Alzheimer's Daughter

The Story

Alzheimer’s Daughter introduces the reader to my healthy parents, Ed and Ibby, years before their diagnosis, then recounts painful details as our roles reversed and I became my parents’ parent.


Their disease started as translucent, confused thoughts and ended in a locked memory care unit after a near decade of descent into the opaque world of Alzheimer's.

I began writing Alzheimer’s Daughter one week after my mother's death––when I was stunned, realizing Dad had no memory of her or their 66-year marriage.

I write to pay tribute to the undying spirit at Ed and Ibby's core, and with the hope that the story of their parallel decline might be helpful to others.

Saturday, November 17, 2018

The Power of Community


Reposted with permission from AlzAuthors.com

by Irene Frances Olson, AlzAuthors Global Outreach Coordinator

The quickest method to connect with someone is the virtual, social media connection with which we are all familiar. But unless a person crosses the precipice from virtual to real, there is no way to truly understand the benefit of in-person relationships.

AlzAuthors In-Person Connections. Upper Left: Lisa B. Capp, Jean Lee, Vicki Tapia, Irene Frances Olson; Upper Right: Florrie Munat & Ann Campanella; Lower Right: Bobbi Carducci & Marianne Sciucco; Lower Left: Kathryn Harrison & Jean Lee

That was the case for the AlzAuthors Management Team when all six of us convened at the 2018 National Caregiving Conference in Chicago. The team was generously gifted with the opportunity to gather from the corners of the world from which we hail: the states of Washington, Montana, Ohio, North Carolina, and New York, and the Canadian province of Ontario. Meeting for the first time was a highly anticipated emotional event that proved beyond beneficial to me. You think you know someone after spending months, or even years, emailing, texting, and video-calling, but what I discovered is you can’t truly know a person until extended real – not virtual – facetime occurs.


I met with as many conference attendees as I could and having done so, I came away concluding that community is everything. Like-minded individuals – at least 250 of them – gathered together for several days to feed the spirit, nourish the soul, and further the mission of being a support to the weary caregiver.

Regardless of which disease renders a person in need of care – Alzheimer’s, cancer, ALS, and the like – caregiver heroes need as much support as can be given. A powerful community goes a long way toward lessening a person’s burden, and as AlzAuthors has been known to say:

One can sing a lonely song, but we chose to form a choir and create harmony.

Winner of the NCC18 AlzAuthors 6-Pack Giveaway!

Wednesday, November 14, 2018

AlzAuthors announces first anthology: Alzheimer's and Dementia Caregiving Stories

Reposted with permission from AlzAuthors.com


The AlzAuthors management team is pleased to announce the publication of Alzheimer’s and Dementia Caregiving Stories: 58 Authors Share their Inspiring Personal Experiences, Vol. 1. This poignant collection of stories grew out of the first year’s blog posts on AlzAuthors.com, from June 1, 2016 through May 31, 2017. Within its pages, you will be immersed in a world of writing about Alzheimer’s and dementia.

The contributing authors have all been touched by Alzheimer’s and dementia, whether they live with the disease, are caregivers, or simply care. They reveal the story behind their books, what made them sit down and painstakingly share their story, and what they have gained from doing so.

This year-long project was made possible through the international collaboration of seven women, all daughters of dementia, your AlzAuthors management team. We have worked tirelessly to find and vet resources – memoir, novels, nonfiction, poetry, children’s books, and blogs – to provide those living with dementia a friendly place to find the support and knowledge they need. We believe that by sharing our stories we open a dialogue that not only reduces the stigma surrounding a dementia diagnosis, but enlightens others to the reality that “I made it through. You can too.”

Heartfelt thanks go to our Special Projects Editor Jay Artale, author of A Turbulent Mind: A Poetry Collection of a Mother’s Journey with Alzheimer’s, who donated countless hours to the design and formatting of this beautiful book.

In early 2019, we will begin the process of creating Volume 2, which will consist of posts from June 1, 2017 through May 31, 2018.

This book would make a wonderful gift for a caregiver you may know who is in need of knowledge, support, and comfort. Please keep it in mind as you do your holiday shopping. It is currently available on Amazon in Kindle format. Purchase here. A paperback is in the works and should be published within the next week or two.

All proceeds from anthology sales will be used by AlzAuthors.com to maintain our site and promote our authors’ books.

Wednesday, October 31, 2018

Meet Tracie Bevers, author of "Dancing Around the Chaos"

Reposted with permission from AlzAuthors.com

By Tracie Bevers

In the early days of the disease, when I heard stories of others in later stages, I actually thought… “Well, I know that will never happen.” Little did I know what the future held; I was very naive. Many times along the way, I would remember something a friend had shared with me two or three years prior, and reality would settle in. We were there; those things were happening. It was hard, no doubt, but at least I knew others had been down this road.

As we journeyed through Alzheimer’s with Mom and Dad, I regularly took notes, sent emails to our kids, took pictures…that sort of thing. Somewhere along the way, I decided that one day I could write a book with all the notes I was taking. I had become passionate about sharing the story and encouraging others, and I wanted to share our journey with people who needed to hear about it.

My reasons for telling the story are:
To help others beginning the journey – to share information that may be helpful to them, even if it is hard to tell…and hard to hear.
To make it clear to those who don’t understand what Alz is…it is a cruel disease of the brain affecting 5.7 million Americans. According to the Alzheimer’s Association, that number could rise to 14 million by 2050.
To share a sweet story of two people who loved each other to the end. Their journey made it possible for others to witness a true, one-of-a kind love story and raised the bar for many.

It’s not an easy story to tell, but the truth is – Alzheimer’s is not easy. If I didn’t tell the real story, even the parts that make us uncomfortable, then I’m not sure any of my three goals would be accomplished. I have struggled…hoping others don’t think I shared too many intimate details, but mostly praying that Mom and Dad would approve. Now I know that if they could hear the stories about how their journey is helping others, they would be pleased. Following are excerpts from some comments received:

“Sharing the most intimate of details, the book gently wraps its hands around your heart and guides you down a path of love and loss that will provide you perspective and lessons you can apply while navigating the dark and turbulent waters of Alzheimer’s. Bevers allows us into her compassionate and emotional world so we may emerge strengthened with greater understanding.”

“Wonderfully written, I found it both inspiring and frightening since I now realize that our own experience is only at the halfway point in the book. A lot lies ahead but this helped me prepare for it. Thank you for sharing such a personal journey.”

“I could feel each beautiful moment and the emotion of every heart-wrenching decision. What a truly remarkable treasure this will be for many facing uncertain times.”

“I am beginning the journey you just left and reading this book has changed how I approach it. I have a better understanding of what my mom is going through and I will hopefully be a better son to her because of it.”

The unexpected gift that came from writing the book was that it was a healing experience for me…it was the right thing to do for Mom and Dad, for others, and for me.

Purchase Dancing Around the Chaos

About the Author

Tracie Bevers lives in the Houston area and is known as “Honey” to her six grandchildren. She loves writing, reading, cooking (AND eating out!), traveling (AND spending time at home!)…but mostly she loves spending time with family and friends. She has known her husband since she was 14 years old, and they have been happily married for almost 39 years.

Tracie spent well over a decade journeying through the world of Alzheimer’s after her parents were diagnosed. She learned a lot…mostly about real, true love…a precious gift that she now realizes she may have missed had she not been on the Alz journey with them. Along the way, she became passionate about sharing information with others just beginning their own long journey to goodbye.

Connect with Tracie Bevers

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Wednesday, October 24, 2018

Meed Malia Kline, author of "Sisterly Shove"

Reposted with permission from AlzAuthors.com

By Malia Kline

When our mama was diagnosed with infiltrating pancreatic cancer and given three-to-six months to live, she was the sole caregiver for our 87-year-old father “Papa,” who was in the early stages of dementia. Over the next 13 years, my sister Diane, a pathologist, and I shared care of them from opposite coasts and opposing viewpoints, often engaging in hand-to-heart combat over what constitutes quality of life. Sisterly love turned to Sisterly Shove in the book we co-authored.

After hearing the news that Mama had pancreatic cancer, Diane proclaimed her “a goner.” But after she became dissatisfied with both the home care I arranged and the health care system in our hometown in North Carolina, Diane took Mama against doctor’s orders to live in her home in a California beach town. She quickly discovered that the wild card of having someone like Papa with dementia in the mix made cancer care and practicing medicine impossible for her.

Papa ping-ponged back to me in North Carolina and lived in a memory care facility I loved for five years.But after he broke both hips, Diane eldernapped him from the facility,quit practicing medicine, and doctored him by herself 24/7 for more than seven years at her home in California.

The story my sister and I tell in “Sisterly Shove” reflects a new kind of sibling rivalry among baby boomers: Which sister, or sometimes brother, is best willing and financially able to care for and make life-or-death decisions for elderly parents, especially in light of their own obligations to young children? Is it possible to share care among siblings, especially in a strong-willed and highly opinionated family like ours with a both a sister and brother who are doctors calling the shots long distance?

The Alzheimer’s Association says that 1 in 3 seniors now dies with Alzheimer’s or another dementia. In the case of Papa and his siblings, dementia snatched the memories and daily lives of 4 out of 5 of them. Since we are part of an extended family predisposed to living long lives, most of our cousins have also experienced Sisterly Shove. Since the book came out, we’ve learned that three once-close female cousins who all work in health care and battled over care of their mom have now been estranged for years.

We’ve also found that many of our readers have experienced similarly heart-wrenching family caregiving battles and can totally relate. Family relationships have clearly become an unintended casualty of the Alzheimer’s and dementia epidemic. We are working to share our story, not only in our book, but also in person at conferences and within caregiver support groups in order to help siblings work together in a spirit of compromise.

My co-author Diane went to medical school in the days when health care was a fee-for- service world. She believes that if we don’t support research and change our approaches to eldercare under the new value-based medicine model, we will pit one generation against the next and compromise our ability to be competitive in a global economy. That’s one perspective and hope for our society that the two of us certainly will not fight about.

 
About the Author

Malia Kline, the younger sister in “Sisterly Shove” is a copywriter who studied journalism at The University of North Carolina at Chapel Hill and was formerly a writer/producer at a CBS-affiliate TV station. She was also the scriptwriter on videos in the Duke Family Series. One of them, It’s Potty Time, was named “KidVid of the Year” by Roger Ebert and became available in nearly 700 libraries worldwide. Malia now owns her own copywriting business and shares her word-obsessed perspectives in MaliaMania, a comedic grammar blog. She lives in Charlotte, N.C. with her husband Steve and has one daughter who has followed in her sister’s footsteps as an M.D., recently starting her pediatric residency.

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Wednesday, October 17, 2018

Meet Jane Mullins, author of "Finding the Light in Dementia"

Reposted with permission from AlzAuthors.com


By Jane Mullins Ph.D., from Cardiff, U.K.

I am a nurse who has worked with people who have dementia for over 25 years. This has included nursing in a care home where I have helped support people during their transition from home. This has included finding out about their life stories and getting to know them, working together in understanding their past, identifying their present needs and future wishes. I have also cared for people who have dementia in hospital and seen the impact that an admission can have on the person and their dementia. Here, I recognised the importance of involving families and keeping familiar meaningful objects with them when in unfamiliar places. My role as a nurse in memory clinics included supporting people and caring for them during their diagnosis of dementia. This involved offering them and their families one to one counselling, practical advice and support. It also gave me the opportunity to understand the real concerns and issues that people who have dementia and their families experience. As well as my practice experience, my Ph.D.; a Suitcase of Memories, involved creating a multisensory reminiscence approach to counselling and provided therapeutic support to people living with dementia and their partners.

By listening to and observing people who have dementia and their loved ones, I have learnt so much about how it can affect them and have uncovered common features that may help. For example, many caregivers would be upset when struggling to communicate with their loved ones and not understand why they may behave differently over time.

By drawing from their experiences and up to date research, I set out to write a monthly column for a local newsletter; the Mumbles Times and a national newspaper; the Mature Times. I wrote every month about different aspects of how dementia can affect people and considered ways that would help them, based on my knowledge and up to date research. I gained much positive feedback as the months went by and a number of readers suggested I put the columns together into a book – Hence, Finding the Light in Dementia, a Guide for Families, Friends and Caregiverswas born. I feel that Finding the Light in Dementiais authentic and reflects my approach to caregiving as it also includes the experiences of the many people I have listened to with their stories interspersed throughout. Finding the Light in Dementia, a Guide for Families, Friends and Caregivershelps all affected by dementia by giving confidence to care. It contributes to breaking down the stigma of the dementia by explaining how a person experiences the condition and shows that by adopting positive approaches to care and the environment, the negative effects of the condition can be reduced considerably.

Amazon review

This is an excellent guide for anyone who has a family member or friend suffering with dementia. Really helpful advice & explanations on why certain behaviours happen & how to deal / cope with them. The best bit about this book is it is easy to read - short chapters & clearly written with very little jargon, so it is very accessible. It's also helpful to have sections for making notes about your own circumstances, the idea being that you have the day to day information to take to a doctor if needed. The book takes you through from initial diagnosis all the way to making the decision to look at residential care, and it truly does "find the light" in all stages of that journey. It is reassuring for someone who has little or no experience with dementia to know that as a carer they are not alone, as quotes & comments from real life people are included throughout. It is a very positive book & has real tips & techniques for dealing with the situation of having a loved one suffering from such a cruel disease. Sandra, Daughter

Bio

Dr. Jane M. Mullins is a dementia nurse consultant who has devoted over 25 years to the study and practice of dementia care. Through listening to and supporting people and their families during their diagnosis in memory clinics, caring for them in hospital and in care homes, she has helped throughout all of the stages of their condition.

Jane has uncovered certain common features that may help caregivers and the people they care for find better ways of coping. Her practice experience is backed up by expert knowledge gained from attending conferences, continuing education, lecturing and keeping up to date with research, as well as studying for her Ph.D. which explores multisensory ways of communicating and connecting.

Wednesday, October 10, 2018

Meet Susan Soesbe author of "Bringing Mom Home: How Two Sisters Moved Their Mother Out of Assisted Living to Care For Her Under One Amazingly Large Roof"

Reposted with permission from AlzAuthors.com


By Susan Soesbe

How do you write an honest story about a real-life tragedy without being so tedious and somber that nobody wants to read it? This was my challenge in writing Bringing Mom Home: How Two Sisters Moved Their Mother Out of Assisted Living to Care For Her Under One Amazingly Large Roof.

When Mom was in her seventies, the idea that she had dementia sort of came and went, like back pain. My suspicions would flare up when she did something out of character, like purchase an expensive juicer, though she had not one shred of interest in healthy eating. But then, she was still able to drive, email, and play Rummikub, a math game.

However, the dementia eventually became obvious. My sister and I convinced Mom to move to an assisted living facility, and then to a memory care unit. Even there, she was constantly in danger of falling. We were able to move her home to live with our two families. Hence, the title of my book.

I started to write then so I could share the knowledge I was gaining. I had thought Alzheimer’s Disease was just memory loss. Now I was learning it involved a loss of executive function, personality changes, hallucinations, and loss of bladder and bowel control. If I had known this before, I thought, I would have shown more concern for caregivers. I would have been better prepared myself.

I knew my story would benefit others, but how could I make it readable?

The recently-launched online publishing platform Medium challenged writers to craft “stories.” So I started to work on little scenes describing what was happening under our amazingly large roof. I later assembled these stories and expanded on them to make a full-length memoir.

This technique seems to have worked. Readers have told me Bringing Mom Home is “a page turner.” They thank me for expressing the real-life difficulties of caregiving, and the mixed feelings they have toward their parent or spouse. I’ve given them permission to admit they don’t always feel loving, that they’re sometimes angry, resentful and hurt. They seem relieved to read that someone else has blown it, failed to really love a loved one, and experienced ambivalence.

Not everybody caring for a person with dementia has always agreed with their loved one. But now they can’t have discussions anymore. They can’t disagree or express disapproval. A person with Alzheimer’s Disease is incapable of changing. For example, my mother was prejudiced against people of color. Dementia made her lose her filter. Sometimes she made hurtful remarks, so I learned to ignore and redirect, and to apologize for her. That’s another thing you don’t know till you’ve experienced it yourself.

Readers have told me they appreciate the book’s eternal perspective. I’m a Christian, and sort of a Bible nerd. The beliefs I express in the story are 100% my own, and they deeply informed my approach to caring for Mom. God answered my prayers specifically and, perhaps more importantly, changed my heart. I had been in the habit of judging my mother, holding her at arm’s length, and hoping my good deeds would take the place of the love I didn't really feel. God helped me eventually to love her from my heart. I want caregivers to hope that good can come even in their difficulties. I want them to see their lives in light of eternity, because the day-to-day is so hard.

Short Bio:

Susan Soesbe grew up all over the US, as her father's military career took the family from North Carolina to California, to Missouri and back to California again. Mr. Flower, her sixth grade teacher, stoked the creative fire in the entire class using "ten minutes of talking," improvs, and blank books in which students were encouraged to write stories whenever they felt like it.

Susan married a man from Brooklyn, and homeschooled their four children for twenty-five years in Northern New Jersey. Following a divorce, she returned to California to help her sister care for their mother, who had been busy developing dementia when they weren't looking. It forced Susan to rethink everything. This journey is detailed in her first book, Bringing Mom Home: How Two Sisters Moved Their Mother Out of Assisted Living to Care For Her Under One Amazingly Large Roof. Her goal is to encourage caregivers of children and elderly people by reminding them that their work has eternal significance.

Susan writes from a Christian perspective and is interested in seeing how the Bible connects to all areas of life. She is based in New Jersey and Pennsylvania and is pursuing a career as a teacher of English to speakers of other languages.

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Wednesday, September 26, 2018

Meet Frank Morelli, author of "No Sad Songs"

Reposted with permission from AlzAuthors.com

By Frank Morelli

The concept for No Sad Songs had been building since my high school years. Back then, I was living a pretty charmed life. I went to school, played sports, and lived on a nice, suburban street. My life was about as “normal” as any teenage life could be.

Then we started noticing changes in my grandfather. Little things. Like, he’d forget to send birthday cards which he’d been known to send early, or he’d lose his keys or forget an appointment. Then it seemed like we went to sleep one night and woke up the next morning and my grandfather was this completely different person; one who needed assistance just to get through the daily tasks of living.

That assistance came in the form of my father, a man who worked full time and dedicated every other waking second to keeping my grandfather out of a nursing home. He did a good job of masking the toll it was taking on him, but he could never hide it from me. And although I never said it to him, I couldn’t get past the thought: what if it had been me? What would I have done if my father hadn’t been around to absorb the family responsibility before it ever spread in my direction? How would I have responded? Would I have survived?

My protagonist, Gabe LoScuda, was born directly out of these questions. His story was a way for me to explore the same puzzling thoughts many of us have when our loved ones begin to become unrecognizable to us.

My grandfather battled Alzheimer’s for eight long years, which is not an insignificant amount of time in anyone’s life. What it meant for me was that I watched my grandfather deteriorate for about twenty-five percent of my life. There’s a real sense of helplessness and loss that pushes down on you when you watch a slow deterioration like that. At the same time, there’s an overpowering weight of responsibility that drives most caregivers to keep pushing on no matter the price.

These personal experiences made me think about how many other people in the world have been affected by the disease just like I had, and how many would continue to have their lives changed forever in the future. This “future” part of the equation is what ultimately led me to target my story at young adults, because the problem is not getting better or even slowing down.

In fact, the Alzheimer’s Association estimates almost a quarter of a million people will be diagnosed with Alzheimer’s or another form of dementia in the next year alone and that over fifteen million Americans are currently providing unpaid care for people with Alzheimer’s or other dementias. The youth of our society will, unfortunately, not be spared from the horrors of this disease. That fact is seemingly inevitable.

It is my hope that young readers will finish No Sad Songs with a new respect for what it takes to be a caregiver, and an understanding of how intertwined these duties become in the lives of people fighting on the front lines of a growing health dilemma that is rapidly approaching epidemic levels. And I want them to be inspired to become champions in the fight against this terrible disease so that future generations will never have to watch their loved ones disappear right before their eyes.

I’ve already received some glowing feedback on the novel since its release in February. I’ve been stopped on the street, in bookstores, and even in the hallways at the school where I teach by people who’ve had their own experiences caring for loved ones with Alzheimer’s. Each time, they quote back to me lines and events from my story that resonated with them, and we share common experiences that help us feel like we’re not alone in the fight, which is another goal I had when writing the novel.

 
The book has also garnered some glowing blurbs and reviews that make me feel like my intended purpose for writing it has landed with my readers.

I hope you’ll have a chance to read No Sad Songs or to pass it along to a young adult reader you think would benefit from its message. For more information about the novel, please visit my publisher’s website at Fish Out of Water Books or give a listen to this free podcast with me in conversation with NYT Bestseller, Charlie Lovett. You can also connect with me on Twitter (@frankmoewriter), Facebook, Instagram, or on my author page at www.frankmorelliwrites.com.