Members of the LGBTQ community recently gathered at University of Illinois at Chicago ( UIC ) for a panel discussion focused on personal experiences of aging parent( s ) and elder-care issues.
"For me, I was really interested in finding other queer and trans folks who were dealing with elder care issues," said community organizer with Chicago i2i and lawyer Nebula Li.
The event's panelists included Li, LGBT historian and UIC professor John D'Emilio, community organizers and UIC educators Moises Villada and Liz Thomson and Affinity Community Services Community Organizer Phyllis Johnson.
"All the panelists are really open and personable, willing to share really private parts of their lives," said the program's organizer Thomson, interim director for the Asian American Resource and Cultural Center and core member of Chicago i2i. "So I was so appreciative of the panel." ( Note: Thomson prefers the pronouns "she" and "they." )
The program was open to the public and geared toward LGBTQ people doing caregiving as well as healthcare students and professionals looking to better understand how to create safer and more inclusive spaces, ultimately leading to more effective care.
Topics of discussion included racism, homophobia, and/or heterosexism in healthcare and governmental agencies; how eldercare affects community organizing and jobs; dealing with siblings' lack of support; setting healthy boundaries with your parent( s ); managing financial stress; and offering healthcare providers best practices.
"Other people have the same issues as me and that's really comforting," said Li. "I think gender presentation and discussing queer issues is kind of difficult, at least for us. When our parents are already at a compromised situation where everyone is like 'how is your mom doing,' it's hard to talk about your mom as the bad guy sometimes. That's another complicated relationship I was interested in discussing."
Panelists discussed subjects such as their own perspectives and personal stories relating to how a parent's illness affects the family in different ways, the roles each took on when their parent became ill and the impact of that role, moving parents into facilities, different states, or moving them into their own homes, and challenges in taking care of a parent, among other anecdotes. Panelists also offered their "gold nuggets" of wisdom they have learned along the way. A Q&A session among the attendees ended the program.
Johnson spoke on her experience of being her 92-year-old mother's sole caregiver. While discussing how the roles tend to flip when taking care of older parents, she insisted, the parent is still the parent.
"I think a lot people think that when they flip and they get to support their parents instead of being supported by their parents, they can say, 'no, do this, do that' as if their parents are seven," said Johnson, a retired Columbia College instructor. "But they're not. They're adults and most times they have their faculties, they have much more experience than you do, period. So, you find a balance."
Johnson said one of her challenges is finding the boundaries, meaning she often considers others' needs before her own. She added it was helpful to be able to talk about it with other people.
"Thinking about being on this panel, there were some things that kind of crystallized for me," said Johnson. "It was nice to have to think through 'what has my experience been and why.' Your Parents are only old once and it's a real blessing. I'm learning stuff about my grandparents, and her [her mother] and just getting to be with her is a treat."
With November being National Caregivers Month, Thomson developed the event reflecting upon the time a year and a half ago when her mother had a significant health episode and as a result, Thomson had to quickly find facilities, learn the lingo for rehab, and also advocate and work with her mom to be self-advocating.
"It was a blessing," said Thomson of the diverse panel. "I didn't really plan it so much that way, but after it turned out, then I was really glad it was intergenerational and such different experiences. I was definitely always going for various racial ethnicity and sexual orientation and gender identities, but the difference in age, that was a bonus. I would love to do this panel again, maybe with some other different audiences and crowds."
For fairly open Thomson, this event provided a space to share with more people than I2I members. They felt it important to elaborate on idea of the forgiveness, personally learning the lesson when experiencing frustration with their sister at one point when she was not helping with their ill mother.
The program also provided additional statistics from the Family Caregiver Alliance ( FCA ) 2012 including:
—LGBT respondents are slightly more likely to have provided care to an adult friend or relative in the past six months: 21 percent versus 17 percent;
—Gay, bisexual and transgender males provide more caregivers hours than heterosexual males; and
—African-Americans find themselves helping with three or more activities, compared to white and Asian-American caregivers; and Latino caregivers find themselves to be in fair or poorer health than white and Asian-American caregivers.
Chicago i2i, the LGBTQQ Asian and Pacific Islander community organization, organized the free event, while Affinity Community Services as well as UIC's Asian American Resource and Cultural Center and Gender and Sexuality Center served as co-sponsors. Chicago's SAGE Health Collective began the evening's event giving free chair massages to affirm self-care to caregivers and healthcare professionals.
Another thing Thomson said they took away from the conversational gathering was a reminder that although they can do some of the logistic stuff, mom is still the mom.
"Phyllis said it about 'you are always going to be the kid,' so even if you are wiping your mom's butt or cleaning up after them, no matter what, your position is always the kid and to be respectful and mindful, especially with aging and people with disabilities," said Thomson. "It's about treating them with dignity and respect and self-determination and agency and making sure that they have a voice, even in their own care, especially with their own body."
For more information on Chicagoi2i, visit www.chicagoi2i.org .
