What it Means to Be a Caregiver

You are a caregiver if you provide social or physical support to an aging relative or friend, or to a person who is disabled. Caregivers may make weekly visits to a sick mother still living on her own. They may bring a frail father into their home for care. They may arrange for services for a relative who lives hundreds of miles away.

What caregivers share in common is the fact that they take time and energy from their lives to care for someone who needs their help.

Reactions to Being a Caregiver

Caring for someone on a regular basis is a mixed experience. There are the positive feelings associated with helping others. If you’re caring for your mother, father, or spouse, there is the satisfaction of knowing you are, in some way, returning the support they once provided you.

Caring for a frail relative also has its difficulties. Most caregivers experience some of these feelings:

• A sense of isolation, of being alone with a huge responsibility.
• Worry or doubt about the quality of the care they are providing.
• Guilt that they are not doing enough.
• Resentment toward the person cared for.
• Anger at the lack of time they have for themselves and their families.
• Frustration that this is not what they had planned for this time in their lives.
• Fear about how much longer they can keep this up, given all of the other demands on their time.
• Confusion about where to turn for help.
• A sense of loss because the person they love has changed so much.
• Physical fatigue.

Any of these responses, either alone or in combination, can lead to a sense of being overwhelmed. This is both common and understandable. It is important to monitor yourself and be alert to signs of caregiver exhaustion:

• Feeling drained of time and energy.
• Loss of sleep.
• Bottled up feelings of anger or frustration.
• Feeling trapped.
• Being reluctant to seek outside help.
• Being focused excessively on caregiving.

Taking Care of Yourself

There are steps you can take to avoid or reverse caregiver exhaustion. Remember: taking care of yourself is taking care of the person who depends on you. Try some of these ideas drawn from the experiences of many caregivers like yourself:

Share decision-making

 As long as the person you are caring for is able, involve him or her in the decisions that go along with care; try to be active partners. It will help your loved one retain a sense of independence, while taking some of the burden off of you.

Remember your needs

You need time to get away from your role as caregiver, to relax and to get additional support. These needs may create feelings of conflict or guilt, but again remember: you are taking care of the person who needs you by taking care of yourself.

Anticipate needs

The earlier you discuss needs, the more time you have to explore possibilities. Then you will feel better about the choices you need to make in the future.

Understand what you are dealing with

Gather information about the specific disease or conditions of the person you’re caring for. The more you know, the better you’ll be able to plan for the future.

Involve others

Ask other family members and friends for help. People usually are willing and pleased to be asked; they just may not volunteer. Consider a family meeting to brainstorm ideas and to see how to share responsibilities.

Talk

Share with someone outside the family about your reactions to caregiving. Use a friend who isn’t close to the situation as a sounding-board.

Be flexible

Just when you think you are in control, something will change. Being thrown off balance is frustrating; try to be ready for change.

Help is Available

As a caregiver, you are never alone. There are many people—family, friends, health care professionals, community services and others—who can help:

• Adult day care provides daytime care and social activities for older adults. Programs will vary as to amount and type of care available. Some provide transportation.
• Hospice care provides support and care for terminally ill persons who choose to remain at home in the care of a relative or friend.
• Legal and financial services include help with preparing a durable power of attorney or other type of health care appointment, a living will, or assistance with financial planning, public benefits, taxes, Social Security, and disability benefits. These services can be provided by skilled volunteers or paid professionals.
• Long-term care is available through nursing homes and sub-acute care facilities for temporary or permanent care, especially during periods of acute illness.
• Meal programs offer a full range of services, including Meals On Wheels-type programs that deliver meals to older adults at home, as well as group meals served at senior centers, churches, synagogues, or schools.
• Reassurance programs provide regular phone calls to check in on elderly persons who live alone, or electronic monitoring devices that signal when help is needed.
• Rehabilitation programs provide occupational, physical, and speech therapies through hospitals and long-term care and day-care facilities.
• Respite care programs provide temporary relief for caregivers. A person comes into the home for prearranged periods of time, while the regular caregiver takes a break. Some hospitals and nursing homes have short-term, overnight onsite programs.
• Support groups provide emotional support, information sharing, and companionship for caregivers. Some groups are condition-specific, such as Alzheimer’s support groups.
• Transportation programs provide rides to and from medical appointments, day care, and other destinations.

To Sum Up . . .

You may think that you just do not have the time, talent or resources to be a caregiver. But what it really comes down to is simply “being present” for another. While many aspects to caregiving call upon a wide range of skills—cooking, cleaning, bill paying, etc.—the starting, and ending, point is focusing on another person. We may find at times that we are short on funds, skills, or time, but when caring for another, we need to be long on attention. Holding someone’s hand, pulling the chair closer to the bed, putting everything else aside—that’s the heart of being a caregiver for someone you love.

More Resources

• Care Planner, the Centers for Medicare and Medicaid Services online care decision support tool, helps assess and access support services and options.
• The U.S. Administration on Aging offers fact sheets as well as an online booklet entitled “Because We Care” with suggestions, resources, and contact information for people who are caring for an older or disabled family member at home.
• The National Alliance for Caregiving was created to conduct research, do policy analysis, develop national programs, increase public awareness of family caregiving issues, work to strengthen state and local caregiving coalitions, and represent the US caregiving community internationally. The Alliance's mission is to be the objective national resource on family caregiving with the goal of improving the quality of life for families and care recipients.
• The National Family Caregivers Association’s website offers tips, information, and support for people who are serving as a caregiver for aged, chronically ill, and disabled loved ones.
• The Alzheimer’s Association website is a good source for information on care strategies for people with Alzheimer’s and related dementias. Sections on day-to-day care, caregiver challenges and coping strategies offer valuable suggestions. The Association also offers a 24-Hour Contact Center, staffed by professionals who understand dementia and its impact. Call (800) 272-3900 with questions or concerns about memory problems, dementia or Alzheimer’s disease.

Support & Education