Caring for the caregiver

Many in the LGBT community have experience as caregivers. Some spent the ’80s and ’90s taking care of loved ones and friends who were sick and dying of AIDS. Now, those caregivers and younger generations are facing the reality of caring for our aging friends and loved ones.

Caregiving is the act of taking care of a friend or loved one. For people over 65, most long-term care is provided informally at home. As baby boomers age and the number of older adults increases, more informal caregiving will be required.

For a number of reasons, LGBT people are much more likely than others to be caretakers. Having few ties to biological family members, who might otherwise feel responsible for us as we age, means that our care will come from our “families of choice.” The stigma of HIV/AIDS and the legacy of that crisis have taught us to care for ourselves when no one else steps forward. And many LGBT people are expected to care for their aging parents when their biological families, who may not even acknowledge their same-sex partnerships, assume that LGBT people are free from other responsibilities.

While many see the opportunity to assist others as a blessing, this good work is still work. Caregiving is stressful and time-consuming. It often requires stepping into unfamiliar roles, like the disorienting changes that adult children face as they begin to act as parents for their parents. The burden of these stresses can lead to reduced life expectancies for caregivers, especially if they are over 65.

“Stress among caregivers is probably universal,” according to Neville Strumpf, Ph.D., an expert in geriatrics at the University of Pennsylvania.

LGBT caregivers and people caring for LGBT older adults sometimes face double jeopardy. In addition to the stressful challenges of caretaking, unique questions and concerns arise about privacy and equality of treatment. Discrimination in laws governing marriage, domestic-partner benefits and family medical leave put many LGBT caregivers in a difficult position. Who has decision-making authority? Can I take time off from work to care for my partner? How can we pay for all of this?

“Planning ahead and discussing these matters openly and honestly in advance of a crisis are key to avoiding pitfalls,” Strumpf said.

These challenges are even more difficult for caregivers who are in the closet themselves, or who are caring for someone who is not out about their orientation or gender identity.

So what can be done to lessen the burdens of caretaking? Before you even find yourself in a caregiving situation, Strumpf recommends you “make some plans with regard to finances, wills, advance directives and other legal documents.” She also advised that you “have a sensitive primary-care provider who is familiar with your family structure and your preferences for care.”

Other steps that caregivers can take to reduce the stresses of caregiving include seeking respite. Respite is a break from your caregiving responsibilities, the chance to take care of yourself so you are better able to care for your loved one. It might be as simple as a few hours to yourself for shopping, laundry and self-care. The Philadelphia Corporation for Aging (215-765-9040) can help you arrange for respite.

Seek out resources and education. It’s unlikely that you are the first person to be confronted with a problem. Try the CARIE hotline (215-545-5728) to speak with someone who can counsel you about your options. If your loved one is experiencing dementia, try the Alzheimer’s Association’s hotline (800-272-3900) for up-to-date resources. Find support and remain connected outside the caretaking relationship. If you’re a believer, seek out an LGBT-friendly spiritual or religious group for support. If not, there are still many places to look. Free caregiver support groups, usually designed for those managing a particular disease or condition, meet all over the city on a regular basis. Try a simple web search.

For more information about caregiving, specifically with a focus on cognitive issues including dementia, Alzheimer’s disease or memory loss, an LGBTEI Conversation, “The Aging Mind 101,” will be presented April 20. To register or to receive more information about the session, email your name and telephone number to [email protected] or call 267-546-3448.

Theo Schall is a master’s candidate at the University of Pennsylvania’s School of Social Policy and Practice and an intern with the LGBT Elder Initiative. The LGBTEI fosters and advocates for services and resources that are competent, culturally sensitive, inclusive and responsive to the needs of LGBT older adults. To comment on this article, suggest topics for future articles or for more information, visit or call 267-546-3448. Watch for “Gettin’ On” each month in PGN.