Five years after Dad first had memory problems, we're starting to understand what caused his dementia. Seven months after he died, we know what caused his hemorrhagic stroke. I'm both relieved and sad to have a diagnosis.
Last week I got a report from the Neuropathology Lab at Massachusetts General Hospital, where we sent some of Dad's brain tissue. The report says he had severe cerebral amyloid angiopathy, or CAA. In people with CAA, a destructive protein is deposited on the walls of the blood vessels in the brain. The protein causes the vessel walls to crack, allowing blood to leak out. Every hemorrhage, large or small, damages brain cells and can cause dementia, difficulty speaking, or even paralysis. Some CAA patients, like Dad, die of these hemorrhagic strokes.
In a way, it's a relief to know that researchers don't yet understand what causes CAA, or how to treat it. As Dad's memory problems slid into full-blown dementia, I felt like there was an answer, but we just couldn't find it. This diagnosis means no one - not me, not my family, not his doctors - could have done anything to help him, no matter how hard we tried.
My father also had a "moderate number" of the plaques and tangles characteristic of Alzheimer's disease in some areas of his brain. According to the neuropathology report, these "contributed to his neurologic difficulties." It's sad to think about him entangled by both Alzheimer's and CAA.
On my birthday last year, Dad stayed on the phone with me longer than usual. It was hard for him to find words, but he wanted to talk.
Dad, Beau and Mom
"Things are different here now," he said. "But when I nap, Beau [their dog] stays with me. He climbs up on me so I feel better. And Mom and I still push on each other [give each other backrubs], so that's good."
"You've got a lot of good things, Dad."
"Yes. Hi from me to you...happy birthday," he said. "I'm still older than you are!"
Struggling under the double burden of CAA and Alzheimer's, Dad kept both his gratitude and his sense of humor.