People who take care of their own needs while caring for a loved one with multiple sclerosis (MS) are more likely to be successful, and enjoy a mutually rewarding relationship. And the best way to ensure that partners’ needs are met is for them to communicate openly and often.
These were among the main points made by MS specialist and nurse practitioner Megan Weigel of Jacksonville, Florida, during a March 18 webinar titled “The Partnership of Care: Redefining Caregiver to Care Partner.”
Unlike a caregiver situation in which one person mainly helps the other with feeding, bathing, toileting, and other day-to-day needs, a care partnership involves both parties working together to manage the challenges posed by MS while supporting and allowing “each other to thrive,” Weigel said.
The webinar was the third in a series of four sponsored by the Multiple Sclerosis Association of America (MSAA) to mark Multiple Sclerosis Awareness Month. The first webinar, titled “Intimacy and Family Planning with MS” and led by family therapist Kimberly Castelo, took place March 5. The second, also led by Castelo, was an online Q&A forum on sex and intimacy and MS. Both webinars are available for viewing by clicking on their titles; the Q&A is available as a transcript for reading.
The last in the series, “Ask Me Anything,” is scheduled for March 25. This Q&A with Lara Krawchuk, social worker, therapist, and wellness educator, will focus on care partner needs.
Weigel has been an advanced registered nurse practitioner for 11 years, and an MS-certified nurse for eight of those years. She received her doctor of nursing practice degree in 2009, with a focus on preventive healthcare in MS patients. Weigel was chosen as one of Jacksonville’s “40 Under 40” by the Jacksonville Business Journal in 2010, and that same year received an Outstanding Young Alumnus award from the University of Florida.
Care partner health problems
According to Weigel, spouses are most likely to be the care partners, followed by parents and siblings. And since MS tends to affect three to four times as many women than men, the care partners are often men in the early stages of their careers with young families.
Care partners are twice as likely as the general population to suffer from depression, while chronic stress increases their risk for cardiovascular disease, diabetes, and cancer, she said. They’re also often sleep-deprived, and they don’t exercise, don’t stay in bed when they’re sick, and tend to have poor eating habits.
Failure to care for themselves may lead to burnout, Weigel said. Signs of burnout include mood swings and chronic exhaustion, frequent illness, rising anger or frustration, and behavior changes or lack of mental clarity.
Weigel compared the care partner’s need for self-care to parents needing to put their oxygen mask on first during an airplane emergency before doing so for their children. If the parents can’t breathe, they won’t be able to help their kids.
“[Burnout] happens when you sacrifice your physical and emotional needs, and this leads you to feel guilty if you feel angry or isolated, and then guilty if you choose to do something for yourself,” Weigel said. “So whether or not you’re doing something for yourself, you’re feeling guilty. That’s really not a great place to be, and it doesn’t serve anybody.”
When that happens, care partners should exercise more, connect with other care partners, develop a stress-management plan, and eat better, she suggested.
Communication is imperative
They should also seek help from their support network or “village of care,” which needs to be established well in advance to avoid needing to scramble in the midst of a crisis. The village includes family members, friends, and neighbors, as well as healthcare professionals and providers of services such as housekeeping and transportation.
“I would argue that you should have a really big village,” Weigel said. “It’s smart, it’s effective, and it takes anxiety away to know who your village is before you need to call on them.”
Whenever possible, care partners need to determine what each partner needs. But for this to happen, communication is critical. Weigel warned that if a couple has marital problems before one partner is diagnosed with MS, things will worsen as the disease progresses. In this case, she recommends seeking help from a mental health professional as soon as possible.
“Communication is key, and that care partnership is a two-way street,” she said. “Effective communication needs to be frequent because MS is unpredictable.”
This means both partners must listen to each other without interrupting or judging, she said. They also should confirm that they understand what the other is saying, and give specific examples rather than speak in generalities. They should focus on how they feel, for example, saying “I feel angry” rather than “you make me feel angry,” and not blame each other or be sarcastic.
Despite all the hurdles, Weigel said she hears care partners use words like “satisfying,” “honor,” and “a privilege” to describe the work they’re doing.
“At the end of the day, even though we’re talking about a role that is often hard and can certainly result in health challenges for the care partner,” she said, “if you do put on your oxygen mask first, you can avoid that downward spiral of burnout and health issues, and truly work on a very satisfying mutual relationship of caring for one another.”