Lake Effect recently covered the opening of the Inclusion Clinic by Froedtert & the Medical College of Wisconsin – the area’s first primary and preventive care clinic for the LGBTQ community. On the other end of the care spectrum is navigating the local, state, and federal aid systems you might need when you or your partner faces a disability later in life.
Milwaukee native Larry Gnatzig recently navigated these support systems when his husband, Jeff Tucker, was diagnosed with frontotemporal dementia three years ago.
According the the Alzheimer's Association, nerve cell damage caused by frontotemporal dementia leads to loss of function in the brain regions behind your forehead and ears, which then cause deterioration in behavior and personality, language disturbances, or alterations in muscle or motor functions.
"In the beginning [Jeff's] comment was always, 'Well I feel normal. Everything's fine,'" recalls Gnatzig. "This vibrant man who I saw changed, and getting the answers was scary - what does this mean for our lives now?"
Even though Larry and Jeff had been together for more than two decades, the systems and policies in place at the time of Jeff's diagnosis did not meet or even recognize their needs as a same sex couple.
During their first dementia screening from the county, Gnatzig says their first case worker treated them with such disrespect, he knew he had to change the systems in place.
"That experience gave me the power to step through the fear, and I was in contact with anybody I could be to get this changed," he says.
Gnatzig became an activist not just for his husband, but others who are dealing with the many faces of dementia. "Love was my motivator here, but anger was my drive," he says.
Working with local, state, and federal organizations, Gnatzig helped pave the way to systemic changes state-wide for dementia screenings with those with early onset, and also made LGBTQ sensitivity training a requirement for case workers.
While there has been a lot of progress in aid and services for people with dementia, Gnatzig says "there's still things that need to be done within the demtia world to reach out to the LGBT community to make them feel comfortable and safe."
Outside of the activism is Gnatzig's daily reality of being a husband and caretaker - something he never thought he would have to do.
"We have pretty good support from family as far as emotional support, but the caretaking support really relies on me and I don't like it," says Gnatzig. "I won't ever deny this is something I hate and always will, but how can I make it the best? So we've learned how to do that and put things in place so that we're safe, comfortable, and have the best life possible."
Gnatzig recommends finding the support you need if you are responsible for the care of someone in your life dealing with dementia. From connecting with the Alzheimer's Association and support groups to hiring a housekeeping or grocery service, these steps can let you focus on what's important. But most of all, Gnatzig says you need to have the difficult conversations with everyone in your family about long-term care and what your wishes are.
"Just ask the question, because if you don't ask you won't get the answer," he says. "And I would say do it without some kind of diagnosis - do it now, do it now, do it now."
Although frontotemporal dementia has changed Gnatzig's and his husband's lives, he looks at the bigger picture a little differently.
"Great things come from doing something you hate for the sake of someone you love. And so many great things have come from this whole disease and our lives together, we have an amazing life," he says.