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He speaks of a 2010 doc­u­men­tary by Stu Mad­dux called “Gen Silent,” the sub­jects of which are LGBTQ Bos­to­ni­ans who have to hide their sex­u­al­ity in or­der to sur­vive the dis­crim­i­na­tory world of long-term hous­ing and healthcare. “One of the salient points [of the doc­u­men­tary] is that most older in­di­vid­u­als live with some­one, whether that be fam­ily or friends, or in as­sisted-liv­ing nurs­ing homes, but two-thirds of LGBTQ in­di­vid­u­als live alone, so there’s a real dis­par­ity there.” He speaks with con­vic­tion. “What we’re do­ing at the Alzheimer’s As­so­ci­a­tion is cru­cial in pro­vid­ing some sup­port.” That’s pre­cisely why Don is spear­head­ing the at­tempt to get an LGBTQ Alzheimer’s sup­port group started in the area. He says he’s look­ing for a place where those who need the sup­port can meet, but be­seeches the help of the Greater At­lanta com­mu­nity in this en­deavor. “It’s been a bit of a slow start,” Don ad­mits, though he says he’s hope­ful for a new place he’s been eye­ing. “It’s just a mat­ter of get­ting the word out and hav­ing folks come in. I don’t have any ex­pe­ri­ence to draw from, but there’s a na­tional or­ga­ni­za­tion called SAGE that could be an im­por­tant and use­ful ally with this LGBTQ caregiver sup­port group.” He thinks there’s a great chance at in­ter­sec­tion­al­ity. “I un­der­stand [SAGE has] their own sup­port group — not nec­es­sar­ily con­cerned with de­men­tia and Alzheimer’s — so I won­der what can be­come of that.” *** Like Joseph, the afore­men­tioned gen­tle­man who is los­ing his wife to Alzheimer’s, Steve knows the feel­ing of watch­ing a on­ce­con­ver­sa­tional loved one lose the abil­ity to com­mu­ni­cate, but also knows be­ing thank­ful for what’s there. “[My mother] isn’t able to speak very much, but some­times she will get a few words out, and amaz­ingly those words of­ten make sense,” he says. “There are also days when only gib­ber­ish comes out. The truly won­der­ful part is that she

June 8, 2018

knows much of what is go­ing on around her. She has con­ver­sa­tions with her­self [which] is ben­e­fi­cial, as she al­ways has the right an­swers. Some­times her words make sense, other times not to us — but I’m con­vinced she knows ex­actly what she is say­ing.” Even more heart­en­ing is when she laughs at a joke her son tells, or an­swers his ques­tions in “mmhmm” or sim­ply, mirac­u­lously, “yes.” Steve adds: “Mom is happy most of the time.” “In the past, my dad had mo­ments of clar­ity, and it was won­der­ful to have [him close, to] ex­pe­ri­ence that clar­ity with him,” Joel agrees. Mitch Mitchell, an out gay man from Ma­con, watched his fa­ther suc­cumb to the dis­ease. For him and his mother, it wasn’t as bad as other Alzheimer’s cases they’d heard of. “We hon­estly re­ally lucked out with my dad,” he tells Ge­or­gia Voice. “He’d for­get what he had just eaten, but he was kind of al­ways like that. He never for­got our names or faces. Some­times he wouldn’t know where he was or how he got there.” Even the end was not as bad as they’d an­tic­i­pated. “Mom and I were hold­ing his hands when he died. He just said he was happy and felt safe when he passed,” Mitch says. “I think we got re­ally lucky.” *** So is it best, given a choice, to keep the stricken at home for the fi­nal stage of their lives? Ac­cord­ing to Steve, ab­so­lutely. “It’s dif­fi­cult, yes,” he says, “but our moms still know us. And on most days, they know we are the im­por­tant fam­ily [mem­bers who are] al­ways there for them.” To the de­voted cou­ple, as­sisted liv­ing was out of the ques­tion. “They are keenly aware of so much around them; it’s just that they aren’t able to converse about it,” Steve says. “We have to read their minds to pro­vide the best care we can. While home care or as­sist­edliv­ing care comes with huge chal­lenges and sac­ri­fice, the re­wards are hugely won­der­ful! Ev­ery case is unique. But the loved one with Alzheimer’s is still in there. And with love and luck, we still see that ev­ery day. How fright­en­ing it would be for them if they felt all alone with a mind that wouldn’t func­tion as it used to func­tion. I can’t imag­ine not hav­ing our moms with us. They took great care of us and loved us our en­tire lives — it feels only right that we re­turn that love and kind­ness in any way we can.” Would that we all had such lov­ing peo­ple in our lives. “I think there’s a lot of time, money, and re­sources that are go­ing to­ward find­ing out more about this dis­ease. Whether there’s a cure on the hori­zon, I don’t know, but at the very least, there will be op­por­tu­ni­ties to di­ag­nose it much sooner and find greater meth­ods of treat­ment so the symp­toms aren’t as hor­rific.” His words words are both dif­fi­cult and hope­ful. He feels the sup­port group is some­thing that, with just an ex­tra push from our com­mu­nity, could ac­tu­ally hap­pen — and soon. “This is an op­por­tune time to have this sup­port group,” he re­it­er­ates. “It’s some­thing that’s very much needed.” Don urges all in­quiries about the LGBTQ care­givers sup­port group to reach out di­rectly to the Alzheimer’s As­so­ci­a­tion’s via the Ge­or­gia Chap­ter at Alz.org, or by call­ing 404-728-1181. The Ge­or­gia Voice would like to thank our brave in­ter­vie­wees for speak­ing so can­didly about a deeply emo­tional sub­ject. It is our gen­uine hope that their words find a way to the right peo­ple, so sup­port and re­sources may open up for those ex­pe­ri­enc­ing the thief of self. *Name changed to pro­tect pri­vacy

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