Meet Celia Koudele, author of The Little Book for Alzheimer's Caregivers

By Celia Koudele

The Little Book for Alzheimer’s Caregivers

This book was my legacy for the next generation, putting in writing as much as I could about my experience helping caregivers of dementia patients.

My mother, grandmother and aunt all died from a type of Dementia, mostly Alzheimer’s.

I became my mother’s caregiver after my Dad died of cancer at 75. When my Mom had Neuropathy, the doctor at Mayo’s did a memory test and concluded she too would probably get Alzheimer’s. Even with our family history, we went through that period of denial.

I also went to work at the local Alzheimer’s Association, thinking I would learn more and be there to hear about a cure first-hand before I too possibly developed the disease. I was a Help Line Specialist and learned from over 65 callers a month about the many journeys of Alzheimer’s. My job was to listen, comfort, educate, and try to give them ideas to make their daily life better.

I AM PASSIONATE ABOUT HELPING FAMILIES AFFECTED BY ALZHEIMER’S.

Fast forward several years ago and I realized I had lots of ideas from my own experience of caregiving my mom and helping others. These solutions, experiences, and ideas would die with me if I didn’t share them with others. My goal in writing this book was to help other Alzheimer’s families learn from my experiences and ideas to make their life with Alzheimer’s easier in any way. People don’t know these behaviors can happen, what to do once they have a diagnosis, or how to talk and interact with people with dementia. Ignorance is not bliss. It can happen to anyone.

I knew what it feels like to be exhausted, afraid, and sad because the Mother I knew was slipping away, and I didn’t have the energy or knowledge to make it better. This Alzheimer’s Caregivers book is short and simple. When I began the journey of caregiving, “The 36 Hour Day” was a popular resource, but it was a large book, and by now I was caregiving for my mom and also my mother-in-law, so there was little time to read all of that large book! My book is purposefully “Little” because caregivers are exhausted, busy and need an answer to their problem quickly. It covers the emotions, daily living problems, and the big decisions about placing them in a facility. It is for all of you pretending they “aren’t that bad” while quality time slips away. Denial hurts everyone. There are ideas to cope with anger, bathing, and wandering. Always remember no one is promised forever, we all get one day at a time.”

I often share my books with doctors, people in stores, friends, strangers, and anyone struggling on this journey. No one should have to fight this disease alone with no help or support. I also often find support groups and church groups to speak to and to help with the many facets of this. God Bless them.

I receive feedback from Amazon, social media, and friends who have purchased the book and come back to buy more. Sometimes I give presentations at assisted living centers and support groups and people come up to ask questions and purchase the book.

Social Media:

Website: www.AlzCaregivers.net

Instagram: Alzcaregivers

Twitter: AlzheimersCaregivers

Facebook: www.Facebook.com/AlzheimersCaregivers.info

Karen Kaplan is Back with a Sci-Fi Dementia Novel

By Karen B. Kaplan

Perhaps it is not often that you come across science fiction that is (1) gentle and not full of weapons and nasty robots, and (2) includes a character who is one of the first with dementia to get cured of the disease. There are so many other aspects of reality to ponder, such as how robots might help or hinder grievers, it is a wonder that science fiction writers have not provided more material on such things. (Have you ever noticed that the Star Trek crew does not include a spiritual counselor?) As a healthcare chaplain, I have been curious about what it might be like to be cured of Alzheimer’s or other forms of dementia. Virginia Boyden, financial planner of the main characters, is one of those first lucky persons to be a “dementia returnee.” Virginia shares what it was like to get dementia, as well as what happened on the return trip. A temporary detour to complete health does arise, but Virginia figures out how to handle it.

Perhaps reading about dementia in upbeat fantasy might help us indulge in the comfort and hope that such fantasy can provide. It offers a different perspective, especially when the main characters Gomer and Muriel Ackerman try to grapple first with their financial planner’s decline, and then the issues that arise as she recovers. Here is an excerpt:

“Even a recluse knows that around the year 2056 patients with dementia had become as obsolete as doorknobs. But only a precious few individuals are aware of how the initial returnees from this malady reassembled their minds…

“An interviewer asked Virginia about the first half of her journey, when she was becoming more and more demented. She reluctantly described this frightening time: ‘I felt like I was a wall, and all the pictures on it and then even the wallpaper fell off, and then the wall itself wore down down down to the insulating material within it, and even that started coming apart. And then all the stuff out there coming at me such as sounds and being moved around and drinking coffee just passed through that material as it became softer and softer, and thinner and thinner. It was like everything was passing through or around me and I was not sending anything back out… But make no mistake: now I’m a solid colorful wall, decorated with photos and designs, and with great big bay windows that open to a field of newly blooming sunflowers waving at me.’”

About the Author

Karen B. Kaplan has an unusual background for a science fiction writer: she's a hospice chaplain and instructor of English as a Second Language. She has always wanted to write sci-fi with a compassionate touch, rather than portray the wars writ large and nasty robots found in dystopian scenarios. In her most recent book, Curiosity Seekers, Kaplan cooks up a blend of irony and an exploration of spiritual values such as privacy and the need to be heard. She enjoys surprising and entertaining readers by finding humor in the most unexpected places. In one of these interrelated stories, a grieving man tries to circumvent his grief by ordering up a robot that looks and acts like his wife. But complications ensue when her sexuality as well as other traits differ from the “original” mate. While serving hospices in New Jersey and New York for seven years, Kaplan visited over 4,000 patients and their families from all walks of life. That is when she wrote her first book, Encountering The Edge: What People Told Me Before They Died. Even in the context of hospice Kaplan is always alert to quirky anecdotes. “I always have an eye out for it,” she says. “I remember a funeral where the deceased’s niece looked at the grave and said, ‘Auntie, you sure have been fussy about apartments. But you’d better be satisfied with this one, because it’s gonna be your very last.’” When she was ordained in 1992, Kaplan became one of the first 200 female rabbis worldwide and earned board certification as a healthcare chaplain in 2007.

Follow Karen. B. Kaplan

Blog: Offbeat Compassion

Twitter: @chaplainkkaplan

AlzAuthors

Purchase Curiosity Seekers on Amazon

Meet Rebecca Thesman, author of Sometimes They Forget

By RJ Thesman 

How a Long-Distance Caregiver Learns to Cope

When the memory thief first visited our family, we didn’t think much about it. Mom was, after all, fully capable of caring for herself and she was in good health.

But gradually, ever so subtly, the memory thief began to take from her the basics of life: where she stored her pots and pans, how to read a recipe and produce the finished product, how to find her way home from the grocery store.

The resulting prognosis surprised and challenged us. Alzheimer’s Disease plus an inoperable brain tumor – no cure, no solutions. Mom could no longer stay in her home.

My siblings and I worked together, hoping for an easy transition, but Mom has always been an independent, stubborn woman. It was the doctor who had to be the bad guy as we took away her car keys, “The doctor says you can no longer drive,” then as we found a beautiful assisted living facility, “The doctor says you cannot live alone.”

We are now four years into the process. Assisted living has become Mom’s new normal and we are prepared for the final stages of Alzheimer’s Disease.

How do the children and grandchildren acclimate to this new normal? How can we somehow learn to cope with what has happened to the matriarch of our family?

As the long-distance caregiver, I found my coping skills through writing: filling my journals, using my blog posts for therapy and writing the Reverend G trilogy –http://amzn.to/1rXlCyh.

But I needed more of a mechanism to record the research I found and the practical tips we learned about Alzheimer’s. My background in nonfiction writing and essays provided the perfect medium to help me process my emotions.

So I continued to write, creating an online support group of other caregivers and empathic souls who prayed for my family. Then I compiled my posts into a collection of essays and meditations, designed specifically to provide hope for caregivers.

The result is my new book, “Sometimes They Forget – Finding Hope in the Alzheimer’s Journey.”

From the brief history of our family, to the explanation of how I found hope in the cemetery, to practical tips for caregivers and lessons about patience – “Sometimes They Forget” has become my new forum for describing my journey through this brutal disease.

Within a few hours of the online launch, readers ordered the book, then asked me when it would appear on Kindle, assured me they wanted to write a review. Already, this book has struck a cord with readers who know a caregiver struggling with the Long Good-bye.

My goal is to provide information, but also to be vulnerable enough so that other caregivers will know they are not alone and the emotions they feel are valid.

Perhaps “Sometimes They Forget” will be the book that is highlighted beside the bed of an Alzheimer’s caregiver – when the 36-hour day becomes a nightmare yet the purpose of the caregiving still feels significant.

To all the caregivers and their families, hope is possible – if only we reach for it.

Link for “Sometimes They Forget – Finding Hope in the Alzheimer’s Journey” http://amzn.to/2l0v59M

Links to Social Media:

Website: http://www.rjthesman.net

Facebook Author Page: http:www.facebook.com/RJThesman?fref=ts

Twitter: https://twitter.com/RJThesman

LinkedIn: https://www.linkedin.com/in/rebeccajthesman

Facebook Group: http://on.fb.me/15XgKN4

Meet Cynthia Hamilton author of Finding Ruth

By Cynthia Hamilton

It took a life-altering crisis to make me realize that despite having known my mom for 50+ years, I didn’t know who she was as a person in her own right. I had firsthand knowledge of many of her trials and heartaches, but that only gave me a one-sided view of what her life had been like, with many gaps. 

Nothing I knew about her had prepared me for what I found prior to her move into a nursing home. In the process of rummaging through eight decades of possessions, I came across an old photo album under her bed. As I opened it, an insert slid out, revealing a photo taken when she was 19 years old. The sight of her hamming it up for the photographer, so happy and confident, completely knocked me for a loop. Who was this person? Why didn’t I know anything about that time in her life? How could I know so little about my own mother?

That stunning photo haunted me. On one level, I was so proud of her, the way I had been as a child. Her beauty and kind nature attracted people to her like a magnet. But on another, deeper level, I was troubled by the fact that the promise of a wonderful future had not been fulfilled. On a purely clinical level, I wondered what had propelled her from point A to point B.

But it was too late to ask. My mother’s mind had been hijacked by Alzheimer’s. She had reached the point where the simplest tasks were beyond her. Making sure she was taking her medication and eating something had been my upmost worries. What I had not realized was that something very precious was being lost as the disease ravaged her brain. Whatever her hopes and dreams were back in 1949, they were completely lost now. 

At the same time, a scene from my childhood began flashing across my mind, a scene I hadn’t thought of in many years. But as I relived standing by my siblings, watching through the window while our mother smashed our dishes to the floor, the shock and anxiety I remembered feeling all those years ago was replaced by curiosity. What prompted that isolated fit of rage? 

After my mom’s move, I felt compelled to understand what her life had been like from her viewpoint. I turned detective, combing every resource to tie together what I knew with the facts I could unearth to create a timeline going back to her first husband. 

What I had when it was finished was not a book about Alzheimer’s or how to navigate it, but more a tribute to a very strong woman. What I learned about her while writing it made me love her even more, despite our rocky past. The unexpected upside to having Alzheimer’s was the loss of all my mom’s painful memories. She has nothing but love in her heart now, and I’m so grateful that she will leave this life in peace.

The most important lesson I learned from writing Finding Ruth was this: if we don’t ask while we have the opportunity, we may never know our loved ones’ past. 

Ask, while you still have the chance.

https://twitter.com/AuthorCynthiaH

http://cynthiahamiltonbooks.com

Cynthia Hamilton Books on Facebook

Meet Elaine Pereira, author of "I Will Never Forget"

By Elaine Pereira, MA OTR/L CDC DP

My mother’s was a story that needed to be told. She was a kind, brilliant and talented woman all of my life until dementia took hold distorting her persona and leaving an agitated, bewildered and compromised person in its wake.

In what would be her final months, as my mother continued her rapid descent into Alzheimer’s clutches, her once strong voice faded away. Our quiet visits together afforded me the opportunity to reflect on the vivacious life that defined her. I was determined to remember her as the strong, courageous and gifted lady who was my mom.

I Will Never Forget was written in tribute not only to my mother but to everyone going through this struggle. Too many sons and daughters have witnessed their parents’ very essence evaporate as their memories are chipped and chiseled away. My mother’s story is everyone’s story. I simply chose to put in black and white the colorful stories of her life for all to remember.

I was not a full-time caregiver for my mother. She had made it crystal clear that she never wanted to live with her “kids” if she could no longer care for herself, even when her “kids” were whittled down to one - just me - after the premature deaths of both of my brothers.

Regardless of whether you’re caring for a loved one at home or allocating daily care to an assisted living facility, Alzheimer’s leaves a permanent mark on everyone. You are forever changed, no matter how you experience the journey.

I believe I Will Never Forget resonates with readers, caregivers and families in part because I admit my denial, ignorance and transparency reveal my unwitting mistakes. I saw my mom as the glass half-full, with intermittent episodes of puzzling remarks and goofy behaviors, when in fact she was more the glass half-empty, with occasional bright moments.

Caring for someone with dementia is a unique undertaking compared with other conditions. They all demand patience and special training, but none requires the exhaustive and creative redirection that Alzheimer’s does.

For someone with dementia, there is no expectation that the person will improve. Alzheimer’s is a progressive, fatal neurological disease with no cure.

There is no expectation of consistency. Awareness in people with dementia fluctuates from one moment to the next. Bright rays of lucidity are peppered amidst increasingly longer periods of distorted judgement, outbursts, memory loss and more.

I offer Community and Professionally Based Presentations. At one seminar a few years ago, an older gentleman, tears welling in his eyes, expressed guilt for having just moved his wife into a memory care facility. He was questioning his decision and felt like “a failure” for needing to relinquish to others what he perceived as his “job”.

My reply: “Whatever decisions you make out of genuine love in behalf of someone else is the right decision.”

About the Author:

Today Elaine works extensively to advance Alzheimer’s awareness through her Award Winning/Best Selling memoir I Will Never Forget, community and professional presentations and pertinent articles.

A native of Kalamazoo, Elaine Pereira and her husband Joseph live in South Eastern Michigan with their two big dogs and two new cats. Together they have five adult children and five young, adorable grandchildren.

Amazon: I Will Never Forget

Book Web Site: www.IWillNeverForgetBook.com

Twitter: https://twitter.com/ElaineColette

Facebook: https://www.facebook.com/ElainePereira.IWillNeverForget?fref=ts

Linked-in: http://bit.ly/1qLy9oA

Meet Pippa Kelly author of Invisible Ink

By Pippa Kelly

Before signing off the final proofs of my debut novel I read the manuscript for the first time in over a year and realised that it was not just laced, but saturated, with guilt.

Invisible Ink tells the story of Max Rivers, a young London lawyer who seems to have it all: a beautiful girlfriend, a burgeoning career, an enviable address – but he harbours a secret. When he and his younger brother Peter were schoolboys, Peter went missing, for which Max blames himself. So it’s fair to say that the novel is about guilt: Max’s guilt, which he tries (and ultimately fails) to suppress.

However, the guilt that I recognised in my writing wasn’t Max’s, it was mine.

I wrote Invisible Ink during the most difficult years of my life. I worked on successive drafts while both my elderly parents were very ill (mum had dementia, dad suffered a series of strokes) and when the pair of them were starting to take up more and more of my time and energy. Without realising it, I – like hundreds of thousands of others – became their carer, albeit at a distance.

This provoked in me a maelstrom of emotions, from pain and grief to resentment (at being taken away from my own life and family) and confusion – all overlain with an unyielding patina of guilt.

Several pivotal scenes unfold as an elderly parent’s health fails. I experienced many of them, and so too does Max Rivers, albeit in heightened, fictional form. Max’s mum is developing dementia. Early in the novel, Max sits and cradles her in his lap as they wait for an ambulance. He has unwittingly (and in his case unwillingly) become his mum’s carer. As I did.

One of my hardest moments was when, for a brief moment, I saw that my mum understood what was happening to her. I was visiting her two weeks after she’d moved into her nursing home. As we sat in its garden she told me she’d cried herself to sleep the night before.

“Why?” I asked, riven with guilt, sure that she’d berate me for making her move out of her home.

She didn’t. She looked me straight in the eye (just as Max’s mum does when he leaves her at Holly Lodge) and said simply, “Because I can’t remember my life”. It was the saddest thing I’ve ever heard.

I’m often asked why the protagonist of Invisible Ink is male. It’s a good question and one that I frequently asked myself as I battled through the difficult first draft. I think, subconsciously, I was distancing myself from reality. My emotions were almost too raw to articulate; by making Max a man I created a buffer between my experiences and the words I was writing.

Invisible Ink is not a novel about dementia. It’s the story of Max Rivers and his missing little brother. As such, it’s a tale of guilt and love and loss. A description, now I think of it, that could equally apply to the universal story of dementia. 

Invisible Ink, published by Austin Macauley, is available in paperback (£8.99) and Kindle (£3.50) from Amazon.

Pippa Kelly is a London-based writer on dementia who blogs for the Huffington Post and mariashriver.com. Her articles have appeared in numerous UK national newspapers and magazines and she has her own award-winning blog at pippakelly.co.uk.

Follow her on Twitter @piponthecommons and Facebook.

Meet Rachael Wonderlin, author of "When Someone You Know Is Living in a Dementia Care Community"

By Rachael Wonderlin

I started my blog, Dementia By Day, three years ago. I had no idea, then, that it would become such a huge part of my life. At the time, I was working for Brookdale Senior Living in North Carolina. I had just finished my Master’s degree in Gerontology at UNC Greensboro, and I was thrilled about my first full-time job in dementia care. My title was “Memory Care Program Manager,” but I did a lot more than manage the activity department. I helped to redesign the community’s look and feel. I completely redesigned the calendar. (In fact, I checked online, the current calendar is still very similar to the first one I made!)

I loved working there, and my friends and family enjoyed hearing my stories about dementia care. “You should write a book,” people kept saying. I had always wanted to write a book, but I never pictured it would be a book on dementia care. Finally, I decided to look into it. Instead of publishing it myself, which was my first plan, a professor from my alma mater told me to look into professional publishers. Johns Hopkins University Press was very interested in my book because they have found much success with their book, The 36-Hour Day. My book is designed as a companion piece to The 36-Hour Day, and I am very proud of that fact.

There are not many resources out there for families who are considering long-term dementia care communities for their loved ones. While there is a lot of information about caring for someone at home, there really isn’t much for those trying to decide on community care. That is why I focused so much on care communities in my book. I really wanted a way to teach caregivers that they didn’t need to feel so guilty about moving a loved one into a care community. I wanted to create a book where caregivers could get the answers to their tough questions.

I have had a lot of caregivers reach out to me about the book and about my blog. Overwhelmingly, my readers have told me that they feel less guilty about making tough decisions on their loved ones’ behalf. I love that I can help them. Dementia caregiving is hard enough, and it is a lot more challenging when you’re internalizing a lot of guilt.

When you know one person with dementia, you know one person with dementia. I have met hundreds, if not thousands, of people with dementia. I tell a lot of true stories in my book, and many of these stories are directly from my experience with my residents in care communities. I think this can really help caregivers relate. A number of readers have contacted me to say, “Wow, this one part really reminded me of my mom,” or, “There were a few chapters that described what I am going through perfectly.” That is exactly the type of reader experience I was going for.

About the author

Rachael Wonderlin has a Master's in Gerontology and owns Dementia By Day, LLC. Her book, When Someone You Know is Living in a Dementia Care Community, was published in November 2016 with Johns Hopkins University Press. Rachael's blog can be found at www.dementia-by-day.com. She is a consultant, speaker, and community designer.

Connect with Rachael:

www.dementia-by-day.com

www.rachaelwonderlin.com

https://www.linkedin.com/in/rachaelwonderlin/

www.facebook.com/dementiabyday

www.pinterest.com/rwonderlin11