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

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.

That's ultimately why I wrote Surviving Alzheimer’s: Practical Tips and Soul-Saving Wisdom for Caregivers.

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.

Twitter: @ https://twitter.com/PSpencerScott

Book website: http://www.survivingalzheimersbook.com/

Facebook: https://www.facebook.com/survivingalz/

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:

Web site www.sharleenscott.com

Facebook http://www.facebook.com/Sharleen-Scott-author-670018299725749

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

Twitter http://twitter.com/sharleenscott5

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.

12 Reasons to Gift a Book from the AlzAuthors Bookstore

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.

Visit the AlzAuthors Bookstore.

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.

Robin Perini, Author of Romance, Mystery, and Thriller Novels and Creator of the 1Memory Challenge

 

By Robin Perini

Looking back, it all started one Christmas morning with a seemingly minor event. Unlike every Christmas in the past, that morning my mom couldn’t remember which presents belonged to whom under the tree without looking at the tags. I didn’t know it then, but it would be the beginning of an over fifteen-year journey that still hasn’t ended.

My mother suffers from Alzheimer’s disease.

I won’t explain how long the illness took to diagnose, how many years it took to know what was wrong, or how much false hope we were given with phrases like Mild Cognitive Impairment. That information is available on the blog I’m writing with my dad, Moments of Clarity.

I will say that it’s a horrible disease. My mother is only seventy-six years old. She and my dad should be enjoying retirement, traveling, playing with the grandkids. But those dreams and expectations were not to be, and over the last decade my family has learned two very important truths:

As your loved one’s brain is destroyed, whatever its manifestations, it’s the disease, not them.

Be thankful and appreciative of what you still have, not resentful for what you have lost—and continue to lose.

Those two tenets have helped us through this difficult journey. In fact, my mom’s journey—our family’s journey—is what inspired my latest book, FORGOTTEN SECRETS. It's not a book about Alzheimer’s. It's a romantic mystery/thriller novel revolving around a kidnapping. However, the only witness is the victim’s grandmother who has Alzheimer’s disease.

My hope for this story is it will entertain while raising awareness and understanding for families battling this disease. In addition, I am donating 10% of the royalties I receive from Forgotten Secrets to the Alzheimer’s Association, an organization that has been a God-send to me and my family in so many ways. Apart from the education and personal support, they were the ones who helped my family realize—finally—that we are not alone. The Alzheimer’s Association’s vision is a world without Alzheimer’s. I pray for that day.

I have never been more nervous for a book to be released. FORGOTTEN SECRETS came out on July 19, 2016 and I didn’t know what to expect. Truth be told, I didn’t really anticipate the response I’ve received. I have been unbelievably moved by the words of my readers. So many have written, thanking me for bringing awareness and for showing a slice of truth about Alzheimer’s. Some have the disease; some are caregivers; some have lost a loved one; some have never known anyone with Alzheimer’s but have thanked me for showing them a small window into the world of this difficult illness. I have been so gratified and encouraged. Sometimes I wonder if this moment in time is why I became a writer in the first place.

While writing FORGOTTEN SECRETS, all I ever wanted was to do my mother justice. I pray I have done so, but once the book was completed, I realized I wanted to do more, something that would impact more people, so I also created the 1Memory Challenge (#1Memory Challenge). The reason: I so wish that I could talk to my mom again, share memories, ask her questions about her life as a child, growing up, as a young woman. I can’t do that, but I can share my memories with loved ones. I can record them so they won’t be lost. And I can encourage others to do the same. Because once those memories fade (whatever the cause), they are gone.

I decided to challenge friends and family to do the following:

1) Record a memory through a video, photo and/or writing a story and post it on social media.

2) Challenge 2-5 others to share a memory and tag them.

3) Give them 24 hours to accomplish the challenge or to donate to the Alzheimer’s Association (or another organization).

The #1MemoryChallenge was a success for me personally because my dad began recording videos for the grandkids, to give them advice and wisdom. For our family, those videos will always be priceless. He will also be recording a few videos for my mom. So they will learn to know the amazing person their grandmother is.

So, to those of you reading this, I may share my heart, my memories, my vision, my soul through my fiction writing…but your memories can do the same. So, I want to challenge each and every one of you to take the #1MemoryChallenge. For yourself and your loved ones. Share your memories. Pass them on. Consider donating to the cause. And hold your loved ones tight.

Hopefully someday, none of us will have to worry about losing or longing for those forgotten secrets.

Links to more information and some memories shared:

#1MemoryChallenge Website 

FACEBOOK 

TWITTER 

PINTEREST 

INSTAGRAM

About Robin Perini

International and Publisher’s Weekly bestselling and award-winning author Robin Perini is devoted to giving her readers fast-paced, high-stakes adventures with a love story sure to melt their hearts. A RITA Award finalist, she sold fourteen titles to publishers in less than two years after winning the prestigious Romance Writers of America Golden Heart Award in 2011. An analyst for an advanced technology corporation, she is also a nationally acclaimed writing instructor and enjoys small-bore rifle silhouette shooting. As a result of her mother’s battle with Alzheimer’s Disease, Robin has become an advocate. She is donating 10% of her royalties received from her novel, FORGOTTEN SECRETS, to the Alzheimer’s Association. In addition, she started the 1 Memory Challenge, a challenge to encourage others to share memories and donate to the Alzheimer’s Association, whose vision is a world without Alzheimer’s. You can learn more and connect with her by visiting her website at www.robinperini.com.