LGBT caregivers: The isolated among the isolated; what Baltimore is doing to help

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Editor’s note: This piece originally was published in 2015 for the website Caregiver Relief. Reprinted here with permission. Special thanks to Diane Carbo.

By David Heitz

There’s a double-edged sword when it comes to LGBT people and caregiving.

On the one hand, LGBT people often fall into the caregiver role. Many caregivers, gay or not, will attest that when you don’t have children and/or a spouse, you tend to be elected mom’s or dad’s caregiver by your siblings. The idea is that you don’t have kids to look after, you don’t have a spouse to coo over, so “it’s just easier” for you to do it.

Don’t get me wrong. Spouses often end up caring for their spouses too, often with no help at all from their kids, if they even have any. And that’s certainly no cakewalk either.

But time and again, I see many gay and lesbian people caring for mom or dad, grandma or grandpa, an aunt or an uncle, or even just a friend.

When I first met other caregivers like myself, which really never happened until my dad went into a facility, I was shocked by the sheer number of “family” (as in “friends of Dorothy” as they say) that seemed to be all over the place.

And here’s the other side to the LGBT caregiving sword. Going back to being that person with no spouse, and no children, what does that mean for you when you get old?

It means you might be by yourself. Eighty percent of all caregivers are family members, statistics show. So who takes care of you if you have no family? (You can read about that in part II of my report on LGBT caregivers)

It’s a cruel, uncomfortable riddle increasingly coming to light and being addressed in communities from coast to coast, albeit slowly.

Family, friends either don’t care or don’t get it

In Baltimore, Chase Brexton Health Care has launched an initiative called SAGECAP. The initiative provides resources, education and support for informal, unpaid LGBT caregivers.

The truth is, all caregivers need way more help than we’re getting. So what makes caregiving any harder for LGBT people?

“The reality is that many more LGBT older adults are cut off from family and depend heavily on support from friends and other caregivers,” said Nate Sweeney, executive director of Chase Brexton’s LGBT Health Resource Center. “Through SAGECAP we can connect LGBT caregivers and elders to culturally competent and welcoming service providers. We’re encouraged by the tremendous response from Baltimore area providers who want to help improve critical services for the often isolated and marginalized LGBT population.”

Caregiving expert Diane Carbo has been encouraging me to write about being an LGBT caregiver. Until I received the Chase Brexton news release last week, I thought, “What makes LGBT caregivers any different from any other caregiver?”

Well, with dad already into his second facility, and with 13 years having now passed since I moved back to Illinois from Los Angeles in 2002 to help care for him (at a time when my own life admittedly needed rebuilding), I forget how difficult it has been.

I wish I could say that the stereotype of gay people being narcissistic isn’t true, but often it is true. While lots of gay people my age eventually find themselves in the caregiving role, many others are far too wrapped up in their hedonistic lives to be bothered which such things. Until you become a dedicated caregiver and meet the other LGBT people doing this same thing, you don’t find a lot of compassion unless you’re looking for it.

And there’s another sad truth. Many of us have relatives who, because we’re gay, just don’t think too highly of us. As we enter our middle-age years, particularly if one parent already has passed, there really isn’t much support from our families. I have two cousins – Cindy and Brad – who have been there for me in one way or another, and I’m grateful for that. But they’ve got kids, spouses, and aging mothers themselves. They already have lost their dads, as I did my mother in 1995. They understand what I’m going through, and that it’s difficult.

When discrimination simply can’t be tolerated

When you enter into this caregiving stuff, it’s extremely overwhelming. The pharmacy becomes the first demon who enters your life. Then the doctors. Then, the facility.

Oy. The facility.

You will find that some facilities may employ people who care for your loved one who don’t much like gay people either. Sometimes it’s the culture they grew up in. Other times it may be their political views. Sometimes you will find family members of others at the facility who don’t care for your “gay lifestyle” either. Some are rude enough to make it perfectly clear.

I can tolerate, ignore even, people who don’t like me because I’m gay. But if they are being paid thousands of dollars per month out of my dad’s hard-earned life savings, while it’s circling the drain, I won’t tolerate them being rude to myself or my father. I’ll speak up. Some people don’t like an angry queen up in their face, even after they’ve gotten up in your face.

The gay factor often just creates more poo on top of the poo that caregivers face every day. And the poo is endless. The paperwork. The voice mails you leave for the adult protection agencies that never are returned.

Feeling like nobody gives a rat’s bottom about your loved one. Feeling like you’re all alone in the world.

It’s really, really tough. I got sober 15 months ago, when I knew what a nightmare I had ahead of me. And thank God I did. But when you get sober, if you’re going to stay sober, you’ve got to say goodbye to all of those people you partied with. You simply must. So for me, that led to further isolation. But with my writing and with social media, it really hasn’t been so bad.

How the Maryland program works

Chase Brexton, through a partnership with SAGE (Services & Advocacy for Gay, Lesbian, Bisexual & Transgender Elders) created SAGECAP to help LGBT caregivers who are as lost and frustrated as I once was. They’re offering one-on-one counseling, referrals to financial aid, legal and medical assistance, and other information. And they do it in a safe and welcoming environment.

It’s simple. Being a caregiver often feels like a punch in the gut. Every day. You need to be in a place where you can be yourself, where you can be comfortable expressing yourself, when you’re looking for help.

“Providing long-term care can feel overwhelming, and can often be even more of a challenge for members of the LGBT community, who may be isolated, living without family and lacking good access to service,” the Chase Brexton news release states. “Despite recent progress, accessing services can be difficult and uncomfortable, and LGBT aging adults access services at a lower rate than the rest of the population. Education is key to finding these services and programs, and can help keep a loved one home where they want to reside.”

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