caring.plus.com

Caring for the carer

Mixed emotions.

Carers often experience mixed emotions. Love for your family member and the satisfaction derived from helping may coexist with feelings of resentment about the loss of 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.

Carer's Self Rating Scale

Below is a scale to evaluate your level of care giving devised by Judy Bradley. It's an effort to give guidelines for carers and gives a score to your level of care and measures the value which you give to both to your care receiver and yourself.

Circle the number or numbers which best describe your situation.

1. Abandon: you do not protect or support or even actively abuse your care receiver.

2. Neglect: you allow life threatening situations to persist or display consistent coldness or anger.

3. Detached: you maintain an air of detachment or are aloof, perfunctory in your care, and display no genuine concern, only obligation. Your are concerned only with the physical well being of your care receiver.

4. General Support: you give freely, with a guarded degree of warmth and respect, and acknowledge occasional feelings of manipulation. Your are concerned both with the emotional and physical well being of care receiver.

5. Expressed empathy: You have the ability to feel what your care receiver feels. It is a quality relationship where feelings can be freely expressed and caringly received with non judgmental positive regard.

6. Sympathy: You feel sorry for care receiver, give sympathy, and focus on the losses experienced by care receiver.

7. Occasional over involvement: Your care is characterized by periodic attempts to "do for" rather than "be with."

8. Consistent over involvement: The care receiver is regarded as the object of a series of tasks which must be performed.

9. Heroic Over involvement: This level of care is characterized by sometimes frantic and desperate attempts to provide for every possible need your care receiver has and involves increased dependence, and you as care receiver are not allowed to be independent.

10. Fusion of personalities: The carer's needs no longer have any value or meaning; and the carer has totally abandoned him/herself to needs of the care receiver.

You can place yourself on this scale to determine how you value your care receiver compared to yourself. The low numbers show little honour or value to the needs of your care receiver. The high numbers (8, 9,10) give little or no value to your own needs either as an individual or as a carer.

The middle numbers show a healthy compromise between under care and over care.

Neither of the two extremes is healthy; because 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 carer Stress Test to show how much stress you are under.

CARER STRESS TEST

This test can help you become aware of your current feelings, pressures and stress.

check the box on the right for the questions below seldom sometimes often usually always
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 reply to one or more of these questions is usually or often now is the time to look for some external help.

If it's always get help NOW since you are burned out!!

Seek Information

Check your public library for books, articles, brochures, videotapes, and films on care giving. Some hospitals and Adult Education Centres offer courses on care giving and additional information on resources that you can turn to for help. Help is available!

Join a Carer Support Group

In addition to offering useful information they are a forum for carers to come together and share their feelings in a supportive environment. Groups help carers feel less isolated and can create strong bonds of mutual help and friendship.

Taking part in a support group can help you manage stress, exchange experiences with others, and improve your skills as a carer. 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 thataccepting the situation is the only way to go.

Be Realistic

Caring for another person is probably only 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 neighbours. Make a list of tasks for anyone who can help you. This list could include:

Practice Good Communication Skills

Don't expect others to offer 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.

BUT, 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 reaction to their own guilt about not helping 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. Arrange family meetings 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 which may be helpful. Consider using in home services or adult day care. Employ a housekeeper to cook and clean, or an assistant to help your care receiver bath or shower, 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, investigate 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 also 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. Social Services, your doctor, and some charities can help with arrangements.

Look after your own 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 if possible..

Being physically active can help you both relax and 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 to fit 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 carers 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 help. 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 imagining, 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 shop 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 Humour and many hospitals use "positive emotion rooms" and humour carts. In short, humour therapy is valuable and it helps us through difficult or stressful times.

So for yourself and your care receiver:

try to see the humour in being a carer; write on a card

Have you laughed

together today?

and put it in a conspicuous place in the bathroom or kitchen;
-- read funny books or jokes, listen to funny tapes or watch humorous films or videos which 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 humour or laughter is not working for you, contact a counsellor. And remember, laughter is the best medicine. Try it, you'll like it!

Avoid Destructive Behaviour

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 cannot solve the problem and are harmful to health. If the strain results in neglecting or abusing the care receiver, it is a very 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 counsellors, or a carer 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 vigour to bring to your care giving tasks.

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

CARER'S BILL OF RIGHTS:-

  1. to receive sufficient training in care giving skills along with accurate understandable information about the condition and needs of the care recipient.
  2. to appreciation and emotional support for their decision to accept the challenge of providing care.
  3. to protect their personal assets and financial future without severing their relationship with the care receiver.
  4. to respite care during emergencies and in order to care for their own health, spirit, and relationships.
  5. to expect all family members, both men and women, to participate in the care for dependant relatives.
  6. to provide care at home as long as physically, financially and emotionally feasible; however, when it is no longer feasible carers have the obligation to explore other alternatives, such as a residential care placement.
  7. to temporarily alter their home when necessary to provide safe and liveable housing for care receivers.
  8. to accessible and culturally appropriate services to aid in caring for care receivers.
  9. 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 patients and their carers.
  10. to a sensitive, supportive response by employers in dealing with emergencies at home.  

Last updated 25-02-2013