For five years, Joan Berger Bachman and her 92-year-old mother, Eileen Opatz Berger teamed up to write,If Only You Would Ask, A Guide to Spending Quality Conversation with the Elderly. This easy-to- use book is a conversational resource, a manual and a tool for all those who struggle to carry on meaningful, enjoyable conversations. How did this book come about?
Here’s Joan’s Story:
When my father-in-law Bill was nearing the end of his life, I would visit him quite regularly. He had made the decision to stay in his own home until the end. Winters in Minnesota are long, cold and lonely, especially for someone who is afraid and/or unable to venture out. Being the dutiful daughter-in-law that I was, I felt compelled to make the 100-mile drive from Rochester to St. Paul to visit him. We would sit at his kitchen table, and I would tell him about what the kids were up to… and what I had been doing. His major topic of conversation was the rabbits he saw as he stared for hours out the back window of his house.
During this time, I shared with my mother how difficult visits with Bill were becoming. He had so little to share, and I wondered if the visits even mattered. Continue reading →
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 →
Nice To Meet You… Again is the representation of years of sitting with families as a Registered Nurse, holding their hands, witnessing their frustrations, and sharing in their journeys through dementia. After fifteen years of wishing for a tool to help families learn strategies and see hope for their interactions, my father developed dementia, and I decided I needed to move my teaching outside of myself as the deliverer and multiply the effects that I, alone, could not make. As I prepped for this, I remembered the countless families that made their final decision to stop visiting their loved ones because it was so upsetting to see the changes in their loved one and because of their fear of how these visits were affecting their children. This became my mission: to develop a tool that would help families change these moments of frustration by giving them the tools to help “see” a different expectation and journey, and change the flavor of their interactions.
In the short time the book has been available I have been blessed with many responses from families of how they wished they would have had this resource when they were in this journey, or how it is currently changing their journeys and giving them back their joy with their loved one. Professionals and family caregivers have stated they carry the book with them because hardly a day goes by in which someone they know or meet shares their journey of dementia. By offering this book, they state that they feel like they can finally do more then just say, “I understand;” in addition they can offer hope. 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 →