By definition, a caregiver is anyone who provides service to another to assist in making their lives easier. It might take the form of helping them with ADLs (Activities of Daily Living), such as bathing, dressing, and feeding. It may include driving, grocery shopping, house cleaning, or errand running for an elderly person. In the mental health realm, it could mean making sure the client or family member takes their prescribed medications, spends time socializing so as to avoid isolation, and gets to their therapeutic appointments.
Caregivers fall into two categories:
- Paid professionals such as nurses, aides, hospice workers, or family based therapists who visit the client at home.
- Family or informal such as parents, partners, siblings, or friends.
According to womenshealth.gov:
“Most Americans will be informal caregivers at some point during their lives. A 2012 survey found that 36% of Americans provided unpaid care to another adult with an illness or disability in the past year. That percentage is expected to go up as the proportion of people in the United States who are elderly increases. Also, changes in health care mean family caregivers now provide more home-based medical care. Nearly half of family caregivers in the survey said they give injections or manage medicines daily.
Also, most caregivers are women. And nearly three in five family caregivers have paid jobs in addition to their caregiving.”
For the one offering assistance, the responsibility of caring for another with psychological or physical health challenges can be both a labor of love and a drain on resources.
National Alliance on Mental Illness (NAMI) indicates that “1 in 25 Americans lives with a serious mental health condition. Mental health professionals have effective treatments for most of these conditions, yet in any given year, only 60% of people with a mental illness get mental health care.” That leaves family and friends struggling to assist loved ones with maintaining stability in the midst of sometimes chaotic episodes of those either untreated or with treatment-resistant conditions.
Caregivers of those with mental illness sometimes find themselves attempting to navigate a system that may feel daunting as they attempt to get insurance coverage for services, schedule appointments, encourage session attendance, secure medication, and transport to appointments.
Is There Such a Thing as Caring Too Much?
According to Dr. Charles Figley, from the Tulane University Traumatology Institute, “Compassion Fatigue is a state experienced by those helping people or animals in distress; it is an extreme state of tension and preoccupation with the suffering of those being helped to the degree that it can create a secondary traumatic stress for the helper.”
When someone is in a caregiver role, they may find themselves focused on the one receiving their attention to the exclusion of much else, including their own well-being. Some in what is referred to as the ‘sandwich’ generation are torn between caring for children and elderly relatives simultaneously. Those responsibilities, along with ‘normal’ activities such as jobs and managing a household may lead to caregiver burnout. Additionally, the one providing care may be reluctant to relinquish the role for fear of being perceived as incapable. Secondary gain may be involved as well, since most cultures place a high value on caregiving behaviors.
One such example is Delores, the caregiver for her husband who had end-stage liver disease. Their marriage was tumultuous at times because of her husband’s mood swings and sometimes uncontrolled anger, which he was unwilling to see as problematic. She had contemplated leaving, but when he received his diagnosis, she felt an obligation to honor the ‘in sickness and in health,’ part of their marriage vows. For six years, she was his caregiver—giving him injections and IV infusions when he developed infections, accompanying him to his medical appointments, and sitting at his hospital bedside. She researched alternative treatments in addition to the mainstream medical interventions he was receiving, taking care of ADLs when he was too ill to do so himself, and finally, living with him in the ICU for the nearly six-week period prior to his death. She would get by on little sleep as she maintained her full-time job and raised their young son. There were times when she reported feeling like a martyr, but she also reported a sense of exhilaration when people would commend her on her dedication.
In retrospect, Delores wondered how she maintained her own wellbeing in the midst of that challenging time. Years later, she, too, developed residual health issues that she now attributes to an entrenched belief that her role was to care for others at her own expense. She would say that she was often “burning the candle at both ends until there was no more wax left.”
Signs of Caregiver Burnout
- Uncharacteristic Irritability and impatience
- Poor sleep
- Somatic symptoms, such as headaches and gastrointestinal distress
- Reduction or increase in appetite and food intake
- Turning to substances to self-medicate
- Lack of interest in typical activities or what used to bring pleasure
- Thoughts of harming oneself of the person being cared for
- Increased illness
- Anxiety and/or depression
Ways to Replenish the Stores
- Invest in yourself: you are as important as those you care for.
- Find what rejuvenates you, such as a walk in nature, time with a good friend, a cup of tea, or a fitness activity.
- Learn to set boundaries, as you only say yes to what you have the energy to do.
- Build a support team to assist in meeting the person’s needs. Share the Care creates models for what a group approach could look like with members using their talents to provide services that include pet sitting, bookkeeping, transportation, shopping, cooking, and personal care.
- Get more sleep. Take naps, if able.
- Listen to soothing music.
- Journal about your caregiving journey.
- Vent about your feelings to someone who is willing to listen
- If you have a spiritual practice, use it.
- Get a massage or another form of body work.
- Sweat out your emotions in fitness activities, whether it is at a gym, a basketball court of a cycling trail.
- Attend caregivers’ meetings, which are available online or in-person.
- Tackle large tasks in small bites
- Give yourself permission to be human and not Wonder Woman or Superman.
Consider the oxygen mask metaphor. When on an airplane, the flight attendant offers pre-flight instructions to place the mask over your face before helping others. It may seem counterintuitive to do so, but the reality is you can’t put the mask on someone else if you don’t save yourself first.
Caregiver photo available from Shutterstock