Caregiver's Guide: Brief Version

As a caregiver, you are taking care of a relative or friend who is sick or has physical or mental health problems. Being a caregiver can have many rewards but it may also be frustrating and stressful. Most caregivers are not prepared or trained for being a caregiver. You may have some concerns about taking on this role.

Caring for the person

It's a good idea to be realistic about what to expect. Here are some suggestions that may help.

Find out as much as you can about the medical problem the person has. Ask about:

• The causes of the illness or injury.
• What to expect now and in the future.
• What the person is able to do safely and what the person cannot do.
• Things to look for that mean something is wrong.

Be patient if the person cannot control what he or she says or does. This may be especially true for people who have:

• Dementia.
• Head injury.
• Stroke.

Let the person be as independent as he or she can safely be.

• Let the person help make decisions if he or she is able.
• Give simple choices when you can. ("Do you want your red shirt or the blue one?")
• Let the person do things for him or herself when possible. For example, you could seat the person in front of the sink, set out the toothbrush and toothpaste, and help only if needed.
• Give directions in short, simple steps. 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 instead of what he or she should not do.

Make sure the person is safe and has what he or she needs.

• Be flexible and know that the person's needs may change.
• Watch for changes. Talk to the healthcare provider about changes that you see.

Caring for yourself

You may be on duty 24 hours every day. You may have little or no time to take care of yourself. This can lead to burnout. The best way to take care of your loved one is to take care of yourself. When you take care of yourself, it helps you and your loved one. There are many things you can do to cope:

Do not put too much pressure on yourself.

• Know that you can't do everything yourself.

Get the help you need.

• Ask friends and family to help so you can take time for yourself and take care of your own business. Don't wait for people to volunteer.
• Tell people how they can help. Be specific. For example, you might ask someone to sit with the person and watch TV or read aloud. Or someone can help with bathing, dressing, or taking the person out for a ride. Even if others don't do things just the way you would, as long as they do a good job, let them do it.

Think about using adult day care programs.

• Find out what services there are in your community. Contact the Area Agency on Aging or ask your healthcare provider.
• Think about having your loved one at an adult day care program for a few hours or days each week.

Take care of your own health and feelings.

• Take time to relax.
• Ask someone else to stay overnight from time to time. Let that person take care of nighttime needs. That way you can get a good night's sleep.
• Listen to music or sing while you work in the house. Music can be a lift for you and the person you are caring for.
• Join a caregivers' support group. It helps to talk with others and share problems and ideas. You are not alone.
• Try writing your thoughts down in a notebook. This can help you let off steam when you are upset. Write about funny, kind, or tender moments, too.

Think about your other family members.

• Make plans and work together as a family so everyone gets at least some of their needs met.
• Let children help in the care. They can do chores for you or play cards and games with the person you are caring for.
• Have family meetings often to share feelings and information. Let the person being cared for take part in these meetings.

As a family, look for the good things in caregiving. It may be a way to return many years of loving care by a parent or spouse.

You may need a vacation or time off for yourself.

• Nursing facilities may offer respite beds where you can place the person for awhile (usually less than 2 weeks). This is especially good for a weekend getaway or for other events that the person you are caring for cannot attend.
• Churches, synagogues, and other groups may have volunteers to help you out.
• Home health agencies may provide nurses, nurses' aides, or homemakers who can stay with your loved one from time to time.

Plan for the future.

• Contact your state Division on Aging for referrals for counseling, social work services, and home health services.
• Call the National Eldercare Locator hotline (1-800-677-1116) for help in finding resources for seniors. This includes benefits, nursing facilities, and legal help.
• In many cases, when the burden of caring for the person is too great, your loved one may need to live in a nursing facility.

The caregiver's role takes a lot of time and energy. But there can be great joy in keeping your loved ones at home and making them a part of your family life. The key is keeping a balance between caring for them and caring for yourself.