Who’s Caring for the Caregiver?

We have long realized that patients with long-term illnesses such as cancer or Alzheimer’s Disease go through phases of inevitable decline that require the medical team to continually adapt treatment to meet their changing needs. Through my work with caregivers who oversee the daily care of family members with such serious illnesses, I have found that while the changing medical and physical needs of the patient are anticipated and met, the concomitant change in the needs of the caregiver are often overlooked.

In some cases, a family member, usually a spouse or daughter, is the primary caregiver. In others, home healthcare professionals (overseen by a family member) provide the direct, daily care. In both situations, there is a significant level of stress felt by the caregiver/family member. To sustain physical, mental, and spiritual health, caregivers must recognize 1) the need for self-care, and 2) that the self-care strategies that may have served them well in the initial phases of the loved one’s illness need to be reassessed and likely changed as the illness progresses.

Caregivers are often very observant of the changes in their loved one’s mental, physical, and spiritual health. At the same time, they may not be attending to the significant changes that are occurring in their own health. Failure to recognize the inevitable increases in stress can lead them to feel they are becoming less competent, less patient, less compassionate. Caregivers report increased feelings of being overwhelmed and a diminished sense of confidence in their ability to function well. Failure to address these issues places them at a greater risk of illness and reduces their ability to provide the care that their loved ones need.

Stress
Prolonged stress leads to increases in cortisol and other stress-related hormones that can depress the caregiver’s immune system making them more prone to health problems. Caregivers often live with interrupted sleep as they respond to a patient’s needs during the night. Exhaustion and an ongoing sense of loss and grief can also contribute to depression and a sense of hopelessness. Since people often stop visiting, loneliness can also become an issue.

In my work, I help caregivers take a closer look at the state of their physical, mental/emotional, and spiritual health. What strategies are they using to help themselves sustain health in all these areas? Which strategies are working well, which are not? What adaptations would be needed in their self-care if the patient were to decline further?

The specific components of a self-care plan vary for each person. However, there are several insights that can guide caregivers in developing flexible self-care strategies to help them navigate this difficult journey with compassion for themselves and for the person who is in their care.

Interdependence and the “Fresh Water Well”
Among the many reasons that caregivers do not give sufficient attention to their own self-care is their failure to fully appreciate the profound interdependence that exists between themselves and the family member. One way to imagine this interdependence is by employing the “fresh water well” metaphor.

To create a fresh water well, one must dig deep into the earth to tap an underground water reservoir. The reservoir is continuously fed by underground streams that are, in turn, fed by rainfall and snow melt. A well with a deep reservoir can provide fresh water to sustain the lives of families and whole communities for many years. However, they cannot function in isolation. They need to be fed by streams and other underground resources and if those dry up, the deep well ceases to provide water.

The “fresh water well” for caregivers is physical, mental/emotional, and spiritual energy. If the energy, like the well, ceases to be fed or replenished, it gets depleted and eventually dries up, leaving caregivers with the inability to provide strength, patience, compassion, and competence.

Self-care, in this sense, represents the ways in which caregivers tap into their own “deep reservoirs of fresh water” that keep them physically, mentally, emotionally, and spiritually healthy. This does not mean that the stress of caregiving evaporates; it means that they, at least, are paying attention to what is required to continue caregiving to the best of their abilities, for as long as necessary.

Guilt
A factor that often complicates caregivers’ willingness to engage in adequate self-care is guilt. Many caregivers report that they feel they should not go out to eat, spend time with close friends, go to the movies, or participate in groups away from home because their loved one is unable to do those things. Sometimes, caregivers do not have the confidence that the person who will be with their loved one is as capable or as in-tune with their loved one as they are. They feel guilty enjoying themselves or getting help for themselves personally when the one they are supposed to be caring for is suffering. Such guilt can be debilitating and self-defeating.

If caregivers think deeply about the need for their own reservoirs to be continuously fed, they may be able to release the feeling of guilt and realize that they are serving their loved one by taking care of themselves. This is not rationalization or self-justification; it is reality. When caregivers are in good physical, mental/emotional, and spiritual health, they will be able to properly provide the intended care.

Alternatively, there are caregivers who are quick to engage in outside activities because they do not want to take care of their family members. They may feel resentment, anger, or feel being in (or having been placed in) their situation is unfair. If guilt emerges from these feelings, it may be an honest reflection of deep underlying conflicts that need to be addressed with a counselor or therapist. Moreover, expecting what is “fair” is ill-advised. All families experience illness, death, reversals of fortune, and/or other disappointments. Mental/emotional health emerges from the ability to face reality as it is, not by clinging to ideas of what we wish it were or think it should be.

Recognizing the state and degree of caregiver-patient interdependence will prompt caregivers to accept the need to assess the adequacy of their own self-care on a periodic basis. The specific forms that self-care takes will vary for each individual.