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 18, 2017

Meet Ann Campanella, author of Motherhood: Lost and Found

By Ann Campanella

In my early 30s, I learned that life can change direction when you least expect it. My husband Joel and I had moved from Houston to North Carolina in order to be closer to my parents. We both had successful careers – he as a businessman and me as a writer and editor. We were looking forward to building a barn for my horse Crimson and excited about starting a family. Life was humming along. Then I had my first miscarriage at the same time my mother began her slow spiral into Alzheimer’s.

Motherhood: Lost and Found tells the story of losing my mother while I was trying to become a mother and suffering through infertility. For almost a decade, I walked a painful path of questioning who my mother was becoming and if I would ever be a mother myself.

Most of my friends had children of their own and spent their days caring for them. I was thrust into the role of caretaker for my parents, while I yearned to focus on my own children. 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.

A long-time horsewoman, I was blessed to have a surrogate family of riding students – young girls who, like me, were in love with horses. I spent afternoons at the barn teaching lessons or riding Crimson.

In the beginning of her illness, my mother 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. I often came home to an empty house because my husband traveled frequently. 

Horses and writing were my solace. Seeing my mother’s anguish was heart wrenching. I wrote poems and poured my emotions into my journals. 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 go to the barn. Some days, I could do no more than lean my head against my horse’s neck. Crimson would stand like a statue absorbing my emotions.

Amazingly, despite this decade of loss, a part of me felt more alive than I’d ever felt before. A sense of compassion for others and appreciation for each moment grew within me as I experienced the ragged edges of life – my mother’s illness and my own miscarriages. And I couldn’t help but be inspired by my mother’s will to live, communicate and love even as her faculties slipped away.

My faith, which had lain dormant for years, became a bigger part of my life. While the losses I experienced were heartbreaking, I also received incredible gifts of grace from my husband, family and friends, moments of intimate connection with my mother and the final miracle of a beautiful daughter.

My writing about Alzheimer’s has been received with more warmth than I could have imagined. After reading my memoir, Former North Carolina Poet Laureate Fred Chappell wrote, “I found this story valuable in an intensely personal way,” and my mentor Tony Abbott, professor Emeritus at Davidson College, said, “Motherhood: Lost and Found has much to teach us all as human beings.” I’m pleased and honored to share my story with others in the hopes of offering them comfort on their journey.

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 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.

@authorAnnC (Twitter)

@anncampanella.author (Facebook)

horse_2nd_time_around (Instagram)



Wednesday, January 11, 2017

Meet Molly LeGrand, dementia advocate, caregiver and blogger


I’ve worked in Long Term Care as an Activities Assistant for ten years. This role has offered a unique perspective on Alzheimer’s as I typically will meet the person after a diagnosis. And just like I would with a new friend or colleague, I begin to get to know them, and I get to know them with Alzheimer’s.  I was fortunate to start my career in the aging services with a mentor dedicated to the teaching of resident’s rights and the promotion of quality of life. These concepts have become my foundation as I grow in the field.

My motivation to write about Alzheimer’s is personal.  This diagnosis can be an extremely emotional time not only for the person but also their family and loved ones. I saw writing as an opportunity to not only join in on a well-established conversation but as a possibility to share my more positive experiences with people living with Alzheimer’s.   I don’t offer medical advice, but I do hope to bring some clarity to an often misunderstood disease.
 
As adults, we are always being told to live in the moment. And when we are with our parent or loved one who has Alzheimer’s this sentiment couldn't be truer.  Caregivers are often left to focus on the medical and physical care of their loved ones. But they deserve to be able to spend time with their loved one and to get to know them during this new phase of their lives.

The feedback I’ve received so far is quite positive, and I think there is a growing collective of families and advocates who realize the same thing, that their loved one is so much more than a medical diagnosis. That although painful, this does not mean that their lives with us have become unimportant nor does it mean we won’t have more special moments with them now.

Some of the most extraordinary people I have met were living with Alzheimer’s. I am continuously humbled by their kindness, their joy, and their constant affection. I write about empathy, relaxation, and validation therapy because with understanding; we will find that our loved ones aren’t “behaving” in a particular way because they have Alzheimer’s, but rather they are trying to communicate with us in a new way.

Comprehending a life without memories is difficult. Memories mean so much to us. They provide us with a sense of self and stand as a reminder of the journey we have taken in this life. And the memories we share with the people closest to us become an intricate piece of our identity. Alzheimer’s may take these memories away from us but, the inability to remember does not mean that it has to redefine who we are nor does it diminish the importance of the many moments  we have collected over the years.

I am always hopeful that a cure will be found, but until that joyous day comes, I will continue to write and promote the upside to aging.

Molly LeGrand has cared for older adults living with dementia and Alzheimer’s for over ten years. She is a recent graduate of the Erickson School, UMBC where she received her M.A. in the Management of Aging Services. Her blog Upside to Aging is dedicated to sharing an alternative and more positive side to aging.

Twitter: https://twitter.com/UpsidetoAging


Blog: https://theupsidetoaging.wordpress.com/

Wednesday, January 4, 2017

Meet Wayne Evans, creator of "Let's Sing From Memory"



I’ve never had a family member diagnosed with Alzheimer’s, nor have I been a caregiver. I didn’t even know much about the disease until recently. But now I have a “new family” of over 20 people with Alzheimer’s, in addition to their loving caregivers.

My “new family” began in March of 2014 when, with a team of 20 volunteers, I started a ministry called “Let’s Sing From Memory.” This is a community outreach social gathering, held twice each month at Christ United Methodist Church in Chattanooga, TN. People with Alzheimer’s or other types of dementia, who are living at home, attend with their caregivers and other family members for fellowship and group singing of familiar old songs and hymns. 

While on a work assignment in England in 2009, I watched a BBC TV documentary called “Wonderland: The Alzheimer’s Choir.” It featured an outreach program called "Singing for the Brain," sponsored by the Alzheimer’s Society in the UK. I was fascinated as couples spoke about the social support and told how singing renewed old memories and even had an effect on their communication after they returned home. The documentary was my introduction to Alzheimer’s Disease and as it touched my heart, I knew that I wanted to find a way to help. 

While searching in vain for similar programs in the USA, I learned that nearly 5.5 million people in this country have Alzheimer's Disease and about 4 million of them are living at home with caregivers who are struggling to do their best every day. So with the successful program in the UK as our inspiration and model, and with support and training from the Alzheimer’s Association in Chattanooga, we started "Let's Sing From Memory." It’s a unique kind of support program where people with dementia and their caregivers can relax and have fun with others who share their circumstances. While their circle of friends and even family may have drifted away, here they can make new friends and enjoy this social experience together. Some participants have said that it is one of the few enjoyable things that they can do anymore as a couple. And many others have said something like; “I wish there had been a program like this when my mother was alive because she loved to sing.”

Sadly, our “new family” has lost 7 members to Alzheimer’s Disease in the past two years. But it continues to grow, as more people are diagnosed and learn about our ministry. My vision is that others will be encouraged to learn from our experience and begin their own outreach ministries. My prayer is that "Let's Sing From Memory" will become recognized as an important resource to improve the quality of life, and bring joy to thousands of people across the country. 


Wayne Evans graduated from Purdue University, served in the US Navy Civil Engineer Corps, and retired from a career in engineering and manufacturing. His passion for helping caregivers, and their loved ones with Alzheimer’s Disease, led him to start the “Let’s Sing From Memory” ministry and now he is focusing on encouraging others to do the same.





Alzheimer’s Association Walk to End Alzheimer’s - Team Page:

Wednesday, December 28, 2016

Meet Paula Spencer Scott, author of "Surviving Alzheimer's: Practical Tips and Soul-Saving Wisdom for Caregivers"


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By Paula Spencer Scott

I knew little about dementia back when my grandmother began using a kitchen pot for a commode. Or when my dad began wailing, "Oh why didn't anyone tell me?" on the day after my mother's funeral, because he'd already forgotten she died.

So how did I wind up writing a guide to Alzheimer's care? I followed the motto I've used for my entire career covering health and family for national media: “Write what you DON’T know.”

That's how you find out.

Back when firstborn balked at toilet training, I was lucky to interview Dr. Benjamin Spock himself. As a contributing editor of Parenting and Baby Talk while I raised four kids, I quizzed gurus-of-the-moment like T. Berry Brazelton, Richard Ferber, Sheila Kitzinger, and Penelope Leach. I tracked down researchers behind the latest studies for my Woman’s Day "Momfidence" column. I wrote a parenting book series for Time Inc. and The Happiest Toddler on the Block with top baby doc Harvey Karp.

It’s what I do: Find the best experts, ask the right questions, listen, and then organize and share their ideas in ways that help laypeople.

By 2007, countless parenting guides had been written, but surprisingly little on practical dementia care. That was the year I became an editor at the first big eldercare website, Caring.com—and coincidentally all heck was breaking loose among my older relatives.

A zillion interviews, articles, and blog posts about Alzheimer's later, plus a zillion encounters with my own family members' memory loss and behavioral changes, I knew I had to collect the best of this collective wisdom in a package that could help the millions of others who are in the same straits.


I wanted to give others the insights into WHY people act the way they do.

I wanted to share truly practical strategies for what to TRY in response.

And because I knew how long on stress and short on time that family caregivers are, I wanted to present all this in a format that was accessible and quick-to-read.

Turning intentions into manuscript is one thing. Then you cross your fingers and hope it really does help someone else.

And…you hear from a dementia-care operator who calls the book her new hand-out guide for clients, "every bit as good, if not better, than The 36-Hour Day, long considered the Bible of dementia care."

You get emails asking to reprint parts in newsletters put out by respected Alzheimer's centers or hospice programs.

You give a talk and a shy woman comes up to say, "Thank you for saying it's okay to be resentful sometimes, I'm just a stressed-out daughter and I get so tired of everybody calling me a saint."

Alzheimer's and other dementias don't just take down one person. They can take down a whole family. That's why every 5-star Amazon review makes me equal parts thrilled and melancholy. So many families!

Each reader interaction reminds me how wide and virulent and sucky this terrible condition is. And how anything each of us can do to help one another is like throwing a life preserver.

I toss my life preservers in tribute to my dad, to my Gram, to my mothers-in-law (plural, as I've remarried and they both had dementia). My 95-year-old father-in-law lives with us now and has developed new dementia symptoms, things I'd written about previously but hadn't actually experienced.

So now I'm revising Surviving Alzheimer's to update it and include even more stories from the best minds in dementia caregiving, from the academics and doctors to the social workers, psychologists, and countless family caregivers like myself. I love the people I've met and—in perhaps the only silver lining this disease brings—been endlessly inspired by their soul-saving wisdom.

# #


About the Author: Paula Spencer Scott is the author of SURVIVING ALZHEIMER'S: Practical Tips and Soul-Saving Wisdom for Caregivers, and has written or co-authored 12 other books on family and health. Currently the content chief of Kinstantly, her articles have appeared in AARP Bulletin, Parade, Caring.com, Woman's Day, WebMD, Newsweek, Next Avenue, Parenting, and elsewhere. She's a Journalists in Aging fellow of the Gerontological Society of America/New America Media.



Wednesday, December 21, 2016

Meet Sharleen Scott, author of Tangles


Her name was Judy, and I married her son.

She was a Depression-era child who grew up in the Pacific Northwest forests, traveling with her grandfather’s logging company. She was an outdoorswoman who loved fishing, hunting, and hosting friends and family at her Cascade mountain cabin. She married Paul at age seventeen but was separated from him soon after by the bombing of Pearl Harbor. While he operated the radio aboard a PT boat supply ship in the Pacific, she was the embodiment of Rosie the Riveter, making airplane wings in Spokane and welding in the Bremerton shipyards. When he was called up again during the Korean conflict, she packed their belongings in the car and shipped it to Adak, Alaska, on a ferry so she and her daughter could be with him for the duration. After the war, their son was born, and the family was complete. 

She was a Campfire Girls leader, a women’s club member, and active in the Grange. She was a crew supervisor in a fruit-packing warehouse, and when she retired, she began to forget things. She’d laugh and say, “I’m not working anymore. I don’t need to think.” The memory loss escalated and ultimately the diagnosis was Alzheimer’s disease. It was the late ’90s, and we didn’t know much about the disease other than Ronald Reagan had it.

Paul embraced the role of caregiver, managing every facet of Judy’s life, masking the extent of her decline, until he was diagnosed with inoperable prostate cancer. We took on the caregiving responsibility for both, balancing jobs, a business, and our two young children. When Paul broke his hip and passed away shortly after surgery, she couldn’t remember her husband had died, and her grief returned with the same intensity each time we had to tell her he was gone.

My husband and I joined a community of people isolated by the task of caring for a loved one and needing more information. We found ourselves in impromptu mini-support-group meetings in grocery stores, movie theater lobbies, and restaurant parking lots. I noticed a similar theme in these conversations—no one knew what to expect with this disease. No one anticipated the emotional and physical toll of caring for a stricken loved one. 

The idea for Tangles was born.

The Tangles story and its characters are fictional. The Alzheimer’s behavior displayed by Lois McKinnon is not. Though I wrote the rough draft as we lived it, I’m not a memoirist. I’d already written three romantic suspense novels (two have now been published) and the blending of fact with fiction was the logical path for me as a fiction writer. I wanted readers to experience Alzheimer’s disease from the characters’ viewpoints, to come away from the story with a sense of what to expect, and maybe not be as blindsided by this disease as we’d been. 

The initial story question came about in a conversation with my husband. He was going crazy from the stress. He loved his parents dearly, but caring for them in this way was difficult. I asked him, “As hard as this is for you, can you imagine being in this position with a family member you couldn’t get along with?” With that question posed, the McKinnons—Joe, Lois, and Logan—were created. First, I needed a reason for the family disharmony, and the mystery of Lois’ life came into play. I needed a vehicle to relay the information, so Logan found Lois’ journals. I needed a way to explain Alzheimer’s disease without resorting to information blocks, so Max, the linebacker-sized home-care nurse, was introduced. I needed a way for the family to heal, and introduced Nate. And through it all is Logan’s character arc, from the son who felt his mother didn’t care for him and had given up on a relationship with her, to his understanding and forgiveness.

And in the end, I feel I accomplished my mission to engage readers while showing the realities of Alzheimer’s disease. Many readers have contacted me and said they were so caught up in the story, they forgot they were learning about Alzheimer’s disease. They said they were moved by it. 

I wrote Tangles for Judy, who passed away in 2007. She had a penchant for helping people throughout her life and loved a good story. I believe she would approve.

Social media links:

Amazon author page http://www.amazon.com/-/e/B00KQY5KNW  

Wednesday, December 14, 2016

Claudia Rumwell and The Senior Care Organizer



by Claudia Rumwell

"Caregiving is not for wimps."

Mom had been falling much too often. Then I heard from a visiting relative that in order to safely come up the stairs from the basement of their home, Mom and Dad had to sit on a stair and scoot up one at a time.

Answers needed.

Mom was diagnosed with Parkinson's. Dad was fairly stable with his previous stroke. But it was time to make some changes.

"Ducks in a Row?" Did I have my "ducks in a row" when it came to starting the process of taking care of my parents' needs? I did not. Did they? No. And you might think that a nurse would know exactly what to do, but that wasn't the case. I learned as I went along.

And I learned a lot. I remember collecting pages of information which held answers to questions that I had asked. I learned about senior care professionals who can help find living locations, or guide you in care management. I found out that my parents didn't have the needed documents e.g., health care directive; power of attorney. And I had to search for important papers that were well hidden in their home.

The ten years of "hands-on" experience as a parent caregiver was the main impetus and inspiration for creation of The Senior Care Organizer, which is a "hands-on" guide for collecting and organizing the necessary information to manage senior adult care. My goal was to provide a resource for others who are or would be going through my experience. I thought…..Why should they have to "reinvent the wheel?"

My parents may not have had Alzheimer's, although in her last year of life, Mom did acquire the Parkinson's form of dementia; but they are good examples of the importance of getting things in order as soon as possible. Especially once things change or the diagnosis has been made.

The Senior Care Organizer will help you, as a caregiver, do that very thing. It provides an easy method and plan to get organized, identify resources, learn about what to do first, how to do it, and where to go to find specific help. It comes in a 3 ring Notebook format or in a downloadable interactive PDF format that can be saved and revised on your computer. You can see a Preview of some of the book's contents on the website, or with the Look Inside feature on Amazon.

So whatever caregiving challenges may be ahead, don't forget there are others who can help you and resources to support you.

"Hardships often prepare ordinary people for an extraordinary destiny." C.S. Lewis

About the Author
Claudia Rumwell is a registered nurse, educator, author and patient advocate who has worked with seniors for over 40 years. In 2008, as a result of advocating for her parent's changing health care needs for 10+ years, she shifted her nursing focus to the area of senior care. In addition to consulting, she enjoys providing workshops that focus on senior care topics. In addition to updating The Senior Care Organizer, currently in its 4th edition, she updates the Links/Resources and publishes monthly educational articles in the Helpful Articles section of her website, and posts articles and other links on Facebook. You can also find her on Twitter.

Monday, December 12, 2016

12 Reasons to Gift a Book from the AlzAuthors Bookstore

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By Marianne Sciucco

Most likely, you know someone caring for a loved one with Alzheimer's or dementia. With 5.4 million Americans affected, this disease affects the lives of so many of our families, friends, neighbors, and coworkers. We may feel inclined to do something, to help, but may not know what to do, or how to do it, or when.

The Christmas season provides us with the perfect opportunity to reach out to provide support, caring, understanding, and of course a meaningful gift. A book can be at the top of that list, because caregivers are often thirsting for knowledge, longing for support, or searching for guidance to help them get through their challenging days. What better way to learn than through the experiences and stories of others?

And don't forget that, in addition to the caregivers, many others are in need of Alzheimer's resources, such as your physician or nurse, a care facility in your neighborhood, the visiting nurse or home care agency staff, and your town or school's lending library.

Here are twelve reasons to visit the AlzAuthors Bookstore for the perfect present:
1. You will not find a more easily navigable assortment of books on the Alzheimer's experience anywhere else.
2. Every book in our bookstore was vetted by the founders of AlzAuthors, all of whom have experience as caregivers. Each was carefully evaluated for content and quality prior to inclusion. You can be assured that you are purchasing a quality book.
3. Most of the books are the personal stories of their authors, or have arisen out of deeply personal experience with the disease. The stories contain truth, and are often heart-wrenching, sometimes heartbreaking. They are compelling, believable, and honest.
4. The books are available in a variety of formats - print, digital, audio - which will satisfy any reader.
5. The titles cover multiple genres: memoir, fiction (including young adult and children's), and nonfiction. There's something for everyone. Our categories: Caring for Parents or Grandparents; Caring for Spouses or Partners; Living with Alzheimer’s/Dementia; Books for Children and Teens; and Helpful Information For Caregivers.
6. The books are easily purchased via Amazon. Please visit an individual book's page on AlzAuthors to find its availability on iBooks, Kobo, Barnes and Noble, and other retailers.
7. A book is a gift that can be used again and again. These resources can be read and reread, and consulted at any time.
8. A book can be regifted, shared with others who may need its wisdom and know-how.
9. There's a perfect price for every shopper. Most ebooks start at just 2.99, and paperbacks run around $10-20.
10. Books are easy to wrap, especially ebooks.
11. The small ones make excellent stocking stuffers.
12. You can support your favorite books and authors by sharing them with others.


AlzAuthors is an Amazon Affiliate and will receive a small commission from books purchased through our bookstore. These funds are used to cover costs associated with running AlzAuthors and do not affect the actual author's royalties or cost the buyer additional fees.