After Jim’s first wife, Annie, was diagnosed with dementia in 1998, he retired from his job in the Silicon Valley and became her caregiver. To this day, Jim believes that the medical profession’s lack of knowledge about LBD and its drug sensitivities decreased both the quality and the length of Annie’s life. He became an early member of the Yahoo LBD Caregiver’s Group, a charter member of the Yahoo Caring Spouses Group, and was actively doing all he could to spread the word about LBD.
Annie passed in early 2003. That same year, he and four other LBD caregivers founded the Lewy Body Dementia Association. Jim was its first president. The next year, he moved to Arizona. Jim and Annie had been square dancers for years before her dementia made it too difficult and so he knew square dancing was a good way to meet people. When fall classes started, he became a “retread”—that, is someone who had returned to the sport after a period away. I was one of the people he met.
We connected right away. Like Jim, I was a retread. I’d been a caregiver, too. My husband died with lung cancer in 1997. Then in 1998, about the same time Jim retired, my sister, Lucille, became terminally ill with colon cancer. I took an early retirement from my substance abuse nurse/counselor job, left Alaska where I'd lived for 27 years, and moved in with her. In the nine months we had together, I learned to appreciate the help that hospice provides. Lucille also had Parkinson’s, but even after 20 years, she showed few signs of dementia. She did occasionally hallucinate and become irrational, especially after being medicated for pain. It wasn’t until I met Jim that I understood that Parkinson’s was a Lewy body disorder and that these symptoms were due to a Lewy body-related sensitivity to her pain drugs.
When Jim and I met at that square dance class, I was living in Washington and wintering in Arizona. I’d started in Washington and found a class in Arizona where I could continue. It was the same one Jim was taking. The instructor put us together for my first dance…and we’ve been together ever since. By the spring of 2005, when classes ended, we were engaged and in August, we married.
We eventually decided to live in Jim’s home in Arizona and travel to Washington in the summers to avoid the heat. Our spare room was filled with boxes of fliers that the LBDA had ordered in a large quantity—to save money. When we needed a bed for an overnight visitor, we moved the boxes together and laid a twin mattress on top of them. Less than a year later, information had changed so much that the LBDA published new brochures even though there were still enough boxes filled with the out-dated brochures to support the mattress. We tossed them and bought a real bed.
Just as Jim’s mission was to spread the word about LBD, my dream was to travel and teach. A perfect match! We bought a used RV and began traveling from our home in Arizona to Washington for the summer. Along the way, we talked to care facility staff and caregiver support groups and anyone who would listen. I’d also been a writer for years, for fun and work. Eventually, those annual trips eventually resulted in the book, On the Road with the Whitworths. It’s an entertaining book, not a resource book. However, caregivers need to relax now and then and so we believe it is worthwhile.
But there was a need for a resource book too. A recurring refrain from caregivers was that they wished the people who cared for their loved ones knew more about LBD. This led to our self-publishing Riding a Rollercoaster with Lewy Body Dementia in 2009, targeted towards care staff. When we submitted it to Demos Health Publishing, their editor said, “Care staff don’t buy books, family caregivers do.” and asked us to rewrite the book for that audience.
In the meantime, we took the Rollercoaster book and took it on a summer tour and proved the editor right. Between our tour and the internet, we sold 500 books—mostly to family caregivers. In October, 2010, A Caregivers’ Guide to Lewy Body Dementia was published and began receiving good reviews immediately. In 2012, it received a Caregiver Friendly Award from Today’s Caregiver magazine and website. To date, over 5000 copies have been sold, but more importantly, we’ve heard from many, many caregivers about how helpful the book has been. Jim feels blessed that his ongoing mission is so successful and I am honored to be a part of that journey.
Now we are reaching out to other people dealing with Lewy body disorders, especially to those with Parkinson’s. Our new book, Managing Cognitive Issues , helps families recognize the symptoms that warn of encroaching cognitive symptoms, explains the dangers of drug sensitivity and provides some alternative methods for dealing with the disorder’s troublesome symptoms.
Who knows what will happen next!
For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
For fun and to learn more about us, read On the Road with the Whitworths.