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Caregiver Spotlight

Dawnita Brown is the founder of Hey Caregiver!™, a lifestyle brand that encourages caregivers to live a life of “selfullness”, the founder of The Benti Circle, a support group for black daughters who are caregivers to their mothers, the founder of Selfull Caregiver Podcast, a place where you can hear relatable stories, tips and strategies for caregiving, and she is also a caregiver to her mother as well.

The Interview

In 2016, I took a leap of faith and served as a mid-career Peace Corps Community Health Volunteer in Eswatini, immersing myself into a new culture and expanding my global perspective. While serving in the Peace Corps, I was recognized by the US Embassy Swaziland for my outstanding program development of SwaziGirlsBELIEVE and Black Girls Global Exchange (BGGE), a global ambassador program for girls which uniquely cultivates leadership through artistic activism and service in a way that promotes an equitable exchange of ideas addressing social issues between girls in the US and Africa.

In 2018, while I was on that divine assignment living my dream life, God abruptly shifted my purpose. On August 5th, a phone call changed the trajectory of my life immensely. I learned that my mother was on life support and needed to have a brain craniotomy immediately or else she would die. I lost it completely. I was 8,275 miles away. I gave the neurosurgeon the go-ahead to do the brain surgery and the next day I was on a flight home to Baltimore, just praying that she would live long enough for me to say goodbye. Well, God had other plans for her and for me, and after landing on US soil on August 7, 2018, I became a caregiver in every sense of the word. 

Sudden caregiving on this level was something that I was not prepared for. And, there were not many resources that I could fully relate to as a black woman. Along with being in the throes of caregiving, I was still adjusting to life in the states. I was on leave without pay status from the federal government and had until May 2019 to return. After considering all factors, I officially resigned on April 27, 2019. Going back to the workplace, even with the flexibility, autonomy and a six-figure salary, did not trump the FREEDOM to care for my fully dependent mom.  

Research shows that Black caregivers need more opportunities for caregiver training and access to culturally competent supportive services, hence the creation of Hey Caregiver!™, a culturally competent lifestyle brand that educates, equips, and encourages family caregivers to live a life of “selfullness” during their caregiving journey. The sweet spot between selfish and selfless. 

Now here we are in 2022, and in addition to being a sole full-time caregiver to my mother, whose recovery has been nothing short of a miracle, I am an advocate for family caregivers; a Certified Caregiving Consultant, Educator and Facilitator™; a community builder; and a business owner. 

With the deficit in the market as it relates to culturally competent services and resources for black family caregivers, Hey Caregiver!™ is a part of the solution and directly address their needs by:

  • Curating empowering, inspiring and self-care merchandise for family caregivers and carees to purchase from our online retail shop
  • Hosting “The Binti Circle”, a monthly support group for black daughters caring for their Mothers
  • Educating family caregivers through a bi-weekly podcast
  • Providing customized coaching, consulting and workshops to help caregivers through the caregiving journey and after.

What do you know now, that you wish you knew then?

I wish I knew to take care of myself at the onset. When I came home I was extremely selfless…which is reckless. As I mentioned, I was still readjusting to life in the states and didn’t take any time for myself. It was all about my mother. Sitting in the hospital day in and day out, not exercising, eating unhealthy cafeteria food or takeout, drinking too much wine, not getting enough rest, the list goes on and on.  I gained weight, felt terrible and was irritable. Due to the nature of caregiving, caregivers are often selfless, giving of themselves to their caree that it leads to lack of self-care. Moreover, caregivers view self-care as selfish and as a result, feel a sense of guilt, if and when, they do take time for themselves. Lack of self-care of the caregiver results in lack of care for the caree, which is not sustainable for either and can often lead to death. I was in that number.  

How different are you today compared to when you first became a caregiver? 

Initially, I was overwhelmed, frustrated, angry, sad, and at times I felt clueless and hopeless. My mother is totally dependent and requires 24/7 care. I had to learn how to do all of the ADL’s, tube feeding, and keep her from getting bedsores. I was extremely nervous that I would mess up and not have the wherewithal to care for her properly. But, by the grace of God, I have mastered her needs. However, I don’t run to her every beck and call like I used to. As long as I know she’s alright I’ve learned to ignore the call. Before, I wasn’t able to do that.  

While I still experience some of the aforementioned emotions at times, they no longer consume me. I have turned my pain into purpose and my mess into my ministry. When I am able to help someone it brings me joy. There is a sense of empowerment when we truly acknowledge and accept the privilege to care with honor and delight…not disappointment and duty. Today I am selfull, intentional and unapologetic about creating a life I love within and outside of caregiving. 

As a caregiver, what resources would you like to have available?

More support for middle-class carees and their caregiver. I have learned so much on this journey and one thing that I have witnessed, and have learned from others, is that middle-class people (folks that have worked all of their lives, have assets, but do not have access to 10s of thousands of dollars/disposable income) find themselves depleting ALL of what they have to get adequate health care, equipment, activities, etc. or going without. Medicaid has programs in place for their beneficiaries and many state programs are set up to pay family caregivers. Unfortunately, those in the middle pay for their services mostly out of pocket.  As a result, I’d like to help bridge that gap by providing volunteer health care providers (GNA/CNAs, Massage Therapist, etc.), durable equipment, food services, etc. for those who are in that position. Those that make too much to qualify for Medicaid, but not enough to write a check for a $5,000 Barton Chair or pay an agency $25-45/hr for around-the-clock care.

What do you do for self-care?

Pray, workout, meditate, garden/garden shows, enjoy my deck, breathe, travel, massage therapy, go to live shows, respite, hang out with friends and family, therapy, listen to music and audiobooks, aromatherapy, journal, watch game shows with Mama, laugh, hike, nothing, take naps, I also enjoy bubble baths in the tub (although I don’t get to take them that often) and I’m learning how to play the bass guitar. 

Can you tell us about Selfull Caregiver Podcast?

Of the “Top 30 Black Women Podcasts You Must Follow in 2021” there is not one geared toward caregivers. Moreover, of the “Top 50 Caregiver Podcasts You Must Follow in 2021” there are only two hosted by Black women. 

With that in mind, I wanted to create a platform where Black family caregivers could hear and share real, transparent, no sugar-coated dialogue discussing the good, the not so good and the really bad aspects of caregiving.

The Selfull Caregiver Podcast includes many of the same themes that you see in my brand, like positivity, connecting with other caregivers, and cultivating a safe space where Black family caregivers feel nurtured, protected, and understood. Listeners get to hear relatable stories, learn tips strategies, and obtain resources from former/fellow caregivers, carees, and caregiving professionals.  

My first episode for season 1 was a deep dive into my caregiving journey and my last episode of the season was with my mother. After her brainstem stroke, the neurosurgeon said that she wouldn’t be able to do much of anything and that with a brainstem stroke most patients are “locked-in”. Therefore, her baseline was better than most.

Three years later, post rehabs, hospitals, and hospice, she’s still here and living life out-loud and not “locked-in”. While she’s immobile her brain isn’t. She described our episode as traveling through this caregiving journey with humor. This was major because she didn’t laugh for months. It was a really fun episode and I am looking forward to doing more with her in the future. 

What can you tell us about Binti Circle?

In May of 2021, I became a Certified Caregiving Consultant™ to coach fellow and former family caregivers, Certified Caregiving Facilitator™ to lead caregiving support groups, and Certified Caregiving Educator™ to deliver workshops to help caregivers through the caregiving journey and after through the Caregiving Years Academy founded by Denise Brown. One of the assignments from the program was to invite a POC, LGBTQ, or person with differences inability to join my podcast, FB Live or Zoom meeting. I had the idea to create a panel of Black women that I knew who were caring for their moms which fulfilled two requirements: a POC and a Zoom meeting. I began to brainstorm a name and logo.  

I settled on The Binti Circle. Binti means daughter in Swahili and circle signifies unity, community, love, and commitment. The logo, Adinkra symbol Odo Nyera Fie Kwan symbolizes the proverb, ‘those led by love will never lose their way,’ sometimes written as ‘love never loses its way home’, which is the essence of the Binti Circle. 

And just like that, the Binti Circle support group was born.

When we unite, we create strong communities. The Binti Circle – made up of 19 women ages 30-65 in various stages in their lives and caregiving journeys – represents a collective of black daughterhood and sisterhood. With this multigenerational model, everyone is able to receive support on some level. Our meetings are held every 4th Friday of the month and are known as “Feel Good Fridays”. Our circles are a fusion of free-style dialogue, interactive sessions, and creative workshops featuring Black wellness experts. We also randomly select a Binti Sisi (sisters in siSwati) to receive a self-care gift each month. 

Research shows that support groups provide non-judgmental emotional support, help caregivers reduce depression, stress, anxiety, social isolation, improve quality of life and give them a sense of control over their caregiving lives. Through “The Binti Circle” we are shifting the narrative. 

I am proud to say that we celebrated our 1-year anniversary last month and we’re still going strong. We now have a fiscal sponsor and are currently planning a weekend retreat for National Family Caregivers Month in November.  I have big dreams for The Binti Circle and I can’t wait to see how they all unfold.  “With God, all things are possible.” Matthew 19:26 

What else would you like to share with fellow caregivers?

While caregiving is a truly rewarding labor of love, it is also emotionally, mentally, spiritually and physically taxing. Caregiving is a public health priority and the health of caregivers is at risk. According to CDC, the vast majority of caregivers report experiencing stress, depression, and emotional problems at least twice a month. Shockingly, nearly 15% report experiencing these conditions at least 14 days a month. 

Don’t be a statistic. Take care of you so you can better take care of your caree. Be selfull…the sweet spot between selfish and selfless.

Where can people learn more about Selfull Caregiver Podcast, Binti Cirlce and you? 

Conclusion

Dawnita’s story is a great reminder that most family caregivers stumble into this role suddenly and unexpectedly. And we love how she admitted that at the beginning of her journey she lacked self-care for herself (because that is a pretty common thing to do.) 

Self-care as a caregiver is extremely important. Just like having resources and a community of people who can relate with what you are going through are too. If you are a family caregiver, click here to find your local CRC to connect with resources today! If you are on Facebook and would like to join our Facebook group to connect with family caregivers, click here.

Self-care when it comes to my home environment and in my happy place…the woods. I make sure that my mom’s equipment and supplies are out of sight. It helps with my sanity and her dignity.

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