Caring for a loved one with multiple sclerosis (MS) can be exhausting, resulting in crankiness, sleepless nights, and excessive sadness, but many resources are available to help deal with the daily challenges of caregiving, said social worker, therapist, and wellness educator Lara Krawchuk.
“Care partner fatigue is a normal and expectable thing when an illness is chronic,” she said. “It does not mean the care partner is bad or failing. It may mean they need a break or are struggling physically or emotionally. It may mean there is not enough help from outside coming in.”
Outside help can range from national organizations and therapists, to neighbors and even a couple’s own children.
Krawchuk led an online Q&A forum on March 25 about the needs of care partners as part of a series sponsored by the Multiple Sclerosis Association of America (MSAA) to mark Multiple Sclerosis Awareness Month.
The third webinar was about caregiver needs — “The Partnership of Care: Redefining Caregiver to Care Partner” — and was led by MS specialist and nurse practitioner Megan Weigel.
Other symptoms of caregiver fatigue include emotional volatility, snapping at the person with MS or others, being in pain, getting sick often, and eating too much or not enough. Care partners with these symptoms should ask for help and give themselves permission to prioritize their own needs, Krawchuk said. They should seek assistance from a variety of people, and assign each helper specific jobs suited to their abilities.
Taking a break
To avoid getting to the point where they feel overwhelmed, care partners must learn to take breaks, Krawchuk advised.
“Learn what recharges your batteries,” she said. “Every day, find ways to grab some alone time or some quiet time to do something just for you.… Effective care partnering over the long haul takes a strong self-care plan and taking good care of yourself too.”
Examples of “recharging” include listening to music, taking walks, doing yoga, journaling, praying, seeing a therapist, watching a favorite TV show, or going to the grocery store.
Support for care partners is also available from therapists, medical social workers, members of the clergy, and in-person and online support groups. Helpful organizations include MSAA, the National Alliance for Caregiving, the Rosalynn Carter Institute for Caregiving, the Caregiver Action Network, the Family Caregiver Alliance, and AARP.
An MS patient can encourage his or her care partner to take some time off by stressing the care partner’s importance so as not to seem ungrateful.
“It is a great idea to help care partners know they deserve to take breaks,” Krawchuk said. “Say this with love. Remind them first how much you appreciate their love and care. Tell them that their well-being matters to you too. Gently suggest they spend some time doing something for themselves so that they get a rest and some alone time.”
Guilt is not helpful
Children can also help out, and often feel very proud when they do so, Krawchuk said. Kids might read to the person with MS, make them music playlists, help with cleaning and preparing food, and assist with mobility.
“Some children want to help and others are reluctant to,” she said. “What kind of tasks (are) given should reflect their age and maturity level, as well as their emotional readiness to engage in specific kinds of care.”
While having a parent with MS can be stressful for children, care partners can do a variety of things to help make things easier, Krawchuk said. These include being open and honest about any questions the kids may have about MS, spending time with each child, if possible, so they have the care partner’s undivided attention, and helping children find an outlet for their fears and sadness through a support group or therapist.
However, feeling guilty about whether or not a caregiver is doing enough for their loved one with MS does not help anyone. While such feelings are normal, Krawchuk noted, not finding a way to express them can create problems.
“It is important to have a safe and honest confidante who can listen when you are feeling overwhelmed or guilty,” she said. “They can help you figure out if you owe an actual apology, or if you might be being hard on yourself. Any emotion that has no outlet can get pretty toxic and come out all over the place. So if you are having big emotions, it is important to get it out.”
It’s also important for couples to have kind discussions about feelings of sexual frustration the care partner may be experiencing, Krawchuk said. They can consult neurologists about the physical aspects of the disease, and counselors to help facilitate conversation.
“Talk about what is desired and explore new ways to connect as needed,” Krawchuk said.