Meet Shannon O'Donnell, author of Save The Bones

In the late 1990s, I joined a writers’ group. The rules were simple: “Bring three pages, double-spaced, to read. Ask for the critique you want.” I wanted to write, not just think about writing.

I wrote and shared a story about a trip my sister and I made to visit our mother in Southern California. It had been an odd time and we were still trying to make sense of it. Writing helped. I kept writing, especially about funny conversations I had with Mom.

When conversations with a parent take on the quality of a late-night comedy sketch, you can either stop talking or you can laugh. I chose to laugh when Mom sang "76 Trombones" on her 76th birthday. I laughed when she grumbled about missing ordinary people and when she thought I was my bearded writer brother. Alzheimer's came in like a pratfall and stayed to tell jokes.

Eventually, my mother had to move out of her retirement community in California to assisted living in Washington. I kept writing.

I looked online for comrades. Most of the stories about Alzheimer’s were drastic, horrible. I remember thinking, “No one is writing about the funny stuff.” Misheard conversations, unfamiliar words, mistaken identities, all of these found a place in those three double-spaced pages that I shared with the writers’ group. Humor seemed key to my handling all the new things that happened.

Mom went to the hospital, changed living situations, became combative then passive. The years went by. I wrote. I didn’t know that writing would get me through the emotional riptide of Alzheimer’s.

By 2012, it had been a number of years since Mom had said anything, much less anything funny. I collected up all the stories and put them in a book called Save the Bones. I worried a bit about my siblings’ response to the book. I hadn’t always been kind about them in the writing, but in the end, this book was my experience with Mom. They have their own stories.

Save the Bones was published in January 2013. It led to talks with church groups and a book club, and a reading at a clothing store in downtown Seattle. (That last one sounds right up the Alzheimer’s alley, doesn’t it?) I finally joined a support group that winter. After ten years of dealing on my own, it was finally time. I missed talking with my mom, missed having weird adventures with her, and I needed to talk with others who understood why saying goodbye was taking such a long time.

My mother died in November that year. The day itself was memorable and I finally wrote it all down in 2016 and made it the final chapter of the book. Save the Bones is in its second edition. Mom’s memory lives on. And I’m very glad to have contributed to some of the humor that shows up as families wrestle with changing circumstances.

Shannon O’Donnell

@MsShanOD on Twitter

On Amazon http://tinyurl.com/ShanODBones

Shannon O’Donnell Author on Facebook

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MsShanOD@gmail.com

Meet Rundy Purdy, author of The Sea Is Wide, A Memoir of Caregiving

Writing The Story

by Rundy Purdy

I was twenty-four years old when I became a caregiver for my grandpa. I left my old life and moved in with my grandparents to care for my Grandpa in his journey through Alzheimer's. There at the very start of my journey, fresh in that new place of life, I sat down and began with the following email to my family:

"Obviously I can’t send daily updates, but I thought to I’d let you know how things have started out. Last night I slept in the same room as Grandpa. I don’t know how much Grandma told him, or how much he remembered. He didn’t appear bothered or surprised that I was sleeping in the room . . . but it feels a little odd because I don’t know what he was told, what he thinks at any given moment, or even what he understands. He keeps forgetting what room he sleeps in, and this may be part of why he doesn’t seem to be troubled by me sleeping in the same room. Grandma is trying to really pound in his head that I am the one putting him to bed. I guess one of the really big problems for Grandma was Grandpa’s habit of wanting her to put him to bed. Grandma is exhausted by 10:00 p.m. and playing nursemaid to Grandpa (telling him how to take off every piece of clothing, how to climb into bed, tucking him in, kissing him goodnight) is too much for Grandma. I thank God that Grandpa was doing so well last night, because I was pretty much thrown in the water and told to learn how to swim. [...]"

The first blog post came a few weeks later and opened with the reflection: "Life can change suddenly. Sometimes, it does. On September 24th mine did."

From the very start I wrote. It was private emails at first, and then a semi-private blog as I chronicled my caregiving journey through Alzheimer's. Eventually, it became public blogging. But through the entire journey I wrote. It was therapy for me. It was a form of remembering in the midst of a disease which was full of forgetting. Three years of marking the path through laughter and tears, learning and letting go until Alzheimer's finally took Grandpa away. Afterwards, in the final blog post I wrote, "For me the writing is so packed full of emotions, so packed full of living, that it is kind of like drinking from a fire hose." I had a book's worth of material, and I wasn't certain what to do with it.

I wanted to help and encourage other people in their caregiving journey, but it was not an easy decision. A part of me didn't want to revisit my writing and dig up all the painful memories of what had happened. Added to this was implicit resistance to sharing the story with the public from certain parts in the family. Grandma only wanted me to write flattering things--a rosy false picture I was not willing to paint. And there was no guarantee other people in the extended family would understand the purpose of sharing such a messy story with the public. The easiest path would have been to put the writing away and move on.

Instead, after three years I came back. I became convinced it was a story I needed to share, to be an encouragement for other caregivers, regardless of whether certain people in the family might not approve. I counted the cost and decided I would deal with whatever came--but I would share the story.

It turned out not as badly as I feared. Grandma passed away before the book became public so she never saw how she wasn't painted as the perfect person she wanted. Most of the family was supportive. There was the one relative who--without reading the book--cursed me out for my vile intentions in publishing it. But when you have a lot of relatives only being reviled by one out of the lot is about as good as one can hope. And the response from other caregivers has been overwhelmingly positive.

It was scary to become a caregiver. The future was so unknown and yet I had to make a choice about what I would do. I may have found something equally scary in publishing the story of that journey. Sharing a hard experience with the public opens a door to another uncertain future. It doesn't feel comfortable, but both journeys share something in common: the risks are worth it. As soon as my book was released I went on the road to share my message of encouragement in person, and as I spoke people were moved to tears. After one talk a woman said that my story had finally allowed her to grieve the loss of her own mother.

The long nights, the hours on the road, the stress of strange situations and new places--I don't have any regrets. My book opens with the words, "It is strange how life travels in full circles" and in a way writing my story has also done that. It hasn't been easy, but it has been good. And I look forward to touching many more hearts on this journey. Perhaps I will see you there.

____

Rundy continues to write and speak on caregiving and caregiver support. You can find him online at www.caregivingreality.com and in social media you can follow him on Twitter at: https://twitter.com/CaregivingR and find him on Facebook at: https://www.facebook.com/CaregivingReality/

Meet Kate Swaffer, author of What The Hell Happened To My Brain

There are currently more than 47.5 million people diagnosed with dementia (WHO, 2015) and I am one of them, diagnosed with younger onset dementia at age 49. I am a wife and mother of two teenage boys, 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 represent 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.

Meet Ann Garvin, author of I Like You Just Fine When You're Not Around

Laughter And Alzheimer: A Necessary Contradiction

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 pain 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.

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 www.thefifthsemester.com and The Tall Poppy Writers www.tallpoppywriters.org

Purchase Links for I LIKE YOU JUST FINE WHEN YOU’RE NOT AROUND

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www.anngarvin.net

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Meet Gary Joseph LeBlanc, author of Staying Afloat in a Sea of Forgetfulness and numerous other books and articles about Alzheimer's and dementia

The Making of a Caregiver

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” “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 learned that there is no greater “expert” than one actually living with the disease. 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.

Meet Loretta Woodward Veney, author of Being My Mom's Mom

I decided to write my book 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 also 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. 

@lwveney – Twitter 

Lwveney.wordpress.com – Conquering Life Blog 

www.lorettaveney.com - website 

Meet R.J. Thesman, author of the Reverend G. Series

How a Trilogy about Alzheimer’s Brings Hope

By RJ Thesman

“We have to park here,” Mom said, as I drove her to the grocery store. 

“Why here? Why in this particular spot?” 

“Because…when we come out, we’ll know where the car is.” 

That was my first clue that Mom’s forgetfulness had merged into something more serious. She always parked her car in the same spot at the grocery store so she could find it when she finished shopping. 

“What happens, Mom, if that parking spot is already taken?” 

“I just go home and forget about groceries that day.” 

Several months later, we heard the dreaded prognosis of Alzheimer’s disease and our lives changed. We knew what to expect, because Dad suffered through ten years of trauma-induced dementia before he passed away. Mom, his caregiver throughout that Long Goodbye, now needed to receive care. 

As I thought about my parents and their experiences through this dreaded disease, the germ of an idea began to form. What if a woman minister had the same experience? What if she was diagnosed with early-onset Alzheimer’s and had to resign from her pastorate? What would be her greatest struggle? 

The story began to evolve from a base of pure creativity and my need to grieve. I started typing and listening to my main character’s voice. Reverend G whispered ideas and revealed to me her greatest fear.

As a minister, what happens if I forget God?

Within six months, I had completed “The Unraveling of Reverend G,” but I knew I wasn’t finished with her story. As my mother’s Alzheimer’s journey continued, so did the story of this gutsy little minister who honestly prayed, “Oh God, oh God, I can’t stand it.” 

CrossRiver Media sent me a contract for the book and soon I was scheduling book signings and speaking events, talking about Alzheimer’s and caregiving. I tried to share hope with my audience and at the same time, kept writing the second book. 

Two years later, I finished “Intermission for Reverend G” and then a year after that, “Final Grace for Reverend G.” CrossRiver Media published the entire trilogy and urged me to continue to reach out to caregivers. 

I started a group on Facebook, “Sometimes They Forget.” With the wide reach of the internet, members joined and told their stories. Though my heart broke with each post, I knew Reverend G and I could use our faith to encourage these caregivers who needed just one nugget of hope to make it through another day. 

The comments on my blog, on the Facebook group and on my monthly newsletters confirm that caregivers everywhere need to find hope. When I teach at writers conferences and as I speak in various venues, I meet people everywhere who know someone with Alzheimer’s. The Reverend G books help them realize they are not alone in the journey and somehow – they will make it through one more day. 

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Bio: RJ Thesman has been a writer since she flipped open her Red Chief tablet and scribbled her first story. She has over 700 publishing credits in various magazines and her work is included in 13 compilations, including 5 Chicken Soup books. Besides the Reverend G trilogy, she has also published 4 nonfiction books. 

As a Certified Life Coach, Thesman enjoys teaching writing workshops and coaching writers to find their personal writing plan. Thesman lives in the heartland of Kansas with her adult son and an elderly cat. 

Thesman’s author page is on Amazon at: http://amzn.to/1OgWSMA. Follow her blog at: www.RJThesman.net, her Facebook page at: http:www.facebook.com/RJThesman?fref=ts and Twitter at: https://twitter.com/RJThesman.