Expectant Caregiving

Caroline Werner talks to Jane De Broux of the Area Agency on Aging about resources available in Dane County.

There are many reasons one might end up providing support to another person, and in the LGBTQ community it’s all the more likely that chosen family will be called on to care for an aging and/or ailing loved one. Whether our birth families have cut us out, the health care system has failed us, or simply because it’s the right decision, it’s not uncommon to find ourselves in the caregiver role for partners, a spouse, a relative, or a close friend.

In 2015, of an estimated 34.2 million adults in the U.S. providing unpaid care to an adult aged 50 or older, nine percent identified as LGBT. If you haven’t already had the experience of caring for anyone, you may yet.

A fact sheet on LGBT caregiving put together by SAGE’s National Resource Center on Aging lists several important things for LGBT caregivers to know:

• LGBT caregivers are more likely to be caring in isolation and are more likely to be within the age cohort as the people they’re caring for. For both of these reasons, finding others who can assist, including professional service providers, is an important way to make sure a loved one’s care won’t lapse due to caregiver burnout or health problems.

• LGBT people become caregivers more often: LGBT baby boomers and Millennials tend to take on the care of their aging parents at a disproportionate rate. Even if partnered, families often see LGBT adults as single and rely on them for caregiving.

According to the Family Caregiver Alliance, “Government agencies, nonprofit organizations, and the media have focused increasing attention on the needs of seniors and those who provide them with support, assistance or care. Less attention has been focused on the needs of Lesbian, Gay, Bisexual and Transgender older adults and in particular, their caregivers, whether partners, friends or other family members. The support that a caregiver receives from friends and family is often critical in relieving some of the stress of providing assistance to someone who has a chronic illness. …developing a support system comprised of trusted friends and sensitive community services and programs will be especially important.”

The Share the Care program that OutReach began a few years ago with a focus on this had a few success stories before shutting down due to insufficient volunteer numbers.

Where do we and caregivers go for help?

Jane De Broux is the Caregiver Program Coordinator for the Area Agency on Aging of Dane County. Her office is located with the Aging and Disabilities Resource Center in the Northside TownCenter shopping mall.

Jane is a member of our community and recently married her partner of 23 years. In her own role, she is an “expectant” and “long-distance” caregiver for her parents, both in their early 80s and who reside in the Northeastern part of the state. She also cares for older adult friends and neighbors.

The National Family Caregiver Support Program (NFCSP) began in 2000 and is funded by the Older Americans Act (OAA), which was enacted in 1965. The goal of the program is to keep older adults in their own homes for as long as possible. This is often less expensive than paying for nursing home care. Also, the existing long-term care system is not able to handle the increasing numbers of seniors and those with differing abilities who need care.

Sadly, Jane reports OAA is underfunded. This means we have to become more community-based and multigenerational to support each other. For example, through certain programs, youth can help out in elders’ homes, providing basic care and company often in exchange for reduced or free room and board. Everyone gets old if we’re lucky, so this is a way to “pay it forward.”

Jane’s position is multi-dimensional. She administers the NFCSP grant, holds educational sessions, manages a support group list, refers caregivers to appropriate resources, and writes and distributes the monthly Caregiver Chronicles newsletter (contact her at jane.debroux@countyofdane.com to receive it).

The NFCSP grant program provides financial assistance for respite care and/or supplemental services such as grab bars, Personal Emergency Response Systems, or transportation to and from medical appointments. There are no income requirements to qualify. The one-time grants are set at a maximum of $750 to serve more people in Dane County. The application comes through the lens of the caregiver who is attached to the qualifying person. What does the caregiver need? If meditation for the caregiver would help the caregiver continue to provide better care, they can request money to pay for classes and for alternative care to come while the caregiver is in class.

Outreach presentations to caregivers and employers are available. Information sessions are held at community spaces and workplaces. Contact Jane (608-261-5679) for specifics.

Classes for caregivers include “Meditation for Caregivers” and “Powerful Tools for Caregivers” and are offered through the Caregiver Program. Free Telephone Learning Sessions are available through caregiverteleconnection.org (866-390-6491). Statewide caregiver information is available at: wisconsincaregiver.org.

The hardest part of Jane’s job is locating caregivers who could use support. Some people doing the work don’t consider themselves caregivers in the first place. They may not live with the person, so they travel in and out of the elder’s life depending on the need.

If you’re providing care for someone, please contact Jane. She wants to make life a little easier for you and who you’re caring for.