Caregiver's Handbook--Part 3 of 9

Caring For the Caregiver

Caring For the Caregiver

Caregiver's Self-rating Scale
What Can I Do to Help Myself? | Caregiver Stress Test
Seek Information
Join a Caregiver Support Group
Set Realistic Goals
Practice Good Communication Skills
Communicate with Your Family and Friends
Use Community Resources
Use Respite Care Services
Maintain Your Health
Relaxation Exercise
Laughter Is the Best Medicine
Avoid Destructive Behavior
Seek Help
Build Your Self-Esteem
Caregiver's Bill of Rights

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 carereceiver, 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 caregiving. 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 carereceiver and yourself.

The scale is a 1-10 continuum which describes the various styles of caring. Circle the number or numbers which best describe your level of care.

1 2 3 4 5 6 7 8 9 10 Scale of Caregiving

1. Abandonment: to withdraw protection or support or to actively abuse your carereceiver.

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 carereceiver.

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 carereceiver.

5. Expressed empathy: the ability to feel what your carereceiver feels. a quality relationship where feelings can be freely expressed and caringly received with non-judgmental positive regard.

6. Sympathy: feeling sorry for carereceiver, giving sympathy, focusing on the losses experienced by carereceiver.

7. Occasional over-involvement: care characterized by periodic attempts to *do for* rather than *be with.*

8. Consistent Over-involvement: carereceiver 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 carereceiver has; increased dependence, carereceiver not allowed independence.

10. Fusion of personalities: between caregiver and carereceiver. The caregiver's needs no longer have any value or meaning; the caregiver has abandoned him/herself to needs of the carereceiver.

You can place yourself on the Scale of Caregiving to determine how you value your carereceiver as compared to yourself. The low numbers give little or no value (honor) to the needs of your carereceiver. 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 undercare and overcare. Neither of the two extremes is healthy; they represent positions where you are not helping your carereceiver.

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 caregiving. 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.


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

Seldom Sometimes Often Usually True Always 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 carereceiver and help in taking care of yourself.

Seek Information

Check your public library for books, articles, brochures, videotapes, and films on caregiving. Some hospitals, Adult Education Centers, the Southern Regional Resource Center and CESS offer courses on caregiving 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

Caregiving 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 carereceiver for a ride,-- taking our children after school one day.

Practice Good Communication 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 caregiving responsibilities. They can give you a break by spending time with your carereceiver.

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 carereceiver 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 carereceiver'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 carereceiver 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 caregiving.

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 carereceiver 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 carereceiver, look at respite care. For example, a companion can stay with your carereceiver for a few hours at a time on a regular basis to give you time off. Or have your carereceiver participate in an adult daycare program where he or she can socialize with peers in a supervised setting; this gives your carereceiver 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:

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 caregiving.

Sleep refreshes and enables you to function throughout the day. If your carereceiver 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

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 carereceiver:

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 carereceiver, 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 carereceiver. Meeting your own needs will satisfy you and give you additional strength and vigor to bring to your caregiving tasks.

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


End of part 3

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