Cynthia never thought it would be so easy to forget. Her son never thought it would be so hard to learn.
Cynthia Guzman didn’t have time for this.
She was 62. Working full-time as a nurse in Maricopa County, Az., in charge of the pediatric home ventilation program. She made home visits, coordinated care, juggled emergencies and complaints. And had no trouble remembering any of it.
Until the day she went to drive home.
It was Cynthia’s knee that finally focused everyone’s attention on her brain. Some fluid accumulated and led to minor surgery, and some pain medication led to her feeling odd – or at least that’s what she blamed it on.
She scheduled an appointment with her primary care physician and took along a paper where she’d written down all the odd little things that had bothered her. They must have bothered the doctor too, because she asked Cynthia to read the note back.
At first glance it was the handwriting that confounded her – it didn’t even look like her own. “But the whole thing-none of it made sense,” she said. It was a jumble of disorganized fragments.
That was the beginning of a 3-year journey for Cynthia and her son Ed Ortiz. It’s led from primary care to a local neurologist to world-renowned Alzheimer’s experts. From a regional hospital to a premier dementia center to an academic powerhouse. She’s enrolled in ground-breaking clinical studies. She’s been tested, questioned, venipunctured, tapped, and imaged.
For three years, she was an Alzheimer’s patient. Now she’s something else.
The long road
Like so many with dementia, Cynthia worked her way up the diagnostic ladder.
Her primary care doctor was the first to sound the alarm – after the visit with the note, she wouldn’t let Cynthia drive home. Instead she sent her in an ambulance to a local emergency room to try speed up her contact with neurologists.
Somewhat predictably, that plan backfired.
When she connected with a local neurologist, he employed the usual inquiries – history, clinical exam, and neuropsychological testing – and concluded she had dementia.
As a care coordinator for a large health plan, Ed can navigate medical systems better than most people. He lined up an appointment at the Banner Alzheimer’s Institute in Phoenix, traveled from his home near Napa, Calif. and took Cynthia there for a multi-day assessment. Ironically, it’s the memory testing that she recalls most vividly.
The diagnosis was dire, Ed said.
Ed and Cynthia had some serious thinking do. He hired someone to help his mom, as Cynthia couldn’t work anymore. She had been spending days alone in her house, not washing or changing clothes. There was another car incident– Cynthia went to get ice cream, got lost on the way, flustered and intimidated by a car behind her, and just closed her eyes and pulled out into traffic. Thankfully, no one was hurt, but it was the last time she drove.
Moving his mother closer to Napa was the only sensible approach for Ed. They found The Meadows of Napa Valley, a long-term care facility with separate wings that accommodate those like Cynthia, who needed only modest support, and others who need full care. Cynthia has a small efficiency with a little kitchen. She makes tea and coffee and snacks there, but eats all her meals in the dining room with friends.