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Caregiver Care: Managing Stress, Depression

Whether you are providing palliative care for someone with a painful chronic condition or for someone actively dying, the rewards that come with caregiving are real and varied.

According to a study at the Johns Hopkins School of Public Health, most caregivers say they developed a better relationship with the person they cared for, gained a heightened appreciation of life, found hidden strengths, and felt a sense of accomplishment.

When Norton, OH, residents Mark and Dalia Spisak decided to care for Dalia's father, who had congestive heart failure and dementia, Mark put his career on hold. Working with the local palliative care service, he became his father-in-law's caregiver.

"This was something my wife and I needed and wanted to do. When we looked back, we didn't want to have any regrets about his care."

At the same time, the responsibilities and challenges that come with caregiving are also real, varied, and stressful.

Caregiving: How Stressful?

Stephen Zarit, PhD, professor of human development at Pennsylvania State University, has been studying caregivers for more than 30 years. He says that between 40% and 70% of caregivers are significantly stressed.

About half of these seriously stressed caregivers "meet the diagnostic criteria for major depression," he adds.

Recognizing Caregiver Depression

Caregivers may not realize they are becoming depressed, says psychologist Michael Williams, senior program associate at Wellness House, a caregiver support center in the Chicago area.

"Depression builds over time due to the physical and emotional symptoms the caregiver experiences," Williams says.

"You don't become depressed because of the symptoms; you become depressed because they are extreme and persistent," says Philip Higgins, MSW, director of palliative care outreach at Boston's Dana Farber Cancer Center.

Symptoms of major depression include:

  • Sad, anxious, or "empty" feelings
  • Feelings of hopelessness or pessimism
  • Irritability, restlessness, and anxiety
  • Feelings of guilt, worthlessness, or helplessness
  • Loss of interest in once pleasurable hobbies or activities, including sex
  • Fatigue and decreased energy
  • Difficulty concentrating, remembering details, and making decisions
  • Insomnia, waking up during the night, or excessive sleeping
  • Overeating or appetite loss
  • Persistent aches or pains, headaches, cramps, or digestive problems that do not ease, even with treatment
  • Thoughts of suicide or suicide attempts

People caring for a loved one with a terminal illness should add "feelings of anticipatory grief" related to a sense of impending loss to the list, says Ruth Steinman, a psychiatrist at the Abramson Cancer Center at the University of Pennsylvania in Philadelphia.

"This is a symptom where a palliative care service can be especially helpful," Steinman says.

Handling Caregiver Depression, Burnout

Recognizing that the stress you are experiencing can sometimes lead to depression is the first step to preventing it -- and burnout.

To take that step, talk about your feelings, frustrations, and fears with the palliative care team's social worker or mental health professional. Talking helps you understand what's going on for you and for the person in your care. It helps you come to grips with the fact that you are not in total control of the situation.

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