Senior Living: Taking Care of the Caregivers

LGBT-Caregiver

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By Xay Yang

Creating a multicultural, intergenerational, and cross-class LGBTQ Caregiver Support Group.

It’s a new year! A new start! A new resolution! I am excited for what this new year brings. A year ago, I wouldn’t have imagined being where I am today, doing what I love with a community that means so much. I’ve been working on the LGBTQ Caregiver Support Initiative for a year now, along with Wilder Foundation and many community members across Minnesota who are or have been caregivers to their friends, partners, neighbors, and coworkers, biological and chosen families. It has been a heart-wrenching, eye-opening, and trail-blazing experience for me. I am sure many who are a part of this effort feel the same way.

Grassroots beginnings

The LGBTQ Caregiver Initiative began in April of 2013, when the Wilder Foundation connected with a local LGBTQ caregiver through their online forum CaregivingNOW—a lesbian woman caring for her long-time partner who had Alzheimer’s. She was interested in doing more to support and connect with other people caring for a partner, friend, or family member. Wilder was aware of the gap in services for LGBTQ people who are caregiving for an older adult and had been looking for ways to help meet the need. While caregiving can occur for the entire age spectrum, the group began a conversation about how to create a space for LGBTQ caregivers of older adults. They determined early on that in order to meet the needs of the entire LGBTQ community they would need to build a multicultural, intergenerational, cross-class space from the outset. As a community, we have not done the best in connecting across race, class, and generation. From a younger person’s perspective, we miss out on important facts and historical knowledge from our elders that can inform our work in the movement. In the same way, when we don’t intentionally connect with people outside of our race and class, we miss the opportunity to learn and understand different approaches to caregiving. We have to remember that there are many leaders that have come before us and there will be those that come after us. It’s an important step to be mindful of as we create this space.

From there, the conversation grew from two people, to three, and continued to increase with each new person being asked to reach out to their friends and family in the LGBTQ community. In the spring of 2014, the group decided it was time to formally host a series of Community Design Sessions.

A coming out moment

At the first couple of community design sessions, a diverse group of caregivers and powerhouse organizers showed up ready to help build the foundation of a multicultural LGBTQ Caregiver Support Initiative. Over the next six months, we hosted eight design sessions, each time with new community leaders present, and new caregivers excited to find us. We also had one-on-one conversations with leaders from LGBTQ organizations, leaders from the faith communities and caregivers who were willing to share their stories with us.

I’ll always remember the first community design session that I attended. I felt like I had a coming out moment for myself. In that meeting, I realized that I had been a caregiver and just never knew it. Before that moment, I always thought of caregivers as meaning elderly people (as in the care-recipient), when in fact those have two different meanings. I never really knew what it meant. When I was caregiving, I just thought it was natural for me to assume that role because the people I was caregiving for were my friends, my girlfriend, my chosen family and at times, my biological family members. So I had a moment of coming out as a caregiver. As stated by Wilder’s Caregiver Awareness Campaign: a caregiver is anyone actively taking care of an adult with a chronic illness or disability, or a frail elder. Family members and friends who provide care to a loved one often think of themselves as daughters, husbands, partners, and friends—not caregivers.

Breaking new ground

More than 65 million people in the United States are currently caregiving. Family members, friends, neighbors, and coworkers provide over 90% of long-term care in Minnesota. These caregivers are the backbone of our aging care system and, according to a 2012 Twin Cities LGBT Aging Needs Assessment Survey Report by the PFund Foundation, LGBTQ people are twice as likely to be caregiving as the general public. The study also indicated that while in general, LGBTQ people simply want long-term care services that are welcoming to our community; when it comes to support groups they want an LGBTQ-specific space.

We’ve spent the past nine months listening to stories from LGBTQ caregivers, as well as organizing and planning. We are so excited to announce that in February 2015, we will launch Minnesota’s only LGBTQ Caregiver Support Group. In the support group, caregivers of older adults will be able to come together to share their feelings, thoughts, and the challenges they are facing in their caregiving journey in a safe, confidential, LGBTQ-specific space. The goal of the LGBTQ Caregiver Support Group is to provide emotional and social support and opportunities for learning to group members. We are using a co-facilitation model, with an intentionally cross-racial facilitation team. We are committed to creating a welcoming multicultural, cross-class, intergenerational LGBTQ-specific space.

We see launching the support group as our first step. Our small but committed group plans to host a series of Kitchen Table Conversations in 2015, engaging with all of you, our LGBTQ community, in more conversations about aging and caregiving. We plan on hosting dinners in different neighborhoods across the Twin Cities. In the future, the group also wants to address aging policy issues affecting LGBTQ people and to gather or create resources that could help those in the caregiving role.

Help us build this space

I’ve learned through being a part of this effort that, in caregiving, people are emotionally drained. They are so invested in—and busy with—caregiving that what they really need and yearn for is someone to connect with, to have someone that can empathize with them, and to find a community where advice, experiences, and stories can be shared. They want to meet others who can relate to them and know that they are not alone in this journey of caregiving.

We had one person come from Wisconsin to share her LGBTQ caregiving story and to help us plan and organize. Today, she continues to call into our organizing meetings. I know there are others out there who are seeking a space like this, but are unaware that it exists. So, to start off the new year, my resolution for 2015 is to continue reaching out and building relationships so that we can continue to create much-needed spaces like the LGBTQ Caregiver Support Group. I hope that you will join us in building this space and I hope that you will share what you know about this opportunity with the people you know.

The LGBTQ Caregiver Support Group will launch in February 2015 with a Kick-Off Brunch on February 1st followed by monthly LGBTQ Caregiver Support Group meetings.

Register for the Kick-Off Brunch at: https://lgbtqcaregiverbrunch.eventbrite.com

We welcome your insights and experiences in creating the first LGBTQ Caregiver Support Group!  Find us on Facebook (MN LGBTQ Caregiver’s Group) or email me at xay.yang@wilder.org to be added to our email list. There is so much work left to do.

One Response to Senior Living: Taking Care of the Caregivers

  1. Holly Murs says:

    This is a side of caregiving that needs more attention. I hope that your initiative will be successful and that you support will start pouring in. We hope to help you reach more people, so we featured this post in our Weekly Digest. You can read it here http://www.ltcoptions.com/weekly-digest-life-stages-bridging-gap/.

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