When a family (both the caregiver and the one with LBD) are living with a "something without a name", they need someone to be sufficiently brave enough to offer a website. Even as a medical person, I did not know what we were dealing with when my husband started to have symptoms. When the neurologists told us it was Parkinson Disease, I had to shake my head. They based their decision primarily on his shuffling gait. I don't remember questions about the anxiety, the short attention span, or the sleep problems. I kept searching and questioning. I wasn't looking for problems, but I really needed absolute answers.
When Dean mentioned his hallucinations to our family doctor, the doctor suggested that I might want to check out the Lewy Body Dementia Association website (www.lbda.org). I did and it was both aweful and rejuvenating. The "something" finally had a name. Dean had all the symptoms listed on the site. It was aweful because I realized that his life was ebbing to a close. It was rejuvenating because I realized what to expect and how to help him stay as functional as he could possibly be. I knew which monster to do battle against.
I am suggesting that if you have landed on my blog, be brave. Share my website and my book with a caregiver. My testimonials are telling me that other caregivers feel as I did. It is painful to know the truth but it does allow us to provide better care when we know what we need to do and when we need to do it. Remember, to get to my site, you don't need the www. It is http://ourlewybodydementiaadventure.com/. Books are best ordered from (http://bookstore.westbowpress.com/Products/SKU-000570473/Living-with-Lewy-Body-Dementia.aspx) or Westbowpress.com/judytownejennings.
I frequently speak to various caregiver groups, and would love to see as many people as possible. Come share your stories with me and the rest of the group.
I just started reading your book yesterday... -- Nancy Kloepfer