My husband devoted more than 40 years of his career as a pilot in the United States Air Force and then for commercial airlines. After that he pursued his retirement goal, owning his own farm. He established a small coffee plantation in Hawaii, which he enjoyed managing for five years until his characteristic vigor and enthusiasm for the farm began to fade.
I knew something was wrong because his general outlook on life had changed. Then in 2000, he was diagnosed with Dementia with Lewy Bodies, which presented with symptoms associated with Parkinson’s and Alzheimer’s disease. I watched him lose his ability to make decisions, follow consecutive instructions, and find his way home. I went online to research this neurodegenerative brain disease, and I came across the Brain Support Network. After contacting them, I joined one of their caregiver support groups to help me and my husband do all we could to keep him as comfortable as possible.
My husband died in July of 2011. His brain autopsy confirmed he had evidence of Lewy Body Dementia, Alzheimer’s, and Amyotrophic Lateral Sclerosis (also known as Lou Gehrig’s Disease) as well as concussions suffered during his youth.
Since his passing, I’ve found great purpose and comfort in helping other caregivers whose family members are in the beginning stages of neurodegenerative disease. Talking with other caregivers can bring out ideas of ways to solve, or at least ease the challenges faced by families living with dementia.
The Sue’s Story Project is grateful to Dianne Weitzel, who has been involved with the Brain Support Network and has supported our efforts to increase awareness and caregiving resources for LBD. Learn more about the Brain Support Network and brain donations at brainsupportnetwork.org.