Caring for the Care Provider

You Are Not Alone

Although providing care for an older adult can be an extremely lonely and isolating experience, care providers are not alone. There are now more than 18 million Americans caring for a family member. As our population grows older, more and more people will find themselves providing care for older adults.

There is some strength in these numbers -- care providers are now receiving more attention than ever before, especially in the media and among elder care professionals. In many instances, that attention has translated into greater understanding of the difficulties of the care provider's role and some practical assistance.

However, for many care providers, caregiving is still a profoundly disrupting and stressful personal experience.

The Difficulties of the Care Provider's Role

Providing care for an older adult is never easy -- and it's seldom fun. In fact, caregiving is one of the fastest ways to provide yourself with a large helping of:

Anger and Guilt;
Resentment;
Stress; and
Burnout.

Most likely, you didn't choose to become the care provider for your spouse, friend, or parent. However, now that you are in this situation, you must choose to become a care provider for a second person -- yourself. How can you reduce the negative aspects of caregiving?

Anger

Why would a care provider feel angry? There are as many reasons as there are care providers and older adults.

You may now be taking care of someone who did not take very good care of you when you needed it.
You may be the only one in the family with the responsibility of taking care of someone who cared for you all.
You may be taking care of someone you've been angry at, or disliked, for a long time.
You may be angry at the disease or decline that has made the older adult dependent on you.

This is the reality of family caregiving. Mental health professionals advise that the best way to deal with one's anger is to acknowledge it. While it is a natural reaction to try to suppress anger, (especially when you feel angry at someone who now depends on you for care), the healthiest response to anger is to admit it and express your angry feelings constructively.

How does one do that? Sometimes anger is profoundly complex and confusing. It may not be easy or even possible to discuss these feelings with the older adult. When one has been angry for many years, or when one is angry at the disease and not the older adult, it may be more hurtful than helpful to bring it up.

Try writing your feelings in a letter which you tear up and throw away. Sometimes simply articulating your anger on paper will help.
Confide your feelings to a friend. Talking about your anger with a sympathetic listener can help to release it.
Join a support group for caregivers, or talk to a family counselor. Others in a similar position or a professional can be very helpful.
Confide in your clergy member. Many people find that their faith can free them from anger.

What About Guilt?

For the family care provider, guilt and anger often go together. We feel guilty because we feel anger -- and for many other reasons.

Many care providers feel guilty because of the time they spend away from the older adult they care for -- they feel as though they can never do enough to make the older adult more comfortable, or more happy.
Some care providers experience guilt because of the time they spend with the older adult -- it takes away time they believe they should be spending with their children, or their spouse, or at work.
Some care providers feel guilty because of criticism -- either from other family members or from the older adult themselves -- who don't approve of the way the care providers are managing the situation.

There's no doubt that guilt is a heavy burden. What can care providers do to relieve some of its weight?

Lower expectations: Your own and those of others.
Understand the limits of what you can control.

You are going to make mistakes, and that's okay.

No one can manage all the details of caregiving for an older adult without ever making a mistake. Don't allow yourself or others to criticize you for making mistakes -- remember that providing care for a family member is a learning experience, and you can't learn without mistakes.

You will not be able to do all the things you did before, and people have to understand that.

When caregiving becomes a part of your life, you will have less time for other obligations. In deciding what you will have to change to make time for your new commitments, it is important that you make choices that are healthy for your. Don't allow others to second-guess your choices.

Understand the limits of your responsibility.

You cannot be responsible for all aspects of the older adult's life or situation. There are many parts of the situation that are out of your control.

Family Tensions

Changes of any kind can produce family tensions. When an older adult requires the help of a care provider, the entire family is affected. Some family members will help in a practical way; some family members, either because of distance or family difficulties, won't. Each family is unique, and each will experience its own type of tensions. Others, including the older adult, may not understand all you are doing as a care providers. Some may resent your role in the older adult's life. Or you may resent the fact that they aren't doing as much as you are.

It is inevitable that the situation will call for adjustments on everyone's part. In many families, open communication and attempting to understand each other's position can go along way toward easing the tensions.

A Word About the Older Adult's Point of View

The older adult faces some very powerful emotions as he or she becomes increasingly dependent on another person for all aspects of daily life. The older adult may be adjusting to the deaths of friends and spouse, a decrease in physical and even mental abilities, and increasing medical problems. Poor health and mobility may also be keeping the older adult from many of the social contacts (church, work, outings with friends) that have been an important part of his or her life.

Many older adults react very adversely to the loss of independence they experience as they become less able to drive, shop, and even pay bills for themselves. Older adults may experience anger, depression, and changes in their normal behavior and personalities.

Care providers can benefit from trying to understand the stresses the older adult is feeling. If your relationship with the older adult is open and candid, he or she may be able to talk to you about these concerns. Although you, as a care provider, can't solve all these difficulties, sometimes just being a sympathetic listener can help. If the older adult is not able to confide his or her feelings, your sensitivity to some of the stresses she might be experiencing can help you to relate to them. It can also help to explain some of the difficulties in her relationship with you.

Grief

One emotion that nearly everyone connected to the caregiving situation might be experiencing is grief. We commonly think of grief as occurring when someone we love dies, but in fact, any loss can cause us to grieve. As someone we love changes, or our lifestyle changes, or our family relationships evolve, we may feel loss and grief. It is important for everyone in the caregiving family to recognize their feelings of sadness, helplessness, resentment, anger and guilt as part of grief, and to allow themselves the grieving process.

For care providers to grieve for the changes in their lives and in the lives of the older adult they care for, they must:

Acknowledge and accept the reality of their losses, including a change in the family member they have always known.
Talk about painful feelings, especially with someone who has been through a similar experience.
Remember your faith and the meaning you find in the world around you. This can bring you comfort.

Ways to Reduce the Stress

In today's fast-paced world, stress is everywhere. A large part of today's stress is generated by the many parts of modern life over which the individual has no control. Studies have shown that the less control a person believes they have in a given situation, the greater the stress they feel.

There are few situations where this lack of control is more obvious than in caregiving. The care provider is suddenly thrust into a role that is entirely new to him or her, where the care provider's schedule, job, and family life are subject to constant disruptions because of the older adult's needs. No one can predict the direction the older adult's health will take. How can you cope? By learning a few survival strategies, and by taking care of yourself.

Live By These Rules to Reduce Stress

Talk about your feelings with friends or members of a support group.
Learn the limits of your endurance and strength -- set priorities. Don't push yourself. Take a "time-out" when you are over-stressed and tired.
Don't allow the older adult or other family members to treat you in a manner that is unacceptable or inappropriate. Don't allow anyone to manipulate you through guilt or anger.
Address problems promptly before they become too big.
Ask for help when you need it, and be specific.
Seek advice from professionals and don't worry about pleasing everyone else. Contact your family doctor, pharmacist and lawyer for accurate information.

Avoiding Burnout

Burnout is a very real concern for care providers who are trying to add the many demands of caregiving to their lives. Successful stress management can go a long way to avoiding burnout, but there are some additional methods that can help.

Respite Care

Respite care is a planned break from caring for an older adult. One important thing about respite care is to initiate it before you reach the crisis point. There are a large variety of formal and informal resources for respite care.

Call upon family members, friends or neighbors to stay with the older adult while you nap, visit friends, or see a relaxing movie.
Members of your church or another social group may help you.

You can also obtain respite care through:

Home Health Agencies: A home health aide can come in for a few hours or more to provide you with a break and can assist the older adult with personal care or other chores.
Adult Day Centers: Centers will often provide respite care for as little as one day a week.
Community Based Residential Facilities (C.B.R.F.s): Older adults can stay in a CBRF for a period of time while families rest or go on vacation.
Nursing Homes: Investigate the possibility of having the older adult you care for stay in a nursing home for a short period of time.

Sharing the Responsibility

Which caregiving duties can others help you with? Arrange to have your teenager do your parents' grocery shopping or yard work this week. Could a sibling help Mom with this month's bills? Hire a cleaning lady to clean your parents' place.

Ask your brother to call to check on your mother a few evenings a week so you can take your phone off the hook.

Managing Your Own Health

Sleep

Are you getting enough sleep? Many care providers don't. Here are a few symptoms of sleep deprivation:

Five or fewer hours of sleep per night.
The vast majority of adults need at least 7 hours of sleep nightly.
A noticeable decrease in your performance or mental ability.
As you evaluate your abilities to perform daily tasks, don't automatically blame other factors (like stress or boredom) for your reduced efficiency.
Moodiness and irritability.
Consistently short-changing your sleep needs.
If you have made a habit of ignoring your body's signals that you need sleep, you may well be sleep-deprived and not even know it.
Your worries and responsibilities won't go away when you get more sleep, but you will be better able to deal with and manage them.

Take these steps to avoid sleep problems:

Think of sleep as productive! Without properly charged "batteries," you won't be able to do your best as a care provider, a spouse, a parent, or an employee.
Don't be surprised if medical professionals don't immediately identify sleep deprivation as a health problem.
Try to identify the factors that are causing your reduced sleep. Correct the problems when you can.
Is the older adult you care for waking in the night needing help? In order to get a good night's sleep, you could ask a friend or relative to "cover" for you one night a week so you can sleep uninterrupted.
Avoid the habit of pushing bedtime back further and further, as you stay awake to finish just one more task. You must allow yourself the sleep your body needs.

Take care of yourself, emotionally and physically.

Visit your own doctor on a regular basis, and inform him or her about the caregiving situation. Your doctor is an excellent ally in your efforts to take care of the care provider -- YOU.

Take care of yourself, emotionally and physically.

If it would help, seek counseling for yourself and for the older adult. If they won't go, go yourself.
Congratulate yourself for what you are able to do -- don't criticize yourself for the tasks you couldn�t finish. Reward yourself.
Maintain the parts of your life that don't involve the older adult, just as you did when he or she was healthy, and make a life for yourself that will sustain you when the older adult no longer needs your help.
Allow yourself to get angry, be depressed, and experience other difficult or "unacceptable" feelings.
Expect to receive consideration, affection, forgiveness and acceptance from the older adult if you are able to offer these qualities to him or her.
Take pride in what you are accomplishing! Applaud yourself for the care you are giving and the value you are adding to the life of the older adult.
Pay attention to your body -- although they may seem like releases, too much junk food, too much alcohol, smoking and too little exercise will make caregiving harder in the long run.
Make time to do the things you really want to do -- regardless of whether or not anyone else thinks they are �productive.� Never neglect the things that give you a sense of fulfillment and purpose.
Laugh when the mood strikes you -- even if no one else thinks it�s funny. Humor is a natural and healthy way to release stress.
Nurture the deep, lasting, and intimate relationships in your life. The fun, love and honesty of these relationships are essential to your well-being.
Express your feelings openly and honestly.
Change anything you can which will bring you greater satisfaction. Don't think of yourself as "stuck."
Hold positive images and goals in your mind.
Try to identify and remember the spiritual and emotional rewards of caregiving. Try to see the experience of caregiving as an opportunity for growth and learning. See your life as what you make it.

Little Rewards You Really Do Deserve

And finally, when all else fails, and NOT every day, go ahead and indulge in a tasty treat.

Communication

"It's so hard to talk to Mom now. I can't think of anything to say that would interest her. . . She never has any news, her days are all pretty similar -- and my daily life is pretty dull, too, now that I'm so busy managing all her affairs and my own family."

Communication always seems to be more difficult when a family is in crisis. And caregiving is no exception. Honest, open communication can be difficult, but is usually the best way to get through the complex emotions you all are facing and to accomplish what you need to. Holding feelings inside will only build frustration and resentment and may result in ugly encounters when the pressure builds to an explosion.

How To Visit

Many adult children stop visiting their elderly parents when communication runs into trouble. Here are some hints for productive visits with elderly parents, whether living alone or in a nursing home. These tips are reprinted from ElderCare: Coping with Late Life Crisis, by James Kenny, Ph.D. and Stephen Spicer, M.D.

Visit regularly and schedule your visits. An estimated 20 to 30 percent of nursing home residents never have any visitors, a heartbreaking statistic. Let your elderly parent know in advance that you will be there. He or she can write it on the calendar and enjoy looking forward to your visit.
Plan your conversations. Make a mental list of interesting subjects to discuss. Pick some things you both enjoy talking about. You may want to mention an upcoming event that the older person can anticipate.
Allow enough time. Avoid "hit-and-run" visits. Get there on time and tell your parent how long you can stay. Spend at least a half hour and don't expect to settle all his or her problems during that time. Visits are meant to be leisurely and pleasant.
Sit close or pull up a chair alongside. Older people may have difficult seeing and hearing, and precious words might get lost on their way across the room. Being close conveys caring and stimulates good communication.
Bring something along. Surprises are always welcome, and it helps to have a concrete object to focus the conversation. Possibilities include a homemade card from your child, a plant or flowers from your garden, a favorite food or baked dish, a basket of fresh fruit, a letter from a mutual friend, photographs of family or friends, (especially rediscovered old photos), yarn for knitting, a magazine or book. Small personal items such as toilet articles, clothing and stationery make nice gifts. If you can, bring a pet -- especially a small one. A puppy or kitten makes a very popular visitor that everyone will likely want to hold.
Bring a child along. Children can reach oldsters where adults fail, and old people generally enjoy children in moderate doses. Some parents mistakenly feel that young children will be upset by exposure to a dreary nursing home. The truth is that youngsters often accept the most handicapped people easily and naturally.
Touch your elderly parent. Older people need physical contact. When talking with them, put you hand on their arm, hold hands or put your arm around them. Remember, touch is an eloquent form of communication, and the message is love.
Go for a walk. Get outside with your parent if at all possible. If Dad can't walk, push him in a wheelchair. Your visit may provide a rare chance for physical exercise. Older people need to move around regularly to keep their bodies functioning well.
Ask about the past. What was it like growing up? Most seniors enjoy reminiscing about times gone by.
Be yourself. This is the key to enjoying your visit. Don't put on an act. Plan to get as much out of your visits as you put into them. Tell your favorite stories, laugh, relax, and enjoy yourself -- and your parent.

Caregiving and the Rest of Your Life

Care providers are often aware that the additional responsibilities and concerns involved in the caregiving role will add stress to their lives. The surprise really comes when care providers discover how much extra stress caregiving can add.

The stresses involved in caregiving are like the ripples that appear on the surface of a pond when a pebble is dropped in. Every area of your life is impacted by the extra time and attention you must devote to the older adult you care for.

Your Children

How will your family react? Do you have children who will be impacted by changes in their routine, and by receiving less of your time and attention? Children may also be affected by the loss of the older adult relative they knew, and may be frightened by the new person he or she has become.

Young children may not be able to verbalize the feelings they have about this new family situation. Children may develop problems with peers and/or teachers. Very young children may regress, experience problems with bed wetting or a setback in toilet training or other new skill. They may experience separation anxiety or a fear of abandonment.

Older children may have mixed feelings. They may resent the time you have to devote to the older adult. At the same time, they may feel guilt, grief and/or sadness because of the older adult's condition. Teenagers may withdraw from the family more than is usual, may become excessively moody, and may act in self-destructive ways such as abusing alcohol or drugs, neglecting their studies, etc.

Explain the facts of the older adult's condition in terms your child can understand, and include them in some of your discussions so that they can feel a part of the family situation. Involve them with the older adult during visits and other family times.

Arrange for respite for the whole family, so that you can spend some time together, without the older adult. Above all, it is important to remember that your children are not adults, and that they will need reassurance, understanding, and extra attention and love as your family faces this difficult experience.

Your Job

According to Donna L. Wagner, a vice president at the National Council on the Aging, almost 12 percent of the country's work force now provides help to older people. Wagner was quoted in the August 20, 1995 New York Times. The Times also reported that these caregivers spend an average of 15.1 hours a week assisting aging relatives, from shopping to arranging health care to providing emotional support.

The Times cited a recent five-city study where the Families and Work Institute found that 91 percent of employees who care for the elderly experience some change -- mostly negative -- in their work habits. For instance:

56 percent acknowledged that they worried at the office or factory about the older adult, and
48 percent used the telephone more than usual to check on them.
Elder care caused 37 percent to arrive at the job late or to leave early, and 37 percent were distracted enough by their concerns to feel that their productivity was affected.

Many employers are trying to help with the burden of providing care while working. They are providing unpaid family leave for emergency temporary care of an older adult, flexible work hours, and dependent-care spending accounts for adult day care. Experts agree that workplace help for the providers of care to older adults is a trend that will continue to grow as the population ages.

There are a few things that care providers can do themselves to help ease the transition between "work" and "caregiving." These tips are from Unstress Your Life: How to Reduce Tension and Feel Great, by the editors of Prevention magazine.

To ease your transition from work to family matters:

End the day as smoothly as possible.
Leave your easiest projects for the afternoon, tackling the tough ones when you're fresh in the morning. Walk -- don't run -- to your car, and use your ride home to relax and "deliberately unwind."
Leave unfinished business at your desk.
Make a "to do" list for the next day -- and then forget about the tasks until the next morning.
Maintain perspective.
"Will today's catastrophe matter to you or anyone else in ten years? Probably not."
Cultivate your sense of humor.
Put a buffer zone between work and home.
Take a quick shower or change your clothes when you first get home -- it helps to de-emphasize work by changing from your work 'uniform.'
Don't make dinner into an ordeal.
Unless you or your partner find cooking therapeutic, keep food preparation to a minimum. Turn off the television and turn on the telephone answering machine.
Check those managerial impulses.
Try to keep some time "unscheduled," with no tasks, not even fun activities, planned.
Remove your professional hat as you cross the threshold.
"Try to politely discourage friends and colleagues from calling with business questions after business hours."

Other Types of Help

Caregiving is an ever-changing, continually challenging situation. Every care provider needs outside assistance at one time or another: those who refuse to seek out that help (mistakenly believing they can "handle it" alone) often end up worn out and unable to continue.

The secret is often to reach out for information and assistance before it is absolutely essential. Then, when the crisis comes, you will be prepared.

Support Groups

Support groups are one of the fastest-growing sources of assistance for care providers. Although many people find the logistics of attending a group difficult to fit into an already-overburdened schedule, it is an investment very well made. To find out about support groups for care providers, ask your physician or hospital, check with senior's groups, or ask clergy members in your area.

Most support groups are facilitated by a professional, but the emphasis is on allowing care providers to share their stories and to learn practical tips and coping techniques from one another.

Where to Get Information

Since care providers often go about their tasks quietly, with little fanfare or recognition, it can be difficult to learn about the resources other care providers have discovered. You must be very proactive and energetic in your efforts to question everyone who might have information that can help. Whether the older adult you care for needs help with light housekeeping, personal care, companionship, shopping, or home chores, you may find a service organization in your community to assist.

The older adult's physician's office and the hospital marketing department are other resources for information on available programs.
Don't overlook the yellow pages -- they are an excellent resource for an overview of the types of services available.
Your county or city government's social services department or commission on aging can also be an invaluable resource for care providers.
Many long term care organizations, including nursing homes and assisted living facilities, offer respite services and educational or supportive programs for older adults and their care providers.
Adult day care programs often offer a "free day" where an older adult can try the program, and their staff are very knowledgeable about help available for older adults.
Check with your company's employee assistance program for information about local programs and opportunities.
Don't neglect to use the many resources available at the local library -- you can obtain information there about everything from diseases and conditions to current listings of senior services available.

Some Additional Resources

Edinberg, Mark A. Talking with Your Aging Parents. Shambhala Publications, 1987.

Horne, Jo. A Survival Guide For Family Caregivers. CompCare Publishers, 1991.

Kouri, Mary K. Keys to Survival for Caregivers. Barron's Education Services, Inc., 1992.

Levy, Michael T., M.D. Parenting Mom & Dad. Prentice Hall Press, 1991.

Mace, Nancy L. and Rabins, Peter V. M.D. The 36-Hour Day. The Johns Hopkins University Press, 1991.

Rob, Caroline R.N. with Reynolds, Janet, G.N.P. The Caregiver's Guide. Houghton Mifflin Company, 1991.

Robinson, Rita. When Your Parents Need You. IBS Press, 1990.

Silverstone, Barbara and Hyman, Helen Kandel. You and Your Aging Parent. Pantheon Books, 1989.

National Family Caregivers Association, a not-for profit corporation, 9621 East Bexhill Drive, Kensington, MD 20895-3104. Publishes a quarterly newsletter.

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