Caregiver Guide: Caregiving

Understanding The Problem

Caring for an older person at home requires a team of people with different skills and perspectives. Doctors, nurses, social workers, and clergy all make important, specialized contributions, but family members or friends give the day-to-day care.

Your close personal relationship with the person you are caring for helps you to understand and interpret his or her feelings, wishes, and needs. You are also the first to become aware of many physical and emotional problems, the first to deal with those problems, and often are the person who carries out plans that you and other team members develop. As a team member, your job is to work cooperatively with other members of the team-both family and professional-in solving caregiving problems. To do this you need to use the four COPE problem-solving steps:

Creativity by looking for new ways to solve problems,
Optimism by having positive expectations for achieving your goals,
Planning by thinking about the steps you can take to reach your goals, and
Expert Information by asking for guidance from health professionals and people who have dealt with similar problems in the past.

Involve other family members

As much as possible, the older person and the whole family need to be involved in problem-solving. Involve other family members in planning and making decisions, as well as carrying out plans. Give them information and invite them to express their concerns. This can reduce your burden and any criticism by other family members who may not be as directly involved.

Remember that the older person is also a member of the team. His or her participation is essential for plans to succeed. It is also his or her right to be involved.

Emphasize the positive parts of caregiving

Some caregivers see their work as helping someone about whom they care deeply. Others see caregiving spiritually, as part of God's plan for them. Many feel that caregiving has enriched their lives. Others see it as a challenge and want to do the best job they can. And some see caregiving as a way of showing appreciation for the love and care they have received themselves.

Caregiving can have important benefits

Caring for an older person at home can give you a sense of satisfaction and confidence. You will discover inner strengths that you didn't realize you had. Caregiving can draw families together and can help people feel closer to the person who needs care.

You can also use your caregiving to open doors to new friends and relationships. This can happen from talking to other people who have faced the same problems, from meeting people in a support group, from meeting health professionals who showed understanding and concern, and from family members who may have grown distant but who now are drawn together because of this difficult situation.

Your goals are to:

  • Be an effective team member working with doctors, other health professionals, family, and friends in solving caregiving problems
  • Involve the person you are caring for as much as possible in your caregiving plans
  • Take care of your own needs so that you have the emotional and physical strength to be an effective caregiver
  • Call for professional help when needed

Click on each of the topics below to read more.

When To Get Professional Help

Caregiving is challenging and rewarding, but it is also very hard work. As a result, you may experience stress and need professional help yourself. Ask for help from health professionals if any of the following conditions exist.

You are experiencing moderate to severe depression

You should get professional help if you are:

  • experiencing mood swings going from periods of depression to periods of agitation and high energy
  • feeling sad most of the day, have lost interest in most of your daily activities, have difficulty paying attention to what you are doing, and have trouble making choices
  • thinking seriously of harming or killing yourself
  • recognizing early symptoms of depression from a previous experience with depression

Getting help for depression is just like getting help for physical problems. It is normal to be upset at times when caring for someone in your home for a long period of time. Professionals such as social workers, counselors, clergy, psychologists, and psychiatrists are skilled and experienced in helping depressed people. Your family doctor can also be helpful in assessing how severe your depression is and in recommending a professional to help you. Your family doctor may also help by prescribing medicine to help for short periods of time. 

You are feeling overwhelmed and not sure you can manage at home

Ask for help from your Area Agency on Aging (sometimes known as Area Office on Aging or by a similar name), social workers, or counselors who are familiar with services that are available in the community. This includes "respite care" where someone comes to the home to stay with the older person so that you can leave, do errands, visit friends, go to meetings, and get rest.

You need information and guidance about moving the older person to a nursing home or other care setting

The Nursing Home section will give you guidance on how to get information you need and what professionals to talk to about this important decision.

What You Can Do To Be A Supportive Caregiver

Involve the older person in developing and carrying out care plans

This is one of your most important jobs. It can also be the most challenging. Mental as well as physical problems may make it difficult for older people to participate in planning their care. Remember, their participation is essential. When they participate, they feel respected and are more likely to feel committed to the plan and to cooperate in carrying it out.

To help the older person participate, you have to pay special attention to what you say and how you say it. Many useful ideas for how to be understood by an older person who has communication problems-such include solutions such as, speaking where the older person can see your face, speaking clearly, speaking slowly, sitting close so you can have direct eye contact, leaning forward or nodding your head to show interest, avoiding interrupting or passing judgment, and watching for signs of fatigue or tension.

Be realistic and flexible about what you hope to communicate and agree on

If the older person has difficulty understanding you, remembering what you said, and making decisions, then you will have to simplify your explanations and the decisions you ask him or her to make. If the older person disagrees or won't cooperate with the plan:

  • Suggest a trial run or a time limit. This puts off a final decision until he or she has had a chance to try the plan.
  • Explain your needs openly. Sometimes you will need to ask the older person to do things to make your life easier or your caregiving responsibilities more manageable. Remember that not all decisions will make everyone happy. On some issues both of you will have to compromise.
  • Choose your battles carefully. Ask yourself, "What is really important here?" You can save energy by skipping the minor conflicts and using your energy and influence on issues that really count.
  • Let the person you are caring for make decisions as much as possible. If the older person understands the consequences of a decision, you should accept his or her right to make the decision. If you are concerned about safety or health, suggest only options that are safe.

Work with health professionals

Below are some practical suggestions to keep in mind when you need information and help from health professionals.

Be clear about what information you want

Get to the point as soon as possible. Make lists of questions and concerns and have the lists in front of you when talking to health professionals.

Have ready all the information health professionals may need when you call

Try to think ahead to what information medical staff may need, and try to have it ready when you talk to them about a problem. This will help the staff give you the information and guidance you need quickly.

Be firm and straightforward about getting the information and help you need

Health professionals are here to help you be a good caregiver. Make your requests with confidence so that you will get the information you need and don't be afraid to admit when you do not understand. Remain calm. Being angry is not usually helpful. Being pleasant, firm, persistent, and showing appreciation are usually the best strategies.

Use the Tips on Improving Patient-Practitioner Communication

This resource has many good ideas for how to work effectively with health professionals. Use those ideas to develop plans for getting the information you need.

Take care of your own needs and feelings

You need to be at your best to do the best job of helping. Therefore, you should pay attention to your own needs as well as those of the person you are caring for. Set limits on what you can reasonably expect yourself to do. Take time off to care for yourself and your needs and ask for help before stress increases.

Schedule positive experiences for yourself

There are three types of positive experiences that you need for good mental health:

  • Enjoyable activities with other people (examples: talking with a friend, playing with grandchildren, attending a meeting),
  • Activities that give you a sense of accomplishment (examples: cooking a special meal, exercising, helping others, finishing a project), and
  • Activities that just make you feel good (examples: watching a funny movie, playing with a pet, walking out of doors, listening to favorite music).

You should plan for each of these types of activities regularly. If you don't, caregiving may fill up all your time. This will then increase your stress and reduce your ability to give good care.

Pay attention to positive experiences

Make an effort to notice and talk about pleasant experiences as they happen during the day. It is often helpful to set aside a special time each evening when you can think about-or share with others-the good things that happened that day. Another idea that many people have found useful is to make lists of pleasant experiences. Keep these lists and read them over from time to time to remind yourself about the good things in life. After you have done this for a period of time, you will find yourself noticing good things as they happen and you'll start the day looking forward to pleasant things that can happen.

Be sure you get enough rest

If you are physically exhausted, your ability to cope with problems will decrease.

Get help from others

Don't try to do everything yourself. If you do, caregiving can wear you out, increase your stress, and interfere with your ability to give good care at home.  Support groups sponsored by hospitals and disease-related volunteer groups (such as Cancer or Alzheimer's) can sometimes be very helpful. In addition, you should ask for help from family members and friends. Try to share tasks. For example, bills can be forwarded to a family member who lives far away to relieve the caregiver of this monthly chore.

Sometimes family caregivers withdraw from family and friends, especially as their work gets more difficult. They do this because they do not want others to see their problems or because they are so busy that they don't make time to be with others. Unfortunately, some very important things are lost when you see fewer and fewer people. You lose the stimulation of thinking about other people's lives and you lose the suggestions and help that others can give. You might also forget that other people love and care about you and are willing to help when asked.

Make a list of people who can give companionship and support to you and the person you are caring for

Don't worry about how far away these people live, how busy they are, how long since you've talked to them, or even how well you know them. Make as long a list as you can to give you the most choices and practical help.

Have a list of how people could help

Have a list of how people could help. Make your list specific, so that the people you ask understand exactly what is needed. Then they will be able to budget their time and be prepared to give the help you need.

Go down your list and think what you could do to make a visit (or a phone call) pleasant and enjoyable for each person

Use these ideas when you invite them and when they visit or call. When you do this, visitors will want to come again and you will feel good about asking them to return.

Develop strategies for dealing with strong feelings

It is natural to have strong feelings when giving care over a long period of time. Following is a list of strong feelings that caregivers often have and strategies for dealing with them if they become severe.

Feeling overwhelmed

Sometimes caregiving problems build up to the point where you feel overwhelmed. If this happens:

  • Try not to make an important decision while you are upset. Sometimes you have to make a decision immediately, but usually you don't have to. Ask how long before a decision really has to be made.
  • Take time to sort things out. It is important to take some time to let your thinking become clear again. Different people need different amounts of time for this to happen. Give yourself enough time to make plans and decisions with a clear mind and a more peaceful spirit.
  • Talk over important problems with people who are feeling less stressed. If you are feeling very upset or discouraged, then ask a friend, neighbor, or family member to help. They can bring a calmer perspective to the situation as well as new ideas and help in dealing with the problems you are facing.

Feeling angry

There are plenty of reasons for you to become angry when you are giving care for a long period of time. For example, the older person may, at times, be demanding and irritating. Friends, family members, or professionals may not be as helpful or understanding as you would like. Some people feel angry because their lives have been turned upside down by taking on caregiving responsibilities. These feelings are normal. It is all right to feel this way at times. It is what you do with your anger that is important. The best way to deal with angry feelings is to recognize them, accept them, and find some way to express them appropriately.

Here are some ways that other caregivers have dealt with their anger:

  • Try to see the situation from the other person's point of view. Recognize that other people, including the person you are caring for, are also under stress. People react in different ways to stressful events in their lives.
  • Express your anger in appropriate ways before it is out of control. If you wait, your anger may lead to actions and words that you may later regret. Anger that is out of control can cloud your judgment.
  • Find safe ways to express your anger. This can include such things as beating on a pillow, shouting by yourself, or doing some strenuous exercise. Sometimes it helps to ventilate anger with someone who is "safe"-someone who won't be offended or strike back. Get away from the situation for a while and try to cool off before you go back and deal with what made you angry.
  • Try not to feel guilty about your anger. Anger is a natural response to a difficult situation. Most other people would probably feel the same way if they were in your situation.
  • Talk to someone about why you feel angry. Explaining to another person why you feel angry helps you to understand the reasons for your anger and why you reacted as you did.
  • Seek counseling from a professional. It often helps to talk to someone removed from the situation who can provide support and an objective viewpoint about your problems.

Feeling loss and sadness

You may feel sad because the person you know and love has changed. Memories of how the older person used to be may make you sad. You may feel sad because of losing "normal" things you did before this illness and because of plans that may not be fulfilled. You may also feel burdened by the responsibilities you have to bear alone. Here are some things you can do when you have these feelings:

  • Talk about your feelings of loss with other people who have had similar experiences. People who have been caregivers of older persons will usually understand how you feel. Support groups are one way to find people who have had similar experiences and who can understand and appreciate your feelings.
  • Read the Depression section. The ideas and techniques can be used by you as well as by the person you are caring for to help manage or prevent depression.

Feeling shame

You may be embarrassed because the older person looks unusual or acts odd in front of others. You may not know how to explain this to other people and you may feel bad because you feel ashamed of your own family member. These feelings are normal and common. It is all right to have these feelings. There are several things you can do to deal with them.

  • Talk about your feelings with someone else who has the same problems. That person will understand how you feel and telling the person about your problems will help put them into perspective.
  • Remember that you have a right to go into public with your family. If other people are uncomfortable with how your family member looks, they can go elsewhere.
  • Develop a simple explanation for why the older person acts in a certain way. If someone asks, then you can give an explanation you are comfortable with.
  • Don't assume that everyone will be offended. Other caring people will notice good things about the older person and will be understanding and supportive.
  • Take small, gradual steps to become more comfortable with the older person in public. Start with people you know well and who are understanding. Invite them to visit and to be with you and the older person. As you become comfortable with friends, gradually go out in public.

Feeling guilt

Many people caring for an older person at home feel guilty at some time during their caregiving. They may feel guilty because they feel they are not doing a good job of giving care. They may feel guilty because they feel angry or upset with the person they are caring for. Some people feel guilty almost out of habit. They have learned from childhood to feel guilty when something goes wrong.

Although feeling guilty is understandable, it can interfere with doing the best possible job of caregiving. Guilt makes you think only about what you did wrong, while most problems have many causes and what you did is only part of the reason for the problem. To solve a problem, you have to look objectively at all of the causes and then develop plans to deal with the whole problem. Dwelling on guilt feelings will rob you of precious energy that you need to cope with new problems.

Here are some things you can do to deal with feelings of guilt:

  • Talk to other people who have gone through similar experiences about what happened and how they felt. It is often easier to see a situation objectively when it happens to someone else, and this can give you perspective on your own problems.
  • Don't expect yourself to be perfect. Expecting perfection in yourself can cause guilt to be a regular part of your life. It is helpful to remember that you are human, and, therefore, you will make mistakes from time to time.
  • Don't dwell on mistakes. Accept mistakes and get beyond them as best you can. Forgive yourself for your shortcomings. The Caregiver Guide: Depression section has useful ideas for controlling negative thinking.

Carrying Out and Adjusting Your Plan

Problems you might have carrying out your plans

"I'm swamped with problems, so I don't have time to take care of my needs."
This is the most common reason why caregivers become exhausted. They become preoccupied with their caregiving problems and don't pay attention to themselves. You will be a better caregiver in the long run if you get help with caregiving so that you can do things that you enjoy and find relaxing.
 
"If I don't do it, it won't get done."

It may not, but is it essential? Sort out things that really need to be done. It is fine to let some things like housework slide a bit when you take on new responsibilities.

"I hate to ask other people to help me."

Start by asking for help with little things and notice how easy it is and how much people enjoy helping. If asking makes you very uncomfortable, then get someone else to ask for you.

"The person I'm caring for doesn't want other people to help us."

Suggest trying outside help for just a short time and then you can both talk over how it worked. Also, explain that you need help.

Think of other problems you might have carrying out your plan

What other problems could get in the way of doing the things suggested in this section? For example, will the older person cooperate? Will other people help? How will you explain your needs to other people? Do you have the time and energy to carry out this plan?

Checking on Progress

Start using these ideas now

Don't wait until you feel overwhelmed. It is easier to develop good caregiving habits and attitudes early before the problems get out of hand. Every week or so take time to think about how you are doing as a caregiver. Re-read this resource periodically to see if there are ideas here that can be of help.

What to do if your plan isn't working

Be realistic about what you expect of yourself

Don't expect to be perfect. Everyone makes mistakes. Most plans need to be adjusted and changed as the condition of the person you are caring for changes and your situation changes.

Consider getting help

If you cannot do the things that are essential for the person you are caring for, consider getting help or moving him or her to an assisted living facility or nursing home. The Nursing Home section has information to help you make this difficult decision.