Find­ing joy with Alzheimer’s?

The Prince George Citizen - - Health - Tara BAHRAMPOUR

Tom and Peggy Mis­ci­agna were sit­ting in their Manas­sas, Vir­ginia, home re­cently, talk­ing about the chil­dren they adopted over­seas in the 1980s, when Tom, 64, mis­re­mem­bered a ma­jor de­tail.

“We got two kids out of In­dia –” he said. “Philip­pines.”

Peggy, 59, chimed in.

“Oh yeah, Philip­pines,” said Tom, a re­tired CIA of­fi­cer. He grinned wryly at his wife. “That’s Ol­lie talk­ing.”

Ol­lie is their nick­name for Alzheimer’s, the dis­ease Tom was di­ag­nosed with seven years ago. For the Mis­ci­ag­nas, Ol­lie is a third pres­ence in the house, one they never in­vited in. But since he’s here, they’re mak­ing room for him. And though it might seem coun­ter­in­tu­itive, they are even try­ing to have fun with him.

That ap­proach – giv­ing the ill­ness a nick­name, smoothly zig­ging af­ter hit­ting a zag – puts the Mis­ci­ag­nas in a grow­ing camp of peo­ple de­ter­mined to ap­proach de­men­tia care dif­fer­ently, com­ing at it with a sense of open­ness, play­ful­ness and even won­der.

It is in stark con­trast to ear­lier gen­er­a­tions of Alzheimer’s pa­tients and their caregivers, who saw the dis­ease as some­thing to be hid­den. Even now, fewer than half of Alzheimer’s pa­tients are told they have it, ac­cord­ing to a 2015 Alzheimer’s As­so­ci­a­tion re­port, and a 2012 study found it sur­passed can­cer as the dis­ease Amer­i­cans fear most. It has been swathed in shame, stuck in what Bill Thomas, a geri­a­tri­cian who is work­ing to change at­ti­tudes about old age, calls “the tragedy nar­ra­tive.”

“The main frame­work Amer­ica has avail­able to con­tend with this is... that it’s a ter­ri­ble, de­struc­tive ride all the way down and then you die,” he said.

“While fac­tu­ally true, that is ex­tremely un­help­ful to fam­i­lies and el­ders.”

Fam­ily mem­bers of­ten try to nudge a loved one back to­ward getting facts right or re­mem­ber­ing things cor­rectly, but as the dis­ease pro­gresses this can turn their daily in­ter­ac­tions into grim, and in­creas­ingly frus­trat­ing, bat­tles.

With­out dis­miss­ing the dif­fi­cul­ties of the dis­ease, Thomas and oth­ers are pro­mot­ing a more adap­tive ap­proach, which they say can help caregivers and pa­tients alike. It in­volves a lot of flex­i­bil­ity and will­ing­ness to ex­pand one’s ideas of how things are sup­posed to be even, crazy though it might sound, to see Alzheimer’s as a kind of gift.

Too much at­ten­tion is fo­cused on med­i­cal­iz­ing the dis­ease, said Mary Fri­d­ley, co-creator of a work­shop called The Joy of De­men­tia (You’ve Got to Be Kidding!) at the East Side In­sti­tute, an al­ter­na­tive psy­chol­ogy and ed­u­ca­tion re­search cen­ter in New York.

“De­men­tia is enor­mously painful,” said Fri­d­ley, who has writ­ten about car­ing for her mother, who had Alzheimer’s and died a year ago. But, she added, “I truly be­lieve it is an op­por­tu­nity, if peo­ple so choose, to be im­pro­vi­sa­tional, to be silly, to play, to free our­selves from the con­straints of truth and know­ing and as­sump­tions.”

A 2016 pi­lot study in a Cana­dian nurs­ing home found that de­men­tia pa­tients’ be­havioural and psy­cho­log­i­cal symp­toms de­clined sig­nif­i­cantly and their qual­ity-oflife scores im­proved sig­nif­i­cantly af­ter 12 weeks of vis­its by “el­der-clowns” who en­gaged with them us­ing hu­mour, em­pa­thy and im­pro­vi­sa­tion. Caregivers, too, ap­pear to ben­e­fit: A 2016 Aus­tralian study found de­men­tia-care staff with pos­i­tive at­ti­tudes and “per­son-cen­tred” strate­gies felt more com­pe­tent about their abil­ity to pro­vide care.

Al­though large-scale stud­ies on pos­i­tive ap­proaches to de­men­tia have yet to be done, a grow­ing num­ber of groups around the United States are em­brac­ing them.

Thomas’s or­ga­ni­za­tion, Chang­ingAging, has a trav­el­ing show called Dis­rupt De­men­tia that ex­plores the emo­tions as­so­ci­ated with de­men­tia. And in Seat­tle, a col­lec­tive move­ment known as Mo­men­tia fa­cil­i­tates so­cial gath­er­ings at cof­fee shops, mu­seum tours, zoo walks, and even gib­ber­ish con­ver­sa­tions for peo­ple with de­men­tia and their caregivers. That is fa­mil­iar to Fri­d­ley. “With my mom, es­pe­cially as she be­gan to lose, quote-un­quote, her ca­pac­ity to speak, she was bab­bling and the words were non­sen­si­cal,” she said.

Rather than stay­ing con­fined to a fixed idea of what lan­guage is, Fri­d­ley stopped wor­ry­ing about it.

“Some­times, we cre­ated a poem to­gether. She would say some­thing and I would say some­thing that, quote, rhymed and then she would say some­thing that rhymed, like, ‘I’m dying;’ ‘You’re dying;’ ‘I’m din­ing;’ ‘I’m din­ing be­fore I’m dying.’”

Jen­nifer Car­son, di­rec­tor of the newly launched De­men­tia En­gage­ment, Ed­u­ca­tion and Re­search pro­gram at the Univer­sity of Ne­vada at Reno, en­cour­ages this kind of en­gage­ment.

“Alzheimer’s can be a lib­er­at­ing event, an op­por­tu­nity to fly,” she said.

“This is in no way to dis­miss the pain and suf­fer­ing that comes from de­men­tia, but to un­der­stand that a lot of that pain and suf­fer­ing comes from the re­sponse.”

Car­son be­lieves much suf­fer­ing comes from the so­cial re­sponse af­ter the di­ag­no­sis, what she de­scribes as be­ing treated as if you’re no longer there.

“Tell some­one they have de­men­tia and then ig­nore them: That’s the suf­fer­ing, way more than the tragedies that are in­trin­sic to de­men­tia it­self.”

That was the ex­pe­ri­ence of Brian Le­Blanc of Pen­sacola, Florida, who was di­ag­nosed with Alzheimer’s four years ago. Peo­ple would walk up and “turn to who­ever I was with and say, ‘How’s he do­ing?’ I’d turn to them and say, ‘I’m do­ing pretty good and I can still hear you,’ “he said.

Le­Blanc, 58, was painfully fa­mil­iar with the dis­ease – his mother, grand­fa­ther and great­grand­mother had it, and re­ceiv­ing his di­ag­no­sis was dev­as­tat­ing. But, he said, “I did not want to stay in that dark place.”

His mother had never wanted to talk about her Alzheimer’s and be­came with­drawn af­ter her di­ag­no­sis. But Le­Blanc’s back­ground was in pub­lic re­la­tions and mar­ket­ing, so he started do­ing what he knew best: trav­el­ing and speak­ing pub­licly, hop­ing to ed­u­cate peo­ple about how Alzheimer’s feels from the in­side.

From the early days of his di­ag­no­sis, Le­Blanc used hu­mour as a cop­ing mech­a­nism.

Af­ter he learned he had the dis­ease, a friend sent him a pic­ture of a T-shirt that read:

“Roses are red

Vi­o­lets are blue

I have Alzheimer’s

Cheese on toast.”

“I thought that was the fun­ni­est thing,” he said.

“Those are the type of things that keep me go­ing. I get enough of the stigma of peo­ple say­ing I don’t look like I have Alzheimer’s. But it’s the peo­ple who are re­ally my friends who will stick with me and joke and say, ‘Hey, do you have the 20 bucks you owe me?’ And then I have to stop and think, and they’ll start laugh­ing.”

Re­cently, Tom and Peggy Mis­ci­agna were at Bowl Amer­ica on Mathis Av­enue in match­ing black polo shirts with the Iron Ea­gles, a mixed Fri­day morn­ing league.

Tom, a solidly built man with neatly trimmed salt-and-pep­per hair, picked up a ball and leaned in, send­ing it crash­ing into the pins – the last frame of the day.

It wasn’t quite a strike, but it was close.

His team­mates cheered.

A lit­tle smile played on his face as he joined his wife on the bench. “I came on strong, right?” “Good game,” she said, and their fin­gers linked for a sec­ond.

It was lunchtime.

At Cap­tain D’s on Cen­tre­ville Road, they or­dered their usual three-piece bat­tered-fish plat­ter and talked about their life and the ways his dis­ease has changed it.

How it was hard at first for him to tell peo­ple he had it.

How now, when they tell the story of how they met, he needs her to fill in key de­tails that he once knew by heart.

Since his di­ag­no­sis, the cou­ple has made a point of try­ing to have fun to­gether. Tom has taken up new ac­tiv­i­ties such as darts and colour­ing books.

He’d never danced be­fore; now, he and Peggy go square-danc­ing. He’d never played a mu­si­cal in­stru­ment, but he took up the vi­o­lin. And they joined the For­get­ful Friends Cho­rus, for peo­ple with de­men­tia and their friends and caregivers, though he had never sung be­fore.

“Wait a minute, wait a minute,” he cut in.

“When I was an al­tar boy, I had to sing.”

“In Latin,” Peggy added. He grinned.

“In Latin, no less.”

Peggy is grate­ful for Tom’s abil­ity to joke about his fail­ing mem­ory.

Still, she has to con­stantly nav­i­gate how to talk with him about his lim­i­ta­tions.

“It’s al­most like a child – if you tell a child, ‘You have to do this,’ well, they’re not go­ing to do it... If we’re out do­ing the lawn and I keep say­ing, ‘Tom, do this, Tom do that,’ at some point he be­comes a lit­tle re­bel­lious, like a child.

If I ask him to get some leaves, he’ll say, ‘No, I’ll do that later.’

A few min­utes later, he’ll say, ‘What can I do to help?’ and I’ll say, ‘Can you go get those leaves over there?’ and then he’ll go over and do it.”

Keep­ing things loose and flow­ing is some­thing Peggy does to make her own life eas­ier. But it also puts Tom at ease. And it makes things more fun.

Like the day he was in the bath­room shav­ing and she heard him yell, “Oh my gosh, what have I done?”

He ap­peared in the door­way – with only one eye­brow.

“Can you fix it?” he asked. “Nope,” she said, un­able to stop laugh­ing.

“Just shave off the other one. It’s only an eye­brow.”

THE WASH­ING­TON POST PHOTOS BY PETER MAROVICH

ABOVE: Peggy and Tom Mis­ci­agna par­tic­i­pate in a Fri­day morn­ing bowl­ing league. They have also taken up square-danc­ing and joined the For­get­ful Friends Cho­rus. BE­LOW: Mis­ci­agna plays the vi­o­lin for his wife, Peggy, in their Manas­sas, Vir­ginia, home on Nov. 2. Tom has been learn­ing to play the in­stru­ment for the first time, which is one of the ways the cou­ple tries to keep things light­hearted amid his life with de­men­tia.

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