Caring for Someone with MS

Caregiving for someone with MS can be difficult for both you and the person you’re caring for. Remember to respect their wishes and respect yourself when you’re providing care.

Caring for someone with multiple sclerosis (MS) can be a tricky space to navigate.

The condition is unpredictable, so it’s hard to know what a person with MS will need from one week to the next, such as changes in their home and emotional support.

Supporting someone with MS

One way to provide support is to learn about MS.

Online resources offer a lot of information. You can complete educational programs and attend support group meetings or MS events along with the person you’re caring for.

Becoming familiar with MS can help you understand what someone with MS may be feeling, even if you can’t see their symptoms. This can help you better support them.

Open communication is also very important. It’s hard to support someone if you don’t know what they need. Ask how you can help.

If it’s OK with the person you’re caring for, take an active role in their care. Examples of actively engaging may include:

• going with them to appointments
• asking healthcare professionals about anything you don’t understand
• helping them manage medications and other treatments

Your role may change over time, so try to check in regularly with the person you’re caring for. Sometimes, they may need more help, and other times, they may want more independence.

Talking through issues can help you support each other and work through the challenges that come with MS.

Learn more about how to talk with someone with MS, including what not to say and what to say instead.

Living with someone with MS

When you share a home with someone with MS, making adaptations to living areas can improve their:

• accessibility
• safety
• independence

MS is unpredictable, so they may need more help on some days than on others. Be aware of these potential changes, and observe or ask when they need help. Be ready to assist them as needed.

Sometimes, someone with MS may view attempts to help them as overprotective or intrusive, and they may feel minimized or overlooked. Trying to help too much can also strain family relationships.

According to a 2022 studyTrusted Source, although family members who offer support for someone with MS may mean well, it is also important for the person to learn how to live without their family always being there to help. A more “hands-off” approach may be necessary.

You may find it helpful for the person you’re caring to make a list of what they need from you. Care should always benefit them and follow their preferences.

Sometimes, the best way to support someone is to give them some space. If they ask for time to themselves, respect and follow their request.

Learn what you can do to make your home more MS-friendly.

Signs of caregiver burnout

The signs of burnoutTrusted Source can include:

• emotional and physical exhaustion
• illness
• decreased interest in activities
• sadness
• anger
• irritability
• trouble sleeping
• anxiety

If you recognize any of these signs in yourself, you can call the National Multiple Sclerosis Society at 800-344-4867.

Caring for yourself as a caregiver

Taking care of yourself and maintaining your health can help avoid burnoutTrusted Source. Even while you’re caring for someone else, do your best to keep up the following healthy habits:

• getting enough sleep
• taking time for hobbies and exercise
• asking for help when you need it
• eating balanced meals

Try to think about what you need to best support the person you’re caring for. Ask yourself:

• Do you need help on a regular basis or an occasional break from the stresses and responsibilities of caregiving?
• Can you make any changes in the person’s home to increase their independence?
• Do they have emotional symptoms you aren’t sure how to handle?
• Are you comfortable giving medical treatments, or would you prefer to hire help?
• Do you have a financial plan?

The National MS Society provides more information on these situations.

Caregiver resources

Several groups offer information about circumstances that people with MS and their caregivers may encounter.

Click here to continue reading

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