Caring for the Multiple Sclerosis Caregiver
Meg Lane received a diagnosis of relapsing-remitting MS in 1992, at age 31. By 2013, she was mostly using a wheelchair and no longer working; that year, she experienced an exacerbation due to de–hydration that landed her in the emergency room. At that point, she went to live part-time with her sister, Pat Volin, in Sparta, New Jersey. Although Meg lives with her husband in Nanuet, New York, when possible, his job limits the amount of time he is able to spend at home.
“I brought her to my house so I could give her the care she needed,” says Volin, 63. “Since I’m a freelancer, I am able to be around to provide adequate hydration, take her to doctor appointments, and get her out to a movie when she feels up to it.”
It’s a challenge for everyone—family, partners, friends—when a loved one has a chronic illness. While it can be rewarding to be a caregiver, it can also be physically and emotionally exhausting. These tips from the National MS Society (NMSS) and from Volin may help you better handle the pressures:
• Be flexible Realize that fatigue, weakness, and pain can overtake a person with MS at any time. Plans may be canceled at a moment’s notice. Volin suggests having backup activities that take little energy, like playing games on a tablet or watching shows on streaming services, to pass the time while the person gets through fatigue or an exacerbation.
• Allow extra time Moving is difficult for many people with multiple sclerosis, and a rushed schedule will add stress. Make sure to leave plenty of time to get to engagements.
• Enjoy each other Whether you are the care recipient or the caregiver, it’s normal to experience guilt, resentment, and anger toward the other person. But it’s important to have happy moments as well. “We are companions to each other,” Volin says. “Meg is the funniest person I have ever known. Humor is probably her greatest tool for dealing with her disabilities.”
• Talk to others Caregiver support groups can help you keep going when things are tough, and they allow you a place to vent. If there are no groups nearby, talk to a friend or seek help from a therapist.
• Accept help Feeling over–whelmed? This might be the time to call on those friends who have said, “If there’s anything I can do. . . .” Let them fill in for you, and go out for a meal, take a nap, or otherwise attend to your own needs.
• Keep up with your own health Do your best to eat well, be physically active, and stay current with medical appointments and medications. Talk to your doctor if you aren’t getting enough rest or sleep.
• Modify your home to be safe and accessible Consider having an occupational therapist or a physical therapist make a home visit and recommend measures—such as ramps, widened doorways, or kitchen or bath renovations—to keep the person with MS as independent as possible, as well as reduce the physical strain on you. The NMSS (see nationalmssociety.org) can suggest practical, low-cost modifications and provide referrals to home remodelers and architects. Adaptive devices can help, too. “My sister’s favorite tool is a walker with a basket, which enables her to carry things like her cell phone whenever she’s up and around,” Volin says.
• Accept that you can’t fix everything It’s important to remember that there are some decisions only the patient can make.