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LGBTQ+ Caregiving

As a LGBTQ+ caregiver, I found a huge amount of love and community support when I embraced the intersectionality of both identities, one as a caregiver and the other as a member of the LGBTQ+ community. Caregiving is a service of love for another person. Expressing your authentic being as LGBTQ+ is love for yourself. Both identities involve love, commitment, and human connection. I believe no person should be alone on their LGBTQ+ caregiving journey.

I was a caregiver for my grandma for 10 years. She had diabetes, was incontinent, and used a wheelchair. Caregiving for her was physically exhausting and mentally challenging. I was in my mid-twenties when I started caregiving for her and I felt socially isolated because none of my peers were taking care of another older adult. Caregiving took time away from my personal interests and goals. Often, I felt lonely and emotionally frustrated. 

I actually didn’t know the term “caregiver” until around 5 years into caregiving. I always thought I was just a granddaughter taking care of my grandma. When I learned the keyword “caregiver,” I was able to tap into a whole new world of resources by searching for caregiver books, workshops, tutorials, events, and support groups. I didn’t feel alone anymore. I found caregiver communities, both online and in-person, that shared similar experiences and they taught me life enriching tips and coping strategies. By self-identifying as a caregiver, I gained new strength, perspective, knowledge, and friendships.

Expressing my gender identity and sexual orientation during my young adulthood was challenging at home because of my family culture. I didn’t have any role models. At that time, I was the only one in my family that identified as LGBTQ+. My grandma was a traditional Chinese matriarch and she gave me endless speeches on marrying a proper man. As a lesbian, I disregarded her suggestions and I committed to my attraction to women. I found my chosen family and friends at LGBTQ+ community events, workshops, and festivals. I was able to connect with folks that experienced similar family interactions and they supported my desire to follow my heart and not cultural traditions. By connecting with the LGBTQ+ community, I felt a sense of social belonging and ownership in my lifestyle.

While I was dating women, I started caregiving for my grandma. It was emotionally difficult to share my dating lifestyle with her because she did not take my relationships with women seriously and dismissed my happiness with them. It was frustrating and heartbreaking to hear my grandma consistently tell me that I need a man to take care of me and that my female relationships won’t last. I kept telling her that what mattered to me was that I’m in a loving relationship with a person who will take care of me, just like how I am taking care of her. This conversation carried on for years. Grandma finally changed her perspective on my relationships when same sex marriage was legalized in California. She recognized my partner at that time and gave us a blessing before she passed away. 

There are similarities in taking on the caregiver role and in expressing your true identity. Both take time, patience, and acceptance. 

It takes time to adjust your life to new responsibilities, to develop patience in providing continuous care, and to accept the uncertain timeline of caregiving. It takes time to explore your individuality as a LGBTQ+ person and to practice patience for the acceptance from your family and friends. Having multiple community support systems in place definitely helped my overall well-being as a LGBTQ+ caregiver.

Ultimately, caregiving is a human taking care of another human. 

Love for another person is love. 

Caregiving is love. 

Love is love.

 

READ MORE BELOW  

1 in 5 LGBTQ+ people provides care to a loved one, compared to 1 in 6 non LGBTQ+ identifying people. For more information on Caregiving in the LGBTQ+ community please read more from our friends at SAGE.  

 

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Caregiving

Five Lessons I Learned from Dad on Our Last Journey Together

Dad, a teacher by profession and a lifelong learner, was always there to offer advice and support throughout my upbringing. His values were firmly established in his early days on a farm and his character shaped during his time spent in the navy in World War II. While he was firmly set in his values, he was equally open-minded, curious by nature, and genuinely interested in people.

Caregiving with love respect and boundaries. Family road trips and love.

As a teacher, Dad had flexible summers and we could take long trips. The most memorable of these was a round trip from Florida to California in a used “sleeps four” camper that barely slept two. Mom, who was more of a city girl, reluctantly agreed to the trip, but spent most of her time just making sure that my brother and I didn’t kill each other in the backseat. And while Dad made sure to document the whole trip in photos, I built my postcard collection.

Family trips. Family vacation and road trips that set values that helped us with caregivng As a family caregiver our roles transitioned from Dad and daughter to caregiver and care recipient, and we both found ourselves at a low point in our lives.

Those summer adventures left an impression on me and I spent my adult years on the move always looking to see what was around the next corner, until my path and Dad’s converged again. On this new journey, our roles transitioned from Dad and daughter to caregiver and care recipient, and we both found ourselves at a low point in our lives. As we navigated our losses, Dad, directly and indirectly,  Here are five of those lessons that I carry with me today.

1. Boundaries work both ways, and safety and dignity are not mutually exclusive

Dad was relentless in his quest to teach me this lesson, and eventually, I came to agree that certain risks were Dad’s to take, even if it meant we might all participate in the consequences. In my attempt to keep Dad safe, I suppressed his spirit of adventure, the same spirit he had instilled in me.

We were both feeling trapped, resentful, and trying to break free from the chains of our new roles. I had set boundaries to protect my limits, but realized that Dad also had a right to establish boundaries. It wasn’t until I agreed to help him fulfill his desire to jump out of a plane on his 94th birthday that I finally learned this lesson.

2. When I acknowledged that we were both on a journey to a common destination, we could align our itineraries

Despite the fact that Dad had been a caregiver many times over, when I was explaining that I helped other family caregivers, he was confused by the term caregiver. He said, “If you’re the caregiver, what am I? The care victim?” We both laughed until it brought us to tears. I realized that just as caregiving did not come naturally to me, being cared for did not come naturally to Dad. Understanding that the destination of this last journey together was Dad’s end-of-life helped me better align my path with his and focus on making positive memories.

3. Winning is losing when fear and ego lead the conversation, so why not lead with curiosity?

At the beginning of my caregiving journey, the conflicts ranged from minor skirmishes to epic battles. One day I walked in to find Dad on a six-foot ladder trying to Velcro one of his paintings to the ceiling. After I made sure he got safely down the ladder, I asked, “So Dad, why are you putting a painting on the ceiling?” I could see that Dad’s motives were inspired by dignity, independence, and a desire for control and that my motives were most often inspired by protection and fear for Dad’s safety. But in asking that question, I found that when I replaced resistance, fear, and anger with curiosity I could better understand what drove Dad’s decisions.

4. We are where we are supposed to be. The greater the challenge, the greater opportunity for growth

At first, I viewed caregiving as an unwelcome side trip and put a lot of effort into getting back to my original journey. As time went by, I found that paddling against the current was exhausting and keeping me from stepping into the flow of my caregiving journey.

One day it hit me like a bolt of lightning that I hadn’t strayed from my scheduled journey. I realized that being Dad’s caregiver was part of it. When I embraced my place on the path next to Dad, I was able to experience the growth and learning that only a great challenge can offer. Gratitude for the challenge helped me shift from “I have to be a caregiver” to “I get to be a caregiver”.

5. Stay connected to your passions. They are self-care

Dad made oil paintings of landscapes despite the fact that his eyesight was going. I called it his Impressionism phase. He would get lost in paint and canvas, and this activity brought him so much joy.

I would note with amusement, awe, and a touch of jealousy that Dad could be carefree for hours, whereas my mind was always full of worry. But it also taught me that I, too, was allowed to get lost in activities that brought me joy. I also recognized that Dad’s painting sessions were a form of meditation and self-care that helped him thrive into his 99th year.

Dad continued to teach me life lessons during our time as travel partners on the caregiving journey. Adventure in life and living was his dignity. He kept teaching me.

Dad challenged me to be a better caregiver and, in the process, taught me lessons that will serve me well as I continue through life. You can read more about our journey and the strategies that helped us both thrive in, Navigating the Caregiver River: A Journey to Sustainable Caregiving, now available on Amazon.

Thank you and take care of your self as you take care of others.

Theresa Willbanks and her family continue to help other caregivers as they work on setting boundaries and staying close to the people you love and care for.  
We have other articles on the importance of boundaries for health and care support.

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Community

A Love So Deep

“You’re not going to do it all,” she said. Firmly. I was confused. Of COURSE I was going to do it all. I was her lover, her partner, her forever. We were in this together! This was the most important job of my lifetime! How guilty would I feel if someone else took care of her?!? I should have known better than to believe I could change her mind when she was this sure.

Was this a follow-up to her statement a few weeks ago?

“If it gets to be too much, I’m ok with you putting me in a nursing home.” She laid this edict down at a table in our favorite restaurant, before the food came, with other people at the table.

What?!? I would NEVER DO THAT. I told her this would not be happening. No way.

Looking back, I see with a clearer eye what might have led her in this direction. She had a large community of deep relationships, born out of her family’s physical and emotional distance after she came out as a lesbian. But she had family in her friends. Even her exes loved her with a fierceness that dropped my mouth open. I, on the other hand, was an anxious social phobic, leaving the party as soon as the guests arrived; I had done this at many parties of hers!!

Dumbstruck, I simultaneously realized that she had every right to decide how she wanted to live this last time of her life. At diagnosis they had given her 6 months to a year, but she had already outlived that, so we lived in the land of “dying but we don’t know when”.  As she put it, “everyone’s going to be hit by a truck, but I’m so close I can see the dent in the fender.”

A few months later we were out to dinner with a crowd of her friends. The food was delicious, the conversation lively. And I was awkward, uncomfortable. Too big a crowd. Almost couldn’t eat the delicious Italian feast in front of me. Like a lightning bolt, it hit me, “I am not going to be able to do this unless I drop my shyness. Completely. I can’t be who she needs if I resist all these people.”

I looked around at the (small) crowd. We were going to do this together. We were going to help her die.

The next time we talked about the support we would need, she said, “you are the only one who can be my partner, my love. I need you to accept all the help so that you can be that.” It wasn’t an easy thing to embody; I lived on the premise that I proved my love by how much I could overdo it. How much I did for you equated to love. She was asking me NOT to do. I didn’t know how NOT to do. But we planned a support meeting to talk about how, now that we were committed partners, we still needed the vast community to continue supporting her and us. She let everyone know that they should consider anything they did for any of us a support to her. The list of things this community of nearly 100 did for us included (for YEARS):

  • Dinners several times a week
  • Escorts to so many appointments; so, so many
  • Weekly promises of time with our children, even after we added a baby a few years in
  • Research
  • Financial help
  • Organizing all the help so that we had only one person to ask for everything
  • A list of supports way beyond the length of this article

I had never been comfortable being helped. That is the simple truth. And now I lived in a world in which people were doing things for me and my family, on the daily, that were BIG things. Over time, I noticed the way I deflected the help every time; “are you sure, don’t worry if you can’t, did I really need that thing anyway?” It was exhausting. I wish I could tell you that I quickly addressed this problem, but I did not. I had to get really, really, uncomfortable. But finally, I made a deal with myself and committed to it for an experiment for a year: Just say thank you. Nothing more. And say it sincerely!

That last part took a while to gel. The first few months those two words caused my stomach to flip, and it was a struggle to wrest them from my tight lips. My deep aversion to appearing needy meant I had no experience with a simple thank you! But then, what a surprise, it became more and more pleasurable to say thank you. And I meant it more and more. The biggest surprise was that all those people doing all those things for us got happier and happier! As it turned out, it was an even exchange; the gifts they gave were recompensed with gratitude. No debt owing.

By the time she finally died, years later, I could hardly remember that shy awkward person I had been. Our house was full of people that night who helped wash her body, lay her out in her splendid attire, bid the entire community come to say farewell. I had been changed by her, but also by a community of love formed by the human need for family, since so many of our community had been rejected by the families who brought them into this world.

My parents, who had found a way to love me for who I really am, also became a part of this community, contributing their part and at the same time witnessing all of us walking her home. My father, the American Baptist minister who later performed my wedding when I remarried, was the one man who helped anoint her body. After her death, my mother said, “I have been a part of loving church communities my whole life, but I have never seen a community as loving as yours.”

And so, yes, being a member of the LGBTQIA community has its losses, its pains, the oppressions that can be crushing. And, also, great challenge can transform, over time, to something we would never have expected; a love so deep it bores into the earth and carries our feet through anything.