An untold number of Virgin Islanders are struggling to fill the role of family caregiver. It’s a role they never trained for, may not understand, and sometimes took on suddenly. Local advocates for the territory’s elders and disabled say they also suffer from a lack of available resources.
Experts say that among an estimated 53 million unpaid American caregivers, about 17 million do so under similar circumstances. Most often the scenario involves one family caregiver attending to the needs of one disabled relative.
And as the population ages, a growing number are disabled. The Centers for Disease Control and Prevention estimates that 61 percent of all Americans live with some type of disability. About 40 percent of those age 65 or older have problems with vision, hearing, mobility, memory, or being able to care for themselves.
In the case of one St. Croix resident, there were three. Pamela Toussaint told her story during a panel discussion held on St. Thomas in March. Toussaint said she took charge of caring for both of her aging parents and a younger sister living with a disability.
Much of that care involved travel, since her sister needed care that was not available at home in the V.I. The family arranged trips to see her, but when the COVID-19 pandemic struck, the trip was sometimes made in vain.
“Financially, it was very expensive — traveling between St. Thomas, St. Croix, St. Thomas and Jacksonville (Florida). There was a time when we couldn’t see my sister,” Toussaint said.
Eventually, the sister’s health improved and she was allowed to come home. Her caregiver took on the task of widening the doorways of the house to accommodate a wheelchair. Toussaint said she had to learn how to use and maintain medical devices her sister relied on.
By then, she said the health of her parents began to decline. Her father began showing signs of dementia, and her mother developed a heart ailment.
“Emotionally, it was very hard, because I felt like I was the only one making the decisions,” she said.
Toussaint shared her story as a discussion moderator with an audience attending a Women Striving for Success conference held in March.
Telecommunications executive Jennifer Matarangas-King described her life as a duality; a high-profile professional by day, a devoted daughter with an elderly, disabled parent at home.
As others on the panel and in the audience told their stories, she said, one thing became apparent: they were not alone. “I think the women’s conference overall was amazing. I think in many cases the women on the panel … are known to the public for aspects of their careers, but they also have a side of their lives that can be challenging.
“You are caring for someone else, and when you’re caring for seniors, they’re not children. They’re adults who have lived very full lives. And it can be very emotional,” Matarangas-King said.
In a separate interview, a few weeks later, Human Services Commissioner Kimberly Causey-Gomez described how growing up with an ailing grandmother shaped her views.
“Growing up, I personally was able to see the emotional and physical effects of caregiving every day on my parents, as my maternal grandmother lived with us. We converted our dining room into her bedroom on the first floor of our home. She needed 24/7 care as she was paralyzed on her left side from a stroke and needed oxygen to breathe. Although I loved having my grandmother so close, as she was my companion and we enjoyed puzzles, card games and reading, I could see that the daily care took a toll on my parents,” Causey-Gomez said.
If the U.S. Virgin Islands were compared to a mid-sized U.S. city with a similar population and a middle-to-upper-middle-class economy, there would be options that aren’t available here, said AARP State Director Troy de Chabert-Schuster. In those mid-sized cities there would most likely be a certified nursing home, at least one in-patient hospice facility, an assisted living community, and “a really great community hospital,” Schuster said.
When the time came for his aging parent to live with help from others, Schuster said it was time to move into an assisted living community in Florida. As the head of a family with means, the move gave his parent the quality of life he was accustomed to. But, he said, at a cost.
“Why do Virgin Islanders have to leave the Virgin Islands to move to Florida and some of the other Southern states to live?” he said.
The state director said he’s especially concerned about those Virgin Islanders, facing the same situation without resources and with few options.
See Part 1 here.