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, including changes in the home and emotional support.
One good way to provide support is to learn as much as you can about MS.
Online resources offer a lot of information. You can even complete educational programs or attend support group meetings or MS-focused events together.
Being familiar with MS can help you understand what the person may be feeling, even if you can’t see their symptoms. This can help you to better support them.
Open communication is also very important. It’s hard to support someone if you don’t know what they need. Ask the person how you can help.
If it’s alright with your loved one, take an active role in their care team. Examples of actively engaging in your loved one’s care may include:
- going with them to appointments
- asking healthcare professionals about anything you don’t understand
- helping manage medications and other treatments
Your role may change over time, so try and check in regularly with the person you’re caring for. Sometimes they may need more help, and other times they may want to be more independent.
Talking through issues helps you support each other and work through the challenges that come with MS.
When you share a home with someone who has MS, making adaptations to living areas can improve your loved one’s:
These alterations may include:
- building ramps
- making kitchen renovations
- adding handholds or other modifications in bathrooms
Many changes can be helpful without being expensive.
MS is unpredictable, so some days they may need extra assistance, and other times they won’t. Be aware of this changeability and observe or ask when they need help. Then be ready to assist them as needed.
A 2017 study found that people with MS found the physical changes in their bodies uncomfortable.
Sometimes caregivers’ attempts at support are seen as overprotective or intrusive. This can cause people with MS to feel minimized or overlooked. It can also cause a strain in family relationships.
The study suggested that caregivers avoid helping with tasks too quickly. Taking over can undo the sense of accomplishment of completing something on their own, even if it takes longer.
Not all attempts to help were seen as negative. The study indicated that when caregivers provided help in ways that promoted self-worth and preserved independence, relationships improved.
The study also suggested that open communication and caregivers stepping back could help minimize negative outcomes.
It may help for your loved one to make a list of things they need from you.
Sometimes, the best way to offer support is by giving a person some space. If they ask for time on their own, respect and follow their request.
It can be difficult to understand what someone with MS is going through. Sometimes you may say something hurtful or inconsiderate without meaning to.
Here are a few phrases and topics to avoid, along with what you can say instead:
- “You don’t look sick,” or “I forgot you were ill.”
- Symptoms of MS aren’t always visible. Instead, ask: “How are you feeling?”
- “My friend with MS was able to work.”
- Other people’s experience with MS often aren’t relevant. Instead, say: “MS affects everyone differently. How have you been doing?”
- “Have you tried a diet/medication to cure MS?”
- There is no cure for MS. Instead, discuss activities that may help them feel better, like exercise. If you’re not sure, and they’re willing to talk about it, ask how MS is treated.
Never blame someone for having MS or suggest that the condition is their fault. The cause of MS is unknown, and risk factors, such as age and genetics, are out of the person’s control.
It’s important for you to take care of yourself to maintain your own health and help avoid burnout. This often includes:
- getting enough sleep
- taking time for hobbies and exercise
- getting assistance when you need it
It may help to think about what you need to support your loved one. Ask yourself:
- Do you need help on a regular basis or an occasional break from the stresses and responsibilities of caregiving?
- Are there home adaptations you can make to assist your loved one and increase their independence?
- Does your loved one 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?
These questions are common as MS progresses. However, caregivers are often reluctant to ease their own burden and take care of themselves.
The National MS Society addresses these issues in their guidebook, A Guide for Support Partners. The guide covers many aspects of MS and is an excellent resource for caregivers.
Caregivers have many other resources available to them, as well.
Several groups offer information on virtually any condition or problem that people with MS and their caregivers may encounter. Seeking professional counseling may also benefit your mental health.
Groups and resources
National organizations are available to help caregivers lead more balanced lives:
- The Caregiver Action Network hosts an online forum where you can connect with other caregivers. This is a good resource if you want to share advice or talk with others 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 caregiver newsletter.
- The National Multiple Sclerosis Society hosts the MS Navigators program where professionals can help connect you to resources, emotional support services, and wellness strategies.
Some physical and emotional issues associated with MS are difficult for caretakers to resolve. To help, informative materials and services are also available to caregivers through these organizations.
Don’t hesitate to seek professional talk therapy for your own mental health. Seeing a counselor or other mental health professional to talk about your emotional well-being is a way of caring for yourself.
You can ask your doctor for a referral to a psychiatrist, therapist, or other mental health professional.
If you can, look for someone with experience with chronic conditions or caregivers. Your insurance may cover these types of services.
If you can’t afford professional help, find a trusted friend or online support group where you can openly discuss your emotions. You can also start a diary to write down your feelings and frustrations.
Learn to recognize the signs of burnout in yourself. These signs may include:
- emotional and physical exhaustion
- becoming ill
- diminished interest in activities
- trouble sleeping
- feeling anxious
If you recognize any of these signs in your own behavior, call the National Multiple Sclerosis Society at 800-344-4867 and ask to speak with a navigator.
It’s alright to take breaks and ask for help. There’s absolutely no need to feel guilty about it, either.
Remember: Your health is important, and you don’t have to do everything on your own. Taking some time off isn’t a sign of failure or weakness.
Others may want to help, so let them. Ask friends or family members to come by at a specific time so you can run errands or do another activity.
You can also make a list of people who have offered to help in the past. Don’t hesitate to give them a call when you need to take a break. If it’s an option, you can also hold family meetings to divvy up responsibilities.
If no one in your family or friend group is available, you can hire professional respite care to provide temporary caregiving. You can likely find a local home care company that offers this service for a fee.
Companion services may be offered by local civic groups, like the U.S. Department of Veterans Affairs, churches, and other organizations. Your state, city, or county social service agencies may also be able to help.
A regular meditation practice may help keep you relaxed and grounded throughout the day. Techniques that can help you stay calm and remain levelheaded during stressful times include:
- regular exercise
- keeping up with friendships
- continuing your hobbies
- music therapy
- pet therapy
- daily walks
Exercise and yoga are both especially good for fostering your own health and reducing stress.
In addition to these techniques, it’s important to make sure you’re getting enough sleep and eating a healthy diet high in fruits, vegetables, fiber, and lean sources of protein.
Staying organized can help you reduce stress and free up more time to do the things you love.
It may seem cumbersome at first, but staying on top of your loved one’s information and care can help streamline doctors’ appointments and treatment plans. This will save you precious time in the long run.
Here are some ways to stay organized while you care for your loved one with MS:
- Keep a medication log to track:
- medication results and any side effects
- mood changes
- cognitive changes
- Have legal documents so you can make healthcare decisions for your loved one.
- Use a calendar (either written or online) for appointments and to keep track of when to give medications.
- Keep a list of questions to ask during their next medical appointment.
- Store phone numbers of important contacts where they’re easy to access.
Try to store all the information in the same place so that it’s easy to find and keep updated.
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 providing care for someone with MS.
By taking steps to reduce stress and care for your own physical and emotional needs, you’ll have an easier time taking care of your loved one.