When Dr. Claudia Kawas of UC Irvine Medical Center was diagnosing Mom in February, 2004, she described a major difference between Alzheimer's Disease and Lewy Body Disease.
"With Alzheimer's," she said, sketching a straight line at a 45-degree angle on a piece of paper, "there's a slow and steady decline toward death. Patients lose short-term and long-term memory, then the ability to talk, and finally the ability to swallow. But with Lewy Body there's usually a long plateau followed by a sudden drop. In the end, these patients also lose the ability to swallow, so they can't eat or drink."
She drew a horizontal line that turned 90 degrees down.
At the time, I couldn't really imagine what she was describing, but now four years later, I have observed the slow decline of many residents on Mom's floor of her assisted-living residence, and in the past four weeks I have witnessed the sudden drop.
On Mom's 89th birthday, Wednesday, March 12, I took her out to lunch and realized for the first time how slow she was in chewing her food and swallowing. She ordered steak and shrimp, did not touch the bites of steak I cut up, managed to eat six or seven shrimp, cut into bites, chewing each for a long time.
I was impatient with that two-hour lunch; she ate only a couple French fries, a spoonful or two of cottage cheese, a bite or two of cornbread. Often the chewed food fell out of her mouth. The easiest thing for her was the tall glass of cold milk; she drank that down and liked it so much.
Two days later at the P.E.O. meeting at my house, she asked to go back to her residence moments after I wheeled her into the living room where the ladies were gathering. When we had refreshments, all the fruit and coffee cake she ate fell out of her mouth onto her blouse. It was embarrassing, and I decided I would not take her to any more of those meetings.
A week later I had placed her on hospice at the advice of her geriatrician (accepting the suggestion she had actually been making for over a year). She was eating less, so we started feeding her and argued with her, "Just take this spoonful!"
A few days later we bought Ensure, and she drank it down hungrily, enjoying it.
But a week later she could only drink it slowly, a sip at a time. We put her on pureed foods and thickener in her liquids. The hospice doctor said she might aspirate some of her liquids into her lungs and then get pneumonia.
The last food she ate was March 31 and April 1, when Connie got her to eat a quarter cup of pureed food each day, spoonful by slow small spoonful.
She was also refusing her pills, but on Thursday a week before her death, she swallowed all of them quickly, and on hearing the report, I warmly congratulated her. "Good, Mom! You took all your meds this morning."
"I did it for Jim," she replied.
Those words told us that the not swallowing was partly inability and partly her own decision that she wasn't going to prolong her life any more by trying to eat and drink.
About that time, when Marnie Reid, the lead caregiver, was trying to get Mom to take her meds, Mom suddenly said to her, "Why?
"It's good for you," Marnie answered.
But Mom calmly told her, "I'm ready." At that, Marnie had to hold back tears.
We gave up on solid foods, pureed foods, and meds; then we gave up on Ensure and only tried to give her milk and water in spoonfuls, then droppers squirted into her mouth for the last five days of her life.
Mom's final plunge took only four weeks--from fairly normal but light eating to no drinking or nourishment at all--and death.
Four years ago Mom's diagnosis was tentative, and we decided to have her brain studied after her death to determine what kind of dementia she had. After all, there are implications for the next generations.
But her sudden decline is proof for me that she indeed had Lewy Body Disease.