From the Archives: Spring 2005 Lupus Now magazine
Take Good Care: Lupus affects entire families, changing the lives of those with the disease and the people who care for them
by Mary Medland
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 each year.
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 to 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, the value has been estimated to be $257 billion a year, according to the National Family Caregivers Association.
Although the value of caregivers cannot be disputed, it also takes a toll on those who take on the role. Caregivers can experience emotional stress, physical strain, and financial hardships as they try to balance their roles as caregivers with their other personal 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 Women’s National Basketball Association’s Houston Comets. "I drove my mother to her chemotherapy appointments and took her to dialysis and 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.
Even the strongest and most determined adult can become overwhelmed by the responsibilities of taking care of someone with a chronic disease.
So it is of primary importance for caregivers to take care of their own health as lovingly as they do for their family member.
LeAnn Thieman, co-author of Chicken Soup for the Caregiver’s Soul, advises a physical, mental, and spiritual balance. That translates into paying attention to your diet, taking time out to get some exercise, and setting aside a few minutes every day for quiet and reflection.
"We pay so much attention to the person we are caring for we forget to take care of ourselves," says Thieman. "Often caregivers feel alone and unappreciated. They have to understand that caring for themselves is as important as providing care for others."
Learn as You Care
One of the best tips for caregivers is to learn as much about the disease as they can. "You might think that you do not want to know, but if you are educated, you’ll find a way to deal with things," says Suzanne Mintz, president and co-founder of the National Family Caregivers Association.
Mintz, whose husband has multiple sclerosis, has four principles for family caregivers:
- Choose to take charge of your life.
- Love, honor, and value yourself.
- Seek, accept and, at times, demand help.
- Be an activist for the disease.
Mintz echoes Thieman and Forte on the importance of looking at the situation from the "glass-is-half-full" viewpoint.
"We really can choose our attitude," she says. "By focusing on the bright side, whether that be the great research on the horizon or a wonderful doctor, caregivers will find an inner strength that they weren’t aware of."
Mintz’s second principle is to take care of yourself, both physically and mentally: get the massage or arrange for lunch and a movie with a friend. Caregivers have a right to do things for themselves and if they don’t take care of themselves, they’ll end up becoming bitter. Being a martyr is not going to benefit anyone, Mintz points out.
Mintz also advises caregivers to bear in mind that they can’t do it all. “People don’t realize that there has never been a phenomenon like this,” she says. “In 1900 the average life expectancy was 47 years. It used to be that people died from infections or diseases in a short period of time,” whereas today they can live for years with Alzheimer’s disease or heart disease, so the role of caregiver can be significantly longer than just a couple of months. As a result, the demands on long-term caregivers may be significantly greater than in the past and the toll this can take on their own careers, health, and well-being can be significant.
It’s normal for the strains of caregiving to cause feelings of being overwhelmed, depressed, or discouraged. Considering this, it’s crucial for caregivers to build a support system -- whether it consists of paid services, help from friends and neighbors, or members of one’s church or synagogue.
John Forte, whose wife, Carole, was diagnosed with lupus nine years ago, recommends seeking professional help if the feelings become too much to handle. "Virtually all the caregivers I know have sought mental health counseling for exhaustion or depression or because they are getting older and not able to do as much physically as they once were," he says.
Judith Sheagren, D.S.W., a psychotherapist and psychoanalyst in Baltimore, confirms Forte’s point of view.
"I see people all the time who are struggling with their guilt about taking any time for themselves and who feel badly because they are not devoting every minute to a family member who is less fortunate," Sheagren says. "When caregivers feel that they are losing touch with their own lives, it really can be beneficial to sit down with a mental health professional and see what limits need to be set to reclaim one’s life. It’s important not to give so much of yourself that there is nothing left for you."
Support groups are also a rich source of help. "The benefit of a support group is knowledge and having the chance to share information with others," continues Forte. "These are people who understand what you are going through with doctors and medications and struggling through our very complex medical system."
Not surprisingly, Forte has heard more than once: "I can find everything I need on the Internet, so why should I bother attending a support group?" One powerful reason, Forte points out, "is that the computer is not going to reach out and give anyone a hug, a pat on the back, or a shoulder to cry on."
Of course, even caregivers who themselves have a good support system in place need to be realistic and acknowledge that it is normal to become discouraged. "I get discouraged all the time," says Tomiko Fraser. "I question why I am the one in my family who was ‘chosen’ to take care of my sister. Still, while taking care of her and being her legal guardian has been an undertaking, I wouldn’t have it any other way. I’d advise other caregivers to try to be strong and have a lot of patience, as well as a heart full of love. I’m trying to keep Shneequa’s quality of life as pleasant as possible -- what keeps me going is my love for her."
The Advocate’s Role
Finally, Mintz recommends that caregivers must become both activists and advocates. Advocates seek answers to questions, especially when it comes to navigating the health care system, while activists work to make sure that elected officials understand what is expected of them.
Tomiko knows about lupus advocacy firsthand and works tirelessly to raise awareness of the disease.
"Since I am a spokesperson for the LFA, I make appearances on their behalf, whether that means speaking before Congress or at special events," she says. "When I’m being interviewed because of my acting or my modeling, I always try to work into the interview what the LFA does, what lupus is, and what my role as a spokesperson includes.
"In spite of the difficulties involved in taking care of my sister, what I do for her is nevertheless very important and is very rewarding for me." It is a sentiment with which many caregivers would wholeheartedly agree.