Caregiver Directory

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 care-receiver and yourself.

The scale is 1-10 and 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 Caregiving 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 undercare and overcare. 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 caregiving. All feeling are legitimate, even those that may sem 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 caregiving. Some hospitals, Adult Education Centers, offer 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 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 caregiving 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 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 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 caregiving.

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 andthe 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 comeraderie, 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 caregiving 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 caregiving 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.

Personal Care

Personal care activities include:

Eating, bathing, shaving, caring for the skin, hair and mouth, and transferring (moving from chairs, toilets or bed). During the course of our daily lives these activities are taken for granted until weakness or a disability makes them difficult to accomplish independently or safely. Providing assistance requires knowledge, patience, skill and physical strength.

Bathing: Bathing an older person may require strength, special equipment and skills. It is advised that caregivers ask the elderly person's doctor and.or physical therapist for special instructions on how to safely bathe the care-receiver.

Shampooing and Shaving: Visits to a barber or hairdresser are very positive experiences. Individuals who provide this service will often come to the home. Wetting hair with alcohol or cream rinse helps to remove the snarls. Dry shampoos are available if your family member is bed bound. People who are diabetic or on medication to thin the blood (anti-coagulants, i.e., Coumadin) should use an electric shaver to reduce the risk of cuts. It is much easier and safer to shave another person with an electric razor.

Skin Care:

Keep skin clean and dry, especially when people are having problems with bowel and bladder control. When washing, use a mild soap, rinse well, and dry thoroughly. Keep bed linens clean, dry and free of wrinkles. Disposable bed pads can be purchased at a drug store and can keep sheets dry so that the caregiver does not have to change sheets so often. Massage skin gently using a light, circular motion. Change the position of older people at least every two hours, particularly for those confined to a bed or wheelchair. Encourage them to shift their weight between position changes to redistribute pressure onto other areas. Encourage good nutrition and adequate fluid intake. As a supplement to your family member's diet, give a multi-vitamin every day to ensure proper nutrition. Check with the physician as to the appropriate supplement. Use mattress and chairs that are soft and form-fitting rather than rigid and hard. (Example: egg crate mattress and sheep skin). This spreads the weight over a larger skin area, decreasing the pressure under the bones. Encourage movement or mild exercise; this helps stimulate circulation which is good for the skin. Combing hair and helping with bathing and dressing are good ways for frail people to get exercise and be more independent. Watch for possible sources of pressure on anything that would interfere with good circulation, such as tight shoes, elastic cuffed socks or tight undergarments. Bony prominences are prone to skin breakdown. They are heels, feet, behind the knees, hips, buttocks, sacrum, elbows and shoulder blades. A special air mattress may be ordered by the doctor to prevent skin breakdown. Watch for any redness or a break in the skin and report it immediately to the doctor or nurse, and keep the care-receiver off the affected side.

Toileting:

Safety features in the bathroom, such as grab bars and raised toilet seats, make using the bathroom safer. A commode or urinal may be necessary when flexibility and distance to the bathroom are a problem. They may be especially helpful at night. Lack of control over bowel or bladder functions can be embarrassing and older people may try to hide it from caregivers and professionals. Be sensitive to the older person's feelings, and mention this to the doctor. Loss of bowel and bladder control is not a part of normal aging and often can be controlled. For the care-receiver with bowel and/or bladder problems it may help to take them to the bathroom every 2 hours. Specialized programs exist to retrain a bladder and bowel function. Check with your doctor or nurse for a program in your area.

Constipation or Irregularity: Many elderly become constipated due to medications and inactivity. If your care-receiver is experiencing this problem the doctor or nurse can suggest a stool softener. Other important factors are:

Eat plenty of fresh fruit, vegetables and foods high in fibers. Drink at least 8 glasses of water a day. Avoid constipating foods like cheese, rice, bananas, etc. Exercise as much as is tolerated. Be sure your doctor is aware of all the medications being taken.

Assisting with Eating:

Eating can be very time-consuming, especially if the older person must be fed. Encouraging independent eating saves time for caregivers, and promotes the independence and self-worth of the older person. Try to relax yourself and enjoy the time spent with your care-receiver. Here are some suggestions for encouraging independence:

Check gums for areas of redness. Dentures may not fit correctly and cause the family member pain when chewing. Provide adaptive equipment such as plate guards or special silverware with built-up handles. These can be purchased from medical supply houses (listed under Hospital Equipment and Supplies in the Yellow Pages). An occupational therapy evaluation can recommend the best for each individual. Prepare finger foods which may be easier to eat than those requiring utensils. Encourage older people to use a straw, cups with 2 handles, or a glass with ribbed surface for independent drinking. If the older adult has limited vision, consistent place setting of food and utensils helps to know where to find silverware, beverage, etc. Using the clock method to locate food may be helpful; for example, Your meat is at 9 o'clock, your potato is at 12 o'clock and your carrots are at 3 o'clock. Reminder: Treat older people who are being fed as adults, not children. Disciplining poor eating habits should be avoided. When they lack interest in food, try to learn the reason. For example, ask if they are thirsty or not feeling well, or if the food in not appetizing on this occasion.

Transferring: Moving people who cannot move safely by themselves requires skill, knowledge, and some strength. For every type of disability, there is a specific technique to use. Ask a doctor, therapist or attend caregiver training for specific techniques. In all cases, remember:

When lifting, do not add your own weight to whatever you are lifting -- get close and keep balance centered. Do not use weak back muscles to lift - use your leg muscles because they are much stronger. Do not twist when you are lifting - instead, change the position of your feet so that you face the older person, keeping your spine straight. Balance is vital - spread your feet to serve as a base for support. Your doctor can refer you to a physical therapist who can teach you to transfer safely.

Rest and Sleep: As we age, our sleep patterns change. The elderly require less sleep time. It takes longer for them to fall asleep. Also, awakenings during the night increase. Scheduled rest times are important. A few naps during the day can refresh and revitalize the care-receiver. However, if you notice that your care-receiver is sleeping for brief periods during the night, it could indicate a problem. Notify your doctor and discuss your concerns.

Tips for Encouraging Self Care:

Allow the care-receiver to do as much as possible; provide only as much help as needed. When older people do all or part of their own personal care, it is a form of exercise that will help maintain strength as well as promote independence. No matter how small the activity (holding the soap, combing the front of the hair, etc.) it is important that the person be able to participate. Adapt the home to allow the care-receiver to do more things. Install equipment such as grab rails in the bathroom, wheelchair- accessible sinks and mirrors, bath bench for the shower or tub, and lights with switches that can be easily reached. Seek the aid of therapists or nurses to teach you how to perform personal care tasks safely and effectively. Learn about the care-receiver's disability and what you and others can do to help him/herfunction as independently as possible. If the older person cannot perform a certain activity, see if there is a part that can be done. For example, one might be able to independently dress the upper body if sitting, but require help dressing the lower body. Whenever possible, include the care-receiver in making plans for his/her care. Take suggestions and feelings into consideration and encourage involvement in his/her own care. Sometimes, slowing the pace of an activity allows older people to do more for themselves.

Be aware of changes in the care-receiver's health and abilities. Your plans for care will change as the care receiver changes.

Nutrition.

Good nutrition is important in order that people live life to its fullest. Good nutrition is a balance of proteins, carbohydrates, fats, vitamins, minerals and water in the foods we eat. A healthy diet helps to (1) provide energy; (2) build, repair, and maintain body tissues and (s) regulate body processes.

When meals are eaten in the company of others, people not only benefit from the nutritious foods, but also enjoy the chance to socialize. This encourages good eating habits and promotes good mental health.

Nutrients listed on food labels:

The table that follows summarizes essential nutrients (which you may also finds listed on food labels) and their functions.

Adapting Meals for People with Dietary Restrictions:

If an individual is on a special diet (low salt, diabetic or low saturated fat), the Basic Four Food Groups Guide (which follows) can still be used. However, because diets are prescribed to control a specific medical condition, certain foods may have to be eliminated, modified in the preparation, or limited in their intake. It is important that caregivers obtain specific instructions from a registered dietitian or their doctor on which foods are allowed, how much, and how they should be prepared.

Since some foods or medications may interact with other medications and/or foods in a harmful way, check with the pharmacist as to restrictions in any medications' use before it is applied.

Nutrients on Food Labels and their Function

Protein: For preservation and repair of tissue; formation of antibodies to fight infection. Carbohydrates: For energy; fiber to help prevent constipation. Fat: For energy; healthy body and skin. Vitamin A: For healthy eyes, skin, hair; resistance to infection. Vitamin C: For healthy gums, skin; healing of wounds, bones; resisting infection. Thiamin (B1): For digestion; healthy nervous system. Riboflavin (2): For healthy eyes, skin, mouth; use of oxygen from air. Niacin: For healthy digestive tract and nervous system. Calcium: For preservation and repair of bones, teeth; muscle contractions; blood clotting. Iron: For building red blood cells to carry oxygen to all parts of the body.

To simplify daily meal planning, foods are grouped according to the nutrients they supply. Plan your diet to include the recommended number of servings from each group.

The Four Basic Food Groups

Meat Group: Provides protein, niacin, iron, and Thiamin-B1. 2 servings daily. Dry beans and peas, soy extenders, and nuts combined with animal or grain protein can be substituted for a serving of meat. 2 ounces of cooked, lean meat, fish or poultry have the same amount of poultry as: 2 eggs; 1 cup cooked dry beans, peas, or lentils; 4 tablespoons peanut butter; 1/2 cup cottage cheese.

Grain Group: Provides carbohydrates, Thiamin-B1, iron, and niacin. 4 servings daily. Whole grain, fortified, or enriched grain products are recommended. 1 adult serving is: 1 slice bread; 1 cup ready-to-eat cereal; 1/2 cup cooked cereal, pasta, cornmeal, rice or grits; 1 small muffin or biscuit, 5 saltines, 2 graham crackers.

Milk Group: Provides calcium, riboflavin-B2, and protein. 2 servings daily: Foods made from milk contribute part of the nutrients supplied by a serving of milk. 1 cup milk has the same amount of calcium as 1 cup yogurt, 1 and 1/2 slices (ounces) cheddar-type cheese, 1 and 3/4 cups ice cream, 2 cups cottage cheese.

Fruit-Vegetable Group: Provides vitamins A and C. 4 servings daily: dark green leafy or orange vegetable and fruit are recommended 3 or 4 times weekly for vitamin A. Citrus fruit is recommended daily for vitamin C. 1 adult serving is: 1 cup raw fruit or vegetable, 1/2 cup cooked fruit or vegetable, 1 medium fruit, such as an apple or banana, 1/2 cup juice.

Common Problems Interfering with Good Nutrition.

Illness, disability and depression can affect an older person's desire and ability to eat properly. The following suggestions deal with common problems that interfere with good nutrition.

When the care-receiver say the food tastes strange, it might help to:

Check teeth for tooth decay or gum infection, avoid alcohol, marinate meat, poultry and fish in sweet fruit juices, italian dressing, or sweet or sour sauces, drink plenty of fluids or suck on candies to get rid of bad tastes, serve foods at room temperature or cold (try milk-shakes or cheese), use stronger seasonings such as basil, oregano, rosemary, tarragon, lemon juice or mint when cooking, Try new foods.

Cramps, Heartburn, Bloating:

Eat slowly, eat small meals frequently, avoid gas-forming foods, e.g., cabbage, onions, nuts, beer, cola drinks, avoid lounging immediately after eating; stand or sit upright for one hour after eating, Aaoid fried, greasy and heavily spiced foods, try bland, low-fat, easily digested foods, chilled antiacid may help, HOWEVER, check with your doctor regarding the brand of antiacid to use.

Constipation

Take high-fiber foods and plenty of liquids, Exercise, Add bran when cooking or baking (1 - 2 tablespoons of bran for each cup of flour), Drink hot beverages which act as stimulants.

Diarrhea

Eat small meals frequently, drink clear liquids, avoid high fiber and greasy foods, replace fluid loss with liquids between meals.

(c) copyright 1996

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