An Individual doesn’t get cancer, a family does.”

—Terry Tempest Williams

 

Reggie, a gay bartender in Chicago, is caring for his partner of eleven years, who was recently diagnosed with prostate cancer. He put things in perspective.

“We’ve always cared for each other, neither of us thought this was going to be a big production. What was I going to do . . . not care for him? I love him. We talked about it for months before the surgery, we were certain we thought of everything. Then was just the two of us, alone. First came the anger, then resentment issues, then, it got worse. The stress was the hardest thing. It was pulling us apart. Then, after a while, things calmed down, but it was still a bit tense. Looking back, there were things I would have changed. The weird thing was that I grew a lot as a person. Eventually our love for one another somehow prevailed. We’re closer now than we were before, and I wouldn’t trade that for anything.” He chuckled, “But I’m not sure I would do it again.”

Rosalyn Carter once said, “There are only four kinds of people in the world—those who have been caregivers, those who are currently caregivers, those who will be caregivers and those who will need caregivers.”

There are 42.1 million caregivers in the U.S., the estimated economic value of those services is more than $450 billion according to a 2011 report by AARP (Feinberg et al., Valuing the Invaluable: 2011 Update: The Growing Contributions and Costs of Family Caregiving, 2011).

In the heterosexual population family members play the largest role in caring for aging adults. Lacking the formal family structure normally found within the heterosexual population, the LGBT community tend to take care of their own, through a close network of friends, partners, lovers and neighbors. And, for the most part — it works.

Alex a 60 year old gay man living in Texas with his partner of nearly 30 years, tells a different story about giving and receiving care.

“What’s a caregiver? I really don’t think I’m a caregiver per se. This is my life, this is my relationship.” I never thought it could be anything else. He’s my partner, he’s my husband. We’ve been together for almost 30 years — 30 years. This is the man I love and this is the man I will always love. I care for him because of that love and for a thousand other reasons. Good or bad it’s who we are. How am I any different than any other spouse who cares for her husband, really, I’m no different. We’re not unique in that way, were not void of feeling the same things as everyone else feels. So, if that’s what a caregiver is . . .  then I’m guilty.” Alex went on to tell us his experience has been a positive one. “I get to show my love through caring for this person I adore. Sure there are moments I would rather be doing something else, but we have a history together. We have a lifetime together and cancer can’t change that or take it away. This is the way it has to be”

Many caregivers report they experienced personal and emotional growth during the caregiving process, while others shared feelings of isolation, depression, and being overwhelmed. Further research must be conducted within the LGBT community. What is evident from the body of research at hand, is the level of commitment within the LGBT community to provide care for their ex-lovers, boyfriends, and partners, it is deep and growing deeper every day. There is much to learn from this unique and powerful method of caring.

Looking out the window on a gray, rainy day, Reggie pointed out “Look at our alternatives, I mean, am I going to put him in some long-term care place with people he doesn’t know and worse . . . with people who won’t understand him? That, in and of itself would be a death sentence. I could never let that happen.  We’ve dealt with homophobes our entire lives, and at our stage of the game we want peace, we want a supportive environment where we don’t have to explain who we are or who we are not. We’re tired of that, we’ve gone beyond that. That’s why we take care of each other. To do it any other way would be insane. Look, we want to be afforded the same care, the same respect, as everyone else receives, why can’t we have that? Isn’t that our inalienable right? We’re entitled to that as a minimum. But unfortunately, we’re not there yet and that’s a shame”

Both Alex and Reggie expressed negative feelings as they spoke about traditional health care facilities.

“People need to grow up, we hear the snide remarks. We see it in their attitude. It’s always there. We see it all too often.  It’s despicable and it’s wrong. One time, we were at the hospital and a group of nurses were talking and whispering and pointing at us, I felt like I wanted to say something but I didn’t, you get immune to it. We stopped going to that hospital. I mean, come on, they’re supposed to be professionals, it’s just disgusting because it shows their ignorance, and it shows the lack of understanding and training in the medical community” said Reggie.

Alex on the other hand, couldn’t help but post a huge smile as he proudly and loudly, told us precisely how he felt on this matter.

“We’re lucky, because I will throw myself around in public. I don’t care anymore. If someone makes me or my partner feel ‘less-than’ in some way I will call them out, and I don’t care who’s in the room. I know other couples who can’t or won’t say anything. It’s common in hospitals here, remember, we’re in Texas honey, and heterosexism is alive and well.”

Alex began to put it in a way that was powerful and succinct.

“All of us are the same in this respect; we are all human beings. We all breathe the same air, we all feel the same emotions. I don’t remember where I found this clipping but I keep it with me because it sums up all the arguments we fight for which are based upon equality and against discrimination . . .” He reached into his pocket and pulled out a small newspaper clipping and began to read it:

‘Barred access to the protections, benefits, and obligations of civil marriage, a person who enters into an intimate, exclusive union with another of the same sex is arbitrarily deprived of membership in one of our community’s most rewarding and cherished institutions. That exclusion is incompatible with the constitutional principles of respect for individual autonomy and equality under law.’

Alex was clearly moved after sharing his clipping with me as he held back tears, he slowly went into his house. I sat outside on the porch for what seemed like an eternity contemplating what this man was all about . . . it was a moment I will never forget.

Turning down a light, holding his hand, fluffing a pillow so it’s just right, are things a caregiver does every day in addition to all the other daily tasks. The everyday chores never go away. Paying the electric bill, paying rent, shopping for food, running to the pharmacy . . . it never ends.

Caregiving comes from the heart. It puts undue strain on the caregiver and the recipient in ways never before experienced. But unlike caregiving in the heterosexual community, care that is provided in the LGBT neighborhood is unique and special because it comes from a close circle of friends who offer themselves to their partners, lovers, neighbors, friends and family members unconditionally.