Data show that family caregivers suffer from poorer health than non-caregivers. In one recent national survey, 22% of caregivers reported a decline in their health and 40% reported experiencing high emotional stress related to caregiving activities (National Alliance of Caregiving and AARP, 2015). Emotional stress is highest (46%) among those with higher-hour caregiving when compared to lower-hour caregivers (34%). Approximately 50% of those caring for family members with dementia experience emotional stress. Other studies have suggested that a substantial percentage of family caregivers may meet the criteria for clinical depression(Zarit, 2006). Caregivers who are elderly suffer from fatigue, health problems, and sleep disorder. Women (often a wife or the eldest daughter) tend to be the caregiver; women experience feeling more stressed in their caregiving responsibilities than men.
Generally, researchers identify two levels of caregiver stress distinguished as primary and secondary stressors (Pearlin et al., 1990).
Primary stressors. These stressors stem from the condition of the person to whom care is being provided. For example:
- Can they take care of their basic hygiene needs?
- Can they live independently?
- Are they cognitively intact?
- Are there wandering or behavioral issues?
- Are there financial issues and strains?
The more of these primary stressors, the greater the risk for the caregiver being emotionally overloaded.
Secondary stressors. These stressors come from the caregiver’s role; such as
- Loss of a spousal relationship in the case of the person with dementia.
- Being tasked with end-of-life decisions.
- Overloaded by multiple responsibilities.
- Conflicts in work, family, caregiving responsibilities.
- Strain and worry from the “small” daily caregiver hassles, such as:
- making calls to arrange transportation.
- arranging and meeting healthcare appointments.
- picking up prescriptions.
Researchers suggest that primary and secondary stressors can lead to “intrapsychic strain,” meaning that there may be a loss of self-esteem and emotional distress stemming from the caregiving role. That distress in turn may lead to a variety of social, familial, and work conflicts.
Tertiary stressors. We add a “tertiary” or third stressor—psychological malnutrition. The toll of caregiving exerts a chronic, harmful effect; that is, its effects slowly continue and add up—sometimes with the caregivers unaware of the severity of their emotional and mental depletion. The issues that caregivers deal with present numerous psychological landmines:
- Behavioral issues stemming from dementia or severe traumatic brain injury.
- Sibling conflicts in caring for an elderly parent.
- Health care decisions; such as, placing the family member in a care facility; making end-of-life decisions.
- Financial issues such as those arising from testamentary capacity matters; costs for in-home help, skilled nursing facilities, and medications .
Caregivers are at risk for psychological malnourishment when worry, anxiety, guilt, bitterness, and sadness dominate their emotional state. These emotions drain energy and psychological reserves through emotional self-deprivation. They leave little to no room for experiencing positive emotions, such as love, gratitude, and joy. It is at this point that the caregiver is emotionally running on “empty.”
It is easy to neglect your emotional health as a caregiver. The impulse is to place your focus primarily on what your impaired family member needs. You are then likely to try and meet the needs of:
- your children or others;
- work obligations;
- addressing daily living issues; such as paying the bills, grocery shopping, cleaning the house.
You are often last on the list of addressing your needs. You may not even realize that you are psychologically malnourished. If you find yourself often:
- doubting your judgments and second guessing yourself,
- experiencing a hurried/agitated internal state, or
- feeling pessimistic, frustrated, or in conflictual or adversarial relationships with others
then you are psychologically malnourished.
In the zone of psychological malnutrition, caregivers risk compassion fatigue (Stamm, 2002). Psychologists suggest that our perceptions of the consequences of our actions lead us to feel a sense of self-efficacy (that what we are doing matters) and self-satisfaction or a lack of self-efficacy (what we are doing does not matter) and dissatisfaction. Conversely, if we do not believe we are helping others, we feel emotionally dissatisfied. In the zone of psychological malnutrition, it is impossible to feel a sense that what you are doing matters, you only feel overwhelmed. This in turn erodes self-efficacy, leading to more emotional fatigue, emptiness, and burn-out.
Burn out is a disastrous situation for a family caregiver–much more so than for a professional caregiver. You can leave your job; but, (for the most part) you can’t leave your family member. Therefore, the caregiver has to continue to provide care while in a situation of running on “emotional empty.” The zone of emotional malnutrition has some red flags:
- Chronically feeling underappreciated by others for what you do
- Feeling that what you do does not matter,
- Experiencing guilt-driven caregiving and/or self-deprivation.
The zone of emotional nutrition is characterized by the opposite: feeling good about your caregiving and feeling good about giving yourself breaks from caregiving.
Caregiving is an emotionally multi-layered experience. Helping means that caregivers believe that they are alleviating their family member’s pain—physical and emotional. It is driven by a desire to feel needed, to be given the opportunity to express compassion. There may be deeper motives; such as, inner conflicts related to duty (e.g., the marital vow of “for better or worse” or cultural values of responsibility to care for elderly parents). Caregiving may be a journey of reparation rooted in guilt for having let down the family member at some earlier point.
This emotionally complex endeavor of caregiving is both heartwarming and heartbreaking. Consequently, those of us who are caregivers for loved ones need to be vigilant about the state of our psychological nutrition and strive to “feed” ourselves healthy emotions.