Aging Care LLC

What It's Like to Live With Early Alzheimer's Part 1

Reprinted from: http://www.nytimes.com/interactive/2016/05/01/nyregion/living-with-alzheimers.html?_r=0

FRAYING AT THE EDGES
By N. R. KLEINFIELD

A withered person with a scrambled mind, memories sealed away: That is the familiar face of Alzheimer’s. But there is also the waiting period, which Geri Taylor has been navigating with prudence, grace and hope.

A LIFE-CHANGING DIAGNOSIS

IT BEGAN WITH what she saw in the bathroom mirror. On a dull morning, Geri Taylor padded into the shiny bathroom of her Manhattan apartment. She casually checked her reflection in the mirror, doing her daily inventory. Immediately, she stiffened with fright.

Huh? What?

She didn’t recognize herself.

She gazed saucer-eyed at her image, thinking: Oh, is this what I look like? No, that’s not me. Who’s that in my mirror?

This was in late 2012. She was 69, in her early months getting familiar with retirement. For some time she had experienced the sensation of clouds coming over her, mantling thought. There had been a few hiccups at her job. She had been a nurse who climbed the rungs to health care executive. Once, she was leading a staff meeting when she had no idea what she was talking about, her mind like a stalled engine that wouldn’t turn over.

“Fortunately I was the boss and I just said, ‘Enough of that; Sally, tell me what you’re up to,’” she would say of the episode.

Certain mundane tasks stumped her. She told her husband, Jim Taylor, that the blind in the bedroom was broken. He showed her she was pulling the wrong cord. Kept happening. Finally, nothing else working, he scribbled on the adjacent wall which cord was which.

Then there was the day she got off the subway at 14th Street and Seventh Avenue unable to figure out why she was there.

So, yes, she had had inklings that something was going wrong with her mind. She held tight to these thoughts. She even hid her suspicions from Mr. Taylor, who chalked up her thinning memory to the infirmities of age. “I thought she was getting like me,” he said. “I had been forgetful for 10 years.”

But to not recognize her own face! To Ms. Taylor, this was the “drop-dead moment” when she had to accept a terrible truth. She wasn’t just seeing the twitches of aging but the early fumes of the disease.

She had no further issues with mirrors, but there was no ignoring that something important had happened. She confided her fears to her husband and made an appointment with a neurologist. “Before then I thought I could fake it,” she would explain. “This convinced me I had to come clean.”

In November 2012, she saw the neurologist who was treating her migraines. He listened to her symptoms, took blood, gave her the Mini Mental State Examination, a standard cognitive test made up of a set of unremarkable questions and commands. (For instance, she was asked to count backward from 100 in intervals of seven; she had to say the phrase: “No ifs, ands or buts”; she was told to pick up a piece of paper, fold it in half and place it on the floor beside her.)

He told her three common words, said he was going to ask her them in a little bit. He emphasized this by pointing a finger at his head — remember those words. That simple. Yet when he called for them, she knew only one: beach. In her mind, she would go on to associate it with the doctor, thinking of him as Dr. Beach.

He gave a diagnosis of mild cognitive impairment, a common precursor to Alzheimer’s disease. The first label put on what she had. Even then, she understood it was the footfall of what would come. Alzheimer’s had struck her father, a paternal aunt and a cousin. She long suspected it would eventually find her.

Every 67 seconds, with monotonous cruelty, Alzheimer’s takes up residence in another American. Degenerative and incurable, it is democratic in its reach. People live with it about eight to 10 years on average, though some people last for 20 years. More than five million Americans are believed to have it, two-thirds of them women, and now Ms. Taylor would join them.

The disease, with its thundering implications, moves in worsening stages to its ungraspable end. That is the familiar face of Alzheimer’s, the withered person with the scrambled mind marooned in a nursing home, memories sealed away, aspirations for the future discontinued. But there is also the beginning, the waiting period.

That was Geri Taylor. Waiting.

Right now, she remained energized, in control of her life, the silent attack on her brain not yet in full force. But what about next week? Next month? Next year? The disease would be there then. And the year after. And forever. It has no easy parts. It nicks away at you, its progress messy and unpredictable.

“The beginning is like purgatory,” she said one day. “It’s kind of a grace period. You’re waiting for something. Something you don’t want to come. It’s like a before-hell purgatory.”

Ms. Taylor is an effervescent woman, with a round face and a froth of swirling hair. Well spoken and ruminative, she evinces a nimble wit and a droll manner. She is 72. She and her husband, also retired, live near Lincoln Center, and they keep a weekend place in Sherman, Conn.

In her health care career, she had seen Alzheimer’s in action. Now she would live it, in high resolution. Those who learn they have the disease often sink into a piercing black grief, try to camouflage their symptoms from a dismissive world as they backpedal from life. Ms. Taylor was wired to absorb adversity, and she pictured Alzheimer’s differently, with gumption and defiance and through a dispassionate, unblinking lens.

As she crossed the pitted terrain of Alzheimer’s, she would find surprises. Disturbing ones and ironic ones, but also uplifting ones. Many days she would not only experience wells of frustration, but also discover wisps of joy. The disease, her new invisible companion, was much larger than she was, and she would have to live submerged in its shell. It made her question her purpose and hunt for possibility.

Her career was concluded. Mortality was pressing in. Was she simply a woman with Alzheimer’s, limited to backward glances, or could this be a new beginning?