Caregiver Tips for Loved Ones with Multiple Sclerosis
As a caregiver, you play a vital role in supporting your loved one through the challenges of Multiple Sclerosis (MS). This complex and unpredictable disease can be overwhelming, but with guidance, you can make a significant difference in their life.
Caregiver's Journey
My mother-in-law was diagnosed with progressive MS over 20 years ago, and it’s been a steady decline in her physical abilities ever since. She’s still the same loving, present person, but she now needs help with almost everything. As her disease progressed, our family took turns caring for her across different cities, but finding consistent, quality care—and coordinating it all—has been the hardest part. Even with a big support network, the lack of collaborative tools made managing her care feel overwhelming.
- Kosha E, HeroGeneration Community
What is Multiple Sclerosis?
Multiple Sclerosis is a chronic autoimmune disease that affects the central nervous system (CNS), which includes the brain, spinal cord, and optic nerves. It occurs when the immune system mistakenly attacks the protective covering of nerve fibers, leading to communication disruptions between the CNS and the rest of the body.
What your loved one may be dealing with
Common symptoms of MS include:
- Fatigue
- Vision problems
- Muscle weakness or spasms
- Balance and coordination issues
- Cognitive difficulties
People suffering from MS often face significant mobility issues as the condition advances.
There is no single test that can confirm a diagnosis of MS, but a thorough evaluation by a neurologist can help determine if symptoms are caused by MS.
TIP: MS symptoms can vary day by day. Stay flexible and ready to adjust care routines based on your loved one’s energy levels and physical abilities.
What to Expect
As a caregiver, you should expect the unexpected. MS is an unpredictable disease that can have varying levels of severity and progression.
Caregiving challenges
Challenges you may face as a caregiver include:
- Managing medications and treatment plans
- Assisting with daily activities like bathing, dressing, and feeding
- Providing emotional support and understanding
Treatments you may be assisting with
Treatment for MS aims to manage symptoms, slow disease progression, and improve quality of life. Some of the support you provide may incorporate:
- Disease-modifying therapies (DMTs)
- Administering steroids to reduce inflammation
- Providing medications to manage specific symptoms like spasticity or pain
In Their Shoes
Imagine waking up each day not knowing what version of your body you’ll face. For some, MS means subtle tingling, occasional blurry vision, or a dragging fatigue that no one else can see. For others, it’s muscle weakness, difficulty walking, or needing a cane—or even a wheelchair—just to get around. The disease doesn’t follow a straight path. One person might go years with mild symptoms while another experiences rapid progression and life-altering disability. And within that, symptoms can come and go—one week you’re okay, the next you’re sidelined by a flare-up you didn’t see coming. That unpredictability is one of the hardest parts: making plans, keeping commitments, even feeling like yourself becomes complicated. It’s frustrating to explain invisible symptoms when people assume you’re fine because you “look okay.” No two journeys with MS are the same. Having someone willing to understand that range, and meet you where you are today, can offer strength when everything else feels uncertain.
Fears and Concerns
Your loved one may fear:
- Losing mobility or independence
- Experiencing debilitating symptoms
- Undergoing invasive treatments
Daily life changes
MS can significantly impact daily life, making simple tasks like cooking, cleaning, or even getting out of bed a daunting challenge for your relative. Part of your role is to help minimize the negative effects of these changes.
TIP: Multiple sclerosis doesn't just affect the physical body- it reshapes identity. Hold space for that.
Setting Goals
As a caregiver, it's essential to set realistic goals with your loved one. This will help you work together towards improving their quality of life and managing the disease.
Goal-Setting Process
- Identify areas that need improvement
- Set specific, achievable, and measurable goals
- Prioritize goals based on importance and urgency
- Develop a plan to achieve goals and monitor progress
High-Level Plan
Here's a high-level plan for caregivers:
- Assess your loved one's needs: Understand their physical, cognitive, and emotional challenges. With MS, symptoms can vary widely—from fatigue and numbness to mobility issues and vision problems—so it’s important to assess how these fluctuate over time and impact daily living.
- Set realistic goals: Establish achievable short- and long-term goals that support independence and well-being.
- Develop a treatment plan: Work with healthcare providers to create a plan that includes medical management, therapy, and lifestyle support. MS treatment often involves a combination of medications, physical therapy, and strategies to manage symptoms like spasticity, pain, and cognitive changes.
- Monitor progress: Track your loved one’s symptoms, functional abilities, and emotional state over time. Since MS can progress in relapsing or steady forms, documenting patterns can help identify early signs of exacerbation or complications that require medical attention.
Online Resources for Caregivers
Navigating the caregiving journey is challenging, but numerous online resources offer support:
- National Multiple Sclerosis Society - A comprehensive resource for MS information, treatment options, and caregiver support.
- Multiple Sclerosis Association of America - Offers educational materials, webinars, and online communities for caregivers and individuals with MS.
- Join the HeroGeneration community to find more help and resources for caring for a loved one with MS.
