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  1. The Long Goodbye, Part 1: After dementia sets in, mom and daughter make a few more memories
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A kind U. I gratefully accepted her offer to get us on an elevator. She guided us behind the partition blocking the hall leading to the West Wing and through a huge kitchen to a service elevator. It spit us out at the top of the steps. People stared at us as we got off accompanied by a police officer, looking behind us to see if someone of importance was there, too.

The Green, Red and Blue Rooms. The East Room, where Mommy lingered to talk with the attending officer about this being the room where President Kennedy lay in state after he was assassinated. And sitting in front of the TV for days after the president was assassinated. At every stop, my mother would ask what I knew about this or that president, and told a couple of people, out of the blue, that her daughter had interviewed President Carter.

She wanted her photo taken by the paintings of Presidents Kennedy and Clinton and, as a favor to my Republican brother, by the one of Ronald Reagan. Mommy got too hot for a couple of seconds and wobbled, and I ran to a woman who was selling water. After a trip back to the hotel, a two-hour nap and lunch, I asked my mom if she felt well enough to go on another monument tour.

She was most impressed, I think, by the Lincoln Memorial, where she read every word of the Gettysburg Address in a stage whisper and laughed out loud when I showed her how I could make the Washington Monument appear to be between my thumb and forefinger in a smartphone photo. As we walked down the steps of the Lincoln Memorial toward the reflecting pool, Mommy counted each step — just loud enough that I could hear but not so audibly that anyone else would overhear and look.

That night, after I downed a couple of beers while Mommy had another two-hour nap, we had dinner in the Dupont Circle neighborhood with my friends Bil Browning and Jerame Davis. That Bil is a well-known blogger and that his husband, Jerame, is the executive director of Pride at Work, a nonprofit organization that represents LGBTQ union members and their allies. On the way back to our hotel, out of the clear blue, Mommy announced that she had a wonderful time, and that my friends were handsome and smart, and that she was proud of me. That night, we stayed up late, even though we needed to be at the airport by 7 a.

She looked hesitant but then, as she stared at the tchotchkes, perked up. When she had a job, she said, she paid for everything. When you had a job, I told her, you saved my butt more than once. She put her hand in mine and clung to it, letting go only when we had to walk, one by one, through security.

She fell asleep as we waited for takeoff and, ever-so-softly, started to snore. She awoke with a start when the announcements started and put her hand on my leg. As we took off just after a. Has dementia touched your life? Click here for tickets. A quiet moment shared by Helen and her oldest child, Linda Moore. Joy spreads across her face as Helen gets settled in for the flight home to Kentucky after a July trip to Washington, D. With no one around to take a photo on a hot July day, Britt Kennerly and her mom opt for a selfie at the U.

On the first day of a shared journey to Washington, D. Helen Harney is pictured during the early stages of a White House tour on July 16, National Philoptochos Prayer. We hope a cure will soon be found for this tragic disease. The National Philoptochos Society encourages all local Chapters to provide educational programs within their parishes to raise awareness of Alzheimer's Disease. Recommendations for programs include hosting guest speakers, sponsoring a health fair, and distributing information to the community.

Click the above image for the PowerPoint. Click here for a PDF version of the presentation. Additional articles on Caregiving and helping Caregivers can be found at the following link:. Here was a framed photograph of Ms. And a tape of Ms.

Taylor and Mr. She knew their origin at once, a high school classmate she had been engaged to. So I married his best friend. And, oh yes, here was a stack of old photos of the talking dog. Not every extended family has a pet that speaks, but hers did.

The Long Goodbye, Part 1: After dementia sets in, mom and daughter make a few more memories

Her uncle from Germany, Lloyd Bonsall, after whom she named Mr. Widmer, owned Mikey, a boxer who seemingly spoke several words. The dog had acquired a certain fame, even been on German TV. A talking dog. She had to laugh. It got her reflecting on her own speech. She had always been so meticulous about choosing just the right words. That had become impossible. And you know what? I get the point across. She very much enjoyed it. It was so realistic — the grappling for words and everything.

It was straight on. I liked that the husband walked away at the end. A lot of people walk away. She had a fixed idea of what she desired, no matter where the disease went. Not she.

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Arranged at the dining table, they ate fat sandwiches from the IGA. Cookies for dessert. She had always enjoyed a good cookie, but in her new state she was often fatigued and sugar invigorated her. The afternoon went. In the cold air, her son packed up the car with his memorabilia. It smelled like rain. She mentioned that Mr. Taylor had recently read an item in the newspaper about a Phase I clinical trial, a very early-stage study for an experimental drug.

This was a new thing on her mind, a new project. It was hoped to be one of the more promising possibilities in a field littered with disappointments. Right away, Ms. Taylor had started trawling the Internet and learned that part of the trial was underway at Yale-New Haven Hospital. Maybe one could be hers. Soon, she was in New Haven for testing.

She found out that had she waited another 48 hours to call, she would have been out of luck. A PET scan confirmed that she had amyloid buildup in her brain, another prerequisite for the trial. So she was tested for it. A positive result would be her one ticket in. The answer would come in a few weeks. This felt like hope and it had a potent allure for her, the possibility, long shot that it might be, that the drug might negotiate some sort of truce with this disease. She very much wanted in. One thing the Taylors did was buy a modest amount of Biogen stock.

Their financial adviser frowned on the choice, thinking it expensive. But they did it for emotional reasons — a tiny vote of confidence, a gesture that might change the calculus and bring them the luck they needed.

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It was at the stub end of a winding street, a short walk to the ocean. Unit D was a neat one-bedroom. A white dry-erase board was clamped to the wall near the entrance, scribbled with reminders, phone numbers, computer passwords. Safeguards for the patchy mind. The Taylors took the rental for January and February of last year to escape the cold. They drove down, saving on airfare and the cost of renting a car there. Gets me all confused, and I bring the wrong things. Taylor had noticed this about her, also how recently she was sapped of energy and would forget what day or month it was.

Her life went like that. Taylor had gotten the awaited news from Yale. It was bittersweet. Her acceptance to the drug study meant she had the gene ApoE4. To her surprise, she had two copies, meaning she had inherited it from both parents. Her parents were dead, and only her father had gotten the disease. That she had the variant from both of them meant that her son had it for sure. I wanted to be in the known group. Then I was shocked that I got it from both parents. And now my son definitely has the gene.

That saddens me. Either way, she would be entitled to the actual drug for three and a half years after the yearlong study period. They sat out by the communal pool, watching a willowy neighbor execute laps. They had at first been hesitant, feeling a wedge of anxiety about engaging with the public this way.

Yet it was a friendly audience, and they were looking forward to it. If it went well, perhaps it was something they could keep doing. Maybe how they were figuring out this disease could help others. Taylor fired up his tablet. Bowed over the screen, he tapped away, fiddling with the presentation. Each had a part. He planned to speak without notes. With her melting memory, Ms. Taylor found herself unable to memorize a solitary paragraph. She had scrolled through the script several times, and each time it remained foreign to her, even though she had written it.

She would have to read her part. Taylor was content to bake in the mellow sun and the moderate breeze. Restless, Ms. Taylor headed for the ocean. Under puffy white clouds, she ambled along the gnarled coastline, leaving dull footprints in the soft sand. The wrinkled waves slapped the sand and retreated. She had quit driving entirely, no longer trusting herself. In fact, since her minor accident the previous July, her first ever, she had driven only twice. She was at peace with the decision, knowing it was best.

She dreaded bedtime. She thought it was the Aricept medication she took before bed. She spoke to her doctor and suggested taking half her pill at night and half in the morning. He signed off, and it seemed to be working. Last evening, the nightmares had retreated, and no fears yanked her awake. Some skittering birds caught her eye, and she paused to snap pictures, then sank back on her heels.

She greeted a passer-by, a pug-nosed man walking his dog.

"Still Alice" novelist Lisa Genova shines spotlight on early onset Alzheimer's - CBS News

Still loved to engage everyone, often even got around to her condition. It bothered her, though, the standard reactions, of which there were two:. She felt as if she had to prosecute her case, like a lawyer before a frowning jury, to meticulously offer up the evidence to get the rightful verdict.

There were times she felt a field guide was needed to teach people the rudiments of how to respond. Politely, he asked what sort of symptoms she experienced, how she was handling them. They chose some touristic diversions, beginning with the turtle hospital. The Loggerhead Marinelife Center is a beachside ocean conservation and research organization that rehabilitates hurt sea turtles. Each crippled turtle is assigned to one of a mass of pools. The Taylors craned in for a look. The back stories were frightful.

Mayflower lost part of his left front flipper from frostbite. Reef was struck by a propeller, paralyzing his back flipper. They rippled through their tranquil pools, mending, waiting for their release back to the sea. The guides poured out deep stores of turtle information. Yes, all roads wound back to the disease. Later, they drove to Grassy Waters Preserve, a favorite of hers. The quiet and solitude calmed her mind.

After a nap, it was time to head to the church. Some three dozen people, casually dressed, squeezed into the event space at the First Unitarian Universalist Congregation of the Palm Beaches. The room had been set up with wiped-down tables and plump trays of catered pasta.

Once the crowd had filled their stomachs, the buzz of voices ceased and the Taylors told their story. Taylor sat in a long-legged chair. When she stood too long, she got tremors. The small details drew good laughs. How Ms. Taylor kept confusing their toothbrushes and finally threw away Mr. She gave tips on how to communicate with someone with the disease: Focus on one subject, never ask several questions at the same time. Part of the format had Mr.

Taylor asking questions, and his wife answering them. Here are answers to some common questions about a disease that can seem frightening, mysterious and daunting. The audience, faces upturned, was hushed and rapt, hearing an aging couple tell about how they were torn up and united by a disease. A man wanted to know if she did crossword puzzles and how good she was. Laura Noel, Ms. Two years ago, before Ms. Taylor began to share her condition widely, Ms.

Noel was examining Ms. The next year, she told her. When the Taylors had arrived in Florida that year, Ms. Noel heard that her aunt kept mixing up her mug with Mr. She drank coffee; Mr. Taylor drank tea. He disliked residual coffee taste in his mug.

So Ms. Noel, an artist, painted on Ms. Noel asked, What does Ms. It was a bright squint of a day. The Taylors were quiet in the car, waking up. The first week of March she had had her first monthly infusion in the trial of the Biogen drug, its formal name now aducanumab. So far, no side effects. Like last time, she would undoubtedly first suffer through the dreaded cognitive test.

Be plied with lists of words and then asked to recall them. Shown simple pictures and asked to recite what she had seen. With each sequence, she might squeeze out two or three from her flickering memory and then admonish herself over her dreadful showing. Last time, she did decently with bird names and pictures of hats. Cars fizzed by, the mishmash of traffic. She gazed at the bland scenery. She sighed. I keep losing them. They were in good cheer. A few weeks before, Biogen announced at a neurology conference that an analysis of data on patients over a year had shown positive results for a small early trial meant to measure the safety of the experimental drug.

It found that the drug slowed cognitive decline and significantly reduced plaque in the brain. Experts saw the data as encouraging. Of course other drugs had offered initial promise only to be discarded as false leads. In fact, further results a few months later were more nebulous. Tucked into the announcement, though, was the fact that those with the gene variant ApoE4 were more susceptible to localized swelling in the brain at higher dosages.

That was Ms. At the office, excellent news. No cognitive testing. All that anguish for nothing. Just a quick physical. The doctor noticed a slight tremor in Ms. Old news, she said. At the hospital, she slid into a bed bathed in fluorescent light. As she lay outstretched, an IV needle went into her left arm. The infusion began. Christopher H. A geriatric psychiatrist, Dr. He was drawn by intellectual curiosity and grandparents who had it. By now, he had watched the parade of drug failures firsthand.

And yet there he sat, watching something potentially promising hanging from a bag and dripping into Ms. They asked him how the drug name was pronounced. At this point, the drug, as well as others in testing, remained question marks. It would take years to know their genuine worth. He was rightly cautious.

I know that sounds so obscure. She felt hopeful that the drug would work. It was her inner optimism, her desire to locate a way out. And why not? The doctor asked about her habits. She allowed that she loved reading but confined herself to strictly linear books. Same guy moaning and groaning all the way through. What support groups was he attending, entwined as he was with the disease? Act and talk burdened. Geri and I have decided to live as fully as long as we can.

Taylor told him about the therapist she had gone to, who advised her not to tell anyone about her condition. The five of them scrunched into the one-bedroom, one-bathroom apartment. Taylor had just given the granddaughters the news about her condition over Christmas.

They were not blindsided, having noticed bouts of absent-mindedness. They had cooked together since she was 4. Maggie knew a bit about the disease. A disquieting incident occurred when they were visiting over Christmas. Taylor came into the room where both girls were. She stared at Maggie with blank eyes, thinking she was her sister.

Maggie picked up on it at once. They walked the High Line in the unseasonably brisk air. The two girls breezed ahead, swirling in and out of the maze of strollers, people sipping fizzy drinks. It started to drizzle. They ducked into a busy diner for a snack. Conversation drifted to Ms. At one point, it had been so bad she was unable to ride the subway. She told about enrolling in exposure therapy, being accompanied by a counselor to Whole Foods and on the subway, being urged to squeeze a curling brush. The family laughed about a little adventure. The other day, they got back to the apartment and Ms.

Maybe she had thrown it out with the trash in the hallway receptacle. They trudged to the basement, called the phone, eavesdropped at the smelly trash bags. Still, she felt glad to have scoped out the basement, imagining she would be back there again, hunting for things she unintentionally threw out. The phone was in the apartment, having slid behind a table. After their snack, they wandered around the stores.

While the two girls nosed through the clothing racks with Ms. She worried about that. It was steamy, and the air had a baked odor to it. Taylor cooked a big meal. It would be different this year. Yet she had been making mistakes in the kitchen. No, the disease took no holidays. Finally, this time she had told them she would cook but could they please manage the day.

Turnout was good. Her brother and his wife were there from California, since they were visiting children and relatives nearby. Her sister had come from upstate New York. Some 20 in all. A list fastened to the refrigerator gave Ms. Hallenbeck and Mr. Widmer their duties.

Taylor could no longer prepare even rudimentary dishes without consulting the instructions on the package. It was serve yourself, and people got their food and found seating in the soft light, forks clicking against plates, the soft murmur of voices. Taylor circulated, took some of them down the sloped property to the lake. Taylor was enjoying it, into the moment. Still, fatigue engulfed her. Even on ordinary days her strength ebbed by afternoon, her battery not staying charged as long.

She liked to nap. Or she might sit down in the silence of her home and read a magazine or camp out before the TV. She watched a lot more movies. Sometimes she took a morning or an afternoon and, feeling a lassitude, vanished into herself. She was having visual issues.

She might sift through her cosmetics bag for eyeliner and look right at it but not recognize it. Part of getting kitchen help was to allow Ms. Taylor to visit more with her guests, some of whom she rarely saw. She mingled, but her condition undercut the rewards. The town where my sister lives! For 40 years! So the conversations become very stilted.

Group conversations especially frustrated her. My strategy is to talk first. Introduce a new subject before someone else beats me to it. Listen to a lyric and then name the song. Someone did. They moved crisp and fast. They spit out their guesses, working together, ganging up on the clue until they had it cornered.

Although that was beautiful. Mursch lobbed out clues. You could practically hear brains whirring as, brows furrowed, they dredged through their wobbly memories for the answer. They drew some blanks, but identified most of them. Eight participants, six men and two women. It had been more than a year since Geri Taylor had joined, and she was a faithful attendee, hurling herself into the mental games they played with zest. The time burned by fast. Taylor found pushing sentences out more and more challenging.

With little preamble, Ms. Mursch segued from game to game. Words that start with the letter X. Phrases where the first word ends with A and the second word starts with B. Quiz games: vegetable named for a city in Peru; device that answers questions at a party. Modes of transportation that start with B.

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Jobs that start with T. Call out your answers. But never any exasperation from Ms. Mursch, who ministered to them with bubbly enthusiasm and blandishments. That is how you did it there. Everyone openly congratulated success. Comments traversed the room. One member was in a step program, and he observed that what went on there had parallels, the denial, the stigma, the need to admit what you had in order to move forward.

People in Memory Works average about one and a half to two years before being weeded out, no longer able to do the games. Some hang on longer. Taylor was closing in on the average, still very much an animated participant. But she was. Outwardly, she might appear unchanged, but internally she found she had to work harder, expend more energy, to get the same result. She was like a factory suffering from steadily diminishing productivity. They are told. One man had been tapped the previous month.

He had been a member for nearly four years, mocking the odds. Of late, he had become withdrawn, baffled by the exercises.

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He was recommended to another organization that could meet his needs. His absence was discussed with the group. For they anticipated their own crunchtime, the moment when they would get the tap on the shoulder. For some time, she had chewed it over with her closest friend in Memory Works. He was 73, a retired software designer and the veteran of the group. He had been coming for four years. All of his original colleagues had deteriorated and departed.

They got along well. Yet they knew they had plenty of living to do, plenty of independent living. They were not useless. But she felt the need to do more. She and her friend wanted to see strategies identified and shared for navigating the everyday mundanities, wisdom to wrench survival out of this disease. Since they were the ones who had it, they felt they were the authorities. But, then again, who were they? Last August, they met with two of the CaringKind staff members. Taylor gave her pitch.

She sensed skepticism. She told them that by not doing this, they were enabling dependency. Infantilizing them. They saw that she was serious. Three weeks later, in September, CaringKind set up a series of three workshops to swap strategies — living with early-stage memory loss. For and by the underdogs. Though the CaringKind staff members felt this did fill a gap, they anticipated faint interest, imagining maybe a half-dozen participants would show up. But 22 did. They divided them into two groups, and for the third session everyone met together. A facilitator helped direct things.

Strategies were called out and put on a white board. The picture was mixed. Many of the ideas in Ms. How to rely on a smartphone, getting an electronic pill dispenser Ms. The idea of socializing frequently, inventing reminders, getting physical exercise and, a big thing with her, finding a purpose. There were a lot of unrealistic expectations.

One person said there ought to be billboards telling about them and their problems. The country should know. Another said there should be TV spots. Near the end, Ms. Taylor said maybe the group should have handbooks published detailing these strategies. That, at least, seemed doable. The CaringKind staff members said they would do that. Taylor was pleased that a message had been put out. These strategies, she felt, could be compasses, leading them on. She and her friend intended to keep pushing the organization. It was a beginning step.

She knew that a lot more than 22 people needed this. They got talking. He went home and got Ms. Taylor, and they returned and all talked.