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“My mother helped my dad at his den­tal prac­tice,” he says. “She would do some chair-side as­sist­ing and of­fice man­age­ment. “She was also a home­maker and took care of the house­hold by cook­ing, clean­ing, and tak­ing care of me and my sis­ter.” Now, though, Joel says she can’t even stand on her own, and has trou­ble re­mem­ber­ing who ex­actly the man who calls her Mother is. Joseph Gar­deno*, 65, of At­lanta, has a sim­i­lar story: “When my wife was di­ag­nosed, she de­manded that I keep it hid­den from the fam­ily. She kept ask­ing me if it were re­ally true, as though she both be­lieved it, but re­fused to be­lieve it. At some point, the fam­ily be­gan to see what she was go­ing through, and al­most si­mul­ta­ne­ously, she stopped car­ing about them know­ing [about her di­ag­no­sis]. She didn’t want ev­ery­one to know — just them.” His eyes turn down­ward. “I’ll be hon­est: I went through a pe­riod of ab­so­lute and com­plete rage that the woman I loved, the woman I mar­ried was dis­ap­pear­ing be­fore my very eyes. It made me ques­tion my faith.” But Joseph says the anger didn’t last for­ever. “It went away over time — I just had to ac­cept re­al­ity and deal with what was com­ing. Still, I sit and think some­times, ‘We can never have that va­ca­tion to Aus­tralia to­gether; I can never again ex­pect a Christ­mas or an­niver­sary present from her, be­cause she no longer re­mem­bers things like that.” Joseph and his wife were floored by the news, as both are in their mid to late six­ties. “She’s hav­ing trou­ble putting words to­gether. Al­ready. But like I said, you learn to live with it.” *** Don Terry, an out, gay man liv­ing in Al­pharetta, is help­ing the Alzheimer’s As­so­ci­a­tion — a na­tional or­ga­ni­za­tion — start an LGBTQ Alzheimer’s sup­port group here in At­lanta. Don, 52, is cur­rently work­ing as a vol­un­teer with the Ge­or­gia chap­ter of the Alzheimer’s As­so­ci­a­tion af­ter un­der­go­ing train­ing in Fe­bru­ary. Ad­di­tion­ally, he gives group pre­sen­ta­tions to com­pa­nies who ei­ther work with in­di­vid­u­als liv­ing with de­men­tia and/ or Alzheimer’s, or those who have a vested in­ter­est in the sub­ject. When I ask him about the “and/or” por­tion of his “Alzheimer’s and/or de­men­tia” state­ment, he says that Alzheimer’s

June 8, 2018

falls on the de­men­tia scale. De­men­tia is an umbrella term for a set of symp­toms that in­clude im­paired think­ing and is­sues of mem­ory. Alzheimer’s dis­ease is the most com­mon form of de­men­tia, yet there are many nu­ances, com­plex­i­ties, and mis­con­cep­tions sur­round­ing Alzheimer’s and de­men­tia. In Don’s train­ing, he learned that two types of de­men­tia can oc­cur si­mul­ta­ne­ously, known as mixed de­men­tia. As many as half the peo­ple with Alzheimer’s dis­ease may have mixed de­men­tia, ac­cord­ing to the Alzheimer’s As­so­ci­a­tion. “There’s cur­rently noth­ing like it in the state of Ge­or­gia,” he tells Ge­or­gia Voice. “When I was grow­ing up, I’d never even heard of Alzheimer’s, let alone de­men­tia, and it’s so preva­lent now!” In 1996, at the age of 71, Don’s mother suf­fered a brain aneurysm re­sult­ing in a con­di­tion known as vas­cu­lar de­men­tia, in which the af­flicted ex­pe­ri­ences a sharp de­cline in think­ing skills caused by blocked or re­duced blood flow to the brain. “It re­ally im­pacted, among other things, her short-term mem­ory, and it was some­thing she lived with through­out the re­main­der of her life. In her case, once she re­cov­ered from the aneurysm, she was able to live in­de­pently for some years. At around 80, there were some con­cerns about cer­tain life choices she was mak­ing.” Don says some of her liv­ing habits were ques­tion­able, af­fect­ing her wel­fare and mak­ing her over­all safety a con­cern. In his mother’s early stages of vas­cu­lar de­men­tia, she had a fairly good qual­ity of life, though her short-term mem­ory was im­pacted. “She was re­ally good at keep­ing a list of her med­i­ca­tions, but that be­gan to be prob­lem­atic for her,” he says. “She’d for­get to write some­thing down, and her judg­ment abil­ity be­gan to de­cline. She just … wasn’t mak­ing good choices.” His tone changes; it’s more somber now. “She ended up go­ing into a de­men­tia ward at a lo­cal se­nior-care fa­cil­ity,” he says. “She re­mained there for the rest of her life.” He is re­minded of sad mo­ments that drove home how sick she was. “If I went to see her, say, on a Tues­day, I’d call her the next day and she’d say some­thing like, ‘Don, I haven’t seen you in awhile!’ It was heart­break­ing. This was my Mom, some­one I loved … and you feel this tremen­dous sense of help­less­ness. While you can sup­port and love in other ways, there’s noth­ing you can do that’s go­ing to bring back her cog­ni­tive abil­i­ties as they once were.” He pauses. “It’s a thief of self.” His per­sonal strug­gle in see­ing his mother pass in such a fash­ion, cou­pled with the knowl­edge that most LGBTQ se­niors are liv­ing alone lead him to the Alzheimer’s As­so­ci­a­tion. I ask him if the grow­ing num­bers of Alzheimer’s di­ag­noses and the idea that so many LGBTQ peo­ple are alone might mean we have a new com­mu­nity cri­sis on our hands. “That’s ex­actly right,” he says em­phat­i­cally. “The older gen­er­a­tion lived in a time when be­ing out was less ac­cept­able, and some of these LGBTQ se­niors are go­ing back into the closet … in­ter­nal­iz­ing their ho­mo­pho­bia.” The topic of ques­tion­able care of the el­derly in as­sisted-liv­ing homes re­turns. “There are sto­ries about the bul­ly­ing go­ing on in se­nior-care nurs­ing homes, and part of the tar­gets of that bul­ly­ing are LGBTQ in­di­vid­u­als. These are in­di­vid­u­als who may not have a re­la­tion­ship with fam­ily mem­bers, who may be es­tranged from them, who may not be out to their fam­ily, and [are] fac­ing other bar­ri­ers to care, sim­ply be­cause of their sex­u­al­ity.” And who can ad­vo­cate for these peo­ple, when there’s no one there to check on them? This is some­thing Don takes to heart, hence the sup­port group he’s aim­ing to launch soon.

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