Lupus Caregivers

Tomiko Fraser and her younger sister, Shneequa, can still communicate, although it is often a struggle. Shneequa, who was diagnosed with lupus seven years ago, has suffered brain damage and can't always come up with the right words.

"My sister has a special language that she uses,” says Tomiko. “For instance, for some reason she refers to the color ‘black’ as the number ’10’ and ‘green’ is the number ‘4.’"

Understanding the code words, combined with hand gestures makes it possible for the sisters to stay close and share each other’s thoughts and feelings.

As a model for Maybelline, an actress, and a spokesperson for the Lupus Foundation of America, Tomiko is surrounded by the glamour that accompanies today’s top models. But, as Shneequa’s guardian and primary caregiver, Tomiko often has to make the glamorous life less of a priority.

For many years, her sister lived in a nursing home on Long Island, New York, and Tomiko, who lives in Los Angeles, was only able to see her about once every month. That all changed last year.

"I became [my sister’s] guardian in December 2003 and finally moved her to a facility in Los Angeles where she has wonderful medical care," says Tomiko. "Now I'm able to see her at least three or four times every week."

Tomiko is just one of millions who each year take on the role of caring for an adult family member or friend who is ill or disabled. It is estimated that more than 50 million people in this country become caregivers.

Shouldering Responsibility

Taking care of a loved one can include a range of activities, from mundane to demanding, from driving the person to a doctor’s appointment or helping with bathing, feeding, and dressing. Also, the task of managing a loved one’s financial and legal matters may fall on the shoulders of the caregiver. Caregiving can be very much like a full-time job—but one that does not come with a paycheck. While the care provided by caregivers is unpaid, at the value has been estimated to be $257 billion a year, according to the National Family Caregivers Association.

Although the value of caregivers can never be disputed, the role often takes an incredible toll on those who take it on. Caregivers can experience emotional stress, physical strain, and financial hardships as they try to balance their roles as caregivers with their other obligations. And often, striking that balance is a heavy task.

Suddenly becoming a caregiver can be hard for anyone. But imagine the difficulty of becoming a primary caregiver at the age of 14 for a mother who has just been diagnosed with lupus.

That’s precisely what happened a decade ago to Michelle Snow. The oldest of five children, Snow found herself taking on the responsibility for cooking and cleaning and getting her mother to her medical appointments.

“I was driving before I even had a license,” says Snow, who today plays for the Houston Comets, a Women’s National Basketball Association team. “I drove my mother to her chemotherapy appointments and took her to dialysis and for other medical appointments.”

Much of the responsibility fell on Snow’s shoulders because, as she puts it, “My father worked from sunup to sundown.”

It was a huge challenge, says Snow, whose mother passed away in the spring of 2004 “We’re not taught how to deal with caregiving, and some children do lose their childhood,” she says.