How Caregivers Help To Support a Loved One with Multiple Sclerosis
Multiple Sclerosis is a debilitating and complicated autoimmune disease that affects the nervous system, causing brain and spinal cord damage—oftentimes impairing mood, speech, thought processes and physical agility.
This can make it difficult for someone to get around as easily as he used to.
Because MS is so unpredictable—the type and severity of symptoms and the progression varying from case-to-case—it can often feel overwhelming or confusing for friends and family who want to help, but aren’t sure how.
It’s important to encourage a lifestyle surrounded by wellness activities, or activities that promote mental and physical wellbeing, to mitigate symptoms and help your loved one find happiness, purpose and most importantly, a close version to what life was like before the diagnosis.
The good news is that advancements in treatment have made living with MS more tolerable by slowing the progression of symptoms, which can include fatigue, numbness and tingling, blurred and double vision, poor coordination, imbalance, pain and memory and concentration issues. Less common symptoms include tremors, paralysis and blindness.
In addition, the life expectancy of someone living with MS has increased significantly in the last 20-25 years—giving an adult with MS just seven years fewer life expectancy than a healthy adult, according to the National MS Society.
Even with these advancements, an MS diagnosis can feel scary and isolating, and it’s important to support your loved one through his new lifestyle. In fact, research shows that the level of support is one of the most essential factors in how well a person manages his disease.
Here are a few ways you can help:
Because MS is a complex neurological disease and differs greatly from one patient to the next, it’s often misunderstood and intimidating for family and friends. Learning about the cause, progression, treatment options and caregiving possibilities, you will start to better understand what your loved one is going through and how you can help. Understanding the unpredictability of the disease will also give you a greater perspective on the level of fatigue someone might be experiencing one day and not another, and how someone is responding to new medications.
Two helpful resources are the National Multiple Sclerosis Society and the Multiple Sclerosis Association of America. These groups offer free support services through phone lines and chatrooms for friends and family learning to cope with a diagnosis.
Ask how you can help
Oftentimes people with MS are afraid to ask for help because they don’t want to burden anyone, they’re embarrassed, or, if it’s a new diagnosis or new symptoms, they may not know exactly how they need help. Don’t wait for your loved one to reach out; instead, suggest ways you might be of service. Some ideas are joining them at a support group meeting and doctor appointments, creating recipes or cooking together to encourage healthy eating, completing household chores, and playing games to stimulate cognitive function.
Studies show that exercise helps manage many MS symptoms, such as lessoning fatigue and mood swings and increasing strength, bone density and flexibility. Carve physical activity into your time spent together. Exercising doesn’t have to be strenuous cardio work; even gardening, walking the dog or stretching can make an impact.
Assisted devices, such as scooters or walking supports, can further mobility and expand the range of activities that you are able plan together.
Engage in community activities
A social gathering may seem intimidating, especially if your loved one isn’t sure if he wants to disclose the disease to anyone outside the family, or is physically incapable of getting to a meeting spot. Initiate an outing to meet with friends or offer to drive your loved one to a friend’s house. Forming and maintaining relationships and having a strong network nearby is essential for mental health and wellness, especially if he was a social person before the diagnosis.
Make sure it’s a give-and-take relationship
When your friend or family member is suffering from a chronic disease, it’s common to assume that it’s your responsibility to constantly give, whether it’s through emotional or physical support. But, it’s a healthier relationship if you depend on your friend for the things you used to before he was diagnosed.
Rely on him for emotional support, sharing stories about what’s happening in your life and ask for advice—he will most likely be gracious to help you.
If the new dynamic is difficult to navigate, consider hiring a caretaker to help with everyday tasks. This way, you can focus on your relationship and the reasons you enjoy each other’s company.