Wednesday, April 26, 2017

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.

Cynthia Hamilton
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.

Follow Cynthia Hamilton

Tuesday, April 25, 2017

New Release Spotlight: Mrs. Tedesco's Missing Cookbook, YA Mystery


 
MRS. TEDESCO’S MISSING COOKBOOK
This week marks the release of Mrs. Tedesco’s Missing Cookbook – a new addition to the Hannah and Tamar Mystery series for young adults and teens, written by Christa Nardi and Cassidy Salem.
Description
A simple request opens up a savory mystery. 

Hannah never imagined her high school service project with the elderly would draw her into another mystery. Mrs. Tedesco, a lonely widow who loves to bake, has just one simple request — that the teen retrieve her cookbook from her old house. Easier said than done. The house has been ransacked and the coveted cookbook is nowhere to be found. Eager to help the woman, Hannah and her sister, Tamar, are driven to locate the cookbook and uncover its secrets.
But the teens aren’t the only ones seeking the cookbook’s hidden treasures, and the other side is playing for keeps.
Mrs. Tedesco’s Missing Cookbook is available at a special introductory price of just $0.99. Click here to get your copy.
 
To celebrate the release, the first book in the series – The Mysterious Package –  will be free on Amazon from April 25-29, 2017.
 
About the Authors
Christa Nardi and Cassidy Salem are both accomplished mystery writers. Christa Nardi has penned the successful Cold Creek mystery series.  Cassidy Salem is the author of the Adina Donati, Accidental Sleuth mystery series.
 
Christa Nardi is and always has been an avid reader. Her favorite authors have shifted from Carolyn Keene and Earl Stanley Gardner to more contemporary mystery/crime authors over time, but mystery/crime along with romance and scifi/fantasy are her preferred choices for leisure reading. Christa Nardi is a pen name for a real life professor/psychologist from the Northeast.
 
Cassidy Salem is especially fond of mysteries (both cozy and traditional) and police procedurals. Over the years, her favorite mystery authors have included Agatha Christie, Caroline Keene, Mary Higgins Clark, and Janet Evanovich. Cassidy also enjoys reading historical fiction focused on American and world history, as well as the classics.

Wednesday, April 19, 2017

AlzAuthors: Elaine Pereira, 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 decision you make out of genuine love in behalf of someone else is the right decision.”

About the Author

Elaine Pereira earned her Bachelor’s Degree in Occupational Therapy and Master of Arts from Wayne State University. Most of her professional career as an OT was with special needs children. She also worked in Home Health Care, hospitals and private practice. In addition to actually living the incredible drama and the sometimes humorous journey with her mother through dementia, Elaine holds certificates as a Certified Dementia Practitioner and Caregiver.

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.

Purchase I Will Never Forget
Book Web Site 

Connect with Elaine Pereira

Twitter
Facebook

Wednesday, April 12, 2017

AlzAuthors: Dementia Advocate Pippa Kelly's Debut Novel

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, published by Austin Macauley, is available in paperback (£8.99, $14.90) and Kindle (£3.50, $4.32) from Amazon.

About the Author

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.

Wednesday, April 5, 2017

AlzAuthors: Rachel Wonderlin, "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. She is a consultant, speaker, and community designer.

Connect with Rachael

Wednesday, March 29, 2017

AlzAuthors: Blogger Jack Fussell, Fighting Alzheimer's One Step at a Time


by Jack Fussell

On January 12th, 2013 I left Skidaway Island State Park near Savannah Georgia.  I traveled westward to Monterey, California. 2,594 miles were on foot pushing a jogging stroller.  458 miles were in a car. The reason I did this was to raise awareness concerning Alzheimer's disease and raise money for the Alzheimer’s Association.

My dad passed away on June 30th of 2000. I was holding his hand. He died with Alzheimer's disease. Prior to that, prostate cancer had taken a huge toll on both his physical and his mental health. He was a veteran of World War II and witnessed a lot of injury and death. He was a great father. He taught my brother and I how to fish and how to play baseball. He loved making us laugh. 

My relationship with Dad had been strained prior to his sickness (my fault). Immediately following his passing, I realized the pettiness that kept me away from time to time. Shortly after his death, I almost lost my life to a bleeding ulcer. While in ICU, I said a prayer, asking God to let me get out of the hospital alive, and promising in return that I would help as many folks as I could until I could no longer breathe. I was in bad shape, both physically and emotionally.

After I recovered, I went to work and changed my circumstances. Since June of 2012, I have raised awareness concerning Alzheimer's disease and money for the Alzheimer's Association. All of this was done in memory of my dad. His name is Leonard Fussell. I blog primarily to express myself and keep a record of things. I hope my dad glances at my blog from time to time. In case he does, "I love you, Dad."

I've been very surprised by the response to my blog. The amount of visitors and the amount of views have been a constant encouragement. The comments have always been positive. People are very forgiving of my sometimes poor use of the English language and grammar. I appreciate their forgiving attitudes.

I've had times when I posted and then later felt discomfort. Sometimes I returned and either deleted the post or changed some of the wording. I still do that, on occasion, but not as often as in the past. I have become very proud of my attempts, and no longer am I ashamed of attempts that resemble failure.

I've had hundreds of people tell me my blog helped them. Some say it was the information the post contained, and others told me they read of my struggles but made note that I continued. They liked the example. Others told me they have witnessed growth on my part and wanted the same for themselves. 

I've been blessed with a lot of information. I feel a responsibility to those who shared with me and feel I must do something with that shared knowledge. 

I'm still breathing, so my promise to God is still to be kept.

The motivation for my actions and the recording of such, in written form, is to help in our global fight with Alzheimer's disease.


Interview

What inspired you to champion the cause of Alzheimer's?
My dad died with Alzheimer's in June of 2000. We had no idea any help was available. 

What is the general response when people learn of your mission to walk across the country to raise money for the Alzheimer's Association ?
People are always supportive and encouraging. Never one negative word to me.

How long do you see yourself continuing this mission?
I will do this as long as I feel effective. I have learned too much to stop.

What advice do you have for others who want to help the Alzheimer's cause?
Learn as much as you can. Find a niche. Find "your approach" and be committed. Also stay near caregivers and patients to stay grounded. 

What are your favorite books about Alzheimer's?
"The 36 Hour Day"

What is your favorite movie about Alzheimer's?
"Still Alice" 

What are your favorite Alzheimer's blogs/websites?
I visit the Alzheimer's Association, the N.I.H. and N.I.A. websites often. I also enjoy the Alzheimer’s Association Georgia blog. 

Have you been tested for Alzheimer's? If not, would you consider it?
I have not been tested. I probably would if it would be of benefit to anyone. 

Anything else you’d like to share?
This is serious stuff. The toll it takes emotionally and financially is unlike anything we have ever experienced. The Nun Study is fascinating. The look on the frequently seen picture of Auguste Deter, says a lot. There is a lot of awareness to be raised. 


Connect with Jack Fussell