Out On The Couch
Caring for LGBTQ+ Caregivers of Older Adults
LGBTQ+ caregivers of older adults (generally people age 60+) are a special population in need of support and affirmative care. These family members and friends provide unpaid physical and/or emotional assistance to spouses and partners, parents, friends–some of whom were former partners–siblings, and neighbors. While temporary caregiving for others, when one is recovering from surgery, injury, or illness, can take place at any stage of life and is challenging in many ways, caregiving for older adults can last for many years. This article will explore the issues that some LGBTQ+ caregivers experience in the course of caring for elders.
I have had the privilege, during my years of practice in the field of aging, of facilitating support groups for caregivers seeking out assistance. The members of my groups have openly shared their innermost thoughts and feelings about giving care with me and with each other. They have expressed feeling that there is no end in sight as more and more of their time and energy becomes consumed with caring for a loved one who will never get better–only worse. Some members have participated in these groups for years on end as they witness the gradual decline of their care recipients due to dementia, medical frailty, cancer, or Parkinson’s disease.
All of these caregivers find that their friends and acquaintances just don’t understand what they are going through and the toll that giving care takes on them. They have relied on each other, and on a trained social worker who holds space in the group setting, to help them navigate the increasingly challenging situations they encounter. When providers become more well-versed in understanding experiences of unpaid caregiving in LGBTQ+ communities, people like these can get better care and more support outside of a group setting. So here are a few things to bear in mind about these generous, caring, and often severely stressed-out individuals.
First, it is common for queer and trans people who are not related by blood or marriage to care for each other. In fact, former romantic partners will sometimes become caregivers. Mainstream service providers may not be accustomed to this, and community members have reported encountering a lack of understanding about why an ex-partner would remain closely connected. But the formation of familial relationships among our loving LGBTQ+ communities is commonplace; a number of my LGBT older adult clients have considered their exes to be family members. It is important that providers include anyone an older adult has designated as a caregiver in health care decision making processes–and also that providers recognize the significant strain such caregivers may experience.
That strain can manifest in a number of different ways and lead to negative social and health outcomes. Providing physical, emotional, and financial support for a loved one while putting one’s own needs on the back burner time and again leads to exhaustion and isolation. And LGBTQ+ caregivers face risk factors beyond those commonly experienced by non-LGBTQ+ caregivers. For instance, LGBTQ+ adults who are childless are often expected to take on all of the responsibility of caring for aging cisgender and heterosexual parents. But they may also have faced a historic lack of acceptance, potentially entailing verbal and/or physical abuse, from those parents. And same-sex partners and spouses may still face significant discrimination in the medical, senior services, and institutional settings in which their loved ones receive care.
Without adequate support and without anyone to help share the care, caregivers risk burning out. While LGBTQ+-specific groups can be difficult to find outside of SAGE: Advocacy and Services for LGBT Elders’ NYC headquarters, caregiver support programs are available in every state. The National Family Caregiver Support Program (NFCSP), a federal initiative, provides grants to fund not only support groups but case management and some respite and supplemental services. This means that local resources–from assistance with information, benefits and entitlements, and referrals to limited financial help paying for home care and medical supplies–are available to all unpaid caregivers.
Further, an important piece of legislation affecting caregivers has been enacted in roughly 40 states so far. The CARE (Caregiver Advice, Record, and Enable) Act, known by a different name in some states, requires hospitals to ask patients, at the time of their admission, if they would like to designate someone as their caregiver. Whatever the relationship of the caregiver to the patient, the hospital must then record the caregiver’s name in the medical record, notify the caregiver of patient discharge, and provide training for performing medical tasks once the patient is home. This is an important legal consideration for LGBTQ+ caregivers without a formal or documented relationship to their care recipients.
For further reading on this topic, check out the selection of caregivers’ resources at the National Resource Center on LGBT Aging.
Stewart, D. B., & Kent, A. (2017). Caregiving in the LGBT Community: A Guide to Engaging and Supporting LGBT Caregivers through Programming. Retrieved September 29, 2019, from https://www.lgbtagingcenter.org/resources/resource.cfm?r=883.