Caregivers Feel Helpless, Need Help

Home Health Agencies, Social Workers Can Help Lift Family Caregivers' Burden

From the WebMD Archives

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."

Suzanne Mintz, president and cofounder of the National Family Caregivers Association, has suffered four bouts of depression during the three decades she has taken care of her husband, who has multiple sclerosis. Although he is in a wheelchair, he works every day. But he needs help with the basics of daily life -- personal hygiene, etc., she tells WebMD.

"You have to be aware of what's going on with yourself," she advises. "If you're sad, blue, not sleeping, not eating right, you are probably depressed. One thing depression does is rob you of initiative and the ability to make good decisions. Once you start spiraling into it, you don't know you can pull yourself out without help. That's why it's so important to recognize signs of depression."

Depression can compromise your ability to be an effective caregiver, she says. "That's the message caregivers will listen to." Also, family members and friends should be aware of depressive symptoms in a caregiver.

"Getting help helps," Mintz says. "Being a caregiver is more than a one-person job. Get beyond the pride and the feeling that you're supposed to do this all yourself. That just isn't the case. If you're caring for someone bigger than you are, who needs multiple procedures, someone with dementia, you need help. You may be caring for kids, have a job -- multiple responsibilities, being tugged in so many other directions. It isn't realistic to think you can do it all alone."

Her suggestion: If you're caring for a senior, contact your area agency on aging. Contact other local volunteer chapters, like the American Cancer Society, Multiple Sclerosis Society, and Alzheimer's Association. Contact your county office of disability and aging. Contact your church.

"This is research someone else can do for you," Mintz says. "Let them make the phone calls, then report back to you. That's a huge benefit to know your options."

Also, if your patient has been hospitalized recently, talk to the hospital social worker or discharge planner. "They should know about these things," she says.

Other studies have shown that depression is very, very high among family caregivers -- some 60% experience depression, Mintz tells WebMD. "Exercise helps to prevent depression. But people need to realize depression is an illness, it's an issue of brain chemistry. Getting depressed, getting help for depression -- neither is a sign of weakness."

Show Sources

SOURCES: American Journal of Geriatric Psychiatry, May-June 2003. Elizabeth Bradley, PhD, professor of public health, Yale University School of Medicine. Suzanne Mintz, president and cofounder, National Family Caregivers Association.
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