I don’t know exactly when my mother’s LBD symptoms began. I only know for certain when she died of it: August 26, 1999, just days before her 66th birthday. As far as we know, she had LBD for about 10 years.
The thing that really made us sit up and take notice was her growing inability to do activities she typically could do without much thought at all. One of our neighbors told us that during a mah jongg game, my mother became confused and suddenly didn’t seem to know what to do with the tiles. She’d played thousands of games of mah jongg in her lifetime and now it seemed foreign to her.
One night, I kept her company in the kitchen as she made matzah ball soup. Again, this was something she could do in her sleep. Her normal routine would be to put the matzah ball mix in a bowl with eggs and oil, let it sit for a while, then form small balls and add them to the soup, where they cook. But this night, my mother opened up a packet of the matzah ball mix and just dumped it straight into the soup.
Something was definitely wrong.
Soon thereafter, we took her to a neurologist. Her original diagnosis was Parkinson’s disease, though it was clear to us that dementia was an important clinical aspect of her condition. It wasn’t until late in her life that we had a name for what she had. By that point, there was nothing that could be done. She went into a nursing home when she became so disabled she could no longer be cared for at home. Eventually, she lost all physical abilities, from movement to speech, and when she could no longer swallow we made the difficult decision to terminate nutrition and hydration rather than install a feeding tube. She was kept on morphine until she died 15 days later.
Ten years passed and I never heard much more about LBD. I realized more had to be done. You can’t fight a disease no one knows about, and you can’t help patients and their families when there’s no access to information and resources. That’s when I started writing online about my family’s experience; eventually, I found out about the Lewy Body Dementia Association (LBDA).
LBDA did not exist when my mother was sick. If it had, we would have valued greatly the information they provide and the scientific advances they help make possible. My mother’s sickness would have been easier for us to handle, and her final days may have been better…and not so soon.
Thanks to LBDA, awareness grows daily, research expands exponentially, and people find answers to their questions and comfort in knowing they are not alone. With your donation, we can do even more – and hopefully others won’t have to endure what my family experienced.
Jason M. Rubin