Caregivers Feel Helpless, Need Help

May 13, 2003 -- If you're a family caregiver, this is not news to you. The daily distress your loved one experiences -- pain, trouble swallowing, bathroom problems -- takes a toll on your own emotional well-being.

Though all this may feel like your responsibility, it may be time to get help -- for your sake, and for your patient's.

A new Yale study looks more deeply at family caregivers' mental health -- specifically, at the effects on caregivers when their patient suffers frequent distress.

Severe pain, delirium, choking, vomiting -- all these can leave family caregivers feeling frightened and helpless, says researcher Elizabeth Bradley, PhD, professor of public health at Yale University School of Medicine.

Her report appears in the May-June issue of the American Journal of Geriatric Psychiatry.

"Everybody internalizes these things differently," Bradley tells WebMD. "But we found helplessness to be very prevalent, and very predictive of depression." In fact, these more-vulnerable caregivers may also be at risk of post-traumatic stress disorder (PTSD), she says.

In their study, researchers interviewed 76 family caregivers before the patient's death, and 129 within the month after death. All caregivers were considered "primary caregivers," meaning they had responsibility for nearly all the hands-on care of a loved one.

Researchers also looked at what they call "complicated grief" -- whether caregivers felt stunned, dazed, disbelief, numb, angry, or futile about the distress they witnessed. How did it affect their quality of life -- their emotional health, energy, physical health?

The burden of hands-on care was evident: 64% helped with toileting, basic hygiene, dressing, eating. The vast majority -- 82% -- did all the shopping, housework, food preparation, and transportation.

One-fifth of the caregivers felt their own health had declined within the past year. Nearly all (94%) said these health problems kept them from doing their usual activities.

Nearly one-third (30%) had symptoms of major depression.

Most family caregivers witnessed their patient suffer pain and confusion; 67% felt the patient "had had enough." They witnessed these distressing experiences "quite often," and sometimes daily, researchers write.

For most caregivers, helplessness -- rather than fear -- was the overwhelming emotion attached to their experience.

The study "demonstrates that caregivers not only experience the burdens of providing essential care to their terminally ill loved ones, but that they also extensively and frequently witness their loved ones in serious distress," researchers write. More attention should be given to these detrimental effects, they add.

If this is happening to you, "recognize that you need help," Bradley tells WebMD. "Hospice nurses take on this burden; you don't have to endure it. You may think you aren't ready to give up your responsibilities, but it makes a big difference."

Also, seek out social support, she adds. "Social support acts as a buffer in times of stress. We're saying that if you're feeling distress, don't think it's normal. Get help."