Caregiving is a special skill that some choose to develop professionally, but one that others learn out of necessity.
According to the Caregiver Action Network, there are 65 million family caregivers across the country. Nearly one-third of the adult population is providing an average of 20 hours of care per week. That’s an extensive, unpaid job, one that’s vital to protecting the health and safety of our loved ones, especially those with multiple sclerosis.
MS is a progressive disease that can cause significant physical disability and manifests with a broad range of symptoms, including weakness, sensory disturbance, bowel or bladder dysfunction, impaired mobility, and vision loss. As the abilities of a person living with MS gradually decline, caregivers must perform important functions to help those with MS stay more independent. Informal caregivers such as family members, friends, and neighbors help make it possible for people with MS to remain in their homes even as the need for personal assistance increases and physical and cognitive independence declines.
Caregivers have an important job, but may become highly burdened. Family caregiving, mostly unpaid, can cause emotional distress, isolation, feelings of abandonment, and economic difficulties. In contrast, however, caregiving can also strengthen relationships, improve coping skills, and encourage feelings of pride and accomplishment. Becoming a caregiver teaches you a lot about yourself and empathy.
Empathy can be influenced by motivating factors, such as the degree of suffering or disabilities experienced by the affected person, and inhibiting factors, such as the mental energy needed to remain empathetic. Mental energy and caregiver mood can directly affect the quality of care provided to the patient. If the “patient” seemingly fails to do things to help himself, it may be more difficult for the caregiver to display the empathy needed to provide optimal care.
In a recent study of caregivers in MS, researchers aimed to evaluate:
- The prevalence of negative emotional states among primary caregivers of individuals with MS
- The association between the caregiver’s empathy-related behavior and the physical and cognitive impairment of the person with MS
- The association between the caregiver’s mood or emotional status and his or her empathy-related behaviors.
They found that 30 percent of caregivers in this study experienced elevated levels of fatigue, depression, and anger. Forty-two percent of the caregivers expressed that their most elevated mood disturbance was related to fatigue-inertia. Twenty percent of caregivers reported anger, which may be related to the perceived inability to control their life or a disruption of priorities or plans. Only sixteen percent of caregivers in this study reported depression, whereas other studies have reported prevalence of depression as high as 77 percent (Pooyania, 2016).
Caregiver mood scores were not impacted by the severity of the patient’s cognitive impairment. However, increased levels of anxiety and depression in caregivers did influence their negative perceptions or overestimation of the physical impact of MS on their loved one. Researchers found that higher levels of caregiver anger and hostility were associated with fewer empathy-related responses toward the person with MS. This could suggest that caregivers were less able to provide the best care possible due to personal emotions and elevated mood issues.
It’s important that caregivers be aware of the potential burden to their own mental and physical health, which can in turn affect the health of their loved one. Just as the flight attendant safety talk suggests: put on your own oxygen mask first before you help your neighbor. Caregivers need to take care of themselves as well:
- Take care of your own health: eat well-balanced meals, exercise every day (even if it’s only 15 minutes of stretching), get quality sleep, and don’t ignore your emotions
- Take time for yourself: take respite breaks, accept offers of help, learn how to ask for help, connect with others, laugh more often, and seek support from other caregivers
- Organize and simplify: learn how to communicate effectively with doctors, organize and update medication information, and make sure legal documents are in order
Here are additional resources to assist caregivers in learning how best to care for their loved ones and for themselves:
- Caregiver Action Network
- Well Spouse Association
- Easterseals: Services for Caregivers
- AARP: Home and Family Caregiving
- Lotsa Helping Hands
See More Helpful Articles:
Pooyania S, Lobchuk M, Chernomas W, Marrie RA. Examining the Relationship Between Family Caregivers’ Emotional States and Ability to Empathize with Patients with Multiple Sclerosis: A Pilot Study. Int J MS Care. 2016 May-Jun;18(3):122-8. doi: 10.7224/1537-2073.2015-023.
Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to health care conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.