Agnes Hous­ton is a cap­ti­vat­ing and in­spi­ra­tional pub­lic speaker, says Joy Or­pen, but she has been bat­tling a brain dis­or­der since 2006 — and now she helps oth­ers cope, too

Sunday Independent (Ireland) - Life - - HEALTH -

When Agnes Hous­ton, 65, gave a talk at the Royal Dublin So­ci­ety (RDS), her large au­di­ence was so spellbound, you could have heard the scur­ry­ings of a very tiny mouse. Not bad for some­one who, seven years ago, was di­ag­nosed with de­men­tia — a pro­gres­sive brain dis­or­der.

Agnes was at­tend­ing the re­cent Fifth In­ter­na­tional De­men­tia Care Con­fer­ence, or­gan­ised by Sonas apc, a non-profit or­gan­i­sa­tion, of­fer­ing train­ing for those car­ing for peo­ple with de­men­tia.

She is an ex­tremely ar­tic­u­late and en­er­getic cam­paigner; a role she could never have fore­seen for her­self when she left school at 15 to work in an of­fice. Later she joined the Bri­tish Army and be­came a nurse. She was in Hong Kong as the Viet­nam War was draw­ing to a close, and en­coun­tered many young Amer­i­can soldiers who had been phys­i­cally and emo­tion­ally trau­ma­tised. “My ex­pe­ri­ences helped me with later strate­gies,” she says. “In the army, you make the best of what you've got.”

Soon af­ter, Agnes met Alan, her fu­ture hus­band and, 40 years ago, they had their daugh­ter, Donna.

Over the years, Agnes spe­cialised in or­thopaedic and in­ten­sive-care nurs­ing, but in 2000 she be­came “dis­il­lu­sioned” with the sys­tem and opted to man­age a chi­ro­prac­tor ser­vice in­stead. “I made the of­fice run smoothly,” she says. “I was a great com­mu­ni­ca­tor and a prob­lem solver.”

But in 2006 her bosses no­ticed Agnes was be­com­ing con­fused and dis­jointed. “My speech was all mixed up and I started to point at things be­cause I just couldn't find the words for those things.

“I was known for my ra­zor-sharp mem­ory, but one day I was teach­ing some­one to use the X-ray ma­chine, and the next minute I had for­got­ten how to use it my­self, and now I had to ask that per­son to show me,” she says.

Agnes says that from the very be­gin­ning her army train­ing helped her put strate­gies in place. “I was cov­er­ing up when some­times I didn't even know my name,” she ad­mits.

She wrote re­minders for her­self and they were still be­ing found in “weird places” two years af­ter she left the prac­tice. “Re­cently, I saw a note from that time. I used to write beau­ti­fully, but this writ­ing was child­ish and dyslexic. Quite telling, re­ally,” she says. “Writ­ing notes was one thing; but you couldn't cover up the loss of words.”

Even­tu­ally, one of the chi­ro­prac­tors ad­vised Agnes to be checked by her GP. Soon af­ter she learned she had early onset — classed as un­der 65 years of age — early stage de­men­tia. “I got an­gry when I got the di­ag­no­sis,” she says.

Iron­i­cally, she was then look­ing af­ter her fa­ther, who was also liv­ing with de­men­tia, so it was a bleak time for her. “There were no books and no help­ful hints about the sit­u­a­tion. I had a label for what was caus­ing my prob­lem, but they never re­ally gave me any hope. I just thought, ‘This is it — down­hill all the way’,” Agnes re­calls. “I couldn't re­mem­ber how to use a com­puter, I couldn't write and now I knew I couldn't work. I wasn't ca­pa­ble of get­ting on a bus and pay­ing the fare, so I had to walk; and if it rained, I couldn't go any­where. I went from be­ing a very ac­tive per­son, to some­one be­ing ‘done for.'“

For­tu­nately, one of her dad's car­ers told her about the Scot­tish De­men­tia

One day I was teach­ing some­one to use the X-ray ma­chine, and the next minute I had for­got­ten how to use it my­self

Work­ing Group (SDWG) and took her to a meet­ing. “What an eye-opener!” she says. “There were peo­ple sit­ting around a ta­ble and I heard laugh­ter. I couldn't fig­ure out who had the di­ag­no­sis. Above all else, they gave me hope. I thought, ‘If they can do it, so can I,’ and so I took my first pos­i­tive step since my di­ag­no­sis. They showed me by ex­am­ple. They en­cour­aged me to speak up for my­self even when I couldn't find a word. They helped me put things into per­spec­tive and they made me re­alise I still had stuff to give.”

Agnes im­me­di­ately be­came a mem­ber of the SDWG and has hardly had time to catch her breath since then. She is on var­i­ous com­mit­tees ad­vis­ing govern­ment and health bod­ies on the best ways to as­sist those who are liv­ing with de­men­tia. She says the di­ag­no­sis made her very sad for all the things she lost. But tak­ing ap­pro­pri­ate med­i­ca­tion has helped enor­mously. “I take one pill a day. At the be­gin­ning, it was like get­ting new glasses — sud­denly you can see, though you never re­alised you had been blind. It's still work­ing for me,” she says.

How­ever, Agnes does suf­fer from a range of com­mon but lit­tle-known symp­toms, in­clud­ing neu­ro­log­i­cal vi­sion im­pair­ment: “My eyes see, but my brain is slower to in­ter­pret th­ese signals,” she ex­plains. Con­se­quently, she bumps into things and has to be wary cross­ing the street. She uses a white pointer stick, which she says is use­ful in “help­ing you un­der­stand you need to give me more time”.

She has an aver­sion to loud, ev­ery­day noises (hy­per­a­cu­sis) and ex­pe­ri­ences pro­found fa­tigue, which she says is caused by men­tal stresses and brain de­te­ri­o­ra­tion. So she takes power naps and sleeps for at least 12 hours a night.

Agnes, who is now sep­a­rated, lives alone — quite happily. She loves her “wee knit­ting group” and does yoga and med­i­ta­tion — to keep her “spir­i­tu­ally nour­ished”; it also helps keep her con­stant anx­i­ety at bay.

She says a set rou­tine is cru­cial to her ev­ery­day ex­is­tence. “I have to put ev­ery­thing in the same place,” she says. “Donna knows not to touch any­thing when she comes for vis­its from her home abroad.”

She says she al­ways ad­vises those car­ing for peo­ple with de­men­tia to re­mem­ber their “core” needs —

com­mu­ni­ca­tion, ori­en­ta­tion, re­peated re­as­sur­ance and emo­tional sup­port.

Agnes's fire alarm is linked di­rectly to the fire sta­tion. She has a com­mu­nity alert but­ton and car­ries a card ex­plain­ing her con­di­tion.

All th­ese things help her main­tain a happy, in­de­pen­dent ex­is­tence. Oth­er­wise she is busy cam­paign­ing at her com­puter and at meet­ings all over the place, in­clud­ing Brus­sels.

“We're pro­mot­ing early di­ag­no­sis; that way med­i­ca­tion will do the max­i­mum for you,” Agnes ex­plains. “If you have good, pos­i­tive di­ag­no­sis sup­port you'll be main­tained in so­ci­ety much longer. That pre­vents you from go­ing into a nurs­ing home and that saves the Govern­ment money.

“We also need an in­ter­na­tional net­work of pos­i­tive groups of peo­ple with de­men­tia, in­flu­enc­ing and mak­ing changes for im­prove­ments in the care of peo­ple with the con­di­tion. The most im­por­tant thing is that you al­low peo­ple to travel their de­men­tia jour­ney in their own way.”

Agnes's stel­lar per­for­mance at the RDS con­fer­ence is surely proof that she is tak­ing her own, very sound ad­vice.

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