Welcome back, Wendy Mitchell, author of “Somebody I Used To Know”

Republished with permission from AlzAuthors.com

By Wendy Mitchell

My name is Wendy Mitchell and I was diagnosed with Young Onset Dementia on the 31st July 2014. Who would have thought, on that day of diagnosis, over 3 years ago, that I would now be publishing a book, Somebody I Used to Know? But, on the other hand, why not?

When people hear the word dementia, they often think of the end stages. Well, it has to have a beginning and a middle and I’m someone heading for 4 years into living with the condition. We all had talents before a diagnosis, we don’t suddenly lose all those talents overnight the day we receive that diagnosis. We simply have to adapt them to use in different ways, and with support can often achieve something remarkable.

I wanted to write this book to show people how there is a life to be lived after a devastating diagnosis. Yes, mine was of dementia, but it could apply to any crisis or life changing moment. I wanted to show that with the right positive attitude and support, you can adapt and live a good, if not different, life. So yes, my book should be read by everyone who is affected by dementia or healthcare professionals in the field, but moreover, it should be read by anyone to show them how living in the moment can enhance anyone’s life.

The feedback since the publication of my book in the UK has been overwhelming and humbling. Many people have been touched by my openness. I used to be an extremely private person, but was so shocked at the lack of awareness and lack of understanding that I’ll now shout from the rooftops at every opportunity. My book has enabled me to reach so many more people. Family members have often told me how they’re ashamed to admit their loved one has dementia. My response is to say, “we have a complex brain disease, why on earth should anyone be ashamed?” No one should have to face dementia on their own, least of all through shame or stigma.

I often write of outwitting and outmaneuvering dementia, almost relishing the challenge of the fight. People so often dwell on the losses, on what the future may hold, or on the negatives. Why not instead concentrate on what you CAN still do or what you CAN do, if only differently than before.

Moreover, why dwell on the future? We have no control over what dementia will strip away from us in the future, so why dwell on the matter? Instead, focus on enjoying what you have today. The future will come soon enough and a day spent regretting and in sadness is a day of happiness wasted. I hope you gain knowledge about dementia, but also knowledge about life from reading my book, Somebody I Used to Know.

Bio:

I was diagnosed with Young Onset Dementia on the 31st July 2014 at the age of 58 years young. I might not have much of a short-term memory but that’s one date I’ll never forget.

I have 2 daughters and live happily in Yorkshire.

I retired early from the NHS, having worked as a non-clinical team leader for 20 years.

Post diagnosis, I was shocked by the lack of awareness, both in the community and clinical world, so I now spend all my time travelling around the country raising awareness and encouraging others to embrace my passion for research.

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Website/Blog: www.whichmeamitoday.wordpress.com

Twitter: @WendyPMitchell

Meet Miki Klocke, Photographer and Author of “Alzheimer’s: Beyond Caregiving”

Republished with permission from AlzAuthors.com

By Miki Klocke

My Mom was diagnosed with Alzheimer’s when she was 56 years old and still working two jobs. I was 33 and became her full-time caregiver. A few years into our journey, when Mom still occasionally had coherent moments, we talked about how difficult this path is and what limited resources there were to help us. There wasn’t anyone for us to talk to. During that conversation I promised Mom that I would share our story so that it could help others. I had no clue how I would accomplish that as I had a degree in photography and limited writing experience.

Many very overwhelming years passed where that promise remained a passing thought. During what would be Mom’s fourth year on hospice, I finally had the time to get serious about keeping my promise. I wrote, I shared, I rewrote many, many times. Photography has always been a part of my life, a lifeline, in fact, during the difficult years of caregiving. Through encouragement, I was led to combine my photography and writing into a visual and poetic expression of the trials and tribulations of caregiving that became Alzheimer’s: Beyond Caregiving.

One of the photos in Miki Klocke’s book.

Through 17 years of caregiving, my greatest source of support came from Caregiver Support groups offered by the Alzheimer’s Association. Hearing the stories of others who had gone before me and those navigating a similar path gave me hope and strength to continue on. They also gave me the permission I needed to express my fears, shed tears and verbalize the anger and shame at not being able to do enough. I want to make not only Alzheimer’s, but also caregiving, a topic we can all freely talk about.

The stigma and misunderstandings of both Alzheimer’s and caregiving open us up to misguided suggestions that can hurt more than help. When you are a full-time caregiver, you have little to no time for yourself. Well-meaning friends and acquaintances often say to “take care of yourself first.” I found it hard not to cry, scream and/or laugh every time I heard this advice. I grew to despise those words. They made me feel more alone – proof that no one understood what it was like caring for Mom.

However, I also grew to understand that taking time doesn’t have to be a physical act as I first imagined, but it can be a mental act. My photography often shows what can seem to some a lonely place, but to others a place of solace. Our perceptions can be foggy in the trenches of caregiving. You can feel trapped by circumstances, but they can also be a place of introspection and an opportunity for a connection beyond words that is simply love.

My time of reflection led me to discover that we never really have control. Therefore, I was able to not only accept – but embrace – the changes that are inevitable in Alzheimer’s. The minute-by-minute changes, as well as the daily, weekly and monthly changes. And the big change, the one that Alzheimer’s always leads to, because there is no cure.

But there is, if not a cure for the loneliness of caregiving, at least good medicine — sharing our stories openly with each other, without censure or shame. There’s a whole community out there waiting to talk about the grief, the pain and the hardships that are part of this devastating journey.

When I began Alzheimer’s: Beyond Caregiving, I knew I wasn’t alone in my challenges and concerns of caregiving, but the greatest validation came in this comment: “. . . this book is like sitting down with a friend who knows what it’s like.” I couldn’t have put into words what I wanted the take away of this book to be, but that is it.

About the Author:

Miki Klocke is a photographer and author. Her images mirror what is going on in her heart and soul. During her 17 years of taking care of her mom, her images reflect a lonely time, an introspective time, a longing for peace and solitude . . .

www.MikiKlocke.com

Instagram: @AlzStories

Alzheimers: Beyond Caregiving is available on Amazon.

Meet Vicki Tapia, AlzAuthors Admin and Author of “Somebody Stole My Iron”

Reposted with permission from AlzAuthors.com

By Vicki Tapia

In 2004, both my parents were diagnosed with dementia, Dad with Parkinson’s-related dementia and Mom with moderate Alzheimer’s disease. Even though symptoms had become increasingly obvious by the time of diagnosis, hearing the words dementia and Alzheimer’s disease really knocked the wind out of my sails. We now faced the stark reality of terminal diagnoses.

Trained as a teacher and looking for answers, I sought information to describe what to expect and how to best navigate what lay ahead. I searched for books written from the family caregiver’s perspective, but found few, and none that actually proved very helpful. I could cry on my husband’s shoulder or unload my anxiety on a close friend only so often. In a deviation from my usual handwritten journals, I began tapping away at my computer keyboard on a near daily basis.

When I began writing about dementia, it was merely a vehicle to help me cope with family caregiving. My diary became the place I sought solace at the end of a long day. It didn’t talk back or demand anything of me. However, after a year or so of writing, an awareness slowly took shape inside my brain and I realized I was in the midst of writing a book. I began to recall memories of Mom’s dementia-like behavior from years previous and it amazed me how many recollections remained vivid in my mind. Scene after scene from both the past and present came alive on the computer screen.

I continued to write and refine my memoir over the next several years. All told, nine years passed from the time I started to write and publication of Somebody Stole My Iron. This includes ignoring the manuscript for nearly three years during a fierce internal battle that raged within me between sharing the story or protecting our family’s privacy.

During that time, parents of three different friends received an Alzheimer’s diagnosis, so I offered each of these friends my manuscript. All gave positive feedback and encouraged me to seek publication. I finally realized that despite my trepidation, someone needed to speak up and be the written voice I couldn’t find during my parent’s journey.

Publication has brought me bountiful blessings far beyond sharing our family’s story with others. I have been fortunate to have had the opportunity to speak about dementia awareness in many different venues in my city and the surrounding area. I have encountered readers from around the world who have offered feedback that my shared lessons have also been helpful for them. Through social media, I have become friends with authors of other books about dementia. In 2015, Jean Lee from Ohio and Marianne Sciucco from New York joined together with me to cross-promote our books. And from this collaboration sprung AlzAuthors. There is no way I could have predicted that writing a diary about my struggles to cope with my parents’ dementia would blossom into friendships across the globe and lead me on a mission to educate and provide resources for others affected in some way by dementia. I truly believe all the AlzAuthors are part of a wave that will help to end the stigma associated with this devastating disease.

About the author:

After teaching somewhere around 10,000 mother/baby pairs the art of breastfeeding, Vicki found her energies redirected to the other end of life, after both parents were diagnosed with dementia. A diary written to help her cope with caregiving morphed into Somebody Stole My Iron: A Family Memoir of Dementia. This memoir was a finalist in the 2015 High Plains Book Awards.

Vicki’s second book, Maggie: A Journey of Love, Loss and Survival, is a tribute to the intrepid life of her great-grandmother, written in remembrance and recognition of a time when women had few rights. In a different time, Maggie might have been part of the #MeToo movement.

A co-founder of AlzAuthors, Vicki wishes every dementia caregiver had access to the AlzAuthors Bookstore and looks forward to the day when Alzheimer’s is no more. When not busy writing, you are apt this native Montanan out walking her dog or off on an adventure with her husband on their tandem bicycle.

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Meet Jean Lee, AlzAuthors Admin and Author of "Alzheimer's Daughter"

Published with permission from AlzAuthors.com

by Jean Lee

Both of my parents were diagnosed with Alzheimer’s on the same day. They were in their mid-eighties. I was the hometown daughter, working full time as a third grade teacher. My only sibling lived 1,000 miles away.

That sounds like a recipe for disaster, but my far-away sister was my greatest support­­­­‑‑my therapist by phone. Early on, about five years before our parents’ diagnosis, conversations with my sister usually started with me talking about vague, weird things I was observing. Those concerns became more specific, like rotting food in the refrigerator and hushed stories whispered by neighbors that Mom and Dad had gotten lost on the way home from the mall. During those conversations my sister suggested I begin a journal to document frequencies and specifics. Like a traitorous spy, I kept the journal for two years. It became an integral part of our parents’ diagnosis.

Our parents were a tight team. Never did they tattle or express concern about one another. Mom never said things like, “Your dad glides through stop signs.” Dad never implied Mom couldn’t remember how to start the washer or move clothes to the dryer. They experienced a simultaneous decline, hand in hand, just like they’d faced everything else in life. I couldn’t rely on one to help me make decisions to safeguard the other. Those painful decisions fell to my sister and me. My sister was willing to come home with the intention of being the bad guy, delivering the news when we moved them from their home to a senior care facility. She allowed me to remain the loving caregiver. I can never thank her enough for being there for me, and I know she can never thank me enough for being there for Mom and Dad.

Over the course of five years and three moves, eventually to a locked memory care unit, our parents died peacefully within one year of each other. Mom died first. When I told Dad, he said, “She was just here, saying she’d wait for me in heaven.” In the year following her death, even though he couldn’t remember he’d had a wife of 66 years, he’d randomly wave at the clouds and say, “I’ll be there soon.”

I told only a handful of friends and coworkers about our situation. Those I confided in told me I should write a book about this dual decline. I brushed that off, thinking, I’m drowning, I barely have time to write my lesson plans. However, when I sat with my father only one week after my mother’s death and Dad said, “Where is that woman I admired?” I came to realize our story could help others.

Are you at peace with what you wrote? 

Many people ask me if writing our story in Alzheimer's Daughter has been cathartic. Nothing could be further from the truth. My parents gave me everything in life, and during the Alzheimer’s process, I felt like I took everything from them. So, even after working on my book for four years, I released our personal story with great guilt. I really believed I could be struck by lightning as I pushed the final publish button.

However, in the aftermath, reader’s reviews have brought peace. During the final cleanout of my parent’s home, while trying to sort treasure from trash, I found my parents’ WWII love letters. I used these letters as chapter beginnings. Readers say the passion and devotion in the letters show the glue that held them together until their last breath. I believe my parents’ writing is the most beautiful part of the book. To have used their words along with my own, I know I pay tribute to them.

Does your book help end the silence and stigma of Alzheimer’s and dementia?

As a career educator, I read to learn and solve problems. Reading also guided my way through our Alzheimer’s journey. Each book, each voice, helped strengthen me for difficult times. No story was exactly like mine in that both parents were diagnosed at the same time. So, I added my voice to the choir, writing my story so it may help you through your own journey.

About the Author

After the publication of Alzheimer’s Daughter, Jean connected with other authors of Alzheimer’s books, to co-found AlzAuthors.com. Their mission is to eliminate the stigma and silence often accompanying a diagnosis while enabling caregivers and those living with memory impairment to find written resources – memoirs, novels, nonfiction, or blogs – which educate and enlighten.

In slightly over a year, the site is now managed by five administrators, and has posted weekly essays from nearly 150 authors with direct links to their books.

You can order a copy of Alzheimer’s Daughter to read Jean’s story. Please browse the nearly 150 titles about Alzheimer’s and dementia at AlzAuthors Bookstore.

Growing from her years of teaching elementary school, Jean has recently published two children’s books, Lexi’s Triplets and Lexi’s Litter of Three about her grandchildren and their beloved pets. She’s busy writing the third book in that series, Julia’s Journey to Her Forever Home.

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Meet Marianne Sciucco, AlzAuthors Admin and Author of "Blue Hydrangeas, an Alzheimer's Love Story"

Reposted with permission from AlzAuthors.com

By Marianne Sciucco

Writing a book about Alzheimer's was not something I planned to do when I sat down to write my first novel. It was a lifelong dream to one day write a book, but I had something else in mind when I started typing. That story was going nowhere when I met the captivating couple that inspired me to write Blue Hydrangeas,an Alzheimer's love story.

She was a beautiful 86-year old who was very confused when I, her case manager, met with her regarding her discharge plan from the hospital. "I'm so mixed up," she said multiple times, while her frail but dedicated husband sat beside her with a bemused smile. How had these two driven from Florida to New York on their own without any mishap?I wondered, as I reviewed her plan, which was to go to a nursing home for rehabilitation of a pelvic fracture. Seems she had a fall once they arrived at their New York home.

Their son was present and asked me to make sure his parents not leave the hospital without him the following day, as he planned to accompany them to the nursing home to take care of paperwork and business. I assured him that would not happen and left, spending the next few hours pondering what wouldhappen if they left the hospital without their son. Where would they go? What would they do? These questions became the foundation of my novel. I ditched the story I was working on and started writing Blue Hydrangeasright away. Eighteen months later, I had a complete manuscript.

When a writer falls in love with her story and characters magic happens. I easily stepped into the shoes of Jack and Sara, inspired by the hundreds of couples I helped navigate through their dementia journeys in my role as nurse and case manager. I chose Cape Cod as the setting because it's my home in my heart, and built them a beautiful bed and breakfast called Blue Hydrangeas because of the gorgeous, fluffy blue flowers all over the Cape. I wrote and rewrote the moving scenes where Sara is at the worst of her Alzheimer's, and the best. At all times, I infused the story with the deep love and dedication Jack had for his wife, even though nine years of relentless caregiving was affecting his own health.

I put my heart into this story because it was the story of many others living with dementia, and it was important, imperative, that their stories be told in a way that readers could relate to. It was not meant to be a how-to guide filled with advice from a clinical professional. It's heartfelt and warm. Grab the tissues because you'll most likely shed a few tears. Readers have written to me personally and posted reviews on Amazon that the story has touched and inspired them, validated their own experiences, and in some cases provided relief. "This story is my story too," one wrote. Another said, "It was what I needed to let the grief release."

My personal background with the disease when I wrote the book included my patients and their families, as well as three beloved aunts who succumbed to the disease. I was an observer in these interactions, not responsible for any of these people or the important and heart-wrenching decisions that needed to be made on their behalf. But two and a half years after publication, I started living my own story when I became the legal, medical, and financial representative of my stepfather who was diagnosed with three types of dementia: frontotemporal lobe, vascular, and Alzheimer's. Although I had written a book about Alzheimer's, worked as a nurse and case manager, and knew more about the dementias than most people, I soon learned I didn’t know much at all. It was a steep learning curve fraught with frustration and feelings of inadequacy. Without the help of my friends at AlzAuthors I'm not sure I would have come through the experience intact.

I now work in college health where Alzheimer's and dementia are not the most pressing of my concerns, but my dedication to help educate others about these diseases and chip away at the stigma that surrounds them is stronger than ever. I am coordinating a fundraiser for my local Alzheimer's Association and an education program for the entire campus in June, and organizing a team for the Alzheimer's Walk in October. And I will continue to work with AlzAuthors, spotlighting books and blogs that are a source of wisdom, comfort, and support for the caregivers and others who need them.

Purchase Blue Hydrangeas

About the Author

Marianne Sciucco is not a nurse who writes but a writer who happens to be a nurse. A lover of words and books, she dreamed of becoming an author when she grew up but became a nurse to avoid poverty. She later brought her two passions together and writes about the intricate lives of people struggling with health and family issues. Her debut novel, Blue Hydrangeas, an Alzheimer’s love story,is a Kindle bestseller, IndieReader Approved, a BookWorks featured book, a Library Journal Self-e Selection, and a 5-star Readers Favorite. Marianne has also published a Young Adult novel, Swim Season, based on 11 years' experience as a Swim Mom, and three short stories: Ino's Love, Collection, Daisy Hunter Story No. 1, and Birthday Party, Daisy Hunter Story No. 2. A native Bostonian, Marianne lives in New York’s Hudson Valley with her patient and reliable husband and beautiful, brainy daughter. They are ruled by Mr. Chance, a cat they rescued who thinks he rescued them. When not writing, Marianne works as a campus nurse at a community college, and teaches classes in independent publishing. She enjoys books, the beach, and craft beer, preferably all at the same time.

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Meet Paul Toolan, Author of "A View From Memory Hill," a Collection of Short Stories on Memory, the Past, Ageing, and Loneliness

Republished with permission from AlzAuthors.com

By Paul Toolan

I live in an English rural village with a demographic weighted towards retirees. I’m one of them, I suppose.

There are young people too, but older bodies tend to fill the shops and the midday streets. I find myself reflecting on these sometimes solitary folk, about their past lives and the people they’ve known. Have they forgotten more than they care to remember – or just forgotten?

The stories in A View from Memory Hill were triggered by such images, nudged along by Kierkegaard’s idea that we live life forward but only really understand it backwards. Their settings come from the everyday world – a chemist’s shop, a village square, a railway station, a College, a pub, the bus journey from work to home – as well as real places. In the first and last stories in the book I used local outdoor settings. The title story is based on Ham Hill, an ancient hill fort in Somerset which I often visit. I take photographs to help me remember!

For perspective, I introduced younger voices too, and enjoyed exploring that sometimes-land of modern misunderstanding, where the old and the young coincide. A range of characters evolved, and broad themes firmed up as I continued to write: memory, the past, ageing, and loneliness - and the positive antidote of choosing to take action to avoid being lonely.

For structure, I opened and closed the 12 stories with the same pair of characters: Jack - who has Alzheimer's - and Maeve, his wife. I guess they are distillations of various articles and documentaries I’d read and seen about dementia, and about Alzheimer's in particular. Maeve has become Jack’s carer. Alzheimer's couples may recognise her predicament:

“Jack was sleeping on the day-bed she’d rigged up in the conservatory. When he was bad, any sleep would do. She was Jack’s dictionary now, non-stop, exhausting, the reference book for all the objects, all the people he could no longer name. The butt, too, of each resulting outburst.

‘Do you know nothing?’ he would yell. ‘Nothing?’”

Despite Jack and Maeve’s difficulties, memory still breaks through, and with it, joy and laughter.

In between, the other stories explore the book’s themes through a range of genres, including crime, social satire, gothic noir, and romance, to give a variety of reader experiences.

So far, reviewers have enjoyed these “wonderful insights on ageing”.

“I felt nostalgic when I finished reading,” said one reviewer. “Where have the years gone? So many memories had me a bit emotional, truthfully.”

For me, if I’ve triggered emotion and insight in my readers, on such important themes, then I’m a happy man.

Purchase A View from Memory Hill

About the Author

Paul Toolan hails from the United Kingdom, a Northerner who now cheerfully admits being a southern softie living in rural Somerset. After a successful career in Colleges and Universities he wrote book/lyrics for stage musicals, before "turning to crime." A Killing Tree and A January Killing, the first two books in the Detective Inspector Zig Batten series, are set in the apple orchard landscape of the West of England. Look out for the third, An Easter Killing. A View from Memory Hill is Paul's first short story collection, exploring themes of ageing, memory, and personal realisation. Like Inspector Batten, Paul enjoys walking, gardens, fishing, music and the occasional whisky. Unlike him, he enjoys sport and the taste of mushrooms, and loves travelling to sunnier climes - Greece in particular.

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Norman McNamara lives with Lewy Body dementia and has authored “The Lewy Body Soldier”

Republished with permission from AlzAuthors.com

My name is Norrms McNamara. Someone once told me having Lewy Body`s Type Dementia is like having two diseases, you HAVE Dementia, and you KNOW you have Dementia. The same person, a Consultant, also told me that right up to the end of life, the person with Lewy Body’s will still have moments, if not hours/days of clarity. I lost both my Father and incredibly wonderful grandmother to Dementia. (I say that because she brought me up, I am who I am today because of her)

I have read the book, seen the last page, read the last line, I know what happens and know what can happen unless they find a cure for this awful disease. So when I was diagnosed myself nine years ago, aged just 50, I was absolutely petrified, and with good reason.

No cure, no sign of a cure on the horizon and after checking out what help there was available for somebody my age with dementia, which turned out to be practically non-existent, I was at a loss at what to do. I was so lucky in one way because my wife Elaine had been, and still is a carer for 30+ years and it was her who helped me get my diagnosis as she recognised the signs.

So what’s changed in the last nine / Ten years? A huge amount actually, we now have memory cafes all over the world, we have so many groups globally connecting up and beginning to talk about this disease. We have TV adverts, politician’s talking about it in Government’s and generally a better understanding, so why, oh why, is it still in the shadows when it comes to

TELLING THE TRUTH ABOUT THIS DISEASE!!?

It is only because relatives of those with Dementia and those actually living with dementia have started to write books about it are we starting to know the real truth about this disease, and this is exactly what this book is all about. This is a book written by someone who has Lewy Body’s type dementia but is still lucky enough to have the abilities, with a LOT of help, to write it, but let’s make one thing clear

This book is not for the faint-hearted.
This book is not about Clever Medical Terms or graphs.
This book doesn’t wear Rose tinted glasses.

This book is about not only about how hard it is to live with this awful disease, how hard it is to get help etc., but ALSO a book of helpful hints about HOW to get help, what to do when you go for a diagnosis and what to do after. It’s a book of hope, but most of all it’s a book of truth, and about, as they say,

“Hearing it right from the horse’s mouth.”

I am at peace with my illness, I believe every day is a bonus and every breath I take is a blessing, and no matter what happens, if I can give a little back to all those around me who have helped me along my way, then so be it.

Best wishes, Norrms Mc Namara, Founder of Global Purple Angel dementia awareness Campaign



Now recognised in 55 Countries around the world with 860 Global Purple Angel dementia ambassador’s.

To find out more please contact

https://www.purpleangel-global.com/



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Amazon book also availiable on Amazon USA and Amazon EU

https://www.amazon.co.uk/Lewy-Body-Soldier/dp/1536805874