Written by Michael Harkin | Published on August 6, 2014
Medically Reviewed by George Krucik, MD, MBA on August 6, 2013
Treatment and care for multiple sclerosis (MS) doesn’t end when you walk out of your doctor’s office. It is certainly important to have a great healthcare team. However, it’s equally important to have support from family, friends, and others who can help you deal with the challenges of MS.
MS is unpredictable. Each week brings new ups and downs for both patients and their caregivers. A group of people who can come together to face a challenge is stronger and better than a single person alone.
Help Your Caregiver Assess the Situation
Caring for someone with MS can bring people closer together. Partners, family members, and friends can face the disease’s challenges as a team. However, providing emotional and physical care for someone can be stressful and even overwhelming. Balancing daily personal responsibilities with caring for a loved one can be difficult. Many caregivers might feel guilty, angry, and alone.
You and your caregiver do not have to face this disease alone. Support from your wider network and your doctor can help relieve stress. Your doctor can help reevaluate treatment approaches if necessary. They can also offer new perspectives on the caregiving relationship.
Reach Out for Support
Many resources are available to people with MS and their support networks. Managing the symptoms and progression of MS will be easier if you and your support network learn as much as you can about your condition. The National MS Society is a very useful resource for this purpose. They can connect you with local programs and services that can help you and your caregivers.
Several organizations provide assistance and care specifically to caregivers. These support groups provide educational seminars, enrichment resources, and connections to other individuals who are in similar situations. These national organizations include:
•National Alliance for Caregiving (NAC): The NAC provides booklets, tip sheets, webcasts, and other useful media that can help caregivers treating patients with chronic conditions.
•Caregiver Action Network (CAN): CAN supports caregivers and patients through education and mentorship. They also connect caregivers with organizations that may be able to provide help or assistance.
•Leeza’s Care Connection: Leeza’s Care Connection offers caregiver support programs, social activities, and other resources to help caregivers be more aware of how disease progresses and how best to handle changes.
•Family Caregiver Alliance (FCA): The FCA hosts webinars and classes, and also provides fact sheets and other resources for caregivers. FCA also offers a state-by-state listing of resources to help you find help in your area.
•Rosalynn Carter Institute for Caregiving (RCI): The RCI provides caregivers with educational programs and publications that promote caregiver health, skills, and resilience.
Keep a List
A successful partnership between patient and caregiver requires communication and understanding. Sometimes a caregiver needs to attend to a personal issue. Other times, you may want to have a friend or other family member come stay with you for the day. Keep a list of people you can call on occasionally when you need additional help.
Some friends or family members may be more comfortable helping with errands, providing dinners, or helping transport kids. Keep a list of errands, appointments, or other services that friends can do to help you or your primary caregiver.
The Caregiver Needs Care, Too
Many caregivers neglect their own health when they’re helping a loved one with MS. The needs and desires of the patient should not supersede a caregiver’s needs. It’s important to get regular exercise, eat a balanced diet, and get adequate sleep. Encourage your caregivers to properly take care of themselves. You’ll both benefit in the end.