“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.