My father has Lewy Body Dementia, the second most common form of dementia after Alzheimer’s, but one that is relatively unknown, even among caregivers and physicians. As a result I’ve spent a lot of time learning all I can from that source of all things, the Internet. Recently I read an eBook account of the last few months of a Lewy Body suffers life written by his daughter and her husband who were his full time caregivers. They often referred to him as “Lewy” to differentiate him from the person who had gotten lost in this strange and horrible disease.
Lewy first appeared in our family nearly 15 years ago. He came in quietly, so quietly that we didn’t even know it. He first appeared in the form of wild and violent dreams; so violent that my step mother refused to sleep in the same bed with Dad. Lewy would leave vivid memories of the dreams, but we thought they were stress related . At that time my step mother was in the early stages of Alzheimer’s and Dad was trying hard to keep it all togetherwan trying to pretend it wasn’t happening.
It wasn’t until several years later that Lewy began to appear more frequently, often getting directions confused. “where are we?” he would ask, followed by the question “where are we going.”. My Dad is a naturally cautious man, an accountant by profession and he voluntarily began to avoid driving. Even though he wouldn’t admit it, I think he was frightened of getting lost. Lewy was making his presence known.
By this time my step mother was in care and Dad was devoted to making sure that she was taken care of, visiting her almost daily. Lewy was biding his time, although occasionally appearing in the form of precipitous drops in blood pressure, fainting spells, and a worsening tremor. Hospitalization after hospitalization accompanied by a battery of tests revealed nothing. Lewy then began to play tricks with my Dads ability to comprehend his finances. Dad asked me to accompany him tat bank appointments, and I soon was aware that he was having difficulty remembering or understanding what he had done.
I think Lewy was starting to come out more and more and at one point a physician friend suggested that Dad was suffering multi- infarct dementia, based on his history of stroke. I discovered later that Multi-infarct dementia is one of the most common misdiagnosis for Lewy Body. I was becoming increasingly concerned as Lewy began appearing more regularly, but when I mentioned Multi-infarct to Dads own physician, he brushed it off.
Soon Lewy began to visit regularly. Falls became regular occurrences, he kept Dad from sleeping with bizarre dreams and he painted strange figures on walls. Dad knew these things weren’t real, in fact he seemed amused by them, but not always. Sometimes Lewy would waken him up shortly after going to bed and play games. Dad was living with my daughter and I at the time. Lewy would come downstairs demanding “where’s your Mom”. “she went to bed, Grandpa.”. “No she didn’t, I saw her ride off on that motorcycle”. “No, Grandpa, she went to bed”. “don’t get smart with me young lady, I know what’s going on!”
Needless to say things got tense around the house and I got drawn into the role of referee. By this point Home Care were coming in twice a week and Meals on Wheels came with lunchmince I was working Daughter was in university and Dad didn’t seem to be able to figure out the appliances. Probably a blessing.