The Caregiver's Role

Severe heart and lung disease once killed people very quickly. New medications and better symptom management have improved prognosis, and many people now live for five or more years after diagnosis. Even so, CHF and COPD are eventually fatal illnesses with an unpredictable course. Most people with serious heart disease or chronic obstructive pulmonary disease have episodes of serious crisis, such as lung infections, shortness of breath, or retention of fluids, and then long periods of stability in which nothing seems to change. However, over time, symptoms worsen and the person eventually dies.

Most people with advanced CHF or COPD reach a point at which they need the help of a caregiver to accomplish tasks they can no longer manage alone. Family caregivers may be spouses, adult children or other relatives, or they may be good friends or long-time companions. In some cases, family caregivers live with the patient. Many caregivers, however, do not - and rely on friends, neighbors, and paid help to assist with care for their loved one. Regardless of the arrangement, family caregivers need to have information about the patient's illness, current treatment, and treatment preferences. If you are a primary caregiver, be sure to share this information with others who care for your loved one.

Help for Caregivers

Living with uncertainty is difficult. If you live with or care for a CHF or COPD patient, you can help him manage the disease by paying attention to certain symptoms, following some basic guidelines, and staying in touch with the health care team. Caregivers can do many things to help their family members maintain a good quality of life. Caregivers also need to watch out for their own emotional health and physical well-being.

Start with the basics. Ask the doctors and nurses: What will my loved one need? How can I help?
Consult a social worker or case manager, especially to understand Medicare and Medicaid rules and what facilities and services might be available.
Use a support group. Even if a caregiver is a little uncertain about meeting with others, try it a few times. Most people find it enormously helpful to hear how others have met challenges and to share stories with others who have really "been there."
Get information from the relevant national organizations. All kinds of good information is posted on the Internet, and a librarian can help you get it if you don't have access. Some groups also have toll-free phone numbers.
Contact a local hospital or hospice to locate support groups and special services that they might have for people who face similar challenges.
Do some research, either in the library, on the Internet, to get additional information. Try to become something of an expert on the particular illnesses affecting your loved ones.
Call on family and friends - don't do it all alone.

Adapted from Helping Yourself, Help Others, by Rosalynn Carter with Susan K. Golant

How will I know if things are getting out of control?
Caregivers can find it difficult to keep some perspective on what is happening. Although caregiving is often stressful, most caregivers find ways to manage and do well. But some caregivers stay in situations where they cannot possibly give good care, where their loved one's needs are overwhelming. If you find yourself feeling more and more exhausted, depressed, angry, and unable to sleep or eat well, you should look for more help. If you feel that there is no one on whom to call for help, discuss your concerns with your loved one's doctor. Many caregivers experience periods of terrible isolation. This isolation can be a symptom that you are overwhelmed.

I feel overwhelmed but don't know what to do.
Frequently caregivers do not maintain connections with the rest of the community. Often, re-connecting with friends helps. If you were active in a church or social organization or are close to neighbors, ask friends for help. Most people are happy to pitch in and offer encouragement, if they have been asked. Isolation can really sap your self-esteem and your ability to reach out for help. If at all possible, join a support group and get together with people who are "in the same boat." Even if you have to hire a sitter for a few hours or bargain with a neighbor for help, try hard to get a break and get out in the world.

Where can I find a support group?
Ask around. Try your doctor, nurse, and social worker. Try hospitals and nursing homes in the area. Call national organizations to ask how to contact a local chapter. (There are national resources listed at the back of this manual.) Check with your local Area Office on Aging, which may have a list of a variety of help that is available to the elderly; those services are often available to younger persons also. Call your church or other religious institution. Call other religious institutions that are geographically close even if they are not associated with your religious tradition. A support group at any church or synagogue is usually quite welcoming to persons of all faiths. Then, try it out a few times. If you don't find it supportive, move along and try something else. Some people are finding a great deal of support by joining in chat rooms or electronic mailing lists on the Internet. If you do this, be careful: it is hard to know whether the information being given is honest or accurate.

Rest and Renewal Tips for Caregivers

Hire a sitter or an aide for occasional events or on a regular basis.
Arrange for other family members or friends to provide care.
Use a nursing home or assisted living facility for planned vacations of a week or more.
Use a day hospital or adult day care.
Ask a family member or friend to take over some routine responsibility, such as paying bills, taking your loved one for a daily walk, giving a bath and shampoo.
Change your expectations for yourself: let the housework go more than you like, for example.
Meditate or pray.
Recognize that for some people, nursing homes or assisted living facilities are the best option.

Keywords: home caregiving, home caregiver, home caregivers