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 Inktells 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. Continue reading →
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.
Last night I lit a Yahrzeit candle for my father, who’s been gone for two years. And I decided, at the last second, that rather than sing a traditional prayer, I’d just sing a few lines from one of his favorite Broadway tunes. It made me smile in a moment that was otherwise sad.
Like many, my father’s struggle with Alzheimer’s was a long and gradual one, but that did not make it easier for him, and it didn’t make it easier for all of the people who loved him. We had to say goodbye over and over as parts of who he had been vanished like color from a beloved garment, never to be restored. Continue reading →
Love in the senior years: A true inspiration to me. My parents are married over sixty years as of this writing. Sixty years of ups and downs, good health and bad, happiness and sadness. But one thing remains: a steadfast love. It is this love that inspired me to write; theirs, and another couple: my husband’s elderly aunt and uncle. Continue reading →
My mother, Vera, was diagnosed with Alzheimer’s in October of 2006. That was the day my world changed – forever. I will never forget (or is that statement actually true?) the day I received the phone call. “Mrs. Howell, I am calling to tell you your mother has dementia.” The doctor lacked bedside manner, and he assured me he could call in medications that would make Momma better. Continue reading →
My parents raised four children in a small community located near Charlotte, NC where they were active in social and church affairs. Jim coached Little League and Rusty directed the polling place in our precinct. My siblings and I grew up, went to school, and made life-long friends there. But then, gradually, negotiating the complexities of social interactions became more difficult for Mom and Dad and they withdrew from the activities they once enjoyed. Continue reading →
I grew up in in the mountains of New Mexico in a roadside attraction built by my father.
With the exception of, “I love you,” I have probably spoken this one sentence more than any other. I defined myself as the daughter of Ross Ward, the man who created Tinkertown Museum.
I did not mean to write a book. After my father died from complications of early onset Alzheimer’s disease, I sat down with my journals to try to understand what had happened to me and to my family in a five-year period that began just before I turned thirty. Continue reading →
It can get lonely carrying on with this job that most people think I must be a “little strange” to be doing. “You’re a hospice chaplain? Isn’t that morbid to be doing that?” Someone felt my going so far as to write a book about it was downright peculiar and distasteful. But with my front-row seat at Act Three Scene Three of people’s lives, I keep getting intimate glimpses of what hospice patients are pondering, remembering, laughing Continue reading →
In the late 1990s, I joined a writers’ group. The rules were simple: “Bring three pages, double-spaced, to read. Ask for the critique you want.” I wanted to write, not just think about writing.
I wrote and shared a story about a trip my sister and I made to visit our mother in Southern California. It had been an odd time and we were still trying to make sense of it. Writing helped. I kept writing, especially about funny conversations I had with Mom. Continue reading →
I was twenty-four years old when I became a caregiver for my grandpa. I left my old life and moved in with my grandparents to care for my Grandpa in his journey through Alzheimer’s. There at the very start of my journey, fresh in that new place of life, I sat down and began with the following email to my family: Continue reading →