In a powerful conversation hosted by Dr. Dona Murphey of PrognosUs, three women caregivers revealed both the profound challenges and unexpected joys of caring for loved ones with dementia, demonstrating how community and faith can transform one of life’s most demanding journeys.
The discussion, framed by June Jordan’s words “we are the ones we’ve been waiting for,” highlighted how caregivers often navigate this difficult path with limited support, leading them to build their own networks of care and resistance.
Yolanda Robertson has been caring for her 85-year-old mother for nine years, since a stroke triggered her mother’s dementia. “Every day is a different day,” Robertson explained, describing the unpredictable nature of the disease. Despite having siblings, she found herself as the primary caregiver – a common situation many solo caregivers face. She recalls the moment everything changed: “I was on my way to work. She called saying she felt sick and wanted to go to the hospital after I got off work. I turned around and said, ‘Nope, you’re going now.’ That’s when she had her stroke.”
For Chastity Holman, caregiving emerged from a lifetime of connection with her mother. “My mom and I have always done things for each other,” Holman shared, describing their shared love of “Saturday Night Live” and special bond. Her role intensified when her mother fell and broke her hip in February, leading to full-time caregiving responsibilities. Despite the challenges, Holman continues their traditions of enjoying life’s pleasures together, recently taking her mother to see “Wicked” complete with green face paint and a witch costume.
Kim Booker’s story reveals the healing power of caregiving itself. She returned home to care for her grandmother, who had previously rejected her due to colorism. “She was the mean grandmother,” Booker candidly shared. Yet through caregiving, their relationship transformed. “She would call me beautiful. That’s all I ever wanted as a little girl, just that acceptance and that love,” Booker reflected, adding with poignant humor, “I said, Lord, she had to lose her mind to give it to me, but I’ll take it.” After her grandmother’s passing on New Year’s Day this year, Booker found herself caring for her 85-year-old aunt, embarking on a second caregiving journey.
The financial burden of dementia care averages $300,000 per person, but the emotional and physical costs are immeasurable. These women have created vital support systems through family members who provide occasional relief and communities like PrognosUs, which offers weekly meetings for caregivers nationwide.
Finding support often requires persistence and creativity. Holman has built a network including her uncle, who helps with companionship, and a pet sitter who provides respite care. “I have to remind myself that I’m not alone,” she reflected. “Even though it doesn’t look like I would like for it to look, I do have help.”
Robertson receives support from her sister, who visits on Sundays, bringing laughter and relief. “She’s always been the funny one in the family,” Robertson shared. “Carol Burnett has nothing on her. My mom laughs a lot when she comes around.”
Self-care emerged as a crucial theme. Robertson emphasized staying calm and maintaining perspective: “If it’s out of my control, I can’t let that bother me. I just have to deal with it and flow with it.” She gives herself daily affirmations and finds peace in quiet moments, often retreating to her room to listen to jazz or gospel music.
Holman has found joy in creating memorable experiences with her mother, from attending candlelight concerts to exploring theatrical performances. “A friend texted and said, ‘You create these memorable moments for your mom.’ I never thought of it that way,” she reflected. “I thought we’re just living our life.” She emphasizes the importance of “slowing down your mind” and not feeling guilty about taking necessary breaks.
For Booker, who is currently caring for her aunt while managing COVID-19 in their household, faith provides essential strength. “I know I can’t do it alone, and I’m never alone because the Holy Spirit is within me,” she shared. She cherishes the lucid moments with her aunt, often recording their conversations to preserve memories, much as she did with her grandmother.
The caregivers also discussed practical strategies for maintaining balance. Holman stresses the importance of proper nutrition and taking supplements, noting how self-care directly impacts her ability to provide care. Robertson finds respite in watching sports undisturbed, while Booker turns to prayer and community support through PrognosUs.
“You definitely got to keep God in the mix because it’s something you can’t handle by yourself,” Robertson advised fellow caregivers. “He never gives you anything that you can’t handle.” She noted that while caregiving might be “the toughest job ever,” those who do it are “almost chosen.”
Through their stories, these women demonstrate that while caring for someone with dementia can be isolating, community and connection provide essential lifelines. Their experiences suggest that the support we’re waiting for isn’t coming from traditional institutions but from each other – making Jordan’s words ring particularly true for this community of caregivers who have indeed become the ones they’ve been waiting for.
These weekly conversations through PrognosUs offer a glimpse into the real experiences of dementia caregivers, creating a space where stories can be shared, tears can be shed, and laughter can heal. As Dr. Murphey noted, research shows that diverse groups solving problems together often outperform individual experts – a finding that underlines the power of caregiver communities like PrognosUs.
To learn more about joining this supportive community of caregivers, visit PrognosUs.com, where weekly meetings provide connection and mutual support for those on this challenging but meaningful journey.
