Berlin Sylvestre won the Excellence in Feature Writing, Non-Daily Award for this piece. Congratulations, Berlin!
Granny Pearl shuffled into the living room with unfocused eyes and mouth agape, startling me. I was a teenager visiting a friend’s house for the first time, and I had no idea we weren’t alone. The wiry-haired woman, naked from the waist down, carried an old, red purse and turned to me.
“Where’s my Mama?” she asked, her voice a quiver of panic. Given her state of undress and the fact that she seemed much too old to have a living mother, I knew something was terribly wrong. She didn’t even seem to acknowledge that I was a stranger in her house. She turned away from me and continued to shuffle in a tight circle. I was completely unable to speak, hoping my friend would return from the kitchen and alleviate the old woman’s anxiety.
He came back in short order and his normally friendly visage changed to one of anger once he saw his great-grandmother out of her room. Just a teen himself, he screamed, “Granny Pearl, your mother’s dead! How many times do I have to tell you that?” He then grabbed her arm and lead her away, far too roughly for her brittle frame. She tried to make out words as she was pulled back into her room, but they came out a garbled mess. I wanted to cry. She was frightened, and so was I — not at her, of course, but at my friend’s cruel reaction to what was clearly a very sick, elderly woman.
“She’s got old-timer’s,” he explained, a common play on Alzheimer’s, a disease that withers away at one’s mind, one’s very memories and ability to live a normal, independent life. Then he smirked, “She’s annoying as hell.”
1994. That was the last time we hung out.
Sometimes, Steve Caster’s mother thinks he’s her dad. On other occasions, he’s her husband or brother. He is patient with her, and understands that it’s not something she can help. Though he feeds her and cares for her as one might a child, he counts the little blessings, like a brief moment of clarity, when some of the fog that clouds her very sense of self fades for a moment, and she is able to see him as her son again — and how, in turn, he can talk to his mother once more.
The 54-year-old Roswell resident lives with his 52-year-old partner of 11 years, Joel Feuer, along with both of their mothers, who are living with Alzheimer’s disease. Steve’s mother is 93; Joel’s mother, 79. In a single house, they tackle the ups and downs as they come, rolling with the punches.
Joel and Steve
Joel echoes the earlier sentiment. “Sometimes [my mother] thinks I am her cousin,” he tells Georgia Voice. “Or she thinks I’m my dad. Only every now and then am I her son.”
Dealing with degenerative disease is something Steve has undergone with his own father, something his dedicated Joel witnessed alongside him for many years. So when the news came that Steve’s mother was faltering under a sickness of her own, Joel didn’t hesitate to let Steve know it was OK to bring his mother into their home for care. Through another twist of misfortune, Joel’s own mother began her own battle with Alzheimer’s.
So, around six years ago, the pair was fortunate enough to have the opportunity to purchase a home with a master bedroom on the main floor for their mothers, and a master bedroom upstairs for themselves.
“I don’t know how we get so lucky that such great options appear before us when they are needed most,” Joe says, clearly thankful.
“[Joel] already knew I would be asking him at some point, because it was the natural next step to take when she could no longer live alone,” Steve says. As Joel had recently lost his own father, he knew more than most that assisted living wasn’t the best option. Speaking of his own mother, Joel says, “I know if she eats, how much she eats and drinks, if she has used the bathroom. Plus, I don’t have the added stress of trying to get to the assisted-living facility in time for meals — that was another thing: If, after about 30 minutes, the residents didn’t eat their food, they would just take it away. Also, some of the CNAs seemed a bit rough.”
Steve with his mother, Doris
“With Alzheimer’s, we had no way to know what was happening when we were not with her, which was not that much,” replies Steve. “Even with a visit every day, there are countless hours of not knowing what’s happening, and she isn’t even able to tell us.
“We brought her home and now, [Joel’s mother] and my mom share a large master bedroom. We installed a hospital curtain for privacy as needed. They are doing fine together. I imagine it works especially well since both are quite far into their Alzheimer’s journey.”
Neither of their mothers, once very active in both mind and body, are able to walk now. Wheelchair-bound, the ladies rely on the care of their sons, caregivers, five-days-a-week hospice help, and a generous sister who lets the gentleman take a break each Sunday.
“Once the caregivers leave, I give my mom one more dose of medicine around 7pm, and then change her around 10:30pm before I go to bed,” Joel says. “She is then fine until the morning.”
Seeing the neurocognitive degeneration in their mothers is literally robbing the pair of two women that mean the very most. Recalls Steve: “[My mother and I] used to have great conversations, walks through our neighborhood, puzzle making, meals, and shopping together. She was an avid reader and enjoyed her book time. We laughed often and enjoyed every minute of our time together. We enjoyed music and piano playing. We’ve been the best of friends my whole life.”
Now, though, books are a thing of the past. In fact, it was her waning ability to read that helped tip off Steve’s family that something had gone awry.
“We noticed she kept the same books out,” he says. “Eventually, she stopped reading because she couldn’t remember the last chapter at all. After starting at the beginning repeatedly, she finally just stopped reading altogether.”
Also worrying was the fact that she became forgetful and would repeat the same questions over and over, often even forgetting where she was going when she was behind the wheel.
Joel with his mother, Rochelle
Joel’s mother lead a full life until Alzheimer’s stripped her of everything she’d built with her family.
“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 falls on the dementia scale.
Don on the move
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.
Of the LGBTQ/dementia support group, he says: “There’s currently nothing like it in the state of Georgia. 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 independently 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.
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 once-conversational 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 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 assisted-living 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.
Back to Don and his efforts to create a support group for the LGBTQ community: “I think what’s really important as I’m learning more about the subject of elder care for the community, and as someone new to the Atlanta region, [is that] I see a lot of assisted-living housing facilities going up as I drive around. It’s almost like a boom,” he says. “I have a genuine concern that the staff of these facilities are maybe not as in-the-know, so I think cultural competency training is really important, not only for these new centers, but for all of these centers, generally speaking. This impacts not only the LGBTQ community, but Atlanta as the proverbial melting pot. Having that cultural competency training is so vital.” As one who leads talks on the issue, he is certainly one to reach out to, should any of these facilities feel the need.
Though Don certainly doesn’t think the up-and-coming support group is the panacea to alleviating the devastation of Alzheimer’s and/or dementia, he thinks it’s an opportunity for some desperately needed support.
“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