AlzAuthor Leah Stanley on Surviving Double Dementia Duty: A Story About Two Loved Ones Needing Care Simultaneously

Stanley Canva

By Leah Stanley

I began writing Goodnight, Sweet: A Caregiver’s Long Goodbye in 2001. For me, committing the story to print was a cathartic experience following the deaths of my grandparents two years earlier. Edward Meade had battled an unspecified dementia while his wife Clara was afflicted with Alzheimer’s. As their designated caregiver, a role which I had gladly—and sorrowfully—taken on, I walked alongside them down that tedious road while loving, caring for, and protecting them.

Every afternoon when my then almost two-year-old son would go down for his nap, I would sit at my computer and write diligently, reliving the moments which, when put together, told the full story; I would laugh and I would cry as I remembered the decisions and recalled the words, reactions and facial expressions of those around me. I felt it was imperative that my experience as an Alzheimer’s/dementia caregiver not fade away with time, but that it be shared because I came to realize there were so many others following that same winding trail I’d walked, and I remembered how I was always encouraged when I could talk with someone who had been engulfed in a similar circumstance. I believe it’s one of the ways God designed us, being able to meet on the common ground of shared events.

Following the birth of my daughter in 2002, the manuscript was shelved for several years as I took on the role of full-time mom. By spring 2016 I began to sense it was time to re-enter the story-telling mode and finish the work I had started fourteen years earlier. Additionally, I was spurred on by the sheer number of people I encountered who were facing the same issues I’d dealt with myself. I think I was strangely astonished when I had to acknowledge the disease had not “died” with my grandparents; it had marched through the years with aggression, and a shocking number of people had been devastated by it.

Goodnight SweetThe book details my entire experience from the moment I received the first phone call to settling their estate nearly four years later. I have consistently heard people say my writing is very transparent as I share the range of emotions which accompanied caring for my grandparents; several readers have stated they couldn’t put it down—encouraging words for any author to hear!

When the book was complete, I began hand-picking readers to endorse it—I chose a medical social worker, two former caregivers and a physical therapist. Their responses were overwhelmingly positive, and the medical social worker even said the book is an excellent resource for people who are anywhere on the path of providing care for a loved one.

It is such a blessing to know my grandparents will be remembered, and our painful experience wading through Alzheimer’s and dementia may be able to guide others to the realization that there is hope, and caregivers do survive.

Goodnight, Sweet: A Caregiver’s Long Goodbye was released on March 1, 2019.  Purchase an eBook or paperback copy on Amazon or at Barnes & Noble.

About the Author

Stanley

Leah Stanley was born in Memphis, Tennessee, where she grew up and attended college, meeting her husband, Chris, during their freshman year. She earned a bachelor’s degree in Journalism from the University of Memphis and has a background in corporate communications and freelance writing. She lives in Houston, Texas, with her husband, son, daughter, and their boxer/beagle rescue dog Brooke.

Connect with Leah
Facebook
Twitter
LinkedIn

* * *

For more vetted books about Alzheimer’s and dementia please visit the AlzAuthors Bookstore.

AlzAuthor Julie Bigham Shares How to Create Joy Filled Visits in the Midst of Alzheimer’s

bigham canva 2

By Julie Bigham

My passion for bringing joy to the lives of seniors began at an early age, when my gramps encouraged me to entertain at his Senior Center. Fifteen minutes of stand up, egged on by applause from the crowd, ignited a spark of love in my heart for the older generation. Thirty plus years later that spark has erupted into a full flame of passion for providing support to professional and family caregivers caring for loved ones living with Alzheimer’s.

Through my work experience as an activity professional, it became evident to me that providing high quality, compassionate care for those living with Alzheimer’s takes a village, and family engagement in any setting is vital. Families can become overwhelmed with doctor visits, medication changes, increasing care needs, and care plan meetings, not to mention the emotional stress. With everything they juggle, families can forget the importance of spending quality time having fun with their loved one, often spiraling into isolation and depression.

While some family caregivers spend hours visiting a loved one, others hope to remember them as they were. Both situations are understandable, as people find different ways of coping with the stress that accompanies an Alzheimer’s diagnosis. For the benefit of both, I set out to create a product that can help families maximize the time they spend with a loved one to assure that visits are filled with positive interaction and fun, thus eliminating common feelings of guilt and sadness.

bigham coverThe Joy Filled Visits Kit, completed in 2015, is filled with tools I found most helpful in my career, and includes an easy-to-read manual. The kit helps families create a simple plan for each visit to keep their loved one engaged in the life of the family for as long as possible. At the encouragement of a librarian, I reformatted the kit into book form to give easier, more affordable access to the same helpful information to people all around the globe.

Using the book as a guide, Joy Filled Visits also offers a 4-session class for caregivers – walking participants through a review of Alzheimer’s, the symptoms, the challenges those symptoms can create for engagement, and tips for overcoming those challenges.

Here are reviews from a few participants:

“The Joy Filled Visits program gives an encouraging, fresh approach filled with ideas to interact with your loved one in a fun, personal way.”

“Having a new expectation and new set of tools to communicate with, has [given us] … much happier days.”

“I took care of my mom for years and felt very lost as to how to help her. After taking Julie’s classes, I feel I am better able to help her; and if she is agitated, I am able to defuse the situation and give her a happier time.”

Purchase Creating Joy Filled Visits in the Midst of Alzheimer’s

About the Author

bigham photoJulie Bigham, NHCT, began her career as an activity professional in 1993. In 2016 she dedicated herself full-time to Joy Filled Visits, LLC, providing support and motivation for caregivers through training, consultation, and public speaking. She hosts the Joy Filled Visits Memory Café in Matthews, NC, and provides additional support through a free monthly newsletter. She is also a Nursing Home Certified Trainer for Second Wind Dreams®/Virtual Dementia Tour’s NC Grant project.

Connect with Julie Bigham:

email: julsbigham@yahoo.com
Website
Facebook: Joy Filled Visits, LLC
Twitter: Joy Filled Visits @julsbigham
Amazon: Creating Joy Filled Visits in the Midst of Alzheimer’s

***

For more vetted books and resources about Alzheimer’s and dementia please visit the AlzAuthors Bookstore. Reposted with permission form AlzAuthors.

Krysten Lindsay Hager Writes Dementia -Themed Fiction for Young Adult Readers

Dating the It Guy Canva

By Krysten Lindsay Hager

I started writing Dating the It Guy as a romance between a high school girl and the popular senior son of a senator, but I also wanted to include a storyline of having the main character deal with her grandpa’s recent dementia diagnosis. My grandfather moved in with us when I was Emme’s age because he could no longer live on his own. I decided to write about it years later just to get it out. In fact the first time I read a section of it to my mother, she left the room because it was too much to deal with. It’s tough to look back at memories like that sometimes.

So I finished the book, but set it aside for a while. Then two years ago, there was a pitch contest online and I decided to see if there would be any interest in this story. My publisher said she’d be interested in seeing it. At that time I had only published middle grade novels with her and wasn’t sure she’d want a young adult novel from me—after all there are a lot of publishers who aren’t fond of genre hopping. I remember when I sent it to my publisher I mentioned I hoped that this book would help someone else. My publisher wrote, “have I told you I love your writing?”

DatingtheItGuy500x750During the final editing process, I had my mom read the manuscript and told her, “I’m not sure you’ll like this one because it’s very personal, so be warned.” I’ll never forget her calling me and saying it was her favorite book I had written and she felt I handled those scenes with the grandpa with such sensitivity and love. She loved the sense of love and family in it and how I handled it with dignity and that meant so much.

I basically have a peace about what I wrote, but it was very hard putting this book out there. You’re taking a very personal experience and opening it up to criticism from strangers who haven’t walked in your shoes. What made it worthwhile was that the feedback on it has been wonderful as people love the humor and the family bonds. I think having the humor in it helps as that gets you through difficult times and it shows that you can continue to laugh even while going through a storm.

My main goal was wanting to show that dealing with dementia can deepen a relationship and you can love someone deeper when taking care of them. It was hard being one of my grandpa’s caregivers starting as a sophomore in high school until I was well into college, but I loved spending time with him.

Along the way,  I realized that if I went through that as a teen, then there were other teens who had taken on a caregiver role (along with their parents) to a family member. I wanted to give those teens a book that understood what they were going through. Sometimes knowing you’re not alone in a tough situation can help so much and I hope I did that for my readers.

Purchase Dating the It Guy

About the Author

author photo

Who knew all those embarrassing, cringe-y moments in middle school and high school could turn into a career? And who would have thought that daydreaming in math class would pay off down the road?

​Krysten Lindsay Hager writes about friendship, self-esteem, fitting in, frenemies, crushes, fame, first loves, and values. She is the author of True Colors, Best Friends…Forever?, Next Door to a Star,  Landry in LikeCompeting with the Star (The Star Series: Book 2), Dating the It Guy, and Can Dreams Come True.

Her debut novel, True Colors, won the Readers Favorite award for best preteen book and the Dayton Book Expo Bestseller Award for childen/teens. Competing with the Star is a Readers’ Favorite Book Award Finalist.  Krysten’s work has been featured in USA Today, The Flint Journal, the Grand Haven Tribune, the Beavercreek Current, the Bellbrook Times, Springfield News-Sun, Grand Blanc ViewDayton Daily News and on Living Dayton. ​

 Follow Krysten Lindsay Hager

Website

Instagram

Facebook

Pinterest

Twitter

* * *

For more vetted books about Alzheimer’s and dementia please visit the AlzAuthors Bookstore. Reposted with permission from AlzAuthors.

 

 

“Life on Planet Alz” – An Alzheimer’s Caregiver Shares His Story

Cohen,JackFeaturedImage

By Jack S. Cohen

This is a true story about coping with my beloved wife’s devastating diagnosis of Alzheimer’s disease (AD), the terrible scourge of our age.  In general, people are living longer and diseases of the aged are becoming more prevalent. The major neurological disease of the aged is in fact AD. Whenever a person is diagnosed with AD, their spouse automatically becomes their primary carer and unwittingly also becomes a prisoner of the disease.  

There have been many excellent books and descriptions of AD and its ravages upon the minds and lives of people, so why write another account?  Each case of AD is unique and two novel aspects of this account are: the focus on the way that AD imprisons both the patient and their spouse in a constant process of deterioration, and the inclusion of an almost daily journal describing raw incidents that can be enlightening for the reader, and especially for the spouse of an AD sufferer.  This illustrates the vicissitudes and the almost total preoccupation that this disease encompasses.

Cohen,Jack _LifeOnPlanetAzI hope that my particular take on this predicament as a spouse of an AD patient can help those who are dealing with this situation or who may have to do so in the future.  It illustrates how the initial shock of the situation gives way to the realization that one has to learn to cope with it, and finally the acceptance that must come with time and experience.  

How to describe memory?  It’s like a landscape where snow has fallen.  At first the surface is white and pristine. But as time goes by people trudge across the field and leave footprints.  Then a cart goes by leaving parallel tracks, and then a car drives along the lane, leaving tire marks. Then the scene gets busier, children on bikes on the way to school or to play leave their tire tracks and women going shopping and so on, until the surface is criss-crossed with memories of what had happened.  The analogy for Alzheimer’s disease is that all the tracks get inter-twined and mixed up and confusing, and then it all starts to melt!

We live on Planet Alz, which is a different planet to Earth. You may think when you see us walking down the street that we look normal, but we are not, we are actually on a different planet.  On our planet the normal rules do not apply. Everything is unpredictable, anything can happen at any moment.

The reaction to this book from family, friends, and the general public has been overwhelmingly positive.   I self-published this book in 2017, but have not widely advertised it; it is available on Amazon.com.

About the Author

Cohen,JackphotoI was born in London, UK, where I received a PhD in Chemistry from Cambridge University.  I moved to the US in 1966 and became a Professor of Pharmacology at Georgetown Medical School, Washington DC.  Upon retirement, I moved to Israel, where I was the Chief Scientist at the Sheba Medical Center, Tel Hashomer. Now I am a Visiting Professor of Chemistry at the Ben Gurion University, Beer Sheva, where I moved to be near my married daughter.

Connect with Jack Cohen  Website  ~  Blog

AlzAuthor Bobbi Carducci Offers Hope to Alzheimer’s & Dementia Caregivers in a New Anthology of Inspiring Stories

Carducci, Bobbi 2

By Bobbi Carducci

Caregivers very often become isolated as the needs of the one-in-care progress. Even well-intentioned family and friends begin to drift away, leaving caregivers wondering if anyone understands what their life has become.

I know that feeling very well. A caregiver for my father-in-law, Rodger, for seven years, I often felt as if the rest of the world had moved on to work and family life, believing my days were easy.

Some questioned how hard could it be to stay at home and cook his meals and take him to the doctor now and then. Surely I exaggerated the difficulty.   

Worse was when I doubted myself. Was I the only one who questioned whether my loved one was faking sometimes? Or wondered why someone I cared about and rearranged my life for was suddenly treating me as the enemy? Did anyone else get angry and lose their temper or was that a character flaw unique to me? Toward the end, after weeks of little sleep and constant stress, when I prayed for it to be over, I questioned my humanity. I didn’t want him to die. I wanted the pain to end. But still, was I the only one holding that silent wish in their heart?

After speaking with caregivers and interacting with them as caregiver support group leader, and through online groups and as speaker at caregiver conferences, I heard many caregivers express the same doubts and fears inspiring me to write my second book for caregivers.

Caregiver You Are Not Alone

Caregiver –You Are Not Alone is an anthology of caregiver stories representing varying ages, genders, and family dynamics all doing the hardest job they ever had to do. Although they may be slightly different from our personal experience, they are our stories too.  

Each story is followed by an essay reflecting on my personal experience and feelings while caring for Rodger, when I felt very much alone.

About the Author

DSC_2388.JPGBobbi  Carducci is a national speaker on the subject of Alzheimer’s and dementia, how it affects entire families and how to Prepare to Care – What Adults need to Know about Alzheimer’s/ Dementia Before and After It Strikes Home. Her first book, Confessions of an Imperfect Caregiver, can also be found in the AlzAuthors bookstore.

Confessions of an Imperfect Caregiver is available on Amazon and through Open Books Press and her website www.bobbicarducci.com.

Follow her on Twitter @BobbiCarducci2

* * *

Reprinted with permission from AlzAuthors.com. For more vetted books about Alzheimer’s and dementia please visit the AlzAuthors bookstore.

AlzAuthor Rosalys Peel Shares her Alzheimer’s Caregiver Story in “Mike & Me”

FeaturedImageRosalysPeel

By Rosalys Peel

Every two minutes someone in America is diagnosed with Alzheimer’s. Most will face this discouraging illness with their wife, husband or partner at their side. And yet the typical “Alzheimer’s couple” has no idea how to make the most of what lies ahead.

This is the predicament my loving husband Michael and I found ourselves in when we discovered that Mike had been diagnosed with Alzheimer’s. Over 35-plus years of marriage we had always dealt with problems together. But now we were advised to start preparing ourselves for the day when Mike would surely be moved from our home to an outside care facility. We simply weren’t ready to accept that.

“I don’t want to leave you and our home,” Mike told me—and so we made a deal. Despite all the scary stories we were hearing about this disease we decided to stand up to Alzheimer’s and defy the statistics as long as possible. Together we would go right on pursuing our hopes and dreams as husband and wife, confronting the disease together in our own home, and living the fullest life possible…for as long as possible.

Mike&Me CoverWriting a book was the last thing on my mind at that time, but I did start keeping a journal. At first I was just trying to record new information and treatment advice from our doctor. But it turned out that journaling became a very empowering and comforting companion for me over the entire nine and a half years that Mike and I dealt with his Alzheimer’s.

My journal was a safe place where I could give words to my worries, concerns and fears. It’s where I logged the frustrations and setbacks that Mike and I encountered, but also where I recorded and celebrated our many victories, large and small. Day by day, my journal chronicled the astonishing power of mutual love, patience, compassion and stay-at-home care. Over time I became convinced that other couples and caregivers might be able to benefit from some of the new approaches Mike and I were learning.

Despite Mike’s illness we eventually exceeded virtually every typical Alzheimer’s expectation. Together, we travelled to several countries, helped care for our granddaughter, maintained our romance, kept Mike on his feet, celebrated every milestone, and found new ways to communicate with our friends, family and each other. We also saved countess thousands of dollars by caring for Mike in the familiar surroundings of our own home right up to the very end.

Mike eventually died, but he died as we all wish to die—with dignity and grace. And not before we had enjoyed nearly 10 full years of life, love and, yes, laughter together.

Gradually, there was the birth of a new idea in me. Looking back to when Mike was first diagnosed I could remember how I had searched the bookshelves in vain for a book that would help couples like Mike and me navigate the Alzheimer’s journey together. Later, I had a chance meeting with an experienced and caring writer who gave me this quote by author Toni Morrison: “If there’s a book that you want to read, but it hasn’t been written yet, then you must write it.”

I took that quote to heart and set out to write Mike & Me as my gift to other Alzheimer’s couples and their families who are just now starting their journey. While the word Alzheimer’s usually triggers pessimistic feelings, Mike & Me is an optimistic book, and for good reason.  It chronicles the changing face of home care among Alzheimer’s couples. And it shows how the astonishing power of love, patience, compassion and stay-at-home care can help Alzheimer’s patients defy the usual statistics and live a longer, fuller, happier life despite this discouraging disease.

Writing this book has been a work of heart, and I know Mike would be happy that what we learned together on our Alzheimer’s journey is now helping other couples, families and caregivers.

About the AuthorPeel_Rosalys_396_culledb

Rosalys Peel is a Registered Nurse, a Lamaze-certified childbirth educator, and a Gottman-certified couples’ relationship facilitator. She teaches classes at Seattle’s prestigious Swedish Medical Center and has been featured on NPR and The Today Show. She remains a tireless teacher, writer and speaker, and a caring advocate for Alzheimer’s couples, families and caregivers everywhere.

 In more good news, Mike and Me has been named a Finalist in the 21st annual Foreword INDIES “Book of the Year Awards.”

Connect with Rosalys Peel

WEBSITE  www.MikeAndMeBook.com

FACEBOOK.  https://www.facebook.com/mikeandmebook/

TWITTER:  @PeelRosalys

EMAIL:  Rosalys@bainbridge.net

**

For more vetted books about Alzheimer’s and dementia please visit the AlzAuthors Bookstore. 

Reprinted with permission from AlzAuthors, the global community of writers sharing their personal Alzheimer’s and dementia stories to light the way for others.

With Recipes, Poetry, and Prose Author Miriam Green Shares her Alzheimer’s Story in “The Lost Kitchen”

Green, Mirian Meme

By Miriam Green

When my mom, Naomi, was first diagnosed with Alzheimer’s I felt relieved. The doctors had finally acknowledged what our family had surmised for almost a year—Mom was losing her memory. Ok, I thought, what now?

Little in our lives changed at first. Mom still rattled around in her kitchen, she was still an avid music lover, conversationalist, and sweet companion. She could maintain her household, and even stay by herself in the evenings when my dad, Jack, was busy. But the signs were everywhere.

There was the day she tried to unlock the front door to her apartment with the wrong key. It didn’t occur to her that she should try another one, or even ask for help. I was waiting patiently on the other side as she jammed that key into the door over and over, swearing in language I had never in my life heard her utter. Daddy rushed from the shower, thinking she’d hurt herself with all the screams. It took a while to calm her down.

What did change dramatically in my life was a commitment I made to visit my parents once a week. I traveled 2½ hours each way by public transportation to be with them. Mostly, I was there for Mom. Those were wonderful mornings. We would do all manner of activities together, ambling around the city, drinking coffee, and enjoying the sunshine. I used those visits to organize my parents’ kitchen and cook them food for the week.

cover 7b Top to Bottom FadeI was privy to Mom’s anxiety over her waning memory. I held her as she cried bitter tears and told me she felt confused. It was the first indication that our roles would soon be reversed, that I was losing my mom by degrees, that the only way forward was a painful decline that inevitably led to death.

It’s been more than seven years now. I’ve learned a few things along the way— to avoid questions in my conversations with Mom; how a person’s gait can define their ill health; that front-closing bras are an Alzheimer’s intimate friend; and how to judiciously use her memory loss for our gain.

I don’t think we can ever be prepared for the strange turns and curves life throws us, but I do know that it helps me to write about them. First came the poetry. Then, what was initially a project I started with my dad as a humorous initiation into the world of cooking and caring for a spouse with Alzheimer’s—we called it “The Man’s Emergency Cookbook”—eventually morphed into its current composition. Thus were born my cookbook and my weekly blog. I didn’t need to be alone in my frustrations, fears and struggles. I could connect with the community of Alzheimer’s patients, their families and caregivers who were only a short click away.

And through it all, I cooked. I took what Mom had taught me when she was still active in the kitchen and used that as a basis to experiment with easy recipes that fed my spiritual and emotional hunger. My book, The Lost Kitchen: Reflections and Recipes from an Alzheimer’s Caregiver, is a combination of recipes, poetry, and prose about my family and how we have shared the demands of Mom’s Alzheimer’s.

About the Author

Green, Miriam headshotMiriam Green writes a weekly blog, The Lost Kitchen,  featuring anecdotes about her mother’s Alzheimer’s and related recipes. Her blog also appears on the ALZ Blog from the Alzheimer’s Association.  Her poetry has been published in several journals, including Poet Lore, The Prose Poem Project, Ilanot Review, The Barefoot Review, and Poetica Magazine. Her poem, “Mercy of a Full Womb,” won the 2014 Jewish Literary Journal’s 1st anniversary competition. Her poem, “Questions My Mother Asked, Answers My Father Gave Her,” won the 2013 Reuben Rose Poetry prize. She holds an MA in Creative Writing from Bar Ilan University, and a BA from Oberlin College. Miriam is a 20-year resident of Israel, and a mother of three. You can find Miriam on Facebook and Twitter at @thelostkichen.

 

* * *

Continue reading