For decades, Dave Bexfield, who's had multiple sclerosis (MS) since 2005, was the designated "bug killer" in his house. When his wife, Laura, spotted a spider or cricket, Dave came to the rescue.
But one day, when Dave was cleaning up a dead spider, he fell -- and landed in the emergency room. The couple quickly realized that Laura, Dave's primary caregiver, needed to take on more household tasks.
Dave and Laura, who live in Albuquerque, NM, now tag-team on home chores. Dave uses a walker or wheelchair, and forearm crutches, so he does sitting-down tasks, while Laura does others.
"He loads the dishwasher and I put the clean dishes away. He folds the laundry and I hang it in the closet."
It's all part of the adjustment that comes with taking a bigger role in your loved one's care. Some simple changes can make the transition go easier.
Tips for the Caregiver
Help with daily living. Expect to take on more everyday tasks. You may need to arrange transportation and run errands for your loved one. Household chores like cleaning, cooking, shopping, laundry, and child care may shift.
Depending on your loved one's MS symptoms, you may have to help with basic care like dressing, feeding, toileting, and bathing.
Make adjustments at home. Helping your loved one to be more independent is good for both of you. You may need to do some research on equipment like a walker or wheelchair.
Take stock of your house. Ramps, wider doorways, and bathroom equipment help him stay safe and make it easier to get around. An occupational or physical therapist can come to your home to suggest specific changes.
Promote a healthy lifestyle. "A lot of people with MS are trying to improve their diet. As a caregiver, you can step in and join them," says Victoria Leavitt, PhD, a neuropsychologist at Columbia University Medical Center in New York.
Leavitt suggests creating habits that bolster your loved one's health, like cooking and eating well, exercising, and getting professional help if you notice mood changes.
Oversee medical care. You may need to keep track of medical appointments, drive to the doctor's office, keep tabs on medication, help with injections, and look out for side effects.
Consider yourself part of the medical team. Learn what you can about MS. Ask the doctor for guidance and tips to use at home.
Expect the unexpected. What you do as a caregiver may change from day to day.
"The biggest thing with MS is the unpredictable course," Leavitt says. One day your loved one may feel fine, and the next he may be exhausted.
"The uncertainty is the biggest challenge," says Steve McMillan, a caregiver in Alexandria, VA.
McMillan's wife, Wendy, has relapsing-remitting MS. At times she seems OK, he says, then suddenly she's in the hospital with complications.
McMillan has learned to go with the flow.
"The key is planning, establishing routines, scheduling -- and having the ability and willingness to be flexible," he says. "Communication with my wife on her needs, prioritizing the must-dos from the like-to-dos, listening to the health care providers, and asking questions that need to be asked are critical."
Get the Help You Need
Many caregivers and experts say the key to doing a good job as a caregiver is to know when to ask for help.
Friends and family. Let them know that you need and welcome their help. Reach out to neighbors or members of your church, synagogue, or mosque. Be specific about how they can help. Make a list of phone numbers and chores they can do.
Respite care. When you need a break, turn to outside care for your loved one, like adult day care or overnight care at a nursing home or other facility. Some organizations have volunteers who give companionship and support.
In-home help. Consider hiring a home health aide. McMillan has a registered nurse come during the week so he can work and take a break. The nurse helps manage Wendy's prescriptions, talks to the doctor's office, and helps with specialized wound care.
You can find respite care by talking to other caregivers or your health care team. Also check the websites of the National MS Society or ARCH National Respite Network and Resource Center. For an in-home aide, try the National Association for Home Care and Hospice.
Also make sure you take breaks from the routine. McMillan has lunch with a group of other caregivers every month, which he says is like taking a long, deep breath.
"We're all in the same boat and truly understand each other's concerns," he says. Sometimes they share advice on care, taxes, or health policy issues. Other times, they simply talk movies and sports.
Leavitt says support groups can be a big help. You'll get the emotional backing you need and a fresh perspective.
For online or in-person groups, check the websites of:
- Caregiver Action Network
- National MS Society
- Well Spouse Association
When you're a caregiver, expect changes. You may become an expert on MS medications -- or the household bug killer. The trick, many say, is to be flexible and roll with whatever your new role may bring.