Tuesday, July 19, 2016

AlzAuthors: Kate Swaffer on Living With Alzheimer's

by Kate Swaffer

There are currently more than 47.5 million people diagnosed with dementia (WHO, 2015) and I am one of them, and was diagnosed with younger onset dementia aged 49, a wife, mother of two teenage boys, and working full time and studying as a mature age student at the University of SA. There is also an estimated one new diagnosis every 3.2 seconds somewhere in the world (ADI, 2015). The health care sector, and service providers all told me (in different ways) to “give up work, give up study, to quickly get my end of life affairs in order, and to get acquainted with aged care, including considering going to respite one day a month to ‘get used to it’"! This is still happening, to almost all people with dementia, of any age today. I termed this Prescribed Disengagement® and believe in it so strongly, I also Trademarked the term. 

The stigma in the community is based on myths and fear, and also comes from what I describe as passive stigma in the sector, which is probably based on a lack of education, and also misperceptions about dementia. There is a notion we are all end stage at the time of diagnosis, which perhaps was the case 30 years ago, but is no longer so as the global push for earlier diagnosis has changed that. Yet, we are still being treated and managed as if we are end stage dementia. Increasing/improving undergraduate and postgraduate education is essential, as is awareness in the community, which is one of the reasons I started blogging, have embarked on a Ph.D., and published a book earlier this year. 

Telling us all to go home and get ready to die, rather than telling us we can live with dementia, and to ‘fight for our lives’ as we would be told with any other terminal illnesses, even those without a cure, is not only unpalatable, it is unethical. The key message in my book is that we should be supported to live with and beyond dementia, not only to die from dementia. 

In my ideal world, when someone with dementia is diagnosed, they will be offered authentic rehabilitation, as they would if they had a stroke or brain injury, and that we will no longer be stigmatised or discriminated against. These are the main reasons I placed dementia in the Human Rights space, as well as partly why I wrote my book. Our human rights, and our disability rights, under the UN Convention of the Rights of Persons with Disabilities (CRPD) must be accessed. 

My dream for Dementia Alliance International which is already the peak body for, and the global voice of people with dementia, to have the capacity to support and advocate for people with dementia in all countries; we currently representing 36 countries though our membership. We all MUST empower and re-enable people with dementia to continue to live, and to remain independent for as long as possible, which is simply a basic human right under Article 19 of the CRPD. 

Last year, I was honoured to receive a number of awards for my work, and am proud to have been a state finalist in the Australian Of The Year Awards for 2017, a winner of the National Disability Award as Emerging Leader Disability Awareness, a winner of the Bethanie Education Medallion, and also very proud to be the announced the International Dementia Leader for 2015 in the University of Stirling International Dementia Awards. During Dementia Awareness Week in the UK this year, Jessica Kingsley Publishers also quoted my book as being a best seller on their blog of which I am also immensely proud. In writing that book, if I helped only one person with dementia I would have been thrilled; it appears to have done at least that. Please join the conversations on my website Creating life with words: Inspiration, love and truth.

Saturday, July 16, 2016

AlzAuthors: Ann Garvin Writes About Laughter And Alzheimer's, A Necessary Contradiction

by Ann Garvin

I write about Alzheimer’s because, it seems, I can't not write about Alzheimer's. This wretched disease shows up, one way or another in so many of my essays, even when I don’t plan on it. There are times that I’m clearly writing about Alzheimer’s and the ravages of its footprint on people and family. 

Then, there are times I’m writing about memory and it's purpose in our lives, as I did here when performing in the Listen To Your Mother series. I, somewhat humorously decide, in my reading, why we only remember fails of parenting-grace instead of the highlights of our childhood. There is a lot of laughter in that performance but it’s laughter borne of pain. 

My grandmother had Alzheimer's and now my mother does. Before my mother had Alzheimer's she was a professor of gerontology and cared for the elderly through her nursing career. And, like mother like daughter, so am I.

There are two things I wanted to accomplish when writing about the plight that is Alzheimer's. I wanted to write about how it affects loved ones highlighting both the funny and sad. I never write just funny or just sad because I believe those two things are tied to each other irrecoverably and I have no interest in pulling those things apart.

As family members and caregivers it's very important to remember that while there is suffering there is also a bonding together in the ridiculousness of disease. I was reminded of this providing respite care for my father, who is my mother's long-term care person. My father cares for my mother in their home and I was helping my mother eat lunch. She has back pains and gets a pain reliever at noon which I put into her pudding. Every time I gave her a spoonful of the concoction she was able to separate the pudding from the pill and spit it out.

Watching the look on her face as she daintily pulled the pill from her mouth over and over again was like a comedy sketch filled with anticipation and consternation. I just couldn't help but laugh at her industry. When I recounted the tale to my father he and I laughed until tears came.

This is why I write. I want people to feel the range of emotions, I want them to feel the desperation of losing a loved one, and the hilarity of the day-to-day struggle with keeping dignity. Because make no mistake - it is funny.

In I LIKE YOU JUST FINE WHEN YOU’RE NOT AROUND I explore what happens when a woman who is a caregiver finds herself caring for everyone but herself. It takes her a while to notice it, and when she does she responds in both funny and sad ways.  My greatest hope is that other caregivers of all sorts find themselves in these pages and also find some respite there in both laughter and knowing.

About the Author
Dr. Ann Garvin, PhD is an award winning writer with three novels published in five different countries. Her novels I Like You Just Fine When You’re Not Around, The Dog Year, & On Maggie’s Watch are each about women who struggle to find their way in a world that asks too much from them, too often. Her writing is said to provide clarity, humanity, humor and compassion during this time of turmoil and change. She is a sought after speaker, educator, and writer with thirty years of teaching in higher education under her belt. Her primary focus is in health psychology and humor. Garvin balances her literary pursuits with teaching in WI And NH while supporting other women writers and raising a family. She is the founder of The Fifth Semester  and The Tall Poppy Writers .

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Friday, July 15, 2016

Cover Reveal: Keely Brooke Keith's Aboard Providence

One of my favorite Clean Indie Reads authors has a new book coming out! Here's the cover reveal for Keely Brooke Keith's Aboard Providence. Keely is the author of the genre bending series The Uncharted, which I love, and this new series promises to be as wonderful. At the end of the intro is a Rafflecopter link to win an autographed copy. Pretty cover!
A voyage aboard Providence changes Jonah’s plans, but can it change his heart?

In November 1860, Jonah Ashton is determined to finish his studies at Penn’s Medical School before rumors of Southern rebellion erupt into all-out war. When he learns his father has joined a group of Virginia families planning to sail from America to form a new settlement elsewhere, he travels to his family’s estate intent on saying goodbye. However, when an accident leaves his father in need of a physician, Jonah agrees to serve as ship’s doctor, but he resolves to return to medical school as quickly as possible.

While aboard the Providence, Jonah falls in love with former classmate Marian Foster. Despite their love for each other, Marian has no desire to return to America with him.

After an arduous voyage, Providence runs aground on an uncharted land in the South Atlantic Ocean. While the rest of the settlers celebrate finding the land they wanted, Jonah takes off to explore the island and he soon discovers a startling truth that changes everything, but can it change his heart?

Praise for Aboard Providence

“A delightful adventure reminiscent of Swiss Family Robinson, Aboard Providence is one of those novels that will stick with me because I feel I’ve lived it. A captivating, well-researched, and deftly written tale I can confidently recommend to a wide range of readers.” –Heather Day Gilbert, author of Amazon Norse bestseller God’s Daughter

“With vivid settings and multi-layered characters, Keely Brooke Keith whisks her readers off on a page-turning journey, not just across the ocean, but within the heart. You won’t be able to put Aboard Providence down until the final word is read and then you will long for more.” –Brenda S. Anderson, author of the Coming Home series

“A blend of history and romance with a compelling inspirational message, Keith expertly weaves an intriguing tale. Fans of the Uncharted Series won’t want to miss this journey.” –Heidi McCahan, author of Unraveled

“Keely Brooke Keith is a master storyteller, weaving adventure, love, and wonderful characters into a vivid story that will take readers on an unforgettable voyage to a new place. Full of inspirational messages and tales of God’s love, readers will find themselves longing for more. Keely’s story teaches all of us that the journey is just the beginning!” –Christina Yother, author of the Hollow Hearts series

Release Date: October 20, 2016
Pre-order Link: CrossRiver Media

About the Author:
Keely Brooke Keith is the author of the Uncharted series (Edenbrooke Press) and Aboard Providence (CrossRiver Media). Her novels are known for blending genres in surprising ways. When she isn’t writing stories, Keely enjoys playing bass guitar, preparing homeschool lessons, and collecting antique textbooks. Originally from St. Joseph, Missouri, Keely resides with her husband and their daughter on a hilltop south of Nashville where she dreams up stories, hoping to encourage, comfort, and inspire readers. She is a member of ACFW. 

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Giveaway Info:

Enter here for your chance to win an autographed copy of Aboard Providence.

Thursday, July 14, 2016

Welcome to the International Authors' Day Blog Hop

Today is International Authors' Day, a day to celebrate those who have the imagination, skill, talent, and tenacity to bring us a world of books. As a reader, I definitely appreciate a well told, well written story, but as an author I understand the amount of sacrifice, time, and angst required to take an idea from first draft to the shelves of your  favorite bookstore. 

International Authors' Day is sponsored by Debdatta Dasgupta Sahay of  b00k r3vi3ws blog. Follow the blog tour at the end of this post where you will meet some great new authors, peruse their books, then enter a giveaway to win great prizes (BOOKS!) 
My mother had lots of stories of me as a child but the one I love best was the story of my wanting to drop out of school three weeks into first grade because "I still can't read or write!" Seems I couldn't wait to learn these skills. She had a conference with the teacher to ask her to move me along. I still remember those early primers featuring a little black dog named Tag

Once I mastered reading I was always lost in a book and I still am. I'm not one to turn down the promise of a good story which is why I have to-be-read stacks on my nightstand, at the base of my bookcase, and on my Kindle and iPhone (is it possible to overload those things?) I'm always in the midst of reading four or five different books in a variety of genres contained in various devices: hardcovers, paperbacks, ebooks, and audiobooks. Some I bought, some were gifts or giveaways, some are borrowed from the library. I don't discriminate. If it looks good I'll pick it up. I may not finish, but I start. 

There is never enough time for reading. 

I hope I live long enough to get through my TBR piles. 

Respond to this post and you'll be entered into a drawing to win a copy of each of my Kindle reads - Blue Hydrangeas, an Alzheimer's love story, (full-length novel,) and short stories Collection and Ino's Love

All raffles run July 14-18. Happy reading!

Tuesday, July 12, 2016

AlzAuthors: Gary Joseph LaBlanc, author of Staying Afloat in a Sea of Forgetfulness

The Making of a Caregiver
by Gary Joseph LaBlanc 

Becoming a caregiver started as far back as my earliest childhood memories. My oldest sister was born mentally disabled, living her life equivalent to being around six years old. So it was drilled into me that I needed to hurry up and become her older brother and guardian, always keeping a close eye on her—making sure she was safe.

Even as far back as 18 years ago, dementia also walked into my life. My father had developed Alzheimer’s disease. We had partnered in opening a used bookstore together and after several years of both building the business, his (our) life began to change. This was the beginning of an 11 year campaign of becoming Dad’s primary caregiver.

At the advent of that decade-or-so, I was writing a paranormal suspense trilogy. Tough I kept trying to finish the third part of the series, my caregiving duties became so penetrating I found myself constantly struggling to develop my characters to my satisfaction.

I taught myself early on, however, when beleaguered by writer’s block—hey! Sit down and write yourself a letter. Get those creative juices flowing! My dispatched words became those of my father’s and I, daily struggles and triumphs of living with dementia. Every time I would let someone read these compositions, I would hear, “You need to do something with these—they would help so many in need.”

In August, 2008, I began writing a weekly column called “Common Sense Caregiving” and I’m proud to say that I’ve had over 350 articles in newsprint directly on the subject of dementia care.

Shortly after my dad passed (and I mean that literally) my caregiver campaign resorted to caring for my mom, who developed vascular dementia and is currently home on Hospice.

Gleaned from my 5000-plus days and nights of personal experience, I have written several books for caregivers. “Staying Afloat in a Sea of Forgetfulness” was my first, then the others, “The Aftereffects of Caregiving” and “Managing Alzheimer’s and Dementia Behaviors (Health Care Edition)” and have also co-authored “While I Still Can.”

 To further complete all of my personal experience, honestly, I received my greatest education from an international group that I co-founded called “Dementia Mentors.” This group is a virtual place for those living with any type of dementia where they can remain social, specifically with others enduring the same symptoms. I have truly leaned that there is no greater “expert” than one’s actually living with the diseases. We need to listen to these folks—and I mean, truly, listen!

I encourage you to go to www.dementiamentors.org and check out the video page. There you will find close to 100 three-minute videos, all made by those with dementia. You will get the inside scoop of what it is intrinsically like to live with a dementia-related disease. These people are absolutely amazing, and need to be heard.

A final thought on caregiving: what I have learned is that caregiving is truly about making sacrifices. It’s what we do! This is a job of dignity and nobility. I have met some of the most admirable people along this lengthy campaign and I’m sure I will meet more tomorrow. You will find that you will too. 

Sunday, July 10, 2016

New Release Spotlight: Erin McCole Cupp's Modern Translation of Jane Eyre - Unclaimed: The Memoirs of Jane E, Friendless Orphan (Book 1)

Buy this book! For fans of Jane Eyre, cyberpunk, and science fiction, this genre bending retelling of the classic novel will amaze and entertain you. Can't wait for Book 2.

Born not in a past of corsets and bonnets but into a future of cloning and bioterror, could Jane Eyre survive? This Jane is an “unclaimed embryo,” the living mistake of a reproductive rights center–or so her foster family tells her. At age ten she is sold into slavery as a data mule, and she must fight for freedom and identity in a world mired between bioscientific progress and the religions that fear it.

Praise for Jane E.

"A riveting, heart-wrenching retelling of Charlotte Bronte's classic novel, Unclaimed packs a punch that brings the timeless truth of the original Jane Eyre to Millenials, Generation Z, and beyond. Bravo! Bring on the next installment..." Antony Barone Kolenc, The Chronicles of Xan Trilogy

“In a style that's engaging and unputdownable, Erin McCole Cupp grabs readers, sucks them into her world, and makes Jane E a part of our hearts. Be warned: you'll finish this book and demand the next one.” Sarah Reinhard, Word by Word: Slowing Down with the Hail Mary

"Brilliant and inspiring with a unique blend of genres. This book is for classic and sci-fi fans alike. It will leave the reader anxiously waiting for the next installment." Tanya Weitzel, Catholicsimplicites.com, Catholicmom.com Contributor

"Whether in Georgian England or the global community of a technocratic future, there will always be orphans who can teach the rest of us how to love, if we will only take the time to learn. This is the reason we need books like Unclaimed." Karen Ullo, Jennifer the Damned

"What a great read! Jane E has Hollywood written all over it: strong, complex characters; rich settings, adversity, action and intrigue—it’s all here in this modern updating of Jane Eyre. I couldn’t put it down!" Rhonda Ortiz, The Virtuous Jane Austen

Available on Amazon.

An Interview with Erin McCole Cupp

Q: So what made you think you could get away with rewriting Jane Eyre? 
EMC: I never expected to get away with it! I think of it as more of a translation than a rewrite, anyway, and when you're reading a translation, you must always keep in mind that it is but a pale image of the original. At any rate, way back in Y2K, I had spent the first part of the year reading a steady diet of William Gibson, Neal Stephenson and Bruce Sterling--the revered trifecta of the cyberpunk subgenre of science fiction. When our summer vacation came around, I decided I'd take a vacation from reading for professional development as an aspiring SF writer and bought a bunch of books from the literary classics bargain bin at a boardwalk bookshop. A few chapters into Jane Eyre, my mind kept throwing up these weird parallels between the character of Helen Burns as Jane's spirit guide and the character of Molly as Case's spirit guide in Gibson's Neuromancer. I remember thinking, "Wow, Jane Eyre would've made great cyberpunk." [beat] "Oh, crap, now I have to write it!" 
Q: That was sixteen years ago, and the first edition of Jane_E dropped a decade ago. What made you decide to revisit your first novel and rerelease it electronically?

EMC: I just think ("hope" might be a better word) that the audience might be ready for it a bit more now compared to ten years ago. I'd already been thinking of re-releasing it as a single book and getting a fresh cover, having it available in hard copy as well as electronic format. However... it's a long book when taken all in one slice! Jane's story (mine as well as the Bronte version) also divides itself naturally into three parts: her early years, her developing relationship with her employer, and then everything that happens after that relationship catches fire, for lack of a better term (and those of you who've read Jane Eyre know of which I speak). I figured that by breaking it down into smaller portions, a reader could take a chance on Book 1 (Unclaimed) without the commitment to some giant tome. Of course if you want the giant tome, that's still available.

Q: So when do the next two books come out?

EMC: I'm looking at October 7 for Nameless (Book 2) and December 6 for Runaway.

Q: Why make us wait so long?!

EMC: Because I'm mean. Ha! Actually, there's the cover art to take care of, thanks to Fiona Jayde Media. I also wanted to give the text a little extra polish that may have gotten lost in the initial editing, which was done when I had infant twins. I'm working with Rebecca Willen over at Our Hearts are Restless, and she's great--reasonable, thorough, no-nonsense--but I'm also letting those aforementioned twins (now 12 and homeschooled) provide an additional level of copyediting.

Q: What's that like, letting your children correct your work?

EMC: You mean, besides the weird factor of letting them read something on the edgy side that came out of my brain before they were even born? Actually, it's a lot less stressful than I thought it would be. It's a good way to model humility, really. I mean, I'm the one always correcting their work, and now I'm letting them turn the tables. I think it's good for all three of us.

Q: Any other projects in the works?

EMC: Always! Besides the Jane E series, I'm a contributor to The Catholic Mom Prayer Companion, which is available on pre-order for an August 29th release. I'm also working with
Ellen Gable of Full Quiver Publishing on an anthology of Theology of the Body fiction and poetry tentatively titled Image and Likeness. That's exciting, working with so many talented authors, and that's scheduled for a October 22 release. Finally, I'm still pecking away at the first draft of the sequel to my murder mystery Don't You Forget About Me.

Thursday, July 7, 2016

AlzAuthors: Loretta Woodward Veney - Being My Mom's Mom

by Loretta Woodward  Veney

I decided to write my book Being My Mom's Mom because I felt so helpless when my Mom was diagnosed in 2006 at the age of 77. I was stunned that at such a young age she became the first female in our family to be diagnosed with dementia, especially given the longevity of my grandparents and particularly my great grandmother who lived to be 106 with both her quick wit and her memory intact. 

I had no preparations in place for my Mom because she had no health problems at all. I thought she’d live alone until she was 100 like my great grandmother. I had no written wishes about where Mom wanted to live (aside from not wanting to live with her kids). I didn’t even know where to seek help though I live less than 3 miles from my county’s Department of Aging. I wanted the book to help other adult children prepare earlier for conversations with their parents about their wishes for long-term and end of life care. 

The response to my book has exceeded my wildest dreams. I had expected to give a few local talks to churches, book clubs and support groups. But a few months after my book was published in 2013 I met a woman from Arden Courts Memory Care Communities, (a subsidiary of Manor Care) and gave her a copy of my book. That eventually led to my becoming a speaker for Arden Courts and them purchasing more than 1,000 copies of my book. To date I’ve given more than 175 presentations to Arden Courts Communities across the country. I’ve also given many presentations for the Alzheimer’s Association throughout DC, MD, VA and WVA. Book Clubs, support groups and church groups have also hosted me for speeches and book signings. Mom would be proud if she understood. 

The book has absolutely given me peace and it’s been healing for me to meet others in the same situation! From the first presentation I gave, I could tell I was giving others hope by letting them know they aren’t alone in this fight. 

They’ve also given me hope. The notes and emails from those who have heard me speak have kept me going even on the darkest days, like when my Mom didn’t remember me for the first time on my 55th birthday. 

Though I’ve spoken to very large crowds, I’d much rather meet people in small groups where we can really talk and share our stories. The book has taken me to large cities, to small towns, and even to a few farms, because no matter who you are, or how much money you have, no one is immune from this disease. Alzheimer’s disease unites us all in this fight.

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