WHEN ALZHEIMER’S IS PER­SONAL

One Woman’s Fight

Reader's Digest Asia Pacific - - Front Page - BY N. R. KLEINFIELD FROM THE NEW YORK TIMES

ITBEGAN WITH WHAT SHE SAW IN THE

bath­room mir­ror. Geri Tay­lor padded into the shiny bath­room of her New York apart­ment and ca­su­ally checked her re­flec­tion. Im­me­di­ately, she stiff­ened with fright. She didn’t recog­nise her­self. She gazed at her im­age, think­ing: Oh, no, that’s not me.

Who’s that in my mir­ror? That was late 2012. She was 69 years old and re­cently re­tired. For some time she had ex­pe­ri­enced the sen­sa­tion of clouds com­ing over her. There had been a few hic­cups at her job. She was a nurse with a mas­ter’s de­gree in pub­lic health, who’d moved into sev­eral ad­min­is­tra­tive po­si­tions. Once, she was lead­ing a staff meet­ing when she had no idea what she was talk­ing about, her mind like a stalled en­gine.

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. It kept hap­pen­ing. Fi­nally he scrib­bled on the wall which cord was which.

So, yes, she’d had inklings that some­thing was go­ing wrong with her mind. But to not recog­nise her own face! This was when she had to ac­cept a ter­ri­ble truth. “Be­fore then I thought I could fake it,” she would later ex­plain. “This con­vinced me I had to come clean.”

She con­fided her fears to her hus­band and made an ap­point­ment with a neu­rol­o­gist. The neu­rol­o­gist lis­tened to her symp­toms, took blood, gave her a stan­dard cog­ni­tive test. She was asked to count back­wards from 100 in in­ter­vals of seven. He told her three com­mon words, said he was go­ing to ask her about them later. When he asked, she knew only one.

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

Alzheimer’s is de­gen­er­a­tive and in­cur­able, and demo­cratic in its reach. World­wide nearly 47 mil­lion peo­ple have Alzheimer’s or re­lated de­men­tia. Peo­ple live with it about eight to ten years on av­er­age af­ter di­ag­no­sis, though some peo­ple last for 20 years.

The dis­ease 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. But there is also the be­gin­ning, the wait­ing pe­riod. Now this was Geri Tay­lor. Wait­ing.

SHE NEVER CRIED

Geri re­mained en­er­gised, in con­trol, the silent at­tack on her brain not yet in full force. But what about next month? Next year? The dis­ease would be there. It nicks away at you, its progress messy and un­pre­dictable.

“The be­gin­ning is like pur­ga­tory,” she said later. “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.”

Geri is an ef­fer­ves­cent woman, with a round face and a froth of swirling hair. In her health­care ca­reer, she had seen Alzheimer’s in ac­tion. Now she would live it. Those who learn they have the dis­ease of­ten sink into a pierc­ing black grief. They try to cam­ou­flage their symp­toms from the world as they back-pedal from life. But Geri pic­tured Alzheimer’s dif­fer­ently, with de­fi­ance and through a dis­pas­sion­ate, un­blink­ing lens.

Cross­ing into the pit­ted ter­rain of Alzheimer’s made her ques­tion her pur­pose. Her ca­reer was con­cluded. Mor­tal­ity was press­ing in. Was she lim­ited to back­ward glances, or could this be a new be­gin­ning?

At first her hus­band had trou­ble ad­just­ing. He wouldn’t meet her eyes. He drew away. Jim is two years younger than Geri, a lanky, warm-voiced man. To un­freeze the chill be­tween them, it took a pep talk that put the present in softer per­spec­tive. Geri told him, “This is some­thing that is go­ing to de­velop, but it hasn’t de­vel­oped yet.”

Yes, some­thing big had hap­pened. Yet they were still alive. Still to­gether, with more mileage in their fu­ture. So they moved for­wards into their re­ordered lives.

Many think of Alzheimer’s as a mem­ory dis­ease, but its aw­ful mys­ter­ies in­volve more than that. Not only was her mem­ory leav­ing her, but also what is called ‘ex­ec­u­tive func­tion’. You lose the se­quence of steps in a process, like a man who be­gins shav­ing be­fore ap­ply­ing shav­ing cream.

She couldn’t know the speed of her de­cline. It is dif­fer­ent with ev­ery­one. The im­pact, she learned, in part ap­pears de­ter­mined by the amount of

“THE BE­GIN­NING IS LIKE PUR­GA­TORY,” GERI SAID. “IT’S KIND OF A GRACE PE­RIOD. YOU’RE WAIT­ING FOR SOME­THING”

cog­ni­tive re­serve, the men­tal ca­pa­bil­i­ties that ac­cu­mu­late over a life­time. She felt she had plenty of that – at least she hoped so.

Her doc­tor put her on Ari­cept, a drug de­signed to im­prove cog­ni­tive per­for­mance. It seemed to sharpen her think­ing, es­pe­cially in the morn­ing, but she couldn’t re­ally gauge how much good it did.

Her be­lief sys­tem was op­ti­mism. She never cried. De­pres­sion, she knew, would lead her down al­leys she didn’t want to visit. In­stead, the dis­ease made her hun­gry for liv­ing. She vowed to plunge ahead and ac­cel­er­ate her long­time in­ter­est in pho­tog­ra­phy. See friends more. She aimed to live the most ful­fill­ing days she could at what seemed the bleak­est pos­si­ble time.

Jim drew up a to-do list, a way to get things started. When to tell the kids and the grand­kids. How long to keep two homes. Ad­vanc­ing care need. End-of-life de­ci­sions.

Geri was ad­vised not to tell peo­ple of her con­di­tion. Friends will fall away from you, she was told. It was as if there were some­thing il­licit about con­tract­ing Alzheimer’s. The Tay­lors wanted no part of that. “It was my de­ci­sion to let the dis­ease be alive in my life,” Geri said. “You don’t have to just throw in the towel.”

They waited six months. She wanted time to try on her new life, so she could share the news with­out an over­flow of emo­tion. Then in the sum­mer of 2013, she told the chil­dren.

They were not sur­prised. They had de­tected glitches in her mem­ory, and now they knew their ori­gin. She post­poned in­form­ing the grand­chil­dren and moved on to other rel­a­tives and friends. Some ac­cepted the news, oth­ers quib­bled, the glare of the truth too bright. Are you sure … You don’t seem … I didn’t no­tice ... Some prac­ti­cally tried to talk her out of it.

Oth­ers could hardly see it. She knew bet­ter. She was slip­ping, the dis­ease whit­tling away at her. Cer­tain

words be­came ir­re­triev­able, sen­tences re­fused to come out. Be­long­ings van­ished: keys, glasses, ear­rings. She lost things and then for­got what she had lost.

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 time. “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.” If she had seen some­one that morn­ing, by af­ter­noon she would won­der if it had hap­pened some other day.

Her new best friend was her iPhone. She fished it out maybe 20 times a day and scrolled through the cal­en­dar and the notes she made to her­self. Have to be where? When? Do what? Call whom? She used the cam­era to snap pic­tures of places to re­mem­ber them.

In March 2014 she went to the Car­ingKind or­gan­i­sa­tion in mid­town Man­hat­tan. She had been re­luc­tant to visit, pic­tur­ing the place as a re­source for those sunk deeper into the dis­ease’s dark­en­ing world, that it was too early for her. But once she min­gled, she knew she was right on time. “I thought these were my peo­ple,” she said. “This is where I be­long.”

She en­rolled in some pro­grammes, in­clud­ing a pho­tog­ra­phy work­shop. She signed on for a Mem­ory Works group that en­gaged in mind ex­er­cises. The mod­er­a­tor said the games would not cure them or fore­stall their de­cline. They were there to have fun – name words start­ing with the let­ter B; foods start­ing with the let­ter M.

The best part was not hav­ing to mask her short­com­ings. In the out­side world it was a con­stant strug­gle to keep up. Out­side, peo­ple with Alzheimer’s are looked on as bro­ken. In­side these walls, though, ev­ery­one had it. Alzheimer’s was nor­mal. In Mem­ory Works, she felt pro­tected and safe.

The chum­mi­ness among these strangers was amaz­ing. They were hi­jacked by a ghastly dis­ease. But they joked around, egged one an­other on. “Ev­ery­one’s laugh­ing,” she re­ported, “and ev­ery­one is happy they are with peo­ple just like them who can’t get the words out.” Sit­ting there in the bub­bly am­bi­ence, she would some­times think, “We shouldn’t be this happy.”

HER NEW BEST FRIEND WAS HER IPHONE. MAYBE 20 TIMES A DAY SHE SCROLLED THROUGH THE CAL­EN­DAR

It was as if they were all high. High on Alzheimer’s.

COP­ING STRATE­GIES

Geri be­came watch­ful when she was walk­ing. Her gait had changed. She felt as if she was weav­ing, one wrong step away from whirling onto the floor. It was worst when she talked while walk­ing. Once she fell while con­vers­ing with friends. Her new rule: talk only if nec­es­sary while walk­ing.

One day she was driv­ing and she bumped into an­other car. There was no se­ri­ous dam­age, but it was to­tally her fault. Not long af­ter, she was driv­ing with Jim when she came on some road­works. A flag­man mo­tioned her to stop. In­stead, she con­tin­ued on­ward, feel­ing an ir­re­sistible urge to speak to the flag­man. Fi­nally, Jim got her to stop. She couldn’t ex­plain her odd be­hav­iour.

That night, Jim sug­gested that she ought to stop driv­ing, that she was us­ing poor judge­ment. She lashed out at him, told him he used poor judge­ment all the time. Drove too fast. Tail­gated. But the next day, once the weight of in­evitabil­ity set­tled in, she agreed to cut back, drive only when ab­so­lutely nec­es­sary.

A friend showed her the ‘Find My Friends’ app on her iPhone. “I hope this doesn’t of­fend you,” the friend said.

“I’ve al­ready got it,” Geri replied. She had set it up with Jim, al­low­ing him to track where she was through their phones, in case she got lost and had to be res­cued.

She was a dif­fer­ent per­son with Alzheimer’s, tugged back and forth across the bor­ders of the dis­ease. One day things were one way and then they were an­other. Feel­ing nor­mal. Trapped in a dif­fuse cloud. Burst­ing with en­ergy. Worn out. The dis­ease wasn’t a straight line.

The fluc­tu­a­tions would lead her to ques­tion her­self. “It’s the fraud com­plex that Alzheimer’s peo­ple have,” she said. “You have good days and bad days. And when you’re hav­ing a good stretch you think, Am I a fraud?”

But then the dis­ease would clear its throat and re­mind her. Some nights, she would sleep­walk. One morn­ing, she woke up and found her­self stock­still in the liv­ing room, peer­ing out the

win­dow. Some­times she hal­lu­ci­nated and had creepy, in­volved dreams. She would scream in her sleep, and Jim had to shake her awake.

She felt like she was work­ing at half­speed. “I can’t just open my closet in the morn­ing and put to­gether what to wear. I lay things out the night be­fore or start ear­lier in the morn­ing. One thing I con­cen­trate on is look­ing or­derly. I don’t want to look old and crazy. In a heart­beat, I know, I could look dis­or­derly.”

Food also mat­tered less to her. She never liked gro­cery shop­ping. She liked it even less now. “One big symp­tom is the in­abil­ity to cook and assem­ble,” she said. “Now I’m happy with a plain sand­wich, or I’m buy­ing

pre-cooked chicken.”

She had trou­ble keep­ing up in a conversation. “When I’m talk­ing to friends, I’ll pre­pare,” she said. “Do some re­search. Like make sure to ask about the lat­est grand­daugh­ter. Which I for­got to do the other morn­ing. Or to ask about the hus­band, mak­ing sure there is a hus­band.”

One thing nag­ging at her was find­ing pur­pose in her life, a pur­pose to re­place her ca­reer. She’d loved her work. She never wanted to sim­ply walk the side­lines.

Pho­tog­ra­phy had been a side­line for 30 years, but now she could re­ally de­vote time to it. Birds were her avid in­ter­est. She put her best pho­tos on cards and gave them as gifts.

Cer­tainly, the pho­tog­ra­phy was a salve. When she im­mersed her­self in it, the world around her seemed to re­lax. The Alzheimer’s felt oddly ab­sent, not able to touch her. With her birds, there was no need to scrab­ble for the right word. She didn’t have to talk to them. “For me, the dis­ease doesn’t ex­ist when I’m tak­ing pic­tures,” she said.

The birds were won­der­ful. But were they enough? She didn’t think so, but hadn’t yet imag­ined what could be.

The Car­ingKind care­giver work­shop be­gan in the train­ing room. There were eight par­tic­i­pants, Jim Tay­lor among them.

The mod­er­a­tor told the par­tic­i­pants that even­tu­ally they would need sup­port, too. “You can only bend so far be­fore you break,” she said. She in­vited shar­ing. Driv­ing came up. A woman said she got ner­vous when her hus­band al­most ran a red light and stopped only be­cause she yelled. After­wards, she con­fis­cated his keys. He got fu­ri­ous. She re­lented. They were still hash­ing it out.

One frus­trated woman, car­ing for her hus­band, said with a qua­ver in her voice: “You’re left on your own with this, look­ing all the time, watch­ing – oh you re­peated that two times, you re­peated that three times. I don’t like it.” An­other woman said: “He prob­a­bly doesn’t like it, ei­ther.”

The mod­er­a­tor brought up the or­gan­i­sa­tion’s med­i­cal alert pro­gramme. Wan­der­ing is com­mon with Alzheimer’s. It typ­i­cally hap­pens if there is a dis­rup­tion in one’s rou­tine. So the or­gan­i­sa­tion rec­om­mends ev­ery­one get an iden­ti­fi­ca­tion bracelet.

Next the mod­er­a­tor said she wanted to try an ex­er­cise. She handed ev­ery­one two sheets of pa­per. Each con­tained a star drawn in dou­ble lines. She asked them to draw a line be­tween those dou­ble lines, trac­ing the out­line of the star. Once they fin­ished, she asked how they felt about the ex­pe­ri­ence.

Back came their an­swers: “Bor­ing.” “An­noy­ance.”

She then handed ev­ery­one a small mir­ror. Now, on the sec­ond sheet, she wanted them to po­si­tion the mir­ror so they could see the star in the re­flec­tion. Then to trace the star again while look­ing only in the mir­ror. The point was to let them ex­pe­ri­ence a taste of

WITH HER BIRDS, THERE WAS NO NEED TO SCRAB­BLE FOR THE RIGHT WORD. SHE DIDN’T HAVE TO TALK TO THEM

what it was like to have de­men­tia, to pro­mote un­der­stand­ing and em­pa­thy.

As he fum­bled his way through the star ex­er­cise, Jim Tay­lor said, “This is like driv­ing a trailer in re­verse.”

The re­sults were ap­palling, lines scoot­ing all over the place. Again, the mod­er­a­tor asked how they felt.

“Frus­trated.” “Dis­ori­ented.” A piqued woman asked, “So is this how they feel, peo­ple with Alzheimer’s?”

The mod­er­a­tor replied, “I would put that back to you. What do you think?”

The woman was quiet. “Yes,” she said softly, “I guess it must be.”

SHAR­ING THE JOUR­NEY

Jim Tay­lor read a news­pa­per ar­ti­cle about an early-stage study for an ex­per­i­men­tal drug. The drug was aimed at slow­ing men­tal de­cline by break­ing up the plaques formed by the beta amy­loid pro­tein that are the hall­mark of Alzheimer’s. The com­pany Bio­gen was test­ing sub­jects with mild cases of Alzheimer’s. It was a promis­ing pos­si­bil­ity in a field lit­tered with dis­ap­point­ments.

Geri learned that part of the trial was un­der­way at Yale New Haven Hos­pi­tal in Con­necti­cut. A few slots were still open. Soon she was in New Haven for cog­ni­tion test­ing. The re­sults placed her in the mild stage of Alzheimer’s, the ap­pro­pri­ate group. A PET scan con­firmed she had amy­loid build-up in her brain, an­other pre­req­ui­site for the trial.

This felt like hope and it had a po­tent al­lure for her, the pos­si­bil­ity that the drug might ne­go­ti­ate some sort of truce with this dis­ease.

She wouldn’t know whether she would re­ceive the drug or a placebo, though be­cause of the way the trial was struc­tured, the odds of get­ting the treat­ment were high. Ei­ther way, she would be en­ti­tled to the ac­tual drug af­ter the year-long study pe­riod.

Mean­while, in Fe­bru­ary 2015, the Tay­lors were in­vited to give a din­ner talk about liv­ing with Alzheimer’s at a church that Jim’s sis­ter be­longed to.

They had at first been hes­i­tant. But if it went well, per­haps it was some­thing they could keep do­ing. Maybe how they were fig­ur­ing out this dis­ease could help oth­ers.

Three dozen peo­ple squeezed into the room at the church. Geri sat in a chair. When she stood too long, she got tremors.

Jim said: “We’re happy to be here tonight to share our jour­ney. While some­times dif­fi­cult, it’s ac­tu­ally been a rather ex­cit­ing time.”

They told about the way the dis­ease weighed on them, how they avoided the lock­down peo­ple with Alzheimer’s went through, how they chose for­ward as the only sen­si­ble di­rec­tion to fol­low. The small de­tails drew good laughs. How Geri kept con­fus­ing their tooth­brushes and fi­nally threw away Jim’s be­cause she couldn’t fig­ure out whose it was, even though, as she put it, “there were just the two of us.”

She gave ti p s on how to

THE AU­DI­ENCE WAS HUSHED AND RAPT, HEAR­ING A COU­PLE TELL HOW THEY WERE TORN UP AND UNITED BY A DIS­EASE

com­mu­ni­cate with some­one with the dis­ease: fo­cus on one sub­ject, never ask sev­eral ques­tions at the same time. When a friend pelted her with mul­ti­ple ques­tions, it left her baffled.

The au­di­ence was hushed and rapt, hear­ing an age­ing cou­ple tell how they were torn up and united by a dis­ease.

They took ques­tions. A man wanted to know if she did cross­word puz­zles. She said she didn’t, they were too frus­trat­ing. But she still loved to read and was plough­ing through Crime and Pun­ish­ment. Some­one else asked, “What do you want to hear when you tell some­one you have Alzheimer’s?“

“I love you, any­thing I can do I’ll do,” said Geri. “The ac­cep­tance is more im­por­tant than the par­tic­u­lars.”

NEW MIS­SION

In March 2015, Geri had her first monthly in­fu­sion of the trial drug ad­u­canumab. Bio­gen had re­cently an­nounced that an anal­y­sis of 166 pa­tients had shown pos­i­tive re­sults. The drug slowed cog­ni­tive de­cline and 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.)

In April the doc­tor sat with Geri as she lay out­stretched, an IV nee­dle in her arm. She knew about the pa­rade of fail­ures for Alzheimer’s drugs. “It must be ex­cit­ing to be in­volved in a suc­cess,” she said to the doc­tor.

“Well, a qual­i­fied suc­cess,” he replied. “It’s still early.”

At this point, the drug re­mained a ques­tion mark.* It would take years to know its gen­uine worth. He was rightly cau­tious. “How are you feel­ing?” he asked. “Fine.” “No itch­ing?” “No.” She felt hope­ful. It was her in­ner op­ti­mism, her de­sire to lo­cate a way out. She told the doc­tor, “I’ve said to Jim that if I could be freezedried like this, I could live with that.”

And, sure, who wouldn’t grab that

*On Au­gust 28, 2017, Bio­gen an­nounced pos­i­tive re­sults from a three-year trial that found lev­els of amy­loid plaque con­tin­ued to de­crease in pa­tients tak­ing ad­u­canumab. Two global Phase 3 stud­ies are cur­rently un­der­way.

bar­gain? Live with hunt­ing for words, mis­plac­ing her be­long­ings, not driv­ing? Why not? She knew noth­ing would re­turn her to the per­son she had been, but be­ing freeze- dried where she was bet­ter than the ug­li­ness of the dis­ease’s end stage.

Mean­while, Geri and her hus­band gave more talks on Alzheimer’s. They were be­com­ing apos­tles for how to live with the dis­ease. But she needed to do more. She wanted to see strate­gies iden­ti­fied and shared for nav­i­gat­ing the ev­ery­day world, for wrench­ing sur­vival out of this dis­ease. Since she had it, she felt she was an author­ity.

In Au­gust, Geri met with two Car­ingKind staff mem­bers. Geri gave her pitch. She didn’t want

a tra­dit ional sup­port group. She wanted a group to share strate­gies, an Alzheimer’s tu­to­rial that could be peer- driven. “We don’t want to be done to, we want to do.”

Car­ingKind set up a se­ries of three work­shops to swap strate­gies for liv­ing with early-stage mem­ory loss. For and by the un­der­dogs. Peo­ple voiced their prob­lems. There was in­ter­est in clin­i­cal drug tri­als. Strate­gies were called out and put on a white­board.

Geri Tay­lor of­fered her ideas. Of how to rely on a smart­phone, so­cial­is­ing fre­quently, in­vent­ing re­minders and find­ing a pur­pose. She sug­gested the group should have hand­books pub­lished de­tail­ing these strate­gies.

Later, the Tay­lors met with the

Con­necti­cut chap­ter of the Alzheimer’s As­so­ci­a­tion, say­ing they were amazed at how many peo­ple were still in the closet about Alzheimer’s.

“If it stays hid­den,” says Geri, “peo­ple don’t de­velop the strate­gies to com­pen­sate for the deficits. They just slowly pass into a state of in­abil­ity.”

The Alzheimer’s As­so­ci­a­tion staff mem­bers agreed. They men­tioned a woman who couldn’t re­mem­ber where dif­fer­ent dishes were stored so she put glass doors on her cab­i­nets. And the hus­band who wor­ried his wife would get lost when they went shop­ping, so now they wore shirts of match­ing colour.

Geri Tay­lor lis­tened to all this, and then the as­so­ci­a­tion ex­ec­u­tive said she wanted Geri’s help. Come and speak. Be­come one of their cham­pi­ons. Maybe be­come a rep­re­sen­ta­tive to the na­tional or­gan­i­sa­tion.

Geri’s face crin­kled up, and she be­gan to cry. For what she wished more than any­thing was for peo­ple with Alzheimer’s not to live in shame but in no­bil­ity, and to learn ways to carry on. And this woman was telling her she wished for it, too. Geri had never cried, never pi­tied her­self for get­ting the dis­ease, but this made her cry.

More than three years had rolled by since Geri Tay­lor hadn’t recog­nised her face in the mir­ror, and be­gan to won­der what would fill her days. Now, with her in­volve­ment in the Alzheimer’s As­so­ci­a­tion, here was the an­swer. This would be her sec­ond act, some­thing that drew on her health­care ca­reer: help­ing oth­ers deal with the dark­ness of Alzheimer’s.

Hav­ing pur­pose was the sta­bil­is­ing force. And Alzheimer’s it­self, she re­alised, could be her pur­pose.

Cur­rently, Geri Tay­lor is a spokesper­son in the US for the Alzheimer’s As­so­ci­a­tion, shar­ing her story to raise aware­ness of the dis­ease and ad­vo­cat­ing for in­creased fund­ing for Alzheimer’s re­search.

Geri and Jim Tay­lor on their wed­ding day in 1993. With them are their chil­dren. From left: Mark Tay­lor, Heidi Tay­lor, Amy Tay­lor and Lloyd Wid­mer

Her re­la­tion­ship with Jim is bet­ter than ever since learn­ing she has Alzheimer’s

Geri Tay­lor in Florida, where she and her hus­band trav­elled in 2015

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