Colleen Acker, Community Living Programs Manager, CareWell Services Southwest
I had the opportunity to talk with my friend Shane about his journey in caregiving. We initiated this conversation to discuss some of the challenges that LGTBQ+ caregivers face, as Shane is transgender and currently receiving hormone therapy. Often, individuals in the queer community are underserved due to fear of discrimination or not being identified as caregivers. Through this dialogue about Shane’s experience, we hoped to uncover some nuggets of encouragement.
Shane and his wife Shannon have been caring for Shane’s parents, Bob and Rosemary, for the past several years. Rosemary recently passed. The couple resides in the family farmhouse to provide full time care. Currently, palliative and hospice care have been engaged for Bob. Shane states that these services have been instrumental in getting the proper care for Bob. The agencies are accepting and extremely helpful. A social worker meets with them regularly and welcomes requests for any support they might need. He points out that the social worker is a major benefit of these programs, especially if a person is wary of navigating the healthcare system.
One of the biggest challenges Shane has faced has been family dynamics. Many caregivers experience difficulty with familial relationships while navigating these emotionally charged situations. Ideas about how a parent should be cared for, at what level, and who should be providing the care, do not always align. Since Shane is the youngest and transgender, many family members were reluctant to trust his decisions. This was particularly true of his brothers. There are many opportunities for confusion or bias when the person making decisions is perceived as inexperienced, female, or LGBTQ+. However, the siblings also felt like it was Shane’s obligation to care for their parents without compensation because he is the youngest and living in the family home. Through the past few years, family pressure has eased as they have witnessed the capability and compassion that Shane and Shannon possess.
The Hughes’ have created a haven for Bob as he adjusts to this phase of his life without his wife. The couple have shown that they are masters of providing creative and caring enrichment for Bob, as they had for Rosemary through her last years.
As we were talking, Shane was preparing to take Bob on a short road trip in a rented RV so he could meet up with some old friends in Manistee. For Bob’s birthday, they organized a tractor parade. In everyday life, they play cards, listen to music, and eat three square meals a day. Shannon is a musician, which adds unique depth to the care they provide. Most importantly, Bob can enjoy living on his farm, in his own home, surrounded by memories and family.
Caregiving can be a transformative experience. When I asked Shane how this experience has affected him, he stated that he is more confident and clear about who he is. He feels it’s important to hang on to who you are throughout the caregiving journey. “It is still your life,” he said, “You either have to be who they (care recipient/family) want you to be or figure out who you are and stand in it.”
I asked Shane what advice he would give to members of the LGTBQ+ community who are caring for parents or family of choice. Shane replied, “The LGTBQ+ community is often devalued and has not received much support in the past. I encourage anyone in a caregiving role to utilize the available resources. The people on a flight always tell you to put on your oxygen mask before you help someone else. Without respite care, I probably wouldn’t have stayed long. It increased our willingness and ability to stay. Take care of yourself.” Shane also mentioned that while he and Shannon had not participated in any support groups, an LGTBQ+ group would be an encouraging, safe space for caregivers who face these unique challenges.
CareWell Services is making an ongoing effort to welcome and support those in the LGTBQ+ community. We will be offering Powerful Tools for Caregivers at Battle Creek Pride beginning September 11 from 6:00pm to 7:30pm. This six-week workshop empowers caregivers to take care of themselves while caring for others. More information will be available on our website and our Facebook page.
