Caring for the Caregiver

Caregivers experience mixed emotions. Love for your family member and the satisfaction you derive from helping may coexist with feelings of resentment about the loss of your privacy and frustration at believing you have no control over what happens.  

You may find it hard to accept the decline of the special person for whom you are giving care. Such feelings will depend in part on your prior relationship with your care-receiver, the extent of your responsibilities as a helper, and daily activities in your life (professional, social, and leisure pursuits). Your conflicting emotions may cause guilt and stress.

To guard against becoming physically and emotionally drained, you must take care of yourself. You need to maintain your health and develop ways to cope with your situation.

Caregiver's Self-Rating Scale:

Below is a scale to evaluate your level of care-giving. It has been adapted from an article in Co-op Networker; Caregiver of Older Persons by Judy Bradley. It is an excellent effort to provide some guidelines for caregivers and to evaluate your level of care and value which you give your care-receiver and yourself.

The scale is a 1-10 continuum which describes the various styles of caring.

1. Abandonment	to withdraw protection or support or to actively abuse your care-receiver.
2. Neglect	to allow life-threatening situations to persist or to display consistent coldness or anger.
3. Detachment/Aloofness	to maintain an air of detachment or being aloof, perfunctory in your care, no genuine concern, only obligation. Concerned only with physical well-being of your care-receiver.
4. General Support	given freely, with a guarded degree of warmth and respect, occasional feelings of manipulation. Concerned with both emotional and physical well-being of care-receiver.
5. Expressed empathy	the ability to feel what your care-receiver feels. a quality relationship where feelings can be freely expressed and caringly received with non-judgmental positive regard.
6. Sympathy	feeling sorry for care-receiver, giving sympathy, focusing on the losses experienced by care-receiver.
7. Occasional over-involvement	care characterized by periodic attempts to do for rather than be with.
8. Consistent Over-involvement	care-receiver regarded as object of series of tasks which must be performed.
9. Heroic Over-involvement	care characterized by sometimes frantic and desperate attempts to provide for every possible need your care-receiver has; increased dependence, care-receiver not allowed independence.
10. Fusion of personalities	between caregiver and care-receiver. The caregiver's needs no longer have any value or meaning; the caregiver has abandoned him/herself to needs of the care-receiver.

 

You can place yourself on the Scale of Care-giving to determine how you value your care-receiver as compared to yourself. The low numbers give little or no value (honor) to the needs of your care-receiver. The high numbers (8, 9, 10) give little or no value to your own needs as an individual and as a caregiver. The numbers in the middle are where you find a balance between under-care and over-care. Neither of the two extremes is healthy; they represent positions where you are not helping your care-receiver.

What can I do to help myself?

Acknowledge your feelings: Your feelings have a lot to do with the way you view and cope with care-giving. All feeling are legitimate, even those that may seem disturbing to you (including anger, frustration, and sadness). Recognizing and accepting your emotions are the first step toward resolving problems of guilt and stress. Learn to express your feelings to family members, friends, or professionals. Take the following caregiver Stress Test; determine how much stress you are under.

Caregiver Stress Test

The following test will help you become aware of your feelings, pressures and stress you currently feel.

Which of the following are seldom true, sometimes true, often true, or usually true?

• I find I can't get enough rest.
• I don't have enough time for myself.
• I don't have time to be with other family members beside the person care for.
• I feel guilty about my situation.
• I don't get out much anymore.
• I have conflict with the person I care for.
• I have conflicts with other family members.
• I cry everyday.
• I worry about having enough money to make ends meet.
• I don't feel I have enough knowledge or experience to give care as well as I'd like.
• My own health is not good.

If the response to one or more of these areas is usually true or often true it may be time to begin looking for help with caring for the care-receiver and help in taking care of yourself.

Seek Information:

Check your public library for books, articles, brochures, videotapes, and films on care-giving. Some hospitals, Adult Education Centers, the Southern Regional Resource Center and CESS offer courses on care-giving and additional information on resources that you can turn to for help. Help is available!

Join a Caregiver Support Group:

In addition to offering useful information, such groups provide a unique forum for caregivers to come together and share their feelings in a supportive environment. Groups help caregivers feel less isolated and can create strong bonds of mutual help and friendship.

Participating in a support group can help mange stress, exchange experiences, and improve skills as a caregiver. Sharing coping strategies in a group setting lets you help others while helping yourself. It may also help you to realize that some problems have no solutions and that accepting the situation is reality.

Set Realistic Goals:

Care-giving is probably one of the many conflicting demands on your time. It is important to set realistic goals. Recognize what you can and cannot do, define your priorities, and act accordingly. Turn to other people for help - your family, friends, and neighbors. Prepare a list of tasks for anyone who may offer assistance. The list may include:

• running an errand for you,
• preparing a meal,
• taking your care-receiver for a ride,
• taking our children after school one day.

Practice good communications skills:

Do not expect that others will ask if you need help. It is up to you to do the asking.

Communicate with your Family and Friends:

Turning to family members or friends for emotional support and help can be a mixed blessing. Their visits may make you feel less alone and better able to deal with care-giving responsibilities. They can give you a break by spending time with your care-receiver.

However, other relatives or friends can be critical of the way you provide care. They may feel the house is not kept clean enough; or they may not like the way your care-receiver is dressed. Recognize that they are responding to what they see at that time and are lacking the benefit of experiencing the whole picture and any gradual changes in your care-receiver's condition. Harsh criticism may be a response to their own guilt about not participating more in the care process.

Try to listen politely to what is being said (even though this might not be easy). However, if you and your care-receiver feel comfortable with the way you are managing the situation, continue to do what meets your needs. Schedule a family meeting from time to time to help other family members understand the situation and to involve them in sharing the responsibilities for care-giving.

Use Community Resources:

Investigate community resources that might be helpful. Consider using in-home services or adult day care. Employ a homemaker to cook and clean, or an aide to help your care-receiver bathe, eat, dress, use the bathroom or get around the house.

Use Respite Care Services:

When you need a break from providing care to your care-receiver, look at respite care. For example, a companion can stay with your care-receiver for a few hours at a time on a regular basis to give you time off. Or have your care-receiver participate in an adult day care program where he or she can socialize with peers in a supervised setting; this gives your care-receiver a necessary break from staying home all the time. Hospitals, nursing homes, and particularly residential care homes offer families the opportunity to place older relatives in their facilities for short stays. The Residential Bed Availability Hot Line, your doctor, and the Area Agency on Aging can assist with arrangements.

Maintain your Health:

Your general well-being affects your outlook on life and your ability to cope. Taking care of yourself is important and involves:

• eating three balanced meals daily,
• exercising daily,
• enough sleep/rest,
• allowing yourself leisure time.

Food is fuel for your body. Skipping meals, eating poorly, or drinking lots of caffeine is not good for you. Learn to prepare and eat simple, nutritious, well-balanced meals. Avoid alcohol above 2-3 ounces daily.

Being physically active can provide you with an outlet that is relaxing and makes you feel good. Stretching, walking, jogging, swimming, or bicycling are examples of invigorating exercises. Consult your doctor before starting an exercise routine. Your doctor can help design a program that fits your individual needs.

Leisure time allows you to feel better and more able to cope with your situation. Having time to yourself to read a book, visit a friend, or watch TV can also bring enjoyment and relaxation, and break the constant pattern and pressure of care-giving.

Sleep refreshes and enables you to function throughout the day. If your care-receiver is restless at night and disturbs your sleep, consult your doctor and fellow caregivers on possible ways to handle the situation. You may need to have outside help in the evenings to allow you time to sleep.

If you are unable to sleep because of tension, practice relaxation exercises. Deep breathing or visualizing pleasant scenes can be helpful. Continued sleep disturbance may be a sign of major depression, which needs medical attention.

Relaxation Exercise:

-- Sit or lie down in a comfortable position. Close your eyes. Allow your mind to drift a few seconds, go with it wherever it goes. Wiggle your fingers and toes, then hands and feet, ankles and wrists. Loosen tight clothes, belts, ties. Sway your head from side to side, gently, gently. Now you have prepared yourself to relax physically and psychologically.

-- Now concentrate, still with your eyes closed, on some one pleasant thing you really want to think about; maybe it is a place you have visited in the past, or your dream place of your own imagination. It might be the seashore, or high on a hill, or in a field of grass and flowers. Become totally immersed in the place. Smell the smells you best remember. See the sights it offers. Hear the sounds. Feel it, whether it be water or sand or soil or snow. Fully realize this place or situation you are in: if it is on the sandy beach, sift your fingers through the warm sand and smell it, hold the sand to your cheek, smell the salt of the sea, search the skyline for gulls and terns and low clouds in the distance. Your body is totally weightless. You are totally in control of this scene. It is so relaxing and pleasant and beautiful, you are breathing slowly, peacefully. This is YOUR place and no one can take it from you.

-- After you have sufficiently experienced your peaceful imaging, whenever you have a chance, return to your special place, close your eyes again, tune in, relive those these special few moments in the world of your choosing where everything is perfect and everything is yours. This relaxation exercise can benefit you all day. Check your local library or book store for books, audio tapes, videotapes or films on relaxing and managing stress.

Laughter is the Best Medicine:

This is an old expression popularized by Norman Cousin's book Anatomy of an Illness, in which he describes his battle with cancer and how he laughed his way to recovery. His hypothesis and the subject of many studies suggests that there are positive effects to be gained from laughter as a great tension-releaser, pain reducer, breathing improver, and general elevator of moods. It sounds miraculous, is not proven, but studies continue. Groups such as the International Conference on Humor and many hospitals use positive emotion rooms and humor carts. In short, humor therapy is valuable and it helps us through difficult or stressful times.

So for yourself and your care-receiver:

• try to see the humor in being a caregiver;
• write on a card Have you laughed with your care-receiver today? and place it in a conspicuous place in the bathroom or kitchen;
• read funny books or jokes, listen to funny tapes or watch humorous movies or videos that make you laugh;
• share something humorous with your care-receiver, a friend, or relative;
• attend social groups where there is a lot of camaraderie, joy and fun;
• be aware of how often you smile; it takes much less energy to smile than to frown.

If you find that you are feeling hopeless, and humor or laughter is not affording you the up-lift you want, contact a counselor. And remember, laughter is the best medicine. Try it, you'll like it!

Avoid Destructive Behavior:

Sometimes people handle stressful situations in ways that are destructive. Instead of openly expressing feelings, they overeat, use alcohol, drugs, or cigarettes to mask their difficulties. Such escapes do not solve the problem and are harmful to health. If the strain results in neglecting or abusing the care-receiver, it is a vary serious problem. It is also against the law!

Seek Help:

You do not have to go it alone. Turn to family members, friends, clergy members, professional counselors, or a caregiver support group for help and support.

Build your Self-Esteem:

Continue to pursue activities and social contacts outside your home. Do what you enjoy. Go to a movie, play a musical instrument, or get together with friends for a card game. It may not be easy to schedule these activities, but the rewards for having balance in your life are great. Taking care of yourself benefits you and your care-receiver. Meeting your own needs will satisfy you and give you additional strength and vigor to bring to your care-giving tasks.

Caregiver's Bill of Rights

You have rights, too. Below is a Caregiver's Bill of Rights. After you read them, post and keep them fresh in your mind.

Caregiver's Bill of Rights

• Caregivers have the right to receive sufficient training in care-giving skills along with accurate understandable information about the condition and needs of the care recipient.
• Caregivers have the right to appreciation and emotional support for their decision to accept the challenge of providing care.
• Caregivers have the right to protect their assets and financial future without severing their relationship with the care-receiver.
• Caregivers have the right to respite care during emergencies and in order to care for their own health, spirit, and relationships.
• Caregivers have the right to expect all family members, both men and women, to participate in the care for aging relatives.
• Caregivers have the right to provide care at home as long as physically, financially and emotionally feasible; however, when it is no longer feasible caregivers have the obligation to explore other alternatives, such as a residential care facility.
• Caregivers have the right to temporarily alter their premises as necessary to provide safe and livable housing for care-receivers.
• Caregivers have to right to accessible and culturally appropriate services to aid in caring for aging care-receivers.
• Caregivers have the right to expect professionals, within their area of specialization, to recognize the importance of palliative (ease without curing) care and to be knowledgeable about concerns and options related to older people and caregivers.
• Caregivers have the right to a sensitive, supportive response by employers in dealing with the unexpected or severe care needs.