The Imperfect Caregiver

The following is an excerpt of an article that first appeared in the Washington Post on December 16^th.

Written By Candy Schulman

My mother’s greatest fear was Alzheimer’s. She got Lewy body dementia, or LBD, instead. This little known, oddly named, debilitating illness afflicts an estimated 1.3 million Americans, the actor and comedian Robin Williams possibly among them. It is often misdiagnosed because its signs, such as hallucinations and body rigidity, do not seem like those of dementia, but in the end it robs people of themselves even more painfully.

I first noticed my mother’s cognitive difficulties when she was 88. Until then, she’d led an extraordinarily active life: She was a competitive golfer with a bureau full of trophies, a painter and a sculptor. Every Hanukkah she hosted a lively feast for her eight grandchildren and nine great-grandchildren. This time, though, she needed my help planning, shopping and cooking. She was having difficulty with the guest list, trying to write every family member’s name on a piece of paper, adding up the numbers to see how many potatoes to buy for latkes. Her concentration became frayed and she kept ripping it up and starting again, close to tears.

Several months before that, she had sent me a Mother’s Day card that was illustrated with childlike prose, colorful illustrations and glitter hearts. The poem on the cover was printed in a playful purple font: “For you, Mom. For kissing my boo-boos, for wiping my face. . . . For calming my fears with your loving embrace.” On Mother’s Day and the rest of the year, Mom added in a shaky script, “thanks.”

To read the complete article click on the following link http://www.washingtonpost.com/national/health-science/lewy-body-dementia-has-symptoms-even-worse-than-those-of-alzheimers/2014/12/12/a0ca05a0-69a9-11e4-a31c-77759fc1eacc_story.html

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I sometimes wonder if my father-in-law, Rodger, had Lewy Body Dementia. The symptoms fit. He had Parkinson’s disease, dementia,and  hallucinations. However, he also had a life-long history of schizophrenia so the hallucinations and delusions were not new. There is a family history of Parkinson’s disease so it’s not surprising he developed that. The doctor diagnosed him with age-related dementia, a catch-all name that didn’t  really tell us anything other than his ability to reason was becoming even worse. The truth is, we will never know if he had Lewy Body Dementia, Alzheimer’s Disease, or any of the other forms of dementia. We do know he was very sick and millions more are affected every day. So, it’s important to share as much information as we can about these diseases and do everything we can to bring attention to them. For that I thank the Washington Post and Candy Shulman for sharing this story.

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