Understanding Multiple Sclerosis (MS) and How to Care for Your Loved One: A Guide for Families

Published on November 13, 2023

Updated on January 21, 2024

Receiving a diagnosis of Multiple Sclerosis (MS) can be overwhelming for both the patient and their family. As an experienced with years of experience, I am here to provide you with information and support on what to expect over the course of the disease. In this , we will discuss the changes your loved one may experience and how you can best care for them from the onset of MS until the end of life.

What is Multiple Sclerosis (MS)?

Multiple Sclerosis is a chronic neurological condition that affects the central nervous system (brain and spinal cord). It occurs when the immune system mistakenly attacks the protective covering of nerve fibers, called myelin, leading to communication problems between the brain and the rest of the body.

What to Expect Over the Course of the Disease

Relapsing-Remitting Phase

  • In the early stages, MS often presents with relapses, which are episodes of new or worsening symptoms. These relapses can last for days to weeks before improving or stabilizing.
  • Remission periods may follow the relapses, during which symptoms might lessen or disappear.
main symptoms of multiple sclerosis

Secondary Progressive Phase

  • After years of living with relapsing-remitting MS, some individuals may enter a secondary progressive phase. In this stage, symptoms worsen gradually, and there may be fewer or no remission periods.

Primary Progressive Phase

  • Some people with MS may experience a primary progressive course from the onset. In this phase, symptoms steadily worsen without periods of remission.

Symptoms and Changes in the Disease

  • MS can cause a wide range of symptoms, depending on the affected areas of the central nervous system. Common symptoms include fatigue, difficulty walking, numbness or tingling, muscle weakness, vision problems, and problems with balance and coordination.
  • Over time, some individuals may experience cognitive changes, such as difficulties with memory, attention, and problem-solving.
  • As the disease progresses, it may lead to increased disability, affecting the person's ability to perform daily activities independently.

How to Best Care for Your Loved One

Stay Informed and Educated

Learn as much as you can about MS and its management. Understand the symptoms, treatments, and potential complications to better support your loved one. You can find reliable information from sources such as:

You can also join online forums, webinars, or podcasts to learn from other people who have MS or care for someone with MS.

Foster Open Communication

Encourage open and honest communication with your loved one about their feelings, fears, and needs. Be ready to listen and provide emotional support. You can also:

  • Ask your loved one how they are feeling and what they need from you
  • Respect your loved one's choices and preferences about their care
  • Share your own feelings and concerns with your loved one
  • Express your appreciation and gratitude for your loved one
  • Use humor and laughter to lighten the mood

Create a Supportive Environment

Ensure that the living space is safe and accessible for your loved one, especially if they have mobility challenges. Consider making modifications, such as installing grab bars and ramps, to make daily activities easier. You can also:

  • Keep the floor clear of clutter and cords
  • Use non-slip mats and rugs
  • Adjust the lighting and temperature to suit your loved one's comfort
  • Provide assistive devices, such as a cane, walker, wheelchair, or scooter, if needed
  • Arrange the furniture and items to make them easy to reach and use

Help with Medication Management

Keep track of your loved one's medications and help them stick to the prescribed regimen. You can also:

  • Use a pill organizer, calendar, or app to remind your loved one when to take their medications
  • Store the medications in a cool, dry, and safe place
  • Check the expiration dates and refill the prescriptions as needed
  • the possible side effects and interactions of the medications with your loved one's doctor or pharmacist
  • Report any changes or problems with the medications to your loved one's doctor or nurse

Encourage a Healthy Lifestyle

Support your loved one in maintaining a balanced diet, engaging in regular physical activity suitable for their abilities, and getting enough rest. You can also:

  • Plan and prepare nutritious meals and snacks that include fruits, vegetables, whole grains, lean protein, and healthy fats
  • Avoid foods and drinks that may worsen the symptoms, such as alcohol, caffeine, salt, sugar, and processed foods
  • Encourage your loved one to drink plenty of water and stay hydrated
  • Help your loved one find an exercise program that they enjoy and can do safely, such as walking, swimming, yoga, or tai chi
  • Assist your loved one in getting enough sleep and following a regular sleep schedule
  • Help your loved one manage stress by practicing relaxation techniques, such as deep breathing, meditation, or massage

Seek Emotional Support

Caring for a loved one with MS can be emotionally challenging. Don't hesitate to seek support from friends, family, or support groups to cope with the stress. You can also:

  • Talk to someone you trust about your feelings and challenges
  • Join a support group for caregivers of people with MS, either online or in person
  • Seek professional help from a counselor or therapist if you feel overwhelmed or depressed
  • Take time for yourself and do something you enjoy, such as reading, listening to music, or gardening
  • Ask for help from others when you need a break or assistance with the tasks

Consider Hospice and

As the disease progresses, consider seeking hospice and services. These specialized care options focus on symptom management, comfort, and emotional support for both the patient and the family. You can also:

  • Discuss the goals and preferences of your loved one for their end-of-life care
  • Learn about the benefits and eligibility of hospice and palliative care
  • Contact a hospice or palliative care provider in your area
  • Involve your loved one's doctor or nurse in the decision-making process
  • Respect your loved one's wishes and dignity

Conclusion

Remember, every individual's journey with Multiple Sclerosis is unique. Providing compassionate care, understanding their needs, and seeking support when needed will make a significant difference in their quality of life throughout the course of the disease.

Resources

National Multiple Sclerosis Society

Mayo Clinic Multiple Sclerosis

Cleveland Clinic Multiple Sclerosis

Multiple sclerosis symptoms

What is Multiple sclerosis?

Understanding Hospice Care: Is it Too Early to Start Hospice?

What's the process of getting your loved one on hospice service?

Picking a hospice agency to provide hospice services

Medicare — Find and compare hospice providers

Providing Comfort During the Last Days of Life with Barbara Karnes RN (YouTube Video)

Preparing the patient, family, and caregivers for a “Good Death”

Velocity of Changes in Condition as an Indicator of Approaching Death (often helpful to answer how soon? or when?)

The Dying Process and the End of Life

The Last Hours of Life

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