When I was twenty-seven, my sixty-year-old mother died of cancer. I was left to care for my temperamental, over-controlling, eighty-year-old father. While grieving for my mother, I was also angry with her for dying young. Taking care of her elderly husband was supposed to have been her job, not mine.
Dad was bored, lonely, and wanted me to come over daily. I was a fulltime musical theatre performer struggling to build a career, find a husband, and a start a family of my own. An aging father did not fit into that equation.
We had never had fun together, and I didn’t know what to do with him. I finally figured out that the only thing he enjoyed was talking about himself. I didn’t know it, but reminiscing with him was the start of my work as a Creative Arts Therapist. Continue reading →
When I sat down to write The Pebble Jar around this time last year, I had no idea of the personal journey the book would take me on. In March of 2016, my little Nana passed away at the age of ninety-one after a long and painful battle with Alzheimer’s. By the time she fell asleep for the last time, we had almost completely lost the essence of who she had once been, leaving us with a shell of the person we loved. Continue reading →
Within a year of my husband receiving his dementia diagnosis, I had a classic case of caregiver burnout. I couldn’t concentrate at work and most of my time was taken up with worrying about my husband’s uncharacteristic and impulsive behavior. I was petrified and intimidated about the future…overwhelmed with basic day-to-day activities. Further, I was apprehensive about making the transition from wife to protector, nurse, and mother. Continue reading →
No one I know has Alzheimer’s disease. My parents have entered their eighties with their sharp minds intact. Only one of my four grandparents suffered any kind of dementia, and Granny’s wasn’t that severe. So when I forget a name, lose my car keys, or question what the heck I’m doing standing in the basement after clomping down the stairs, I shrug my shoulders and carry on. I could still get Alzheimer’s, of course, but with no family history of it behind me, I find other things to worry about. Continue reading →
When I was a young girl I dreamed I would grow up and become a nurse. I seldom left home without my nurse’s kit filled with band-aides, cotton balls, and gum drop pills just in case my services were needed. It seemed so simple in those days to comfort and to heal, or at least that is what my Grandmother led me to believe each time she let me practice my skills on her.
Ah… the wonders I found living with my mother in Dementialand. It all started almost minutes after she was diagnosed with progressive dementia. The cause was meningitis encephalitis. There seemed to be no choice at the time. I had to leave my bohemian life in the art world in California to return to a Chicago suburb where my mom was living. I am a painter. This had all the markings of a disaster. Continue reading →
Writing about dementia came about fairly slowly and organically. I’m an artist, so when my dad was diagnosed with frontotemporal dementia at the age of 65, my natural inclination was to start doing paintings about our journey as a sort of self-prescribed art therapy. I used an elephant as both a symbol for and a talisman against dementia, because “an elephant never forgets.” As I created paintings, I posted them on social media with an explanation of their meaning, and people really responded to them. At the insistence of a friend, I started a blog to help Continue reading →
Without quite knowing it at the time, I began working on Her Beautiful Brain in 2004, when my husband and I made an award-winning documentary film about my mother called Quick Brown Fox: an Alzheimer’s Story, which has had a long life on PBS stations and remains in distribution through Women Make Movies, Amazon and other sites. Making Quick Brown Fox made me realize there was so much more of my mom’s story to tell than our film could contain. I also began to understand that, while I love filmmaking (which is what I do for a living), I have been a writer since I could hold a pencil and I longed to write much more than I was then writing as a filmmaker and occasional journalist. Continue reading →
When Lewy Body Dementia entered my home, the world as I knew it began to shift, and I found myself in a constant state of confusion. My sweet mother, who lived in our home, was hallucinating, her stories and behavior were becoming more and more bizarre, and I had no idea why – neither did any of the doctors I consulted. Lost and alone, I could feel myself becoming a little more unglued with every passing day while I watched the family rules fly out the window one by one. “Wait! I depend on those family rules.” They may not be the same as the neighbor’s rules but they’re mine, they’ve been mine forever, and I’m comfortable with them.