookcovMy memoir, Motherhood: Lost and Found, tells the story of losing my mother to Alzheimer’s as I suffered through several years of infertility. For almost a decade, I walked a path of questioning who my mother was becoming and if I would ever be a mother myself.

I yearned to have my own children, yet I was thrust into the role of caretaker for my parents. My mother had always been kind and compassionate, so it was a shock when she wasn’t able to comfort me in my pregnancy losses.

In the beginning of her illness, Mom became angry and upset at her own confusion. I made regular trips across the state to spend time with and try to understand what was happening to her. In the book, I share my mother’s heart-wrenching anguish and our family’s bewilderment over her gradual descent into Alzheimer’s.

As my mother’s condition deteriorated, writing and nature were my solace.

I poured my emotions into my journals, and they became the backbone for my memoir. Writing provided a way for me to put some distance between myself and the grief I was feeling. When the pain was too much to bear, I would walk down to the barn. Some days, I would take a ride on my horse listening to the birds my mother used to love. Other days, I could do no more than lean my head against my horse’s neck.

Despite this decade of loss, a part of me felt vibrantly alive. Each loss made me more aware of the transient beauty around me. While my mother lost the ability to clothe, bathe and feed herself, I sensed her enjoyment of a gentle breeze or a sunlit window.

Mom often thought she was back at Lake George, at her childhood summer home. “Is that a sailboat?” she once asked me, pointing to a telephone pole in the parking lot of her rest home.

I was inspired by my mother’s will to live, her desire to connect even as her faculties slipped away. My faith, which had lain dormant for years, blossomed. As I learned to let go of what I had hoped for, I discovered gifts of grace all around me.

Motherhood: Lost and Found is my journey through my mother’s Alzheimer’s. It was not an easy road, but I am so grateful to have had those years with her. The memoir shares a story of transformation – how I lost the mother I thought I would have, but found, under the surface, a deeper appreciation for who she was and what it meant to be a mother.

 

author300Ann 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 is a guest blogger about Alzheimer’s at www.careliving.org, a blog created by Kim Campbell, wife of country music singer Glen Campbell. Twice, Ann 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.

Check out Ann’s website, and connect with her on Twitter, Facebook, and Instagram.

 

 

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This Week in Alzheimer’s

05 Saturday Nov 2016

Posted by Ann Napoletan in Advocacy and Awareness, Call to Action, Caregivers, Face of Alzheimer's, Galaxy A List, Helpful Resources, Inspiration, November-National ALZ Awareness Month, Research, Round Up, Support system, Treatments and Therapies, USAgainstAlzheimer's

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a list, alzheimers, alzheimers news, alzheimers research, alzheimers support, alzheimers week in review

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New Alzheimer’s/Cognitive Impairment Benefit from CMS!

On November 3, 2016, it was announced that the Centers for Medicare & Medicaid Services (CMS) has finalized its decision to pay for cognitive and functional assessments and care planning for patients with Alzheimer’s disease and other cognitive impairments. This milestone marks the first time people living with Alzheimer’s disease will have paid access to care planning with a medical professional. Read more here.

Does Deep Brain Stimulation Boost Memory in Alzheimer’s Patients?

Researchers at Toronto Western Hospital and Johns Hopkins University are hopeful about a clinical trial involving deep brain stimulation. One might think of this as a pacemaker for the brain; electrodes are implanted in the brain and deliver a steady stream of electrical impulses to the part of the brain that regulates memory. The study is currently moving into its third and final phase.  Read more here.

Greg O’Brien Honored

Journalist, author, and advocate Greg O’Brien received the inaugural Bea Lerner Valor Award at September’s third annual UsAgainstAlzheimer’s Out of the Shadows Dinner. The award is given to a person living with dementia and is named to honor the mother of UsAgainstAlzheimer’s co-founder, Trish Vradenburg. Read more here. 

National Alzheimer’s Awareness Month

The White House issued a Presidential Proclamation declaring November 2016 as National Alzheimer’ Awareness Month. Read more here. 

Alzheimer’s Talks: Dr. Rudy Tanzi

The transcript and recording from October’s Alzheimer’s Talks call have been posted. The call featured leading researcher, Dr. Rudy Tanzi, who spoke in depth about his new work on a microbial hypothesis of the causes of Alzheimer’s disease.   You can find the transcript and recording here. 

Easy Actions You Can Take to Make a Difference!

  • Take 30 seconds to provide hope to others touched by Alzheimer’s!! Introducing Adversity 2 Advocacy’s Project Hope Exchange! Learn more here.
  • Join the A List 1000 today! It just takes 5 minutes, and gives you an opportunity to help shape the future. Learn more here.
  • Participate in the Health-eBrain Study to help advance the cognitive health of caregivers. Learn more here.
  • Participate in a caregiver study being conducted at Xavier University. Learn more here. 

Looking for Support?

Join the UsAgainstAlzheimer’s Facebook Support Community! We have members all over the world who possess a vast amount of experience and who understand what you’re going through. Although each of our stories is unique, we’re bonded by a common experience – Alzheimer’s (or some other form of dementia). The Community provides a safe place to share fears, frustrations, and the moments of joy we all hunger for.  Find us here.

Book Giveaway

Last but not least, click here to enter for a chance to win a copy of Chicken Soup for the Soul: Living With Alzheimer’s and Other Dementias. In the book, you’ll find 101 stories that will inspire, validate, and comfort you. Winner will be drawn Friday, November 11.

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Marilyn, BA (before Alzheimer's)

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