Caregiver Guide For MS | MS LifeLines®

You may get a lot of help from the people close to you. By talking openly and honestly about your multiple sclerosis (MS), you can best help them support you.

Six things close family and friends can help with:

Offering emotional support you can count on.
Making decisions for medical, financial, and other issues.
Everyday household chores, responsibilities, and other activities.
Taking you to medical appointments and helping you communicate with your doctor.
Keeping records of your symptoms, medications, and questions.
Keeping track of your treatment schedule.

Talking to your partner

If you are married or in a committed relationship, MS can bring unexpected challenges and surprising rewards. Working together to overcome obstacles can bring you and your partner closer together. But it does require shared commitment and effort.

As you take on MS together, don’t forget to set aside some couple time and keep the lines of communication open.

Tips for care partners

If you’re helping to care for someone with MS, you have a very important job. Besides helping in everyday ways, you can offer emotional support.

Here are some ways you can help your loved one:

Listen
- Hearing what your loved one says shows that you care
- When your loved one confides in you, it means they value your support
Communicate
- Ask your loved one how you can best help them
- Find out if they need physical support, emotional support, or both
- Talk about how you can be supportive to help both of you plan for the future
Learn about MS
- Become educated about MS and how it’s treated so you can try to relate and give better support
Be by their side
- Whether it’s in the doctor’s office or during an in-home nurse visit, help by taking notes and asking questions

Care partners need support too

Taking care of your loved one with MS can be very stressful. Be sure not to ignore your own needs.

Talk openly and honestly about your needs

Share your feelings with your loved one and let them know if you’re having any problems
Your needs are important, too, and your loved one will understand

Take a break when you need one

Being a good care partner starts with your well-being
See if any other family members or friends can step in when you need a break

Take care of yourself

Eating a healthy diet, exercising, and having regular medical exams will ensure you’re in the best shape possible
Pay attention to changes in your mood and seek help if you need it

Check out these 4 tips to help care partners take time for themselves ›

Explaining MS to kids

If you’re a parent or family member living with MS, you may have concerns about talking to kids about your condition. You might wonder how much you should tell them, or if telling them about your MS will confuse or scare them. It's natural to want to protect them, but when it comes to talking to kids, honesty may be the best policy.

Talking to your friends

Disclosing your MS to others is a personal decision. Whether you decide to tell others about your MS is up to you. There is no right or wrong way to talk about it. Tailor information as you see fit to the individual and the situation. Over time, you'll be able to gauge the reactions of different friends to determine if, when, and how much you want to disclose.

Talking to your kids

Children are bound to have lots of questions about MS. What is MS? Can I catch MS from you? How will MS affect me? Try to answer truthfully in an age-appropriate way.

You may also want to reassure the kids that they can't “catch MS.” It's not like a cold. If children want to know how MS will affect them and your family, be honest. MS is different for every person. Although you can't tell kids exactly what to expect, you can still prepare them for possibilities.

Try to remember that kids are adaptable. The key is open communication. As long as they have the facts and feel reassured, most children can adjust to just about anything.

Singles with MS

Being single with MS has its own challenges.

People may think that MS will prevent them from finding companionship, but that doesn't have to be the case. There are plenty of ways to meet and connect with other people.

Many advocacy organizations have resources and groups specifically focused on being single and having MS. One such organization is the National Multiple Sclerosis Society. Check out your local chapter or find a list of resources on their website.

Relationships with MS

If you or a loved one has MS, you may wonder what that means for dating. Here are a few things to keep in mind:

Opening up

When you’re getting to know someone, you may feel like talking about your MS. If so, bring it up! You may feel hesitant—some people have a lot of misconceptions about MS or it may be a new conversation for you. But by bringing it out into the open, you can tell them about what living with MS is really like. It can help them know what you’re going through and it may be an opportunity to bring you two closer.

The best night out may be an evening in

Going out can be great, but there’s no place like home when you or your partner is low on energy. Fatigue is a common symptom of MS. It can come and go at any time. While this may not be convenient, keeping it in mind can help you adjust to make the most of a date night.

A cardigan may be better than jewelry

Necklaces, watches, and cufflinks can be great gifts. But if you or your partner have MS, it may be hard to put on jewelry. MS can affect a person’s dexterity. While it may be tempting to gift a pair of earrings, other items may be a better fit.

Dress for comfort

For some, heels are a part of dressing up. But sometimes, many people with MS experience issues with their balance and gait. High-heeled shoes may not help. In these situations, functional shoes can be a necessity.

Spontaneity is key

Sometimes, an unexpected gesture can sweep someone off their feet. But when MS flares up unexpectedly, you or your partner may not want to travel much further than the couch. When scheduling a date, it’s important to be flexible and make the most out of the days you or your partner are feeling good.

Some people may think that MS means an end to dating. Many people with MS are able to lead romantically fulfilling lives. It may take some adjustment, but If you have any advice for dating with MS, share it with our online community!

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