Alzheimer’s Can Strike Early
David Esquibel took his elderly parents, Sylvia and Antonio, to a monthly information meeting at the Albuquerque offices of the Alzheimer’s Association not long ago.
Alzheimer’s, a progressive, incurable form of dementia, affects one in eight Americans 65 and older and so meetings at the New Mexico Alzheimer’s Association chapter are typically filled with older people and their younger caregivers. It took a confused staffer a little while to figure out that it was actually David, 53, who had the Alzheimer’s diagnosis.
About half of the 5.4 million Americans who have Alzheimer’s are 85 or older, and only a sliver — about 4 percent — are under 65 and have what is known as the “early onset” form of the disease.
Imagine getting that news in the prime of your life.
Shock washed over David and his wife, Robyn, when,
at the end of weeks of brain scans and cognitive ability tests, they got the diagnosis of Alzheimer’s, followed by the sobering suggestion that they begin to get their affairs in order before the disease robbed David of more abilities than it already had.
“Devastating,” Robyn told me. “It’s a killer,” David said.
Until a few months earlier, David had been in the midst of a successful insurance career handling employer health plans. He was the main breadwinner in the family and the steady, reliable father of two college-age sons.
Then co-workers noticed he was forgetting things, and Robyn did, too. She found herself having to repeat herself a lot, but wrote it off to the stresses of a busy life and the Christmas holidays.
At a shopping trip to Costco, David reminded Robyn to buy ground beef and after she had put the meat in the cart, he asked again, “Did you get the hamburger meat?” She told him she had and pointed to it in the cart. A few minutes later, he asked again. When they got to the checkout counter and he asked, “Did you remember the hamburger?” Robyn really started to worry.
“I looked at him,” Robyn said, “and I realized he wasn’t trying to be funny or tease me.”
She started to notice more forgetfulness. And when David couldn’t remember where he fit in the birth order among his six siblings, Robyn told him he needed to go to the doctor.
A brain scan showed atrophy in his brain, and he did not perform well on memory tests. He couldn’t name the president who preceded Barack Obama, for example.
“Very frightening, very sobering, very sad,” Robyn said. “It was very profound, and we realized there was probably some sort of issue going on.”
David knew he was getting answers wrong and was mad at himself. “It was frustrating,” he said. “Disappointing.”
He also did poorly on a lengthy neuropsychological test, which led to the diagnosis in March.
Life changes dramatically when any family gets an Alzheimer’s diagnosis. The life span after diagnosis averages from four to eight years, although it can be years longer, and the future holds a brutal mental and physical deterioration that often leads to nursing care in a specialized institution.
It seems especially cruel when it hits people in the middle of their lives together — people like David and Robyn who have been married for 26 years and looked forward to their empty nest years and envisioned working less, traveling more and spending time with the grandchildren they hope will come along.
Instead David has quit working and receives disability. They are selling their large house in Sandia Heights to cut expenses and to simplify their lives in anticipation of David being able to do less around the house. Robyn, a part-time dental hygienist, is working more to make up for the loss of income.
David has good days and bad days. He’s using the good ones to help with the move and to try to advocate for the small fraternity of early onset patients. He serves on the governor’s new Alzheimer’s Task Force and works with the Alzheimer’s Association chapter here to try to reach out to other baby boomers with the disease. “I can still do things, and I want to be active,” David said.
Months after the diagnosis, the Esquibels are still dealing with the shock of life with Alzheimer’s and wondering how their next months and years will play out.
“We’re all aware of our mortality, but our path is clearer now,” Robyn told me. “We know we have less time together and we know it’s going to get tougher. It’s a faster death of a dream.”