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

FeaturedImageRosalysPeel

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.

From the AlzAuthors Blog: Florrie Munat Shares her Lewy Body Caregiving Story in “Be Brave”

Florrie Canva

Love Remains

By Florrie Munat

“Are you going to write about this?” Chuck asked.

I stopped sorting the pile of laundry that a nursing home aide had just left on his bed and turned to look at my husband. Had we not been married for thirty-six years, I might not have known what he was talking about. But in addition to our long marriage, for the last two years I’d been supplying him with words he could no longer remember. So it took me only a few moments to figure out exactly what he meant.

He was referring to the soul-shattering changes that followed his stroke and Lewy body dementia diagnosis. Those changes had ended the chapter of our marriage when we lived together in equal partnership under one roof, and had begun the current chapter in which Chuck was a nursing home resident and I was his daily visitor. He was asking if I was going to write about those changes.

Back when I worked as a librarian and writer, and Chuck taught high school English and then edited a national classroom newspaper, our married life included some major changes (a cross-country move from Connecticut to Washington) as well as some tragedies (the death of his ex-wife, which led to my adopting his three young children).

But those changes seemed simple compared to this one because I felt alone now. I had become the sole repository of many of our once-shared memories, which left me with a profound sense of loss.

By asking this question, Chuck was giving me permission to document and reflect not only on the cataclysmic events of the past two years, but also on however many years lay ahead of us. His question: “Are you going to write about this?” was also a request. If he’d been able to frame it differently, Chuck might have said, “It’s up to you to tell our story now because you’re the only one who can. And others may be helped by knowing what happened to us.”

Four more years passed before we had to say our final goodbyes, and during that time he continued to remind me, “Are you going to write about this?”

be brave cover imageHis question planted the seed that grew into my memoir, Be Brave: A Wife’s Journey Through Caregiving. He even gave me the title on the day he decided to stop eating and drinking and told me to “be brave.”

With the exception of one chapter about our family’s celebration of the Irish New Year shortly after Chuck’s dementia diagnosis, I wrote the first draft of Be Brave after Chuck died in 2009. Then, with the assistance of an insightful developmental editor and a talented book designer, I spent three years rewriting that draft—and in December 2017, Be Brave was finally published. Kirkus Reviews chose it as one of its Top Indie Books of 2017, calling it “a beautiful, richly panoramic book that should reassure caregivers and delight memoir readers.”

While I worked on Be Brave, I was processing my grief by writing and rewriting our story until I found some meaning in those six nursing home years by placing them in the context of our forty-year marriage. This is not to say I discovered a reason why our lives played out the way they did. That remains an unknowable mystery. And if I could have an intact, healthy Chuck back right now, I’d do it in a heartbeat.

But by writing our story, I did find some consolation embedded in our suffering. And that is that no matter how difficult life became during the caregiving years, our love for one another was never in doubt or in danger. In fact, had we not lived through those last six years, we would not have known the depth and magnitude of our love.

Like all good teachers, Chuck asked questions; he didn’t provide the answers. He wanted me to figure out why “writing about this” would be a good idea. I think he knew his question would lead me to the understanding that even after much is taken, much abides. Now his illness is gone. But our love remains.

florrie munatAbout the Author

Florrie Munat is the author of Be Brave: A Wife’s Journey Through Caregiving (2017), a memoir focusing on the years she was a caregiver for her husband Chuck who suffered from Lewy body dementia. Florrie has published several children’s books, articles, stories, and over 150 young adult book reviews. She’s worked as a reference librarian, English teacher, and university press worker. She lives near Seattle, Washington, where she records audiobooks for the Washington Talking Book & Braille Library, and is writing a YA novel and a memoir about grieving. Learn more about Florrie and Be Brave at www.florriemunat.com.

Connect with Florrie 

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Reposted with permission of AlzAuthors, the global community of authors and readers whose lives have been touched by Alzheimer’s and dementia. I am a co-founder and admin.

From the AlzAuthors Blog: Meet Susan Cushman and Her Memoir “Tangles & Plaques”

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By Susan Cushman

My mother, Effie Johnson, was second generation Alzheimer’s. Her mother, Emma Sue (for whom I was named) died from Alzheimer’s when she was 87 years old in 1986, in the same nursing home in Jackson, Mississippi where my mother would spend the final eight years of her life. I remember watching my mother care for “Mamaw” and wondering what our future might bring.

Twenty years later, in 2006, I moved Mother into assisted living. My father had died of cancer in 1998, leaving Mother alone. After eight years of watching her gradual decline and taking on more of her day-to-day responsibilities, especially her finances, I offered first to move her in with us—which she declined—and second to move her to Memphis to an assisted living home. She begged me to let her stay in Jackson, which I did. This meant I would spend the next ten years making the 400-mile round trip to participate in her caregiving, although she did have help, first in assisted living, and finally in a nursing home. Continue reading

From the AlzAuthors Blog: Robyn Hollingworth and “My Mad Dad: The Diary of an Unraveling Mind”

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By Robyn Hollingworth

About ten years ago my life took a turn. I guess you would say it took a turn for the worse, but really, it just changed. I was in my mid-twenties, living in London and working in fashion. My father  was diagnosed with Alzheimer’s in his early 60s, and within the year, I had moved back to small-town south Wales to help my mum look after him.

His decline was swift, his actions included (at the start) repetition of stories, misplacing items, and accidentally putting on Mum’s cardigan to go to the shops – so far, standard! He had really mellowed and was fairly stoic and philosophical about the illness, often making jokes about his forgetfulness, even though it must have been terrifying for him. Then life took a turn for the “even worse.” Mum was diagnosed with terminal cancer and passed away just three months after I moved home. The effect this had on dad was profound and catastrophic. The seismic shift in the family dynamic tipped him right over the edge. By this point, my older brother was also in residence, but still we couldn’t give dad the level of care he needed. One day he mistook me for a burglar and came at me with a knife. It was at this point that we had to seek more help and Dad went into a care home. Continue reading

From the AlzAuthors Blog: Meet Tracey Lawrence and “Dementia Sucks – A Caregiver’s Journey with Lessons Learned”

Tracey Lawrence Canva

By Tracey S. Lawrence

Dementia SucksOnce upon a time, I was a self-employed graphic arts professional. I designed stuff. I helped clients with their marketing and printing problems. My parents were living it up in southern Florida, and I believed in the Myth of Retirement:

  • Stop working
  • Spend money like you’re drunk
  • Spoil your kids and grandkids
  • Do all the stuff you always dreamed of
  • Eventually, gently, die in your bed at home
  • Cherubs lead you to heaven’s gate
  • Cue heavenly choir

In 2003, I learned about the harsh Reality of Post-Retirement. I went to visit my parents in Florida and realized Dad had been covering up his illnesses. He had a lot of issues. He was 75. My mother, who was 74, was very dependent on him.

After a test gone wrong, my father’s short term memory evaporated, and following many misdiagnoses, I realized he had vascular dementia. He knew it, too, and did not want to live that way. My brother and I supported his wish to avoid prolonging his life. My father died in July 2004 at the age of 76. Continue reading