Caregiver's Guide

A caregiver is a person who provides for the needs of a relative or friend who is ill or disabled. The caregiver is often an adult daughter or daughter-in-law, and is often an older adult herself. Many caregivers are also caring for young children or grandchildren as well. The person being cared for may need help due to mental illness, memory problems, physical illness or injury, or some combination of these.

A caregiver's job can be very rewarding but may also be frustrating and stressful. Most caregivers are not specifically prepared or trained for the role. It is a role some people assume very reluctantly or because there appeared to be no other choice.

You must be realistic about what to expect. The following suggestions may help:

• Get medical information so that you understand more about the person's illness, his or her limitations, what symptoms to expect, and the likely course of the condition.
• Often the person being cared for cannot control what he or she says or does. This is especially true for those with dementia, head injury, Huntington's disease, and those who have had a stroke. Reminding yourself that these behaviors are a symptom of the disease and not in the person's control may help decrease anger, frustration, and hurt feelings.
• Allow the person to do as much as he or she is able to do. Include the person in decision-making whenever possible. Give the person limited choices when you can. For example, "Do you want your red shirt or the blue one?" The person may take longer to do things without help but could also find great satisfaction in taking part in his or her own care. For example, you could seat the person in front of the sink, set out the toothbrush and toothpaste, and assist only if needed. Provide cues and directions in simple steps. He or she may need help performing tasks in the proper order. (For example, say "Pick up your coat...put your arms in...button it up," rather than "Put on your coat."
• Tell the person what to do, not what he or she should not do.

In order to cope with your caregiver role, you may want to do several things:

• Set reasonable goals to ensure the person's comfort and safety. A calm atmosphere can help foster the person's self-esteem and independence. Reminding yourself to stay calm can also decrease your own tension and frustration.
• Accept that goals and care will change all the time. You must be very flexible.
• Become skilled at noticing changes in condition so you can report them to the person's healthcare provider.
• Learn how to coordinate activities, delegate tasks to others when needed, and plan for the future.
• Pay attention to your own physical and emotional health. Caregivers are often on duty 24 hours every day. There is little or no time to address your own mental and physical well-being. This can lead to illness or burnout if you do not take steps to prevent it. Remember, the best predictor of your loved one's continued well-being is your continued health and ability to care for him or her. When you take care of yourself, it is for you and for your loved one.

Here are some suggestions to help caregivers avoid burnout:

• Accept your own limitations and those of the person for whom you are caring.
• Ask other people to help you. Tell them exactly what you and the person being cared for need. Sometimes people are afraid of intruding or don't know how to offer help. If help is offered but not what you need, be honest and say so. Suggest something they can do that would help you.
• Accept help from friends and family. Schedule times when you can leave the home to relax or take care of your own affairs. Tell people what you need them to do, rather than wait for them to offer. For example, you might ask someone to sit with the person being cared for, and watch TV or read to him or her. Even if others don't do things just the way you would, as long as they do a good job, let them do it.
• Consider placing your loved one in adult day care for a few hours or days each week. The adult day care facility may even provide transportation. If the person is a veteran, contact the local Veterans Affairs office and ask what benefits are available.
• Learn to manage your own stress on an ongoing basis. You need to take time to relax. Get a good night's sleep by having someone else stay over sometimes to answer the nighttime calls of the person you care for.
• Listen to music and sing while working in the house. The elderly respond positively to music, especially to the old tunes that bring back memories. Even those with Alzheimer's will sometimes surprise people by remembering the words to a favorite song when they can't even put together a sentence in conversation. Music will often be calming when other methods fail.
• Join a caregivers' support group. Talking with others and sharing problems and solutions really helps. You are not alone in your concerns.
• Try keeping a journal. Write down your thoughts, frustrations, and anger. Journaling can be a good way to relieve stress. Also, look for positive experiences in caregiving. Your journal notes, particularly the positive things you find, can be a great source of comfort and joy later.
• It may help to look at caregiving as a way to give back many years of loving care by a parent or spouse. Know that you will not have to look back with regrets because you did all you could while the person was still alive.
• You may need to take a trip or recover from an illness. You may be able to use respite care. This may be having someone else provide care in your home, or placing the person in a nursing home. The move can be temporary for a few days or a few weeks.
• In some cases, the care required by the person is too great and permanent placement in a nursing home may be required. Placing your loved one in a nursing home may be the most loving thing you can do. It is likely to be emotionally difficult, but still the best choice for you to be able to continue a loving relationship. One of the greatest risk factors for elder abuse is an overburdened caregiver who has little support.
• Contact your state Division on Aging agency about counseling, social work services, and home health/chore services. Call the National Eldercare Locator hotline (1-800-677-1116) for help locating community resources for seniors including benefit issues, nursing homes, and legal help.
• Don't forget to include children to help in the care. They can do chores for you, play cards or games with the person being cared for, or just talk with him or her.
• Have regular family meetings for sharing feelings and information. If possible, include the person being cared for in these talks. Use this time to make plans and to improve communication and cooperation among family members.
• Use other services available in the community:
  • Nursing homes may offer respite beds where you can place the person you care for on a temporary basis (usually less than 2 weeks) while you take a vacation or just get time off for yourself. This is especially good for a weekend getaway or other family events such as weddings that the person you care for cannot attend. These stays usually must be privately paid for and require a doctor's orders.
  • Churches and other organizations may have volunteers to give you several hours off or provide other services.
  • Home health agencies may have certified nursing assistants or homemaker aides you could hire to stay with your loved one from time to time.
  • You might want to contract with a geriatric care manager. Geriatric care managers can assess needs, arrange for services in the home, help with financial management, and even take the person to medical appointments for you. They are experts about the services available in their communities. No services are provided that you do not agree to. You can use their services one time, for a short time, or on an ongoing basis. The local Agency on Aging or Eldercare Locator can help you find geriatric care managers.

The caregiver's role requires a lot of time and energy. But there can be great satisfaction and joy in keeping loved ones at home and making them a part of family life. The key is keeping a balance between giving to another and caring for oneself.