Join me as I tell the story of AlzAuthors, the global community of authors sharing their Alzheimer’s and dementia stories to light the way for others, on Friday, June 21st at 2 pm at Middletown Thrall Library, Middletown, New York. This is my fundraising and awareness effort for the Alzheimer’s Association’s The Longest Day, an annual event. You can read more about my personal Alzheimer’s story on my Longest Day Participant Page.
After publication of my novel Blue Hydrangeas, an Alzheimer’s love story, I reached out to two other authors I met online who also published books on this deeply stigmatized subject. What happened next was totally unexpected: We created a movement that includes 200+ authors, a website, bookstore, anthologies, community outreach, and more. Our mission: To bring carefully vetted books and blogs to caregivers and others concerned about Alzheimer’s and dementia and to break through the silence that often accompanies these diseases.
Sharing our stories makes us strong, but sadly too many of those with dementia and their loved ones caring for them are isolated, as shame and stigma often prevent them from disclosing their diagnosis. My presentation will include a discussion on the power of telling our stories to make change – personally, globally, and legislatively – and how those overcoming or facing dementia and its caregiving can tell their own stories.Continue reading →
After many long months of exhaustive family struggles, cognitive and behavior changes, and a lengthy process of medical evaluations and tests, my dad, Buddy, received the devastating diagnosis of Frontotemporal Lobe Dementia (FTD). It was Valentine’s Day, 2013. FTD is a rare neurological disease that affects personality and social behavior, speech and language comprehension, and executive functions involved in reasoning, decision-making, and planning. Never to be outdone, my mom, Maureen, always the fierce competitor, was diagnosed with Stage 4 colon cancer only four months later.
That year, my best friend’s parents died in a terrible plane crash and that sudden tragedy struck me in such a profound way. “I am going to lose my mother and my father,” I remember thinking, “but I still have time.” I don’t know which is worse: losing parents instantly or watching them slowly deteriorate, but I knew I wouldn’t squander the chance to say goodbye.
Dad was a natural storyteller, and through that he became my favorite story to tell. He was my hero. The highest compliment I can give of my dad was he had a son that idolized him. Everything he loved I was determined to love just as much or more: Bob Dylan, Lenny Bruce, Marlon Brando, absurdist theater, and the San Francisco 49ers. But dementia made him quiet and apathetic; he no longer expressed an interest in the things we used to do together. Continue reading →
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. Continue reading →
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. Continue reading →
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?” Continue reading →
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.Continue reading →
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. Continue reading →