I cared for my dad, who had Lewy Body dementia, for thirteen years. He died on May 5, 2016. It was a tiring, rewarding, frustrating, and life-expanding journey. In 2003, his mental state and living situation became to precarious to ignore any longer so my sister and I stepped in and took over his life; moving in a 24-hour caregiver, taking over his finances, dealing with legal issues, getting him a diagnoses. In April, 2004, I moved in with him as a part-time caregiver, partly to more easily be able to manage his affairs, but also because I didn’t want to miss any of his last bits of lucidity. I wrote a book about this experience, as well as about cleaning out his house, which he had lived in for forty years. I also started a caregiving blog that became popular with other caregivers.
We placed him in an Assisted Living Facility in October, 2005 and he lived there for several years until his behavior started to change. His doctor eventually changed his diagnosis to Lewy Body dementia, a Parkinson’s disease-related dementia that I had never heard of. It can cause hallucinations, delusions, physical weakness, autonomic nervous system problems and behavior issues: aggression, anger, swearing, physical and sexual acting out. We moved him once again, into an Adult Family home that was small and quiet and whose owner, Greg, had dealt successfully with LBD before. He died in Greg’s arms.
I became more interested in both Lewy Body dementia, and the challenge of caregiving and became a caregiver advocate, support group facilitator, and volunteer caregiver counselor for the Lewy Body Dementia Association. I also became a Board Director for the LBDA. In 2014, I published my second book about caregiving, because, by now, there isn’t much I don’t know about it, and continued the blog, which has now been placed on hiatus.
Books and Sites.
Caregiving: How to Survive and Get Out Alive – Joy Walker
A Caregiver’s Guide to Lewy Body Dementia – James and Helen Whitworth.
Living With Lewy’s – Amy and Gerald Throop.
Brain and Behavior – Joseph Friedman, MD.
The 36-Hour Day – Nancy Mace.
Learning to Speak Alzheimer’s – Joanne Koenig Coste.
Activities to Do With Your Parent Who Has Alzheimer’s Dementia – Judith Levy.
Sexuality and Dementia – Douglas Wornell, MD.