This article is part of News is Out’s Caring for Community series, which is focused on the challenges and triumphs of giving and receiving care in the LGBTQ+ community. These stories have been created through a strategic partnership between AARP and News is Out.
Michael Horvich has been many things in his lifetime, including a teacher, photographer and author.
However, one of his most important roles was being a caregiver to Gregory Maire—Horvich’s husband of 41 years who died in 2015.
Maire was diagnosed with Alzheimer’s in the 29th year of their relationship (2003); he was 55 years old.
“For the longest time I didn’t want to be called a caregiver,” Horvich, 77, said. “That would reduce Greg to being my patient and that was never the case. Our relationship was always built on respect and communication for more than 41 years.
“However, as things progressed, it did turn into caregiving—and it turned into a lot of nursing care. Helping him with a lot of things he couldn’t do for himself anymore—but in a respectful way. So I was more of a caregiving partner—or there was the caregiving team, which were me, Greg, the cats, the doctors and the specialists.
“For instance, in the beginning, when we went to a restaurant, he decided what he wanted to eat. Then, I’d make some suggestions; then, I’d pick what he wanted. Eventually, toward the end, there was this period where he lost trust in me.”
Horvich also talked about how everything from cooking to reading (“At one point, I brought in this brand-new technology [for Maire] called a newspaper, where you turn the pages”) to navigating his way through their Evanston building became difficult for Maire, underscoring how every aspect of the couple’s lives changed because of the disease.
In addition, Horvich said it was difficult to gauge what Maire would remember: “I would ask, ‘Greg, did you take your meds?’ and he’d say, ‘Yeah, I did—but when I double-checked, he hadn’t.”
However, there were other aspects to contend with, Horvich said: “Another thing that complicated things with the coming and going of cognitive ability is that you never really knew what he knew or didn’t know.
“And to do that in a way that allowed me to deal with my own emotions but not put those emotions on him. For example, I learned how to cry in our bed without shaking it [because] that would wake him. If I had a lot of crying to do, I’d take a shower.”
At one point, Maire was transferred to Skokie’s Lieberman Center for Health & Rehabilitation. “If I hadn’t, I would’ve had to turn the condo into a 24/7 medical unit,” said Horvich.
“Living with Alzheimer’s doesn’t have to be a death sentence, although it wasn’t easy,” Horvich emphasized. “You can live fairly well with it although it’s certainly a degenerative type of situation. You can’t make assumptions and treat him like a child; he wasn’t, although his abilities started to become childlike. I remember that he got lost in a Whole Foods and there was such a frightened look on his face.”
As for family and friends, Horvich said, “They were supportive. People are always good-natured and asked, ‘What can I do to help?’ It’s hard for a caregiver to decide or ask, so it’s always nicer if the person says, ‘I’m bringing dinner over.’” In other words, it helps to be proactive.
When asked what he’d like people to remember about Maire, Horvich listed several of his late husband’s talents. “He was a high-end architect/interior designer. He had a great knack for listening to his clients and creating [the right] scenarios for them. He was also talented with historic renovations.
“He sang; he was with the Chicago Gay Men’s Chorus. We had a beautiful grand piano and he’d play gorgeous classical music; he really loved Chopin, but he did Mozart and Beethoven. For me, the concept of home was sitting and listening to him practice. When he couldn’t play the piano anymore, he decided to sell it. Also, he was president of DIFFA [Design Industries Foundation Fighting AIDS].”
Regarding Maire, “people say, ‘I’m so sorry’ and I just say, ‘He was ready to go,’” Horvich said. “And while I miss him terribly, I’m happy that he decided it was time. It would’ve been selfish of me to want him to hold on just to make me feel better.
“When you love someone, you do what you have to. A lot of people said, ‘Michael, the fact that you stuck it out…’ I can’t imagine NOT [doing that]. If you really love someone, you don’t desert them at a time like that.”
Horvich’s website contains vast amounts of information about various aspects of Alzheimer’s, and he has articles on Medium about how to deal with being a caregiver.
In addition, Alzheimer’s: A Love Story—a 15-minute documentary about a week in Maire’s last year—is available here. One of Horvich’s many other columns is called “Alzheimer’s: A Love Story” and is located here.
