Aging Care LLC

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

FRAYING AT THE EDGES Part 3
By N. R. KLEINFIELD

HIS MOOD IMPROVED, Mr. Taylor drew up an Alzheimer’s to-do list, a way to get things started. This was it:

What tell kids; when; grandkids?

How long keep 2 homes?

Advancing care need?

Revise will

End-of-life decisions

Home care ALZ assistance

Where ALZ units?

They began to sort through it. Would they need a two-bedroom apartment, for when they required live-in help? And to accommodate the fact that people with Alzheimer’s sometimes stay up all night? Should they keep both the apartment and the house? Could they carve out a second bedroom in the L of the living room? They toured an apartment upstairs where that had been done.

They decided to stay put and alter the apartment when necessary.

They were comfortable financially, but the disease can rapidly devour resources toward the end. Ms. Taylor didn’t want to be institutionalized but knew it could happen. In time, they would revise their wills, shielding some assets for their children.

What about telling others? Ms. Taylor had been seeing a therapist, for help decelerating into a jobless life. At one session, she mentioned her Alzheimer’s. The therapist said unequivocally: Tell no one. Friends will fall away from you. Stamp you off-limits. This got Ms. Taylor’s hackles up. It was as if there were something illicit about contracting Alzheimer’s. She dropped the therapist.

The Taylors hated the stealth that encased the disease, how it was treated like an unmentionable cousin. They wanted no part of that. Ms. Taylor decided that she would not show herself as some spackled-over person. “It was my decision to let the disease be alive in my life,” she said. “You don’t have to just throw in the towel.”

She didn’t know the order of whom she would tell, nor how to phrase something so shackled with frightful connotations. Your life becomes a script. Alzheimer’s, she knew, leaves its heavy imprint on everyone.

“I don’t care about what they think of me,” she said. To her, Alzheimer’s was another fact of human life. But she worried about what the news might do to them, caught as they would be in the disease’s undertow. That was her nurse empathy kicking in. And she fretted about how others would view her husband. Would they scratch him off the list for social activities, knowing that, well, with his wife the way she was, they were no longer the same couple, no longer a good fit? She didn’t want him wearing the stigma, too.

They waited six months. She wanted time to try on her new life, acquaint herself with its personality, so she could share the news without an overflow of emotion.

She wanted it evident that she was “still steering the ship.”

Then, over the July 4 weekend in 2013, she told the children: her son from an earlier marriage and Mr. Taylor’s two daughters and son from his previous marriage. It was done systematically, child by child with their spouses or partners.

She intentionally told them each separately. “Every kid wants to feel that you have an individual relationship with them,” she explained. “If you sit them together, you’re treating them like a package of Chiclets. You deny them their individuality. They’re going to be reacting to their siblings and their sibling relationships. Dementia has an ugly picture. I wanted them each to have a chance to react on their own.”

It was tough news to hear. It was done tidily. They didn’t need much detail. It was difficult for her, for she knew she was giving them pain.

There were Mr. Taylor’s three children: Mark Taylor, a civil rights lawyer, who lived in Brooklyn with his wife and young daughter; Amy Taylor, a nurse who resided in New Jersey; and Heidi Taylor, a sociology professor who lived in Maine with her two daughters. All had familiarity with the disease. Amy saw it in her work and Heidi in her research in medical sociology. After college, Mark had worked in a nursing home in Maine, and had seen it there.

Ms. Taylor’s son, Lloyd Widmer, a real estate appraiser who lived with his fiancée in Montgomery, N.Y., was not surprised. He had detected glitches in her memory and would tease her about them. Now that he knew their origin, he wasn’t going to back off. He was a verbal person, and they had a talkative relationship. She would joke: “I think he’s been talking to me since before he was born. I heard this tapping sound.”

So he kept teasing her, even more than before, to the extent that his fiancée sometimes grew uncomfortable. Ms. Taylor didn’t mind. They were very close, had been since Mr. Widmer broke his hip in an accident when he was 21. For the first time, he didn’t feel invincible, and it tightened his relationship with his mother.

She postponed informing the grandchildren and moved on to other relatives and close friends, steadily widening the circle. She wasn’t going to take out an ad, “Geri Taylor gets Alzheimer’s,” but she was going to be frank. Her therapist had said: Tell no one. She was going to tell everyone.

Some accepted the news unblinkingly, others quibbled, the glare of the truth too bright for them to stare at. Are you sure … You don’t seem … I didn’t notice. Some practically tried to talk her out of it. She had to argue her case, insist that she had something no one wants.

One friend got worked up, would call her and say, “I’m just so upset and you must be so devastated.”

That stung. Well, thanks for bringing that up, she would think.

Then tell herself: Yes, there are many layers to this. But it’s not all devastating.

A good friend, swept up in concern, combed the Internet for solutions and zeroed in on coconut oil. Some research suggests it may improve cognitive function. A doctor wrote a book about it. She mentioned it to Ms. Taylor.

Considering herself a “medical rules snob,” Ms. Taylor is scornful of charlatan cures and magical thinking. Yet she knew coconut oil was innocuous enough. Out of respect for her friend’s kind intentions, she began drinking it. “At my age, what harm could it do to my system?” she wondered. “It’s good for nails, good for the skin.” She drank it for a few weeks, detecting no benefit, then forgot about it and moved on.

One thing she had noticed during her confession tour left her with a sunken feeling. Some of her friends showed early symptoms. They’re on the path, she thought.