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

FRAYING AT THE EDGES Part 4
By N. R. KLEINFIELD

OTHERS COULD HARDLY see it. She knew better. She was slipping, the disease whittling away at her, leaving her less completely who she was. Certain words became irretrievable, sentences coiled inside her mind and refused to come out, belongings vanished: keys, glasses, earrings. She lost things and then forgot what she had lost. Or that she had lost them.

After returning from a trip, she stowed her suitcase in the closet, still bulging with clothes. Weeks went by. She didn’t miss the items. Then she couldn’t find her glasses. Well, maybe they were in the suitcase. She unzipped it and discovered all of these clothes wedged in there. Hmm.

A fraying at the edges of her life.

“I know the tide is going out on my memory,” she would say.

She had trouble with elapsed time. It was getting impossible for her to distinguish between the past, the present and the future. Blots of time melded together. She seemed forever in the present, as if her life was one jumbled moment — breakfast, shower, lunch, dinner, movie, shopping, everything conflated together and happening right now. It was as if, without even trying, she had become a Buddhist.

“I have no clock in my head anymore,” is how she put it. “The concept of how long it takes to do something has been lost. What an hour feels like is gone. It’s morning and then afternoon, and I think the morning was yesterday. With time, it’s always just the present. If you ask me what I’m doing at 3 p.m., I just have to make it up.”

If she had seen someone that morning, by afternoon she would wonder if it had happened some other day. “I could be talking to you and I could have been shopping, and I won’t be sure if I did that this day,” she said. “Like right now I can’t reconstruct yesterday except that the air-conditioner sounded like it was about to blow up. Because my life was about to end. I’m not able to remember what happened earlier. And I’m not thinking about what will happen next. Because I don’t know.”

She knitted her brow. “The time thing is the part where I feel most alien from myself and alien from other people,” she said. “Sometimes I feel like I’m some sort of loose atom bouncing around. Like I’m not doing anything, because I’m floating from thing to thing and then I don’t remember that I did something. And you’ll say, ‘Well, write it down.’ But then I’ll look at the piece of paper and wonder, What is that?”

To untangle the confusions in the infrastructure of her life, she claimed small victories however she could, savoring them. “I’ve been washing the sheets and towels more often because I’m not sure when I last washed them,” she said. “I forget how much food we have. I check more often. I know Jim is monitoring the food much more.”

Her organizational tool had been her mind. But now her mind was a mess, as if a windstorm had upended its contents. “I always remembered phone numbers, addresses, how much people paid for their house,” she said. “I’ve lost all that.”

She knew how to live with a good memory. Who knew how to live without one?

Her new best friend was her iPhone. She fished it out maybe 20 times a day and scrolled through the blocked-off calendar and notes to herself, the lumber of dates and names that never seemed heavier. Have to be where? When? Do what? Call whom? She used the camera to snap pictures of places to remember them. This was a big improvement over the Alzheimer’s experience of her father, who came home several times in a police car.

To navigate day-to-day minefields, she improvised tricks. “I came up the elevator the other day and saw two of the neighbors and I couldn’t remember their names,” she said. “I forgot the whole floor — 14 names — of my apartment building. I thought I better figure out something. So last week I came up with this system. I’ve got everyone associated with someone in my family. And I’ve been practicing. Eric, the next-door neighbor. His name begins with the same letter as my father. Joe is my stepfather. And so on. It’s not foolproof. But it helps.”

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.