Caregiver's Guide: Brief Version

As a caregiver, you are taking care of a relative or friend who is sick or has permanent physical or mental health problems. Being a caregiver can have many rewards but may also be frustrating and stressful. Most caregivers are not prepared or trained to do it. 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 of the person you are caring for. 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 those who have:

• Dementia.
• Head injury.
• Mental illness.
• 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 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, not what he or she shouldn't do.

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

• Be flexible and know that these needs may change.
• Watch for changes.
• Talk to the doctor and other healthcare workers about any changes 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 burn-out. The best way to take care of your loved one is to take care of yourself. When you take care of yourself, it is for you and for 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 or take care of your own business.
• Tell people what you need them to do. Be specific.
• Don't wait for them to volunteer.

For example, you might ask someone to sit with the person and watch television, or read to him or her. Or someone might 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 daycare programs.

• Find out what services there are in your community. Contact the Area Agency on Aging or ask your doctor.
• Think about having your loved one at an adult day care program for a few hours or days each week.
• The person may even be able to get a ride.

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 the night-time needs of your loved one. That way you can get a good night's sleep.
• Listen to music and sing while you work in the house. Music can be a lift for your loved one as well.
• 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 down funny, kind, or tender moments too.

Think about your other family members.

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

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 other family events such as weddings that the person 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 could 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 homes, 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 home.

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.