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.

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.

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 study, 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.

The signs of burnout 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.

Taking care of yourself and maintaining your health can help avoid burnout. 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.

National organizations

The following national organizations can help caregivers lead more balanced lives:

  • The Caregiver Action Network hosts an online forum where caregivers can connect. This is a good resource if you want to share advice or talk with others who are going through the same experience.
  • The Family Caregiver Alliance provides state-by-state resources, services, and programs to help caregivers. It also offers a monthly newsletter.
  • The National Multiple Sclerosis Society hosts the MS Navigator program, where professionals can help connect you to resources, emotional support services, and wellness strategies.

Some physical and emotional difficulties associated with MS care can be hard to resolve. These organizations also offer informative materials and services for caregivers.

Professional therapy

Do not hesitate to seek professional therapy for your mental health. Talking with a counselor or other mental health professional about your emotional well-being is a way of caring for yourself.

If you can, look for someone with experience working with chronic conditions or caregivers.

If you can’t afford professional help, you may find it beneficial to talk with a trusted friend or to find an online support group where you can openly discuss your emotions. You can also start a diary to write down your feelings and frustrations.

Staying relaxed

A regular meditation practice may help you stay relaxed and grounded throughout the day.

Techniques that may help you stay calm during stressful times include:

Staying organized

Staying informed about the treatment of the person you care for can streamline medical appointments and treatment plans and save time in the long run.

You can stay organized by:

  • keeping a medication log to track:
  • keeping legal documents so you can make healthcare decisions for the person if necessary
  • using a calendar to keep track of appointments
  • writing down questions to ask during upcoming medical appointments
  • storing important phone numbers somewhere that is easy to access
  • taking note of any cognitive changes the person experiences

Try to store all this information in the same place so it’s easy to find and update.

It’s OK to take breaks and ask for help — and there’s no need to feel guilty about it.

Your health is important, and you don’t have to do everything yourself. Taking some time off isn’t a sign of failure or weakness.

If other people want to help, let them. You may be able to ask friends or family members to come by at a specific time so you can run errands or do another activity.

Make a list of people who have offered to help in the past, and don’t hesitate to give them a call if you need a break.

Another option is to hire a respite care professional to provide temporary caregiving. You can likely find a local home care company that offers this service for a fee.

Local civic groups, such as the U.S. Department of Veterans Affairs, churches, and other organizations, may offer companion services. Your state, city, or county social service agencies may also be able to help.

The day-to-day challenges of being a caregiver can add up. Don’t ever feel guilty for taking a break or asking for help when you’re providing care for someone with MS.

If you take steps to reduce your stress level and care for your own physical and emotional needs, you’ll have an easier time taking care of someone with MS.