Receiving a diagnosis of Multiple Sclerosis (MS) can be overwhelming for both the patient and their family. As an experienced hospice nurse with years of experience, I am here to provide you with information and support on what to expect throughout the disease. In this guide, 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 Throughout 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.
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.
Some individuals may experience cognitive changes over time, such as memory, attention, and problem-solving difficulties.
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 support your loved one better. 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 about their feelings, fears, and needs with your loved one. 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 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
Please 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
Review 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 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 like 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 Palliative Care
As the disease progresses, consider seeking hospice and palliative care services. These specialized care options focus on symptom management, comfort, and emotional support for 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 significantly improve their quality of life throughout the course of the disease.
