Challenges of Being an MS Caregiver

In our MS In America 2017 survey, we gathered insights and information from people living with multiple sclerosis (MS) as well as their caregivers. As a chronic and progressive disease, MS can cause a significant disruption in a person’s ability to participate in daily life. The disease takes its toll on caregivers, too, as they strive to keep their loved one healthy, buoy their spirits, and take on more of household responsibilities.

How caregivers describe MS

Like their loved ones with MS, caregivers view the disease as an unpredictable and overwhelming force in their lives. Caregivers know that the disease has the potential for long-term complications, and they experience fear and worry about complications and the next relapse of the disease.

Emotional and physical challenges

While MS causes physical changes and limitations in the person with the disease, it also causes emotional distress, as the daily stress of living with a chronic disease like MS takes its toll. More caregivers in our MS In America 2017 survey reported that the emotional symptoms of MS have an impact on the caregiver’s life than the physical symptoms of MS. Caregivers reported that their role is a 24/7 job, and that the biggest part of their role was providing emotional support, staying positive, and trying to keep their loved one in a positive frame of mind.

Caregivers in the MS In America 2017 survey also talked about the physical and financial challenges. As MS progresses and a person living with the disease may become immobile, the caregiver may be called on to move the patient and/or lift them. If a caregiver isn’t physically strong enough or big enough to lift their loved one, this causes additional concern, as they anticipate how they will help their loved one or what additional services they may need. While caregivers describe their caregiving duties as a 24/7 job, many also are employed outside the home, and their employment may be critical to insurance needs of the family. Much or all of the household management duties also fall to caregivers, who try to balance taking care of the home, managing finances, taking care of their loved one with MS, and trying to find some time for themselves.

Coping with caregiving

Caregivers are naturally focused on providing assistance and support to their loved one with MS. However, caregivers also need support. Being a care partner can be stressful and challenging, and the many unpredictable aspects of MS can make it even more demanding. To avoid caregiver burnout, care partners must take time for themselves and set up support systems. Some ways to cope with caregiving include:

• Staying connected. Caregiving can isolate you from others, and as MS progresses, you may find you both spend more time at home. Caregivers should plan time for social connections, stay in touch with friends and family via social media or phone calls, and find online communities where they can get support.
• Create a support network. Support networks can include healthcare professionals (for you and for your loved one with MS), family, friends, clergy, community support groups, and online support networks.
• Ask for help. Sometimes the hardest part is asking. Identify tasks or areas where you need help or that you can delegate to other family members or friends. Oftentimes, people want to help but don’t know what to do. Perhaps you can find household tasks like making a meal, housecleaning, or yardwork that someone else can do. Or, you can ask others to spend time with your loved one with MS to give you a scheduled break.
• Manage your own health. As much as your schedule allows, proper sleep and regular exercise are critical for your physical and mental well-being. Be aware of the signs of depression, including feelings of hopelessness, difficulty concentrating, loss of appetite or eating too much, difficulty sleeping or sleeping too much, lack of interest in once-pleasurable activities, and thoughts of death or suicide. If you experience these symptoms or think you may be depressed, talk to a healthcare professional.
• Build in breaks. Find time in your schedule for regular breaks. Ask your support network for help or research respite programs in your community. Rather than feeling guilty for taking “me time,” recognize that caring for your well-being allows you to continue to provide care for your loved one.