September 26, 2013

Caregiver Care Done Right

Most people enter caregiving as amateurs and forget about what they may need to be quality caregivers. Some continue and become embroiled in the fight for their own health and often develop major depression. The better caregivers have realized that things happen beyond their control, consult with others early, accept help from friends and neighbors, and develop a relaxed but vigilant style of caregiving. These are the people that make great caregivers.

This article in WebMD covers caregiver stress and depression, both of which are real problems for caregivers. If you are providing near end of life care, or care for someone with a chronic painful condition, be aware that the rewards for this caregiving are real and can vary greatly.

Stephen Zarit, PhD, professor of human development at Pennsylvania State University, has been studying caregivers for more than 30 years. He finds that 40% to 70% of caregivers are significantly stressed. Zarit also says that about half of these seriously stressed caregivers “meet the diagnostic criteria for major depression.”

Psychologist Michael Williams, senior program associate at Wellness House, a caregiver support center in the Chicago area says caregivers seldom realize they are becoming depressed. He also states, "Depression builds over time due to the physical and emotional symptoms the caregiver experiences,"

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

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.”

It is important to recognize that the stress you are experiencing can sometimes lead to depression. This is the first step to preventing it and burnout from happening. Then take the second step and find a palliative care team's social worker or mental health professional. Talk about your feelings, frustrations, and fears. This talking will help you understand what is happening to you and the person in your care. When caregivers understand that they are not in total control of the situation, this alone can bring on a great sense of relief. This will also allow the caregiver to have goals that are more realistic.

I will quote this as it contains important information.
In addition, to keep depression at bay:
  • Maintain a life outside of caregiving. Stay connected to friends. Don't give up your daily routines.
  • Maintain your health. Get regular check-ups, eat a balanced diet, and exercise. "It wasn't until I was hospitalized that I started thinking about my own health. That was a real wake-up call," says Nancy Knitter, who is caring for her husband with Parkinson's disease in their Rochester Hills, Mich., home.
  • Exercise. It un-kinks tense muscles, revs up the cardiovascular system, and floods the brain with feel-good chemicals, such as endorphins.
  • Use simple de-stressing techniques: deep breathing, muscle relaxation, meditation, and self-massage. And laugh. "People don't think of humor as a way to cope with stress, but they should," says Irv Ginsburg, of Ooltewah, Tenn., who cared for his wife, Nada, while she had brain cancer.
  • Join a support group. In support groups, you validate your role as caregiver, voice your fears, vent your frustrations, and learn coping strategies and techniques. Hospitals and most disease-specific organizations sponsor groups. If you can't get out to a group, many organizations sponsor online support groups, and the Veterans Administration has a free caregiver support line (855-260-3274).
  • Ask for help from the palliative care team, family, and friends. Delegating lessens stress and provides ways for others to show they care. "People want to help, they just don't know what needs doing," says Helene Morgan, MSW, clinical social worker in the pediatric palliative care program at Children's Hospital Los Angeles.
  • Use respite care. Organizations -- home health agencies, adult day care programs, nursing homes, faith groups, Area Agencies on Aging, the Veterans Administration -- and friends can provide short breaks that lessen stress and allow batteries to recharge. "Using respite care didn't just help me with the caregiving, it helped my wife and me have a social life."

Some of the above points are covered in three prior blogs - here, here, and here.

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