Olivia and Lewy
by Gourete De Sousa Libanio Broderick (May 2003)
LBDA Volunteer & 2005 LBDA Volunteer of the Year Award Winner
For as long as I have known my mother, Olivia Alves De Sousa Libanio, she has been a strong and independent woman. That is, until Lewy came into her life about two years ago. What a strange-sounding medical condition she was diagnosed with, I thought. Who would name a disease after a man named Lou? I learned in a hurry that I had a lot to learn and that Lewy and I were going to get to know a lot more about each other.
My mother is now 67-years old. A few years ago, we noticed that she became forgetful every now and again, but this didn't seem unreasonable considering her age. Then there was the day that my mother forgot she had just greeted her son and we rushed her to the hospital. We had no idea what was going on other than her being completely confused. The doctors suggested that she might have had a small stroke. How shocking this was to us, but upon reflection, I wish that this were true.
Within the next few months, my mother had many episodes of confusion, but seemed to snap out of them without explanation and continued to engage life. At one time we thought she was doing this to get attention; she had a hard time trying to explain her symptoms to doctors, other family members and friends, even when she seemed to be her normal self. Before long, my mother started having problems with mobility, tripping over her own feet, unable to move in mid-stride or just plain falling down. What was going on? We knew something had turned the corner when she fell down the stairs and fractured her collar bone. Less than one week later, she fell down again and had a hairline fracture near her elbow.
She had an appointment to see a neurologist due to her confusion (her mother had Alzheimer's and we thought she may have it too), but with her falls, it confirmed the diagnosis of Lewy Body Dementia. Whew, we thought... thank God it's not Alzheimer's after all! Our relief was short lived however, once we learned what a diagnosis of Lewy Body Dementia meant. I had never heard of this Lewy before and soon learned that no one else, including those in the medical field, knew very much about Lewy either.
So here's the medical explanation: LBD is a neurological disorder that includes symptoms associated with Alzheimer's disease, clinical features of Parkinson's disease, fluctuations in cognitive performance, and finally, visual and/or auditory hallucinations. Did this diagnosis make sense or what! This explained the cognitive confusion and why she seemed to have good days followed by too many terrible ones. It explained why she seemed so unsteady on her feet and the constant falls. This also explained why she started describing trips she swore she took, or conversations she had with people who weren't there - hallucinations.
It's been over a year now since mom has been taking medication that helps those with Alzheimer's and Parkinson's. She hasn't had to take any anti-psychotic drugs for the hallucinations, but we know it's coming. People with Lewy Body Dementia are extremely sensitive to anti-psychotic drugs, but are far too often prescribed these drugs to calm their aggression and/or agitation - something we all need to look out for. There is no cure for LBD. No magic pill or therapy. It's one day at a time for us all, making my mom as comfortable and happy as we can. To say that my mother is no longer the same woman we all once knew is to put it mildly, but she is still our mother and my father's wife. We continue to care for her and love her. When she smiles, it makes all of the hard times worth it. I love you Mom!
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