AlzAuthor Rosalys Peel Shares her Alzheimer’s Caregiver Story in “Mike & Me”

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By Rosalys Peel

Every two minutes someone in America is diagnosed with Alzheimer’s. Most will face this discouraging illness with their wife, husband or partner at their side. And yet the typical “Alzheimer’s couple” has no idea how to make the most of what lies ahead.

This is the predicament my loving husband Michael and I found ourselves in when we discovered that Mike had been diagnosed with Alzheimer’s. Over 35-plus years of marriage we had always dealt with problems together. But now we were advised to start preparing ourselves for the day when Mike would surely be moved from our home to an outside care facility. We simply weren’t ready to accept that.

“I don’t want to leave you and our home,” Mike told me—and so we made a deal. Despite all the scary stories we were hearing about this disease we decided to stand up to Alzheimer’s and defy the statistics as long as possible. Together we would go right on pursuing our hopes and dreams as husband and wife, confronting the disease together in our own home, and living the fullest life possible…for as long as possible.

Mike&Me CoverWriting a book was the last thing on my mind at that time, but I did start keeping a journal. At first I was just trying to record new information and treatment advice from our doctor. But it turned out that journaling became a very empowering and comforting companion for me over the entire nine and a half years that Mike and I dealt with his Alzheimer’s.

My journal was a safe place where I could give words to my worries, concerns and fears. It’s where I logged the frustrations and setbacks that Mike and I encountered, but also where I recorded and celebrated our many victories, large and small. Day by day, my journal chronicled the astonishing power of mutual love, patience, compassion and stay-at-home care. Over time I became convinced that other couples and caregivers might be able to benefit from some of the new approaches Mike and I were learning.

Despite Mike’s illness we eventually exceeded virtually every typical Alzheimer’s expectation. Together, we travelled to several countries, helped care for our granddaughter, maintained our romance, kept Mike on his feet, celebrated every milestone, and found new ways to communicate with our friends, family and each other. We also saved countess thousands of dollars by caring for Mike in the familiar surroundings of our own home right up to the very end.

Mike eventually died, but he died as we all wish to die—with dignity and grace. And not before we had enjoyed nearly 10 full years of life, love and, yes, laughter together.

Gradually, there was the birth of a new idea in me. Looking back to when Mike was first diagnosed I could remember how I had searched the bookshelves in vain for a book that would help couples like Mike and me navigate the Alzheimer’s journey together. Later, I had a chance meeting with an experienced and caring writer who gave me this quote by author Toni Morrison: “If there’s a book that you want to read, but it hasn’t been written yet, then you must write it.”

I took that quote to heart and set out to write Mike & Me as my gift to other Alzheimer’s couples and their families who are just now starting their journey. While the word Alzheimer’s usually triggers pessimistic feelings, Mike & Me is an optimistic book, and for good reason.  It chronicles the changing face of home care among Alzheimer’s couples. And it shows how the astonishing power of love, patience, compassion and stay-at-home care can help Alzheimer’s patients defy the usual statistics and live a longer, fuller, happier life despite this discouraging disease.

Writing this book has been a work of heart, and I know Mike would be happy that what we learned together on our Alzheimer’s journey is now helping other couples, families and caregivers.

About the AuthorPeel_Rosalys_396_culledb

Rosalys Peel is a Registered Nurse, a Lamaze-certified childbirth educator, and a Gottman-certified couples’ relationship facilitator. She teaches classes at Seattle’s prestigious Swedish Medical Center and has been featured on NPR and The Today Show. She remains a tireless teacher, writer and speaker, and a caring advocate for Alzheimer’s couples, families and caregivers everywhere.

 In more good news, Mike and Me has been named a Finalist in the 21st annual Foreword INDIES “Book of the Year Awards.”

Connect with Rosalys Peel

WEBSITE  www.MikeAndMeBook.com

FACEBOOK.  https://www.facebook.com/mikeandmebook/

TWITTER:  @PeelRosalys

EMAIL:  Rosalys@bainbridge.net

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For more vetted books about Alzheimer’s and dementia please visit the AlzAuthors Bookstore. 

Reprinted with permission from AlzAuthors, the global community of writers sharing their personal Alzheimer’s and dementia stories to light the way for others.

The Writing Life: Write What You Know and Then Some – Researching My Young Adult Novel “Swim Season”

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My daughter had been swimming competitively for five years when I came up with the idea to write a novel about girls’ varsity swimming. Sitting on those cold, hard bleachers season after season gave me more than a sore you-know-what. It sparked my imagination, creating a story line and cast of characters that would show in written form what high school swimming is like for these girls. As I wrote the story, they were always at the heart of it. I wrote it for them. And I wanted it to be as accurate and realistic as possible.

In many ways, writing Swim Season was natural and easy. Through many autumns, I’d watched my daughter and her team swim their hearts out, beside parents rooting for their own swimmers. In the beginning, I knew next to nothing about the sport, about swim meets. But as the years went on, I learned.

I learned simple things, like the order of events. Try finding your kid on a pool deck swarming with dozens of young swimmers in caps and goggles when you’re not sure which event it is, or whether your child is swimming in it or not. Impossible.

I chaperoned the waiting rooms where dozens of youngsters waited for their next event. Try to keep all that adrenaline in check.

I volunteered to time the races, and stood at the blocks, race after race, helping to make things run smoothly, making sure the right kid was in the right lane.

I helped out at the concession stand, serving up bagels and cream cheese.

I was involved with the fundraising activities, Picture Day, and put together the program for Senior Night for a number of years.

I went to 99 percent of the meets with my husband (we missed one when it was an hour away from our home on a week night.)

Most of my daughters’ friends were swimmers, so I got to know several of them up close and personal. They were an intelligent, ambitious, fantastic set of young women. When my book was criticized by a critique partner because the characters seemed “too smart,” I responded with, “Well, those are the girls I know.” The team had the highest GPA of all athletic teams at the high school year after year. Yes, swimmers are smart.

I took advantage of coaches I knew personally (and some I didn’t) to pick their brains, try out the story’s premise for believability, and tweak the details.

Early in the process, I sent out a tweet on Twitter, asking swimmers to complete a questionnaire for a new book about varsity swimming. Almost a dozen young swimmers – girls and boys –  responded, and we started dialogues that provided great background for my story. Some of them went on to become beta readers. All of them were thrilled at the idea of a book about them, about their sport.

As a reader, when the answers weren’t so simple I resorted to books. Michael Phelps’ biography No Limits: The Will to Succeed, with Alan Abrahamson, was more than worth its cost. Likewise, Amanda Beard’s memoir In the Water They Can’t See You Cry gave me insight into how to build an Olympic silver medalist. Instruction books, such as Terry Laughlin’s Total Immersion, with John Delves, and Tracey McFarlane’s Mirande’s Championship Swimming with Kathlene Bissell, taught me the fine-tuning of technique. The Champion’s Mind: How Great Athletes Think, Train, and Thrive, by Jim Afremow, PhD, was instrumental in creating my heroine Aerin’s mental game. For inspiration I turned to Swimmers: Courage and Triumph by Larry Thomson.

Then there was the time when I decided to swim the race at the heart of my story. For a while I was taking Aquasize classes at my local YMCA. One day I got the idea to try to swim 500 yards. I wanted to see if I could do it, how long it would take, and how I would feel during and afterwards. I have never swum competitively, although I have always loved to swim and am capable of doing the freestyle. My first 500 clocked in at 30 minutes. I stopped after every length to catch my breath and chat with the other ladies in the Aquasize class. I kept at it, though, and after a few weeks managed to complete the 500 in 16 minutes, which was phenomenal for me. Of course, the time to beat in Swim Season is 4:52.50, which, for me, was in never never land. But, as a middle-aged woman with below-average fitness I was proud of my achievement. In the end, unfortunately, it exacerbated my thoracic outlet syndrome and I had to give it up.

Writing Swim Season was an endeavor born of many resources, personal and professional. It’s recommended that we write what we know. I knew a lot about competitive swimming as a Swim Mom, but that was not enough to compose this story. I needed to reach out to many others – swimmers, coaches, parents, Olympians, and a psychologist – to nail the details. All of this, I believe, leads to a more credible, believable story with depth.

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Swim Season is available in paperback. Kindle, and audiobook on Amazon.

This post was originally published on Laurel’s Leaves.

With Recipes, Poetry, and Prose Author Miriam Green Shares her Alzheimer’s Story in “The Lost Kitchen”

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By Miriam Green

When my mom, Naomi, was first diagnosed with Alzheimer’s I felt relieved. The doctors had finally acknowledged what our family had surmised for almost a year—Mom was losing her memory. Ok, I thought, what now?

Little in our lives changed at first. Mom still rattled around in her kitchen, she was still an avid music lover, conversationalist, and sweet companion. She could maintain her household, and even stay by herself in the evenings when my dad, Jack, was busy. But the signs were everywhere.

There was the day she tried to unlock the front door to her apartment with the wrong key. It didn’t occur to her that she should try another one, or even ask for help. I was waiting patiently on the other side as she jammed that key into the door over and over, swearing in language I had never in my life heard her utter. Daddy rushed from the shower, thinking she’d hurt herself with all the screams. It took a while to calm her down.

What did change dramatically in my life was a commitment I made to visit my parents once a week. I traveled 2½ hours each way by public transportation to be with them. Mostly, I was there for Mom. Those were wonderful mornings. We would do all manner of activities together, ambling around the city, drinking coffee, and enjoying the sunshine. I used those visits to organize my parents’ kitchen and cook them food for the week.

cover 7b Top to Bottom FadeI was privy to Mom’s anxiety over her waning memory. I held her as she cried bitter tears and told me she felt confused. It was the first indication that our roles would soon be reversed, that I was losing my mom by degrees, that the only way forward was a painful decline that inevitably led to death.

It’s been more than seven years now. I’ve learned a few things along the way— to avoid questions in my conversations with Mom; how a person’s gait can define their ill health; that front-closing bras are an Alzheimer’s intimate friend; and how to judiciously use her memory loss for our gain.

I don’t think we can ever be prepared for the strange turns and curves life throws us, but I do know that it helps me to write about them. First came the poetry. Then, what was initially a project I started with my dad as a humorous initiation into the world of cooking and caring for a spouse with Alzheimer’s—we called it “The Man’s Emergency Cookbook”—eventually morphed into its current composition. Thus were born my cookbook and my weekly blog. I didn’t need to be alone in my frustrations, fears and struggles. I could connect with the community of Alzheimer’s patients, their families and caregivers who were only a short click away.

And through it all, I cooked. I took what Mom had taught me when she was still active in the kitchen and used that as a basis to experiment with easy recipes that fed my spiritual and emotional hunger. My book, The Lost Kitchen: Reflections and Recipes from an Alzheimer’s Caregiver, is a combination of recipes, poetry, and prose about my family and how we have shared the demands of Mom’s Alzheimer’s.

About the Author

Green, Miriam headshotMiriam Green writes a weekly blog, The Lost Kitchen,  featuring anecdotes about her mother’s Alzheimer’s and related recipes. Her blog also appears on the ALZ Blog from the Alzheimer’s Association.  Her poetry has been published in several journals, including Poet Lore, The Prose Poem Project, Ilanot Review, The Barefoot Review, and Poetica Magazine. Her poem, “Mercy of a Full Womb,” won the 2014 Jewish Literary Journal’s 1st anniversary competition. Her poem, “Questions My Mother Asked, Answers My Father Gave Her,” won the 2013 Reuben Rose Poetry prize. She holds an MA in Creative Writing from Bar Ilan University, and a BA from Oberlin College. Miriam is a 20-year resident of Israel, and a mother of three. You can find Miriam on Facebook and Twitter at @thelostkichen.

 

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