Yesterday, my Mom was diagnosed by a neurologist with Lewy body dementia (known as LBD or DLB).
The diagnosis was not a surprise. Her regular doctor had told us she had some form of dementia. The last two years my mother has progressively shown the symptoms of this disease and after a lot of research (something I’ve become good at thanks to my profession as a writer), I guessed as much.
At first, my Mom only needed part-time care and since I only lived about 15 minutes away, I was able to drive over as needed. However, that all changed when my Mom went into a deep sleep during the morning with the Rachel Ray show on and awakened confused. She thought she was at Rachel’s house and was going to walk “home.” Thank-goodness, she had trouble turning the alarm system off and called my brother to ask for help which saved the day.
So I have recently moved in with my Mom to help care for her full-time. I am grateful that I work at home on my laptop which makes this possible.
If you are a baby boomer with aging parents like me, there’s a good chance you will deal with this issue at some point.
One in three seniors dies with Alzheimer’s or another form of dementia. Last year, 15.5 million caregivers provided an estimated 17.7 billion hours of unpaid care valued at more than $220 billion.
LBD is the second most common type of progressive dementia after Alzheimer’s disease. It shares symptoms with both Alzheimer’s and Parkinson’s disease. This means that people with this diagnosis will eventually develop a combination of similar cognitive, physical, sleep and behavioral symptoms of these two illnesses.
Everyone is different, but some of my Mom’s symptoms are typical of LBD and include vivid hallucinations, lack of concentration, confusion, night terrors, daytime drowsiness and long naps, vocabulary problems, disorientation, memory problems, agitation, anxiety, and depression.
Add to that, some Parkinson-like symptoms including tremors, lack of motor skills, rigid muscles, difficulty walking, and balance problems.
In addition, my Mom is extremely sensitive to certain medications like antihistamine and pain medications which can cause intense hallucinations that last for days. Two years ago, my Mom had hip replacement surgery, and as I know now, the anesthesia can also cause severe problems. For six weeks, my Mom didn’t know where she was and didn’t always recognize me.
She has good days and bad days, but I know the condition will worsen over time.
My conflicting emotions have ranged from heartbreak to frustration to pure exhaustion and I know it is only going to become more challenging as time goes on.
Earlier, I wrote a blog, Caring for Aging Parents, with some general advice if you want to check it out.
I’m going to follow up that article with a three-part series of blogs written specifically to help caregivers like me whose parents have some form of dementia. The information will be for my own benefit as well as for my readers going through similar situations to help us all retain our joy through a difficult time.
So stay tuned and we’ll all get through this together!