Welcome Vanessa K. Williams-Harvey, author of “I Remember”

Reposted with permission from AlzAuthors.com

by Vanessa Williams-Harvey

It took years of silence for me to come to terms and let it all out. Everything came to an abrupt halt in August of 2015. On that painful and dark day, our mother was ultimately placed in a nursing facility. We continue to struggle with that painful decision. My personal guilt, frustrations and regret plagued my soul to the point of endless days and restless nights. I was able to find relief when I pulled out my tablet and began to jot down everything that had been swirling around in my head.

I started writing about the good times; there were a few. The more I wrote, the more I relaxed and I could finally exhale. I used words to breathe life into the dark reality I suppressed for far too long, finding a voice in writing that I wasn’t quite comfortable with verbalizing. I felt incapable of being accountable to myself, let alone anyone else.

“I Remember” is a candid and brutally honest glimpse of what my family and I experienced on our journey with Alzheimer’s. My writing is a deep dive with frank details about some tough and challenging times, as we struggled to communicate and collaborate with one another. It took a lot of time for me to realize that I wasn’t the only one hurting. The very same pain that was ripping at my heart and head was also wreaking havoc on each and every member of our family in a very distinctive way.

As I talked with friends and colleagues about the difficulties we were having as a family, I was amazed by the number of other families being torn apart by a crisis that ultimately led to family conflict. This realization gave me vigor and purpose, while it helped open my eyes to the fact that we are not alone. Although we lacked control over many things that were happening around us, we eventually learned that we did have control on how we would emerge from the ordeal. Our family learned a tough lesson the hard way.

Unfortunately, families in conflict while in the midst of a crisis are a part of everyday life. When emotions run high, anything can happen. It was deeply troubling to watch everyone I loved slip away. It was almost as difficult as watching Alzheimer’s steal our beloved mother.

Our family wasn’t ready, willing or able to function when Alzheimer’s reared its ugly head. “What would mother do?” Mother would hold herself accountable and pay her dues to herself–first. By dues, I mean DUES –Do better, Understand better, Expect better, Serve best! It’s what I decided to do and our family is in a much better place today.

I Remember was released in June 2017 and is about a family in conflict, while in the midst of a crisis. Our family’s crisis was and is Alzheimer’s. Just when we thought all hope was lost, we mustered up the energy to fight for our mother, fight for our integrity and fight for our family. Only then were we able to transition from victims to victory.

About the Author

Vanessa K. Williams-Harvey is a life-long advocate for setting high standards and helping others to achieve their life purpose through self-awareness and proper planning. She is a registered nurse by profession and currently serves as a Clinical Informatics Manager. She is also an adjunct faculty with a local college. In these roles, she has the ability to connect with many diverse people and empowers them to thrive in an ever-changing world.

The book, I Remember is about her family’s journey when its matriarch is stricken with Alzheimer’s disease and how this crisis almost destroyed everything their mother had spent a lifetime building. Only with time, acceptance, forgiveness and faith were they able to move from victims to victory. Every family faced with a crisis is challenged and tested in ways that exposes vulnerabilities.

Vanessa is an advocate for Alzheimer’s awareness and serves as a co-chair for the Louisville area Walk to End Alzheimer’s. She is married to her husband, Mark Harvey, and they are the proud parents of four grown sons and a dog, Maxx. They both are active members of Burnett Avenue Baptist Church in Louisville, Kentucky.

The time is now to strive for personal acceptance and satisfaction by paying DUES — Do better. Understand better. Expect better. Serve best!

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Website https://www.irememberdues.com/

Email address irememberdus@att.net

Meet Tracey S. Lawrence, author of "Dementia Sucks, A Caregiver's Journey With Lessons Learned"

Reposted with permission from AlzAuthors.com

By Tracey S. Lawrence

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

Stop working

Spend money like you’re drunk

Spoil your kids and grandkids

Do all the stuff you always dreamed of

Eventually, gently, die in your bed at home

Cherubs lead you to heaven’s gate

Cue heavenly choir

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

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

Mom lived independently in Florida, with regular interventions from my husband and me. By 2009, it was becoming clear that Mom couldn’t live on her own any longer. She came to live with us in northern NJ.

I loved my mother, but we had a contentious relationship. She was still the person who drove me nuts when I was a teenager, but now I couldn’t hide from her in my room. She could burn my house down.

In October 2010, I took Mom back to Florida for one last visit to her apartment. It was difficult being in that dusty museum, still brimming with reminders that Dad was no longer there. On that trip, I took refuge in writing. And I decided to blog, so others might learn from my experiences.

By the time my mother died in April 2015, I had 600 followers. And I stopped needing to write.

A year later, I revisited my writings and found myself enjoying them as a reader. I realized the book I had been asked by so many to write was already written. It just needed some polish.

And I had time to polish it, because my husband, Bob, got sick New Year’s 2017 and I wound up caregiving HIM for 5 months. When I couldn’t sleep, I worked on the manuscript.

Bob recovered, and I committed to getting my book published. With encouragement from my media-savvy millenial niece, I finished the first draft. I researched, found someone to help me, and got a publishing deal in July 2017.

The response to my book has been amazing. People tell me they can’t stop reading it, and it makes them laugh and cry.

And that was my intention. I wanted to invite people to read something engaging and amusing, so they would learn without effort. I’ve been thanked. I’m hopeful that my message will resonate with many others and save some lives. And that gives me the greatest feeling: that I am making an impact that will encourage more mindful, healthful caregiving, and that people will be more willing to have uncomfortable conversations sooner.

Purchase Dementia Sucks

About the Author 

Tracey S. Lawrence is an author, educator, innovator, disruptor, and entrepreneur. Her journey as a serial caregiver led her to create Grand Family Planning, LLC, a comprehensive multigenerational family coaching and support system. Tracey shows clients the power of being proactive in light of the certainty that illness and death will be a part of every person’s life. She saves lives and legacies in a climate which is focused on lengthening human lives without regard to quality of life. Her team-based approach simplifies a daunting and complex process. Tracey’s book, “Dementia Sucks,” was officially released by Post Hill Press on May 15th, 2018 and is available from Amazon, Barnes and Noble, and fine booksellers everywhere.

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Meet Jessica Bryan, author of “The Memory Keeper”

Reposted with permission from AlzAuthors.com

by Jessica Bryan

I am a writer. That’s difficult to say when I’m so busy being a caregiver for my mother who is 99 years old and has had Alzheimer’s for 15 years. Mom lives with us. She is in advanced stages now, but was exhibiting signs of Alzheimer’s even while my husband and I cared for my father, who also had Alzheimer’s. No one…NO ONE is prepared for this! There’s no caregiver’s manual that tells us how to do this job.

I decided that as a writer it might help others to write about caregiving in the non-clinical, in the trenches, personal experience, kind of way. I have found ways to help myself out of my depression, anger, denial, impatience, sadness, and frustration. I’ve discovered so many things to help me through the most difficult job I have ever experienced. How could I do anything BUT write about this to help others?

 

My latest book, The Memory Keeper, is the fourth in a series of our journey and experience dealing with this devastating disease. It was a cathartic process to share my words, my thoughts, my emotions. They are sometimes raw, sometimes irreverent, often loving. I am resolved and accepting of what is to be, in a philosophical kind of way; but I also see the humor in some of the events that lead us there. Because of my writing style and the way I deal with the often taboo subjects (that one simply doesn’t discuss in polite society!) many others have written to me thanking me for my candid discussion of these difficult issues. One reader who attended a book signing proclaimed that my books were like her own personal therapy sessions. Many have thanked me for giving them permission to laugh through their tears.

In The Memory Keeper, I take it upon myself to record and retain the legacy that my mother leaves as I grapple with my own emotions and difficulties of caring for her. Her memories are lost…imprisoned in the disease-ridden brain that doesn’t allow for thoughts, speech or even physical control. I alone must pass down the family stories. I alone must chronicle the life of the wonderful, beautiful, elegant, vibrant woman who used to reside in the body that sits quietly now in our family room staring at the television without understanding. The weighty responsibility of caregiving reminds me that while we are still able we must make the most of each moment. We must embrace the opportunities when we can to share stories, to ask questions, to spend time with each other, and to cherish life while we can. I am resolved…yes. It is too late for tears. It is time to smile about my mother’s life well-lived.

Purchase The Memory Keeper

About the Author

Jessica Bryan lives in North Carolina where she is a real estate broker and an active advocate for caregivers and care receivers. Jessica has written all her life, but during the past few years she began writing full-length books, including fiction and non-fiction, books for young adults, and some wonderful Juvenile action-adventure books. Her interest in writing about caregiving began when her mother came to live with her and her wonderful husband, Skip. Jessica loves to laugh and claims that her sense of humor shines though all of her books regardless of the subject matter.

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Meet Robin Gail, author of “Dementia or Alzheimer’s?”

Reposted with permission from AlzAuthors.com

By Robin Gail

When my husband and I began the long journey taking care of my mother, we had no idea what to expect. We had no experience, knowledge, or help from anyone. When we first suspected Mom was ill, I began research how to help her travel through the relentless disease of Alzheimer’s. I found quite a number of books, but they were most often written from a medical point of view.

After my beloved mother died in ’09, I felt a strong urge and need to help others going through what we had gone through with caregiving. I wanted to write a book from a personal point of view, a book full of tips and ideas from someone who had actually traveled this road with their ill loved one. I felt very motivated to try to ease the burden that I know from firsthand experience others feel when being a caregiver.

I wanted to write the book shortly after Mom’s death, but it was too difficult to relive everything so soon after experiencing our caregiving journey. So, as I recalled things we did, I would jot them down on Post-it notes and put the notes away for a later time when I knew I would be ready to write.

In my book, Dementia or Alzheimer’s? I outline many methods and techniques we used to attempt to give Mom’s life (and ours) some semblance of normalcy. Much of it was trial and error, but for the most part, things were much easier for Mom, as well as us.

I have received many thanks for writing this type of book. People have told me numerous times there really is not a good book from a hands-on caregiver that is so personal and chock-full of helpful information and resources. The feedback from others is phenomenal. The reviews on Amazon are excellent. My book ranks quite high on Amazon, reaching an Amazon Best Seller status in the first week of publication.

There are so many desperate caregivers today with nowhere to turn, many with no one to provide assistance and respite for them. My heart is heavy every time I hear of someone going through this dreadful disease with their loved one. It is my hope and prayer that my book will help to make the journey a bit more tolerable, a bit less stressful and maybe less lonely.

About the Author

Robin Gail grew up in Texas and continues to live there with her husband and beautiful Cocker Spaniel. Robin is certified by the Supreme Court of Texas as a Certified Shorthand Reporter, aka, court reporter, and has owned her own court reporting business for thirty years.

With over thirty years’ experience working in the legal profession, she is now focused on writing and learning to blog. Robin perseveres to accomplish her goals and realizes the importance of honesty and integrity in reaching those goals.

She is delighted to have her first book, Dementia or Alzheimer’s? published. Robin has always been extremely dedicated to the task at hand and works hard to help others in need.

In her spare time, she enjoys gardening, playing the piano, cooking, photography, reading both fiction and non-fiction, and writing.

www.justperfectlyimperfect.com

www.robin-gail.com

robin@robin-gail.com

Facebook – Robin Clark Samrow

Twitter.com/RobinGailSamrow

Pinterest.com/robingailsamrow

Linkedin.com/in/robingailsamrow

Meet Jacqueline Marcell, author or "Elder Rage"

Reposted with permission from AlzAuthors.com

I never dreamed I’d have to give up my television career when I was thrust into caring for my challenging father and sweet mother. The experience was incredibly heart-wrenching, but once I finally figured everything out medically, behaviorally, socially, legally, financially, and emotionally, I became obsessed with writing my first book “Elder Rage”(with humor to make it palatable), and a passion to help others avoid the pitfalls I so unnecessarily experienced.

For eleven years, I pleaded with my obstinate elderly father to allow a caregiver to help him with my ailing mother, but he always insisted on taking care of her himself. Every caregiver I hired soon sighed in exasperation, “Jacqueline, I just can’t work with your father. His temper is impossible to handle and he’s not going to accept help until he’s on his knees himself.”

When my father’s inability to continue to care for my mother nearly resulted in her death, I immediately flew from Los Angeles to San Francisco to step in, despite his loud protests. It was so awful to have my once adoring father be so loving one minute and then call me horrible names and throw me out of the house when some trivial little thing set him off. I took him to several doctors and even a psychiatrist, only to be flabbergasted he could act so charming when he needed to.

Finally I stumbled upon a thorough neurologist who specialized in dementia, and put my parents through a battery of blood, neurological, memory tests, and PET scans. After ruling out numerous reversible forms of dementia and evaluating their many medications, he shocked me with a diagnosis of Alzheimer’s in both of my parents – something all their other doctors missed entirely!

I realized I’d been coping with a disease that appears to come and go, and that my father was trapped in his own bad behavior of a lifetime of yelling to get his way, which was coming out in intermittent over-the-top irrationality. I learned that demented does not mean dumb (a concept not widely appreciated), and he was still socially adjusted never to show his Mr. Hyde side to anyone outside the family. Conversely, my mother was as sweet and lovely as she’d always been.

It is quite a roller coaster ride how everything finally got worked out, but it also led me to the motto I have shared ever since: When life takes you to your knees and nearly destroys you, search for the Silver Lining because those hardships may also lead you to your highest purpose, passion and reward.

Purchase ” Elder Rage”

About the Author

Since I had never written anything but a postcard and self-published, I am honored “Elder Rage” became a Book-of-the-Month Club selection, a caregiving book first. It received 50+ endorsements and 550+ 5-Star Amazon reviews, became required reading at numerous universities, and was considered for a film. It’s in print, audio, eBook, and autographed via PayPal. 

Soon I was invited to speak at conferences and I adored being able to personally help so many caregivers. Eventually I became an international speaker on Alzheimer’s, and then a few years later unfortunately a speaker about my own invasive Breast Cancer. I also discuss Caregiver Stress and Illness, Elder Abuse, and Alzheimer’s Termed Type 3 Diabetes. To book a speaking engagement visit my website.

Connect with Jacqueline Marcell

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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!

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.

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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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.

Follow Malia Kline

https://sisterlyshove.com

https://www.facebook.com/MaliaKlineAuthor/

http://maliamania.blogspot.com/

https://twitter.com/Malia_Kline

www.instagram.com/maliakline/

Buy the Book Links:

Amazon 

https://www.kobo.com/us/en/ebook/sisterly-shove

https://play.google.com/store/books/details/Malia_Kline_Sisterly_Shove?id=uU9aDwAAQBAJ

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.

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https://www.facebook.com/Finding-the-Light-in-Dementia-1546533208734437/

https://www.linkedin.com/in/dr-jane-m-mullins-a074bbb9/

https://www.maturetimes.co.uk/tag/jane-mullins/

www.findingthelightindementia.com

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.

Social media links

Twitter: https://twitter.com/SusanSoesbe

Blog: http://susansoesbe.com/

Goodreads: https://www.goodreads.com/author/show/17794938.Susan_Soesbe

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.

Support the Caregiver: 9 Strategies for Turning the Stress of Alzheimer's Caregiving into Transformational Growth.

By Dr. David Davis and Joko Gilbert

As anyone who has walked in our shoes knows, there is a vast hole in the heart of a caregiver who, by a twist of fate, must tend to the needs of a Loved One suffering from Alzheimer’s. A hole that has the power to reshape and redefine who we are, for the rest of our lives.  So, if we can approach this incredibly difficult challenge with the awareness that caregiving can be an opportunity for healing and growth, it allows us to step back from the precipice, where frustration, sadness and exhaustion await.

My sweet wife Linda, was diagnosed with Early Onset Alzheimer’s in 2009 at the age of 51 years old.  She survived for 7 years until her death last year. We are simply not given the tools and strategies to deal with the burden of caregiving and the toll it takes on every aspect of our lives.  Having practiced chiropractic for a many years, I had a strong grasp on the principles and practices of healthy living, which was the fuel for my desire to come through this experience as a better version of myself, and to embrace the profound lessons as a caregiver, allowing me to more fully integrate  into the world.  

The thought that we can bring insight into the community of caregivers to ease our collective burden, as well as providing inspiration and information to elevate the conversation from one of support to one of empowerment, was the motivation to create our book, Support the Caregiver, 9 Strategies for turning the stress of ALZHEIMER’S CAREGIVING into Transformational Growth.

Joko Gilbert, a dear friend of mine and Linda’s, was extremely close to the whole experience of taking care of my wife during her illness, and taking care of me, I might add, during the worst of it.  It is from our shared experience, that we were determined to give voice to the most valuable lessons gleaned from those eight years, along with the strategies for emotionally prospering at a time when exhaustion and despair taunt us.

Out of our passion to share our insights, we have met with many individuals and groups in the Alzheimer’s community.  Each meeting, each conversation is met with enthusiasm and the desire to explore more deeply the strategies that we have assembled.  As a result, the Alzheimer’s Association has invited us to speak on a number of occasions, to groups small and large, as well as an invitation to be a speaker at the national Caregivers Conference in Connecticut this on April 19th.  

The feedback has been strongly favorable, as we watch a tide of change in the caregiving community towards the very potent idea of empowerment.

Writing this book allows us to articulate and crystalize the most important and valuable lessons caregiving has taught us. It affords us the opportunity to reinvent ourselves in a way that makes our lives richer for having gone through the experience.

Speaking as a caregiver, I can think of nothing else that is as valuable and gratifying than reclaiming our sense of self, and the peace that accompanies it, which are the cornerstones to living a healthy, purposeful and joyful life. 

Dr. David Davis

I am recently retired from chiropractic practice after 34 years. My passion continues to be educating people on the principles of health and healing, writing, reading and travel, because I am always curious about what's around the next corner or beyond the next hill. 

Joko Gilbert

I was born and raised in a tiny village in Austria and traveled the world working as a fashion model. In the 80’s I moved from London to New York City to continue my career. I fell in love and settled down (and gave a lot of guardian angels a much needed break from watching over me), got married and had two delicious suns (not a typo). I’ve also worked in my husband Frank’s chiropractic practice assisting our patients with weight loss, exercise and healthy food and life choices and am a certified Reiki practitioner. Not in a million years could I have imagined that my friend Linda’s diagnoses with Early Onset Alzheimer’s would turn my life towards working with caregivers in the Alzheimer’s community and not in a million years could I be more honored to do so. Caregivers are unsung heroes! 

David@SupporttheCaregiver.com 

Joko@SupporttheCaregiver.com 

Facebook: https://www.facebook.com/SupporttheCaregiver/

Twitter: https://twitter.com/JokoGilbert

Instagram: https://www.instagram.com/supportthecaregiver/

LinkedIn: https://www.linkedin.com/company/11548686