How to Be a Caregiver for Someone with Multiple Sclerosis

Turn to reliable resources

To learn about MS, you’ll want to tap reliable resources like Can Do MS or MS Care Partner Connection, a website with curated information from select organizations. In addition to disease basics, topics include navigating the health care system, caring for yourself, understanding government programs, preserving your relationship and planning your financial future. Pasquet and Strum are on its advisory board.

Perhaps the first stop for many caregivers will be the National Multiple Sclerosis Society, the Multiple Sclerosis Foundation and the Multiple Sclerosis Association of America. They provide direct services, support and education, and you can call to speak with an MS navigator for guidance. 

At the National Multiple Sclerosis Society, the same navigator stays with you throughout your journey. “You can call them back, and they know your situation,” says Heather Svenson, senior manager of programs and support services at the Society.

Svenson also recommends caregivers call 211 to connect to local community resource specialists from United Way, a global nonprofit.

If you prefer books, Kalb is a co-author of Multiple Sclerosis for Dummies and Navigating Life with Multiple Sclerosis from the Academy of Neurology.

Prepare for unique challenges

Many symptoms, like tingling in the limbs and bladder control problems, may not be visible. “Somebody could look at someone with MS and say, ‘There’s nothing wrong with them,’ because they look fine,” says Svenson, The society even has a brochure titled, But You Look So Good!

Other symptoms, like depression, cognitive changes and fatigue can easily be missed or misinterpreted. You may mistakenly think your spouse, sibling, or child with MS doesn’t care about you, share mutual interests anymore, or is being lazy, says Kalb.

The relapsing and remitting nature of the disease presents its own challenges.

 An MS patient can wake up to discover they can no longer see or feel their legs or to intense pain, “and these are just a few of the dozens of potential symptoms that may appear or worsen without warning,” says Strum. “The patient's care partner is tasked with calming the patient, contacting their health care provider, or even transporting the patient to a hospital's emergency room for assessment and treatment, all while trying to absorb the emotional impact of this sudden change in their loved one's status.” 

Be a medical advocate

Strum participated in all his wife’s medical appointments. “Caregivers can add a tremendous amount of value,” he says. When a doctor asked Caputo how she was feeling, her answer often reflected the past few days, while he could add information about the past few months. “Because I was in the room, I could say, ‘Yes, the last couple weeks have been great.... But do you remember when all of a sudden your vision went wonky? Do you remember when I walked into the room and you didn't know who I was for a minute?’” That larger view gives the doctor a better understanding of what the patient may be experiencing.

Svenson explains that “If you don’t give the correct information to the doctor, they may give you some medication that might not be appropriate." She also advises caregivers to take notes.

With your partner’s permission, develop a relationship with the medical team, so they understand your needs as well, says Kalb. “When they just assume that this care partner can or will do whatever is recommended, they’re missing some opportunities to help support that care partner, to make sure they know what they’re doing and that they’re able to do it,” Kalb says.

Learn caregiving skills

Depending on your loved one’s experience with the disease, you may need to develop skills to provide hands-on caregiving and the health care team can teach you those. “They may be able to provide some guidance in terms of how to manage a catheter or to attend to cognitive dysfunction or skin care needs,” says Lucille Carriere, a clinical health psychologist at the Cleveland Clinic Lou Ruvo Center for Brain Health in Las Vegas and an expert in caregiving.

You may also be able to find caregiver skills courses through your local area agencies on aging. “They’re not very specific to MS, but a lot of the skills could apply,” says Carriere.

When doing hands-on caregiving, let your partner take the lead, if possible, says Paquet. “It keeps their dignity and their self-esteem,” she says. There are some tasks that Paquet knows Sillasen needs help with, like putting on compression socks or pulling up her pants. But other times, Sillasen determines when she needs assistance.

They have also made adaptations to their house and vehicle to preserve independence, such as lowering the bed to make it easier to get in and out, raising the toilet height so Sillasen can slide on and off and installing a remote-controlled seat in the car that extends out and down to a programmed height so she can transfer herself from the wheelchair.

Take care of yourself

The responsibilities of a caregiver can add up: taking over household chores, doing the cooking, paying the bills and, if necessary, helping your loved one with dressing, bathing and other personal tasks. It’s easy to feel overwhelmed and isolated.

Social support is found to help in “building resiliency in MS care partners,” says Carriere. Many MS organizations can help you find support groups or meetups, most of which are now offered online. Or you may want to consider seeing a mental health therapist familiar with the disease.

Look to your partner as well. “MS has stolen a lot from us, so we try to combine forces and not take it out on each other when things are overwhelming,” says Paquet. “When I get frustrated, I tell SeaJaye, ‘I’m not mad at you. I’m really freaking pissed at MS.’”

It’s also important to not neglect your own friends and hobbies, says Kalb. You can explain to your loved one with MS that you need 15 minutes alone to decompress at the end of the day or to exercise. Consider inviting a neighbor or relative over to keep your loved one company while you hang with a friend.

“You have to be intentional about it,” says Kalb. “If you don’t schedule those things, they’re not going to happen.”