Treatment and care for multiple sclerosis (MS) doesn’t end when you walk out of your doctor’s office. While having a great team of doctors, nurses, and other healthcare provides is important, it’s equally important to have network of support from friends, family, mentors, neighbors, and people who can help you understand and deal with the symptoms, setbacks, and progression of MS.
Change is Constant
MS is unpredictable. Each week brings new ups and down, new challenges and victories, and new questions and concerns for people living with and helping people who are living with MS. 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
Being cared for and caring for someone with MS can be deeply satisfying—it’s a chance for partners, family members, and friends to be drawn together as they face the challenges of the disease head-on. However, providing emotional and physical care for someone can become stressful and, at times, overwhelming. Balancing one’s own personal life and responsibilities with the care and concern of an ailing loved one can be difficult. Many caregivers will face periods of feeling guilty, angry, and alone.
You and your caregiver do not have to face this disease alone. Support from other family or professionals can help relieve stress, reevaluate approaches to treatment, and offer new perspectives on the caregiving relationship.
Reach Out for Support
Many resources are available to people with MS and the family members and support networks who are helping them. Managing the symptoms and progression of MS will be easier if you and your support network learn as much as you can about the progression and treatment of MS. The National MS Society is a very useful tool for this and can connect you with local chapters that may be able to meet with you and your family to talk about life with MS.
Being a caregiver for a person with MS, or any disease, can be rewarding—but it can also be overwhelming. Several organizations provide assistance and care to caregivers specifically. These caregiver support groups provide education seminars, enrichment resources, and connections to other individuals who are in similar situations to provide you with the best support for your current situation.
These national organizations include:
The National Family Caregivers Association
The NFCA supports caregivers and patients through education and mentorship. They also connect caregivers with organizations that may be able to provide help or assistance. The NFCA can be found at http://www.nfcacares.org/.
Leeza’s Place offers educational programs, social activities, emotional support, and presentation and workshops that are designed to make caregivers more aware of a disease’s progress and how best to handle any changes. Visit Leeza’s place at http://www.leezasplace.org/.
The Family Caregiver Alliance
The FCA hosts regular webinars (virtual workshops) and classes where caregivers can learn about dealing with the frustrations and challenges of caring for a loved one. FCA also offers a state-by-state listing of resources, so you can find help in your area. Visit the FCA at http://www.caregiver.org/.
Rosalyn Carter Institute for Caregiving
The RCI provides caregivers with educational programs and publications that promote caregiver health, skills, and resilience. The RCI can be found at http://rci.gsw.edu/.
Keep a List
A successful partnership between a 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. Many family members, friends, and members of your support team will be happy to help. 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 friends can do to help you or your primary caregiver.
The Caregiver Needs Care, Too
As the physical demands of caring for an ailing person increase, many caregivers neglect their own health. The needs and desires of the patient supersedes the needs of a caregiver’s health, such as getting regular exercise, eating a balanced diet and getting adequate sleep. Encourage your caregiver to care for him or herself, too. You’ll both benefit in the end.