Who takes care of the caregivers? I often hear nurses speak of "down time" or "off time" when referring to the time after their tour of nursing duty is completed and they are ready to rest, recharge, and be away from the caregiving situation until their next scheduled shift. For the most part, nurses and health care professionals have developed mechanisms for coping with the stresses associated with caring for another human being but for some it is difficult to leave the case behind at the end of their shift.

What forces linger in the mind and heart of some nurses that make them feel "compelled" or "obligated" to remain on duty caring for a particular individual a majority of the time? This desire to please or become more involved in the case, even when not actually on duty or giving direct care, can lead to nurse burnout. This syndrome can be dangerous for the caregiver as well as the patient receiving care. Fortunately, most nurses are aware of the warning signs of burnout and have both formal and informal support structures that they can utilize. These include classes to teach them coping mechanisms, nursing support groups, and specialized groups such as hospice who can provide respite care.

That is good news for the nurses, but what about all of the unlicensed and informal caregivers that are also providing care? According to the American Family Caregivers Association, more than 25 million people are in a caregiving role. That translates to about 10% of the adult population! Where can this group turn to receive answers to their questions and help with their needs?

Often these informal caregivers are simply kind-hearted people who become involved in the caregiving role simply by helping a neighbor or relative with their grocery shopping, assisting them to and from doctor’s appointments, and other routine tasks. The duties and responsibilities of the informal caregiver increase as the patient’s need for assistance increases due to illness, loss of mobility, or limited financial resources. Often these patients have no designated guardian and no one else that they can call on for assistance. The informal caregivers don’t usually receive any compensation for their help and are often overlooked as a part of the health care system.

A survey conducted by Caregivers, Inc. in 1997 revealed that 64% of the respondents were providing 40 or more hours of care each week for an elderly relative. The unfortunate fact is that most of these caregivers work alone and receives no support from other sources. Their burnout level is very high. Another survey conducted by the American Family Caregivers Association, showed that 67% of these caregivers reported feelings of frustration, 36% sadness, 35% anxiety, and 43% isolation. 76% of them received no consistent help from other family members. Of the caregivers, 82% are females. They tend to be married, employed, and between the ages of 36 and 65. 80% of the care is provided in the caregiver’s home and 8% in the care recipient’s home.

Signs that a stressed out caregiver may exhibit include regularly being on the verge of tears, nervous habits (chain smoking or nail biting), over reaction to common problems, and becoming overwhelmed by the tasks at hand.

To lessen the feeling of stress and prevent burnout, one should:

1. Decide when and how often you can help.
2. Assess your expertise. Seek instruction, training, and advice from the physician, nurses, or Home Health Care Agency involved in the care.
3. Make and take time for yourself and your family and set aside a portion of time for the caregiving (if possible).
4. Know that you are doing your best to care for another human being. The giving of one’s self is the best gift that one person can give to another.
5. Seek out resources for support, counseling, venting, and medical needs or supplies.
6. Be assured that feelings of guilt and anger are a normal part of caregiving and that sometimes the demands put upon a caregiver are not realistic.

Here are some suggestions that you can put in place for an elderly or ill relative now to make future caregiving an easier road. Prepare a durable Power of Attorney. Have a will executed and signed. Have a Medical Proxy named and provide the physician in charge with copies of the documents. Investigate life care options and the cost of long-term care. Get copies of the health care benefits available for the person and cards with the insurance carriers information including policy and phone numbers.

For more information on caregiving you can contact the National Family Caregivers Association, 10605 Concord Street Suite 501, Kensington MD 20895, or call them at 1-800-896-3650.