Lo­ving and li­ving with so­meone strug­gling with Alz­hei­mer’s

Vision (Canada) - - Collective - Community - ALEXIA MAR­SILLO alexia.mar­sillo@eap.on.ca

La ma­la­die d’Alz­hei­mer af­fecte la plu­part des Ca­na­diens, que ce soit par un diag­nos­tic personnel ou ce­lui d’un re­la­tif. C’est une ma­la­die qui change la na­ture des re­la­tions et des modes de vie, de la per­sonne diag­nos­ti­quée, ain­si que celle de leurs amis et de leur fa­mille. On sen­si­bi­lise de plus en plus à cette ma­la­die, on or­ga­nise des col­lectes de fonds et les or­ga­ni­sa­tions four­nissent du sou­tien. La re­cherche sur la ma­la­die est tou­jours en cours et de nou­veaux faits sont sou­vent ap­pris. Ka­ren Mar­tin a éga­le­ment ap­pris de nou­velles choses tous les jours sur la ma­la­die, car son ma­ri, Ro­bert, a été diag­nos­ti­qué avec une ap­pa­ri­tion pré­coce de la ma­la­die d’Alz­hei­mer exac­te­ment il y a un an, en sep­tembre 2016 à l’âge de 57 ans. Alz­hei­mer’s di­sease af­fects most Ca­na­dians, whe­ther it is through a per­so­nal diag­no­sis or that of a lo­ved one. It is a di­sease that starts gra­dual­ly and in­evi­ta­bly wor­sens over time. Alz­hei­mer’s un­doub­ted­ly changes the na­ture of re­la­tion­ships and of li­fe­styles, of the diag­no­sed per­son, as well as that of their friends and fa­mi­ly. More and more awa­re­ness is being rai­sed about this di­sease, fun­drai­sers are being held and or­ga­ni­za­tions are pro­vi­ding sup­port as Alz­hei­mer’s re­search is on­going and new facts are dis­co­ve­red of­ten.

Ka­ren Mar­tin, a re­sident of Rus­sell Town­ship, has al­so been lear­ning new things eve­ry­day about the di­sease, since her hus­band, Ro­bert, was diag­no­sed with ear­ly on­set Alz­hei­mer’s one year ago at the age of 57. “The be­gin­ning is a ve­ry gra­dual loss of me­mo­ry and you’re sort of won­de­ring if there is so­me­thing wrong with them or is it just for­get­ful­ness?” said Ka­ren Mar­tin. “Then it gets worse and worse and you rea­lize, ‘ Yes, there is so­me­thing wrong’ and you have to take them to get tes­ted.” Mar­tin star­ted to no­tice the changes in her hus­band’s me­mo­ry and upon re­cei­ving the diag­no­sis a year ago, he is still un­der­going tes­ting to fi­gure out exact­ly what type of Alz­hei­mer’s he has.

At 58 years old, at the in­sis­tence of his neu­ro­lo­gist, Ro­bert was for­ced to stop wor­king due to the di­sease. “He couldn’t work any­more and that was ve­ry, ve­ry dif­fi­cult be­cause he’s al­ways wor­ked all his life and he’s al­ways wor­ked long hours all his life… To be told now ‘ You can’t work,’ was a real­ly dif­fi­cult thing for him to ac­cept,” said Mar­tin. The mar­ried couple of 40 years was al­so for­ced to sell the house they have li­ved in for 30 years – a house that Ro­bert built him­self – be­cause the main­te­nance would be­come im­pos­sible to keep up with af­ter the diag­no­sis. The two have now mo­ved to a camp­ground, where Ro­bert has found some work he can do around the grounds, pi­cking up the re­cy­cling and other simple tasks that keep him oc­cu­pied. “His mo­rale is pret­ty good right now be­cause of the work. They need to be kept bu­sy,” said Mar­tin. “With this, he can work as he pleases, when he is ha­ving a good day, and it’s not ve­ry taxing and mind de­man­ding.”

Ac­cor­ding to Mar­tin, her hus­band’s mind­set changes on a dai­ly ba­sis, in which half the time he is him­self, and the other half the di­sease is in the dri­ver’s seat. Ro­bert’s Alz­hei­mer’s is fo­cu­sed pri­ma­ri­ly in the fron- tal lobe, which leads to ag­gres­sion and other in­ap­pro­priate things in pu­blic.

“He doesn’t rea­lize what he’s doing is wrong,” she said. “If I argue with him, it just ag­gra­vates the si­tua­tion. For me that’s real­ly hard, be­cause I’m ve­ry strong and vo­cal my­self and I have to real­ly pull my­self back.” Mar­tin ack­now­ledges the sup­port she has re­cei­ved from Alz­hei­mer’s So­cie­ty of Corn­wall and Dis­trict, most no­ta­bly from the fa­mi­ly’s case wor­ker, Jeanne Poi­rier, who has done house vi­sits to speak to Mar­tin and her three chil­dren. Mar­tin al­so at­tends month­ly Alz­hei­mer’s Sup­port Mee­tings to cope with the li­fe­style changes that come with a lo­ved one being diag­no­sed.

Once Ro­bert was diag­no­sed, it took the fa­mi­ly all year to get him in to see a neu­ro- lo­gist and they are now wai­ting to com­plete tests at the Me­mo­ry Di­sor­der Cli­nic at the Eli­sa­beth Bruyère Hos­pi­tal in Ot­ta­wa. Ac­cor­ding to Mar­tin, her hus­band is sche­du­led to run tests this week, in which they can ex­pect to wait un­til ear­ly next year for the re­sults.

“That’s the har­dest part, wai­ting and wai­ting and wai­ting,” said Mar­tin. “We need more re­sources and doc­tors for Alz­hei­mer’s so things can pro­gress qui­cker for these people, es­pe­cial­ly when it’s ear­ly on­set, be­cause they’re young and can maybe live a more pro­duc­tive life for a lit­tle while lon­ger.”

The fa­mi­ly will be par­ti­ci­pa­ting in this year’s Walk for Alz­hei­mer’s or­ga­ni­zed by the Alz­hei­mer’s So­cie­ty of Corn­wall and Dis­trict on Sep­tem­ber 16 at the Ro­ck­land Ma­nor.

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