Treatment and care for multiple sclerosis (MS) doesn’t end when you walk out of your doctor’s office. While you should have a great healthcare team, it’s just as 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 both for the people who have MS and for their caregivers. A group of people who can come together to face a challenge is stronger and better than one person working alone.
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 also be stressful and overwhelming at times. Balancing daily personal responsibilities with caring for a loved one can be difficult.
You can reach out for support from your wider network and your doctor to help relieve stress. If necessary, your doctor can help reevaluate treatment approaches. They can also offer new insight on the caregiving relationship.
Use your resources
Many resources are available for 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. The National Multiple Sclerosis Society is a useful resource. It can connect you with local programs and services that can help you and your caregivers.
Several organizations provide assistance and care to caregivers. These support groups provide educational seminars, enrichment resources, and connections to other people 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 people with chronic conditions.
- Caregiver Action Network (CAN): CAN supports caregivers and patients through education and mentorship. They also connect caregivers with organizations that may provide assistance.
- Leeza’s Care Connection: Leeza’s Care Connection offers caregiver support programs, social activities, and other resources. These help caregivers be more aware of how the disease progresses and how best to handle changes.
- Family Caregiver Alliance (FCA): The FCA hosts webinars and classes. It also provides fact sheets and other resources for caregivers. It 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 you and a caregiver requires communication and understanding. Sometimes, a caregiver needs to attend to a personal issue of their own. Other times, you may want to have a friend or family member come stay with you for the day. Keep a list of people you can call on for certain tasks when you need some more help.
Some friends or family members may be more comfortable helping with errands, providing dinners, or driving kids. Keep a list of errands, appointments, or other services that friends can do to help you or your primary caregiver.
Encourage caregiver self-care
Many caregivers neglect their own health when they’re helping a loved one with MS. They might feel guilty, angry, or alone. Your needs and desires should not supersede a caregiver’s needs. It’s important that caregivers eat a balanced diet and get enough regular exercise and sleep. Encourage your caregivers to take good care of themselves. You’ll both benefit in the end.
Building a strong, healthy network of people who support you through ups and downs is important. Reach out to doctors, friends, family, and local and online resources to help make your life with MS easier.