When I tell people that my husband Roger has Lewy Body Dementia, my least favorite question is “Does he still remember you?”. This seems like the morbid curiosity that compels people to drive past the horrible car accident so they can see it. They seem to need to know how bad Rogers’ dementia is, and how much I am hurting. So yes, Roger does know me. Lewy Body Dememtia (LBD) has a pattern and timing of memory and other cognitive losses that differs from Alzheimers, but is no less devastating to me or to Roger. The “scene” of dementia is horribly real. When I am feeling sarcastic, I want to be able to say “It’s great that Roger remembers me; his dementia is a mild case and he will recover quickly and I am fine.” Unfortunately, I would be lying.
My second least favorite question is “Lewy who?” Then I end up spelling it out, L-E-W-Y Body Dementia, and giving a short tutorial about how it’s not Alzheimers. I am passionate about increasing public awareness of Lewy Body Dementia, but sometimes I just need to know that people care about Roger and I, and are sorry this is happening to us. Maybe I will get cards printed that show how Lewy Body Dementia is spelled and include the website for the Lewy Body Dementia Association: lbda.org and (horrors) suggest they Google it. The burden of explaining LBD can sometimes put a shadow on expressions of concern and support.
i certainly don’t want to sound whiny because support is not always expressed perfectly. Awareness of how I feel when expressions of caring miss the target has definitely made me more careful about what and how I say “I care about you.” Life is not fair and I don’t know why, but I can decide how I want to face this horrible challenge of dementia.