Care­giver shares per­sonal story on web

Stanstead Journal - - FRONT PAGE - Vic­to­ria Vanier, North Hat­ley

Su­sanMa­caulay, who re­turned to the East­ern Town­ships a few years ago after spend­ing over twenty years work­ing abroad in coun­tries such as Aus­tralia, New Zealand and the United Arab Emi­rates, has put her for­mi­da­ble com­mu­ni­ca­tion skills to good use in the form of a unique web­site: myalzheimersstory.com. With ex­pe­ri­ence in pub­lic re­la­tions,

as an ed­i­tor of a mag­a­zine for many years, as a pub­lic speaker and as the cre­ator of other popular web­sites such as amaz­ing­wom­en­rock.com, Ms. Ma­caulay started this new­est web­site almost one year ago to share the ex­pe­ri­ence of car­ing for a loved one with Alzheimer’s Dis­ease, her mother Patti.

Susan, who grew up in the Ge­orgeville area, had planned to re­turn to Canada in 2013, how­ever, when her mother, who be­gan show­ing signs of de­men­tia in 2005, could no longer live on her own, she came back ‘home’ in Oc­to­ber of 2011. “When I first ar­rived, I did a lot of things wrong. For in­stance, when Mom would re­peat the same ques­tion, I’d say ‘Don’t you re­mem­ber?’ But if the care­giver gets ir­ri­tated, it just am­pli­fies the sit­u­a­tion,” said Ms. Ma­caulay in an in­ter­view with the Stanstead Jour­nal. “I had no idea about Alzheimer’s Dis­ease, only the gen­eral stuff, and I had never cared for any­one with a dis­ease.”

At first, Susan’s mother some­times showed signs of anx­i­ety or anger to­wards her daugh­ter. “But I un­der­stand now that this was a re­sult of how I in­ter­acted with her. Be­cause you’re told they will be anx­ious or ag­gres­sive, you don’t look at your own be­hav­ior. If some­one has anx­i­ety or ag­gres­sion, they give an­tipsy­chotics to se­date the per­son, but the side ef­fects of those are con­fu­sion and ag­gres­sion!”

“As care­givers, we want them to be­have. But their re­al­ity is dif­fer­ent, so there’s no point in try­ing to fit them into our re­al­ity. We have the ca­pac­ity to go into their world; that’s more ef­fec­tive than try­ing to force them to be in our world,” she ex­plained.

“With the web­site,” con­tin­ued Susan, “I wanted to take my ex­pe­ri­ences, my sto­ries, and share what I did wrong so oth­ers can avoid the same mis­takes. Hope­fully it will make the job eas­ier for them, and eas­ier for the per­son they are car­ing for.” It is an ex­ten­sive site, filled with per­sonal videos, in­struc­tional, in­spi­ra­tional and mov­ing, of Susan and her mother spend­ing time to­gether, re­sources for care­givers, posts chron­i­cling Susan and her mom’s jour­ney, com­ments, opin­ions and ad­vice from her many fol­low­ers, and more.

“I also want to help peo­ple find joy and hap­pi­ness in their role as care­giver, and make the lives of those with de­men­tia more joy­ful and happy.” The videos on Susan’s web­site of the mu­si­cal ses­sions that her mother has with lo­cal mu­si­cian Eric Manol­son are good ex­am­ples of how won­der­ful ‘al­ter­na­tive’ ther­a­pies can be in the lives of peo­ple with de­men­tia.

Susan ex­plained how her ‘blog’ dif­fered from other in­ter­net sites de­voted to Alzheimer’s Dis­ease and de­men­tia. “It’s dif­fer­ent read­ing about real-life sto­ries in­stead of lists of do’s and don’ts. On my web­site you can see how it sounds, what it re­ally looks like. That’s bet­ter than read­ing a pam­phlet.”

Go­ing back from her role as an in­ter­net blog­ger to that of care­giver, I asked Ms. Ma­caulay what was hard­est, in her ex­peri- ence, about be­ing a nat­u­ral care­giver. “The hard­est thing is ev­ery­thing! The most im­por­tant thing is to get help be­cause you can’t do it on your own. And, un­der­stand that you will make mis­takes. Don’t wish they could be who they were, but love them for who they are to­day. The per­son is still there; don’t start mourn­ing their loss be­fore they’re even gone.”

Fac­ing this ex­pe­ri­ence with an open mind and heart has changed Susan’s life in ways that have sur­prised her. “I’ve been healed by this process; I found my abil­ity to give un­con­di­tional love,” she said, ex­plain­ing fur­ther: “Mom could be dif­fi­cult, but I learnt not to be af­fected by her crit­i­cisms. They didn’t mat­ter be­cause I was in a care­giv­ing role and she was vul­ner­a­ble.”

“There has been a tremen­dous amount of heal­ing in our re­la­tion­ship. She has given back to me in ways I didn’t ex­pect. You need to have an open mind. If you think the dis­ease is a hor­ri­ble death sen­tence, it’s harder to see the pos­si­bil­ity of pos­i­tive out­comes.”

Photo Vic­to­ria Vanier

Photo Vic­to­ria Vanier

‘Webpreneur’ Susan Ma­caulay, whose Amaz­ing Women Rock web­site is fol­lowed by over 70,000 peo­ple world­wide, has started another web­site, myalzheimersstory.com, to share her ex­pe­ri­ence as a nat­u­ral care­giver.

Susan Ma­caulay, seen here at her home in North Hat­ley, wants to share what she’s learnt about car­ing for a loved one with de­men­tia.

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