It has been almost two years since Dr. Kawas first suggested Lewy Body Dementia as a possible diagnosis for Mom.
In that time, I've told many people about her illness. None had heard of LBD before.
But in the last two weeks suddenly three people have said to me, "Oh yes, my mother [husband] [sister] has it too."
First was my friend Ginny in Berkeley, who emailed to say that her younger sister in Denver has been diagnosed with LBD. She's very concerned about her sister's care and how her sister's husband will cope with the challenges of care giving.
Then a lawyer who is helping us handle some inherited property mentioned that his mother in Santa Barbara has LBD. He spends a lot of time driving up there and back to manage her care. Fortunately, his own practice is flexible enough that he can work evenings or weekends to make up for hours lost in caregiving.
On Friday at the P.E.O. meeting, my new friend Dorothy asked what kind of dementia my mother has, and I told her Mom's probable diagnosis.
"Oh, my husband has Lewy Body too," she said. "At least that's what his doctors are saying now. They don't know for sure."
Her husband's illness began three years ago with peripheral neuropathy and falling down. Now he is in a wheelchair and needs a Hoyer lift to be helped into and out of bed. He has dementia, too, much like my mother, but he doesn't get out of the house much because he is too heavy for just one person to handle.
It's really sad to think of these three people afflicted with this mentally and physically crippling disease.
But I'm grateful that I now have several friends with whom to share the suffering and questions. Dealing with the illness is hard enough, without having to start from zero in every conversation: "No, it's not Alzheimer's. It's the second most common dementia...."
Suddenly, my siblings and I are not alone.