Assisting Both the Caregiver and the Elderly Care-receiver
The Caregiver Education and Support Services
Seniors Counseling and Training
Case Management Services of
1250 Moreno Blvd.
Robert Torres-Stanovik, LCSW, Editor
First Printing - January 1990
Second Printing- July 1990
This Caregiver's Handbook was developed and produced in booklet form by The Caregiver Education and Support Services, Seniors Counseling and Training Case Management Services of the San Diego County Mental Health Services; Robert Torres-Stanovik, LCSW, Editor.
Because of ongoing changes and problems in collecting data, San Diego County cannot assume responsibility for the accuracy of the information printed herein, nor does this handbook provide listings of all resources.
The following is added at the request of the San Diego County Mental Health Services: The content of this document is public information and may be copied by governmental and non-profit entities for use in their caregiver training and related healthcare programs and for free distribution to the general public for those purposes. Reproduction of this Handbook for commercial sale and/or other for-profit purposes is prohibited. (NOTE: Copied to disk and previously posted on Feb 17, 1992 to SeniorNet (America Online) Showcase and Exchange and to the AOL Health database on May 27, 1993 by Mike Moldeven (mikemldvn.aol.com) with permission of the San Diego County Mental Health Services.
Table of Contents
Acknowledgements and Foreword . . . . . . . . . . . . . . . . . . . . . . . . . . . Page 3
Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Page 4
Chapter 1--Common Problems in Caregiving . . . . . . . . . . . . . . . . . . . Page 5
List of Needs., Types of help available, When community agency help is needed, Services available to impaired elderly
Chapter 2-Types of Help Available . . . . . . . . . . . . . . . . . . . . . . Page 7
Family or Friends, Community Agency Help, Services for Impaired Elderly
Chapter 3--Caring for the Caregiver . . . . . . . . . . . . . . . . . . . . . . . . . . . Page 9
Caregiver's self-rating scale, What can I do to help myself, Seek Information, Join a caregiver support group, Set realistic goals, Practice good communications 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 behaviors, Seek help, Build your self-defense, Caregiver's bill of rights
Chapter 4--Personal Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Page 14
Bathing, shampooing and shaving, skin care, Toileting, constipation or irregularity, Assisting with eating, transferring, rest and sleep, Tips for encouraging self-care, Nutrition, Nutrients listed on food labels, Adapting meals for people with dietary restrictions, Four food groups, Common problems interfering with good nutrition, General tips for helping the older person to eat well
Chapter 5-Nutrition . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Page 17
Nutrients listed on food labels, Adapting Meals for People with Dietary Restrictions, Nutrients on Food Labels and their Function, The Four Basic Food Groups, Common Problems Interfering with Good Nutrition, General Tips for Helping the Older Person to Eat Well
Chapter 6--Medical Aspects of Caregiving . . . . . . . . . . . . . . . . . . . . . . Page 20
Encouraging routine physical examination, Keeping records and managing medications, Choosing a doctor, Emotional and intellectual well-being, Depression: signs and causes, Suicide prevention, Promoting emotional well-being, The importance of lifetime learning,Memory problems, Sensory problems, Confusion, Behavioral problems, Mental stimulation
Chapter 7-Emotional and Intellectual Well-Being . . . . . . . . . . . . . . . Page 23
Depression: Signs and Causes, Suicide Prevention, Promoting Emotional Well-being, The Importance of Lifetime Learning, Memory Problems, Sensory Problems, Confusion, Behavioral Problems, Mental Stimulation
Chapter 8-Legal and Financial Affairs . . . . . . . . . . . . . . . . . . . . . . . . Page 28
Compiling an inventory, A will and managing financial affairs, Durable power-of-attorney for health care decisions, Conservatorship of estate and/or person, Selecting an attorney, Liability of caregiving
Chapter 9--When is It Time to Stop Caregiving? . . . . . . . . . . . . . . . . . Page 30
Chapter 10--Choosing a Residential Care Facility . . . . . . . . . . . . . . . . Page 31
I wish to especially thank the Beatitudes Center , D.O.A.R. for both their concept and much of the copy in the original Caregiver's Guide, Help for Helpers of the Aging. Without their initial guide, this might not have turned out as well as it has. Acknowledgement is also given to AARP's pamphlets on Caregiving, and to several books, which have been noted in Appendix B, especially The Loss of Self, by Cohen and Eisdorfer, for their invaluable ideas.
Thank you to my family, Maida, Shawn and Sylvia for their loving patience for allowing me the time/energy to complete this handbook; thank you to my support staff of students Karen Zaustinsky and Laurie McFarland for their assistance with the initial stages of this handbook, and the typists Heidi Peters, Fatima Ruiz, and Ewald Brieske for their many revisions and re-revisions in order to arrive at this handbook; thank you to the San Diego County Senior Teams, the Southern Regional Resource Center, Frank Dwinnell, M.D., Stanley Rest, Ph.D., Donna Pasanen, the Telephone Friends, several caregivers and care-receivers for their assistance in editing, advising and encouraging me with this handbook. Special thanks to Mimi Campbell-Goodman for the bear graphics (Note from Mike: I deeply regret not being able to include the graphics. They are excellent.) A very special thanks to Ray Schwartz, my supervisor, editor, and above all encourager who was always close at hand with his red pen and some kind words.
Caregiver Education Support Services (CESS) wishes you the very best of care. We care! CESS, a program under Seniors Counseling and Training Program, Case Management Services, would like your comments regarding our Caregivers Handbook. If we can offer further services or if you have any comments or improvements regarding this manual, write us at: Seniors Counseling and Training Program, Case Management, DHS, 1250 Moreno Blvd , San Diego , CA 92110 . by Robert Torres-Standovik, LCSW
Older citizens are more likely to be disabled or dependent due to medical problems. These problems change a person's relationships with family and friends. A husband, daughter, or friend may find that they are now also a caregiver, the person primarily responsible for seeing that a patient's physical, psychological, and social needs are met. Another person now depends on them for basic physical needs.
Regardless of whether the disability is due to progression of a chronic illness such as heart or lung disease, stroke, dementia, arthritis, or the combined effects of multiple medical and social factors, the caregiver role is a profound change for both people. These adjustments are often stressful, as well-established patterns must be abandoned, and new adaptions developed. This provides opportunities for personal growth, but also, invariable, causes emotional turmoil and distress. Being a caregiver is rewarding, but also can exhaust a person physically and emotionally, leading to illness and inability to further provide care.
This book is directed primarily at the caregiver. This is not a how to book focused on problems of the ill patient. Rather, it offers practical approaches to common caregiver problems. Staying healthy, avoiding depression, remaining active, making friends, enjoying pleasurable activities are an essential part of any human life, including those of caregivers. Serving as the primary caregiver for an ill loved one should not make life meaningless.
Caregivers for frail and ill older people should read this book. Family members who are not primary caregivers should also read this book to become more aware of the problems facing caregivers. Caregivers, other family members, and care-receivers will find the resources, tables, and questions useful in improving the quality of life for all concerned.
Mr. Torres-Stanovik and staff of the San Diego County Mental Health Services have performed an important service for the frail elderly and their caregivers.
J. Edward Jackson, M.D. Director, Seniors Only Care Clinic and Alzheimer's Disease Diagnostic and Treatment Center
University of California , San Diego
Few people are prepared for the responsibilities and tasks involved in caring for the aged. To help make the task easier, it is important to have a game plan in life which helps determine where we are headed and how we are going to get there. This guide will help to serve as a road map which gives optional paths for caregivers. It is also an emphatic reminder that those who care for other people can do a better job of caregiving if time and attention also are given to their own personal needs. It cannot be stated strongly enough; the caregiver is a very important part of the caregiving equation. The success of this equation and the continuance of its success is actually dependent on how well the caregiver cares for him/herself. In other words, if the caregiver becomes ill, who will care for the care-receiver? Before you get to that place, please read this handbook.
This handbook explores a number of different topics which can make the role of caregiver easier, and at the same time, help the person receiving the care. Throughout this handbook, caregiving refers to the person giving care, and care-receiver the elderly person receiving the care.
Below are two checklists, one focusing on the care-receiver and the other on the caregiver. They are included as general guidelines to help insure an optimal level of health, safety and comfort for both your care-receiver and yourself, the caregiver.
Check list for care-receiver
Check list for the caregiver
Chapter 1--Common Problems in Caregiving
The first step in organizing a rational care plan is making a list of needs. As family members or friends care for an impaired elderly person, several questions present themselves:
What are his/her needs?
In answering these questions you are developing an important List of Needs of the impaired elderly person, and bringing into perspective the caregiver's needs as well. The questions do not have easy answers and the solution may vary in every situation. The care of an impaired older person can create stress that affects the ability of the caregiver to continue giving necessary levels of care. The stress experienced may be physical, financial, environmental and/or emotional in nature.
Providing physical care to an impaired older person can cause physical stress. General homemaking and housekeeping activities such as cleaning, laundry, shopping, and meal preparation require energy and can be tiring, particularly when added to existing responsibilities in one's own home.
Personal care required for the supervision of medications and the maintenance of hygiene can also be stressful, particularly in situations of acting-out behaviors, incontinence (loss of bladder or bowel control), colostomies, or assistance with bathing. Lifting and transferring individuals with limited mobility is not only tiring, but also can result in injury to the caregiver or the impaired person. In some instances there is the additional responsibility of maintenance of equipment such as wheelchairs or hospital beds.
The care of an impaired elderly person has many financial dimensions. For those services that cannot be provided by family members (medical, pharmaceutical, therapeutic, etc.), decisions will have to be made as to where service will be secured and how they will be paid. When money is limited, many families assist with the cost of care, causing financial burdens on all family members.
The proper home setting has to be chosen. If the care-receiver elects to remain in his/her own home, modifications such as railings and ramps may have to be installed. If the person cannot remain in his/her own home, alternative arrangements must be sought, such as moving in with a friend or relative or specialized housing (retirement hotels, senior apartments, residential care homes, intermediate care facilities, or nursing homes). If the care-receiver is to remain in the home, some major adjustments in the living arrangements and patterns of daily living will be necessary.
Providing personal care up to 24 hours a day can cause social stress by isolating oneself from friends, family and a social life. The caregiver may find him/herself becoming too tired or unable to have an evening out even once a week, or once a month. What can result is a build-up of anger and resentment toward the very person receiving the care, as the care-receiver is the cause of the lost socialization.
All of these factors often result in tremendous emotional stress. Compounding these sources of stress are the difficulties in managing one's time, juggling multiple responsibilities, and feeling the pressure of the increased dependency.
For family members providing care, the various forms of stress can result in different feelings. Anger, resentment and bitterness about the constant responsibilities, deprivation and isolation can result. This is also a time when many of the unresolved conflicts from parent-child relationships resurface and can intensify, causing anxiety and frustration. There might even be the unspoken desire, at times, to be relieved of the burden through institutionalization or even death of the care-receiver. This desire is frequently and swiftly followed by feelings of guilt. All of these can be felt, then denied because they seem unacceptable. The person giving care needs to be assured that, in fact, these feelings are common even though they may not be expressed. There are resources that can help caregivers. The remainder of this book will address those resources, such as joining a caregiver support group, using community resources and above all, caring for yourself the caregiver.
Chapter 2--Types of Help Available
Family or Friends
First make a detailed inventory of any assets individual family members and friends can contribute, including the assets of the impaired elderly person needing the care. Assets include available time, skills, space, equipment, the strengths of the person in need care, and most important money. Sit down with all the family members (or at least as many as are agreeable) and work out a plan for giving help. This involves defining and agreeing upon what tasks will be performed, by whom, on which days, and so forth. For example, Aunt Martha can cook, Uncle Peter can mow the lawn and Mary can check on Mom twice a day.
Some situations may allow for exchanging support services such as the Caregiver Exchange through Area Agency on Aging. A friend who has similar caregiver responsibilities may care for both impaired individuals one day a week in exchange for your providing the care on another day. Another exchange situation might include making a spare room available to a college student for his/her help with care of the care-receiver, in return for free room and board.
Community Agency Help
When family or other volunteer help is not available or cannot meet your needs, caregivers or care-receivers may wish to seek help from agencies. A wide range of help may be available. Some may be covered by private insurance, Medicare (and/or a supplemental program of your State). All of it can be purchased. Sometimes the service costs may be based on the income of the care-receiver. Each agency has its own fee structure; you may want to ask about their arrangements before ordering the service.
Services for Impaired Elderly
Adult Day Health Care: This is for people who are physically and/or mentally frail. It offers a range of therapeutic, rehabilitative, and support activities, including nursing, rehabilitation, assistance with life activities, social work services, meals, and possible transportation, provided in a protected setting for a portion of the day, one to five days a week, usually during weekdays.
Chore Workers/Handypersons Services: Includes heavy-duty housecleaning, minor home repairs, yard work, installing safety devices, and winterizing homes.
Companionship Services: Companions visit isolated and homebound individuals for conversation, reading, letter writing, and general light errands.
Escort Services for the Elderly: These services provide personalized accompaniment to service providers as well as personal assistance.
Geriatric Assessment Units and Special-Care Units : Specialized geriatric units, both inpatient and outpatient, exist in some hospitals and medical centers; e.g., SOCARE, API They provide coordinated multi-disciplinary diagnostic services to older patients.
Home Delivered Meals: Some nutritional programs as well as well as specialized meals-on-wheels programs offer home delivered meals to the frail, homebound aged. Subsidized programs ask for voluntary contributions, while others may require full payment cost for delivery of a hot, well balanced lunch, and sometimes cold evening meal.
Home Health Aides: Provide personal care to individuals at home (These services may be covered by health insurance if ordered by a physician.) Aides assist with eating, dressing, oral hygiene, bathing, colostomies, administering medications, etc., as well as light household tasks.
Home Health Care: Organized programs of nursing, social work, occupational therapy, physical therapy, and other rehabilitation services to individuals in the home.
Homemaker Services : Provided by non-medical personnel, services include shopping, laundry, light cleaning, dressing, preparation of meals, and escort services on medical visits. Homemakers can be of great help in supplementing help provided by family members, or providing relief when family caregivers need a break. Homemakers can be secured through in-home health care agencies, the Area Agency on Aging, the Department of Social Services, and religious groups and organizations. Some agencies provide bonding and training for their homemakers while others provide only a registry of homemakers' names and phone numbers, in which case you must thoroughly check references and draw up a contract for the required services.
Hospital and Surgical Supply Services: Supply houses rent or sell medical supplies and equipment like hospital beds, canes, walkers, bath chairs, oxygen and other equipment. Consult your Yellow Pages.
Housekeeping Services : These usually include cleaning, shopping, laundry, and meal preparation.
Housing Assistance: Housing assistance programs exist to help in the search for senior housing, shared housing, and finding emergency shelters, such as Heartland Human Relations and Area Agency on Aging.
Nutritional Programs: Congregate meal programs feed many older adults as a group in a senior center, community center, or school. A noonday meal is provided, containing one-third of the recommended USDA dietary allowance, usually for a voluntary contribution. Additionally, some centers provide recreational and educational activities.
Occupational Therapy: Occupational therapy, or OT, is restorative, to enhance or restore skills necessary for daily living. It should be provide by a qualified occupational therapist who is referred by your doctor.
Physical Therapy: Physical therapy, or PT, is rehabilitative therapy to maximize mobility. It should be provide by a qualified physical therapist, usually recommended by your doctor or hospital.
Respite Care Services: Respite care programs provide temporary and in some instances up to twenty-four hour care to give relief to primary caregivers. The care may be provided in the person's home, at an adult day care center, or other facility.
Senior Service Teams: Regional/County Mental Health teams working together to provide mental health screening, needs assessments, and short-term counseling services to seniors.
Skilled Nursing Services: These specialized services are provided for specific medical problems by trained professionals through local home care agencies. Your doctor must prescribe nursing services.
Speech Therapy: Speech therapy is provided by a qualified speech therapist to overcome certain speech and communication problems. The doctor usually recommends this.
Social Day Care: Provide supportive but not rehabilitative services in a protected setting for a portion of the day, one to five days a week. Services may include recreational activities, social work services, a hot meal, transportation, and occasionally, health services.
Telephone Reassurance: Friendly telephone calls are provided by agencies or volunteers offering reassurance, contact and socialization. Telephone reassurance can be a lifeline for older people who must be left at home alone during the day.
Transportation: Transportation services provide travel by automobile or specialized vans to and from medical care. Community agencies and service providers such as Dial-a-Ride, Red Cross Wheels, Cancer Society, and Life Line are but a few.
Chapter 3--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 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 wich you give your care-receiver and yourself.
Put a number from 1 to 10 to best describe your feelings. Number 1 is no feeling, numbers between express stronger feelings with 10 being strongest feeling.
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.
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.
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.
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:
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:
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.
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;
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!
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
Chapter 4--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 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.
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:
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
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
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:
General Tips for Helping the Older Person to Eat Well
In addition to books, recipes and literature, the organizations listed below are valuable in providing tips, ideas, counseling, and reminders that you are not alone. They can help make the gradual transition to improved eating habits: (Addresses listed were local San Diego . For same or counterparts in your locality check your telephone directories or contact United Way : American Heart Association; American Diabetes Association; American Cancer Society; Arthritis Foundation; Dietetic Association; United Ostomy Associates.
Chapter 6--Medical Aspects of Caregiving
Encouraging routine physical examination
As a caregiver, you are in a position to help your care-receiver along the road to good health care by encouraging routine physical examinations. You are valuable in helping the care-receiver talk to their doctors and other medical personnel. You can follow through with their medical treatment at home.
However, it is important to remember that the primary responsibility for medical treatment rests between the doctor and the patient. If there is any doubt about what you should or should not do, the doctor should be consulted. You can help your care-receiver to understand his/her medical treatment and encourage the care-receiver to be involved in making decisions. In medical treatment, it is often tempting to decide what is best for the patient, but it is best to recognize the care-receiver's need to choose. We all need control of our lives, and this is especially true for a person who needs the help of others. If there are serious concerns about decisions being made, caregivers should discuss the matter openly with the doctor.
Keeping Records and Managing Medications
Caregivers can help older people maintain medical records for use by the doctor. Arrangements can be made through the doctor's office to send for previous records that could be helpful in treatment. This may require getting Releases of Medical Information signed by the care-receiver. You also should keep a list of all medications (both prescribed and over-the-counter) being used. The same medications that are helpful in easing pain, stopping infection, controlling heart rate and keeping people healthy can also cause serious problems.
Because many older adults take several medications at one time, it is possible that these drugs can interact with one another and be a danger. If more than one doctor is prescribing medications, it is important to keep each doctor aware of the drugs that are being taken. You can keep them informed by taking all your drugs in a paper sack or a list of all your drugs to each doctor. Having one pharmacist that fills all of your prescriptions is a way to prevent taking drugs that interact and cause problems. Over-the-counter or non-prescription drugs also can cause problems. Talk with your pharmacist before using them.
If you find the medicine schedule confusing or difficult to follow, ask your pharmacist about preparing all medicines in blister packs.
Below is a sample of "current medication list" which includes the essentials: name of medication, sample of the medication taped beside its name, the reason for the medication, the dosage and the time the medication is taken:
Current Medications List
If your care-receiver is taking several medications at different times throughout the day, it may be helpful to develop a second list to assist you with daily medication set-ups; this list may be color coded, or may have the names of the medications grouped in the times to be taken each day. For medications taken several times a day, their names will appear several times on your list as in the example below:
Daily Medication Set-up
- Time of Day Medication is given, AM + PM - List all Medications for Each Time
Choosing a Doctor
If you don't have a doctor, choose one carefully. There are several referral sources you can utilize: 1) a friend who is satisfied with his/her physician for a referral; 2) your County Medical Society; 3) Physician Referral Service; 4) A neighborhood hospital (some offer a physician referral service.)
The doctor is a valuable resource. If you are having a difficult time managing your care-receiver at home, or an acute illness occurs, the doctor may assist with related health care concerns. Your care-receiver may have to be hospitalized. The doctor may assist by making a home health care referral. Once hospitalized, the doctor can assist in placement issues or home health care upon discharge. If he/she doesn't offer it, you may request it.
If you are dissatisfied with your doctor, consider:
Arranging the Doctor Appointment. Some questions to ask when you make a first appointment:
It is useful to look at the following three areas
Planning For Emergencies
Chapter 7--Emotional and Intellectual Well-being
Each human being is a combination of body, mind, and spirit; we should be aware of how these parts interact. For example, people may have powerful emotional responses while facing the many challenges which life presents. Thus, some may often appear cheerful and optimistic while others are anxious and unhappy. In later years, we usually continue our basic moods, but the ways we express our feelings often become more obvious.
Depression: Signs and Causes
In the midst of losses, such as physical changes, death of friends or loved ones and reduction of income, older people may begin showing signs of depression. Some things to look for are:
If older people brood about their unhappiness, much of their energy is focused on worry. Part of that worry may relate to the fear that they will become forgetful and unable to manage their affairs. This worry can lead down the path to more depression, which may cause physical problems.
In exploring the cause of depression, the following questions should be asked:
Once these questions have been answered, steps can be taken to relieve the depression. It will take some work from both the caregiver and the care-receiver to change habits and routines. Prolonged depression causes biochemical changes in the brain, usually requiring treatment with medication. The doctor is a good person the contact to find help for treatment of depression. Other resources are County Mental Health Centers, psychologists, counselors or clergy.
Suicide among the elderly is a significant and ever increasing problem. Statistics show that 27 percent of all suicides in San Diego county (1985-87) were committed by people 60 years of age and older. Nationally, elderly (65+ years) made up 12.3 percent of 1987 population and committed 21.0 percent of suicides. Elderly complete one suicide every 1 hour and 21 minutes, or each day 17.7 seniors committed suicide.
Unlike other segments of the population, the elderly do not often make threats or mention suicidal thoughts to others. Therefore, it is important that caregivers also know other warning signs:
Suicide can be prevented. If the person you care for shows any of the warning signs, you can:
Death and Dying Interventions Elderly terminally ill encounter anxiety and fear regarding death:
You may wish to ease these fears through an open discussion of these fears and intervening:
Regarding the death process, a "faith system" may be of great help; if you can get the person involved in his/her religious faith, the subject of death is well covered.
Regarding fear of letting go and isolation, assist then person to get his/her "house in order." This entails a will, funeral arrangements, burial plot, etc. Also attempt to have the person and family involved discuss the situation.
Regarding meaninglessness of one's life, have the person do a "Life Script," whereby he/she writes all the good things done for others, all accomplishments, etc. Then discuss with the person that had he/she not been there to do what he/she did at that time, no one else would have, and society would have been the worse for it. So he/she did make a difference. Truly, no person is an island!
Promoting Emotional Well-being
It is important to help the elderly remain involved in decision-making as long as possible. You must stress that needing help with everyday activities does not mean that they cannot make decisions for themselves. Also, granting others the right to decide does not mean you are ignoring or abandoning them. Caregivers need to be sensitive to the right combination of giving just the right amount of assistance and no more.
Ways to promote good mental health in the elderly:
The Importance of Lifetime Learning
Research shows that reaction time may be slower in older people but they can still learn. Families and friends may need to be patient in waiting for responses. It is also important to remember that short-term memory may not be as good as it was.
The brain helps link people to the world. If we are able to process and understand what we see, hear and absorb from our senses, our experiences will become more meaningful.
Sometimes older people are incorrectly labeled as "senile"; the misconception is that they are no longer able to think for themselves. However, for the most part, older people continue to make good use of their creative powers, and as is true for all parts of the body, the brain usually will function better if it is used regularly.
Lifetime learning means exploring new ideas, whether this is from reading, listening to radio or television, trying a new hobby, or trying a new recipe. It can include lively conversation with friends and family. What it boils down to is a willingness to keep exploring the many adventures that life has to offer. The benefits of lifetime learning include more enthusiasm for life, less boredom and depression, increased feeling of self-esteem and self-respect, more interest in the surrounding world, and new ideas to share with family and friends.
Memory loss can be one of the hardest problems for both the care-receiver and the caregiver. Some memory problems are treatable, some are not. Therefore, it is important for the doctor to determine the causes of memory loss in the individual. Forgetfulness, even inability to recognize familiar faces and places, might result from such treatable causes such as malnutrition related to improper eating habits, alcohol, side effects of medications, loneliness, isolation, few chances to socialize with others, sensory impairment (decreased vision, decreased hearing), surgery or accident resulting in injury to body, viral infections or other illness, or depression or other mental illness.
People who have losses in hearing and vision may have trouble understanding things consequently negatively affecting their emotional well-being. Basic aids to hear and see are vital. At times an older person may be cut off from the world because of wax in the ears or worn out hearing-aid batteries. Glasses may need to be adjusted or perhaps just cleaned. Good lighting, without glare, is important. Magnifying glasses or large print can make reading easier.
For people who are confused, the following tips can be useful:
For people who are acting out, being disruptive, or have other undesirable behaviors, it is best to not antagonize or confront but to temporarily remove your presence from the person, giving the message that "I love/care for you but not this behavior." Below are some suggestions to minimize undesirable behaviors:
Because many older people enjoy recalling events from past years, families and friends should encourage the sharing of stories. Activities which stimulate the brain (visiting with others) can contribute to the goal of continued lifetime learning.
Often, older people can become happier, more productive individuals when they are encouraged to perform fun, brain-stimulating activities. The following activities are especially good for homebound elderly:
Chapter 8--Legal and Financial Affairs
Older people continue to be concerned about management of their assets and property. However, they may be unable to participate because of illness, confusion or loss of memory. It is important to involve them whenever possible.
Compiling an Inventory
Develop an inventory which lists all assets and liabilities of the older person. The following items should be included: bank accounts, pass books, certificates of deposit, money market funds, stocks, bonds, precious metals, jewelry, real estate deeds, promissory notes, contracts, insurance policies, safety deposit boxes (including location of the key), and retirement or pension benefits. Location of the records for each asset and liability also should be included. Other important documents, such as birth and marriage certificates, social security numbers, divorce decrees and property settlements, income tax returns (state and federal), death certificate of spouse (if any), and wills (including the attorney's name and executor) or trust agreements, should be listed and the locations designated. If able, the older person should compile the list. If unable, a family member, attorney, banker, accountant or certified financial planner can help compile the inventory which should be copied and kept in a safe, obvious place, possibly with a relative or friend. It is important that the document be updated every year.
Managing a Will and Financial Affairs
An objective of financial and estate planning for older people is to plan for the orderly distribution of the estate upon their death, according to their desires. Consequently, it is important for people to have a will drafted, which incorporates the above inventory and states how property is to be disposed of upon death. Everyone over the age of 18 should have a will or a similar legal document.
If a person does not have a will, an attorney should be consulted immediately. Proper planning is essential and powers of attorney or trust agreements should be executed while a person is still competent. Otherwise, transfer of responsibility for management of the person's financial affairs to someone else must be completed through a court action, and costs spent in clearing up Probate problems come directly out of the person's assets, diluting whatever estate is left after death.
Remember, as caregivers concerned about the financial affairs of a care-receiver, you should not get directly involved without legal authority. Acting without clear legal authority, even with the best intentions, can cause serious problems.
The legal mechanisms available for surrogate decision making are: durable power of attorney (DPA), probate conservatorship, durable power of attorney for health care (DPAHC), and ( California only -- check to determine if your State has comparable laws.)
Durable Power of Attorney
Durable Power of Attorney is a written legal document giving someone other that the Principal the authority to handle the Principal's financial decisions. It must be signed by the Principal while the Principal is still legally competent. The DPA is valid without time limit until the Principal either revokes the DPA or dies, or the court revokes the DPA due to mismanagement. The preferences of the Principal regarding the management of assets can be specified. This power to manage assets can be transferred immediately or can be designated to go into effect when it is determined that the Principal has become mentally incapacitated. Financial decisions made by an individual given DPA by the Principal are binding on the Principal and his/her successors, so caregiver and care-receiver are urged to seek the advice of an attorney.
Probate Conservatorship or Conservatorship of Estate
Probate Conservatorship or Conservatorship of Estate allows for the management of the Principal's money and other property when the Principal presently lacks the capacity to either decide or appoint another to decide financial decisions in his/her behalf. Court proceedings to designate a conservator are required. This is a difficult and extreme procedure but may be necessary if the care-receiver is already incapacitated to the extent that he/she is unable to manage personal financial affairs.
Durable Power of Attorney for Health Care (DPAHC)
is a written document which must be signed by the Principal while he/she still has the capacity to make decisions. The DPAHC gives someone other than the Principal authority to make medical treatment and health care decisions on behalf of the Principal for up to the maximum of seven years after the document is signed. It allows one to specify ahead of time how he/she wishes these decisions to be made. Wishes regarding extraordinary supportive care, including breathing machines and tube feeding, can be addressed in the Durable Power of Attorney. All adults should have a Durable Power of Attorney for Health Care.
Lantern-Petris-Short (LPS) Conservatorship
( California only -- check for comparable laws in your State) or conservatorship of person is a court-ordered process which enables a person to get the psychiatric and/or medical care needed but by reason of mental illness is refused. The court determines if the Conservatee, in addition to receiving the necessary psychiatric treatment, may also retain or be denied the right to vote, possess a driver's license, enter into contracts, or refuse non-psychiatric medical treatment. The Conservator may be a relative, friend or an appointee from the Conservator's office. The Conservator may be given the right to require and authorize the conservatee to receive involuntary psychiatric and/or medical treatment and supervises and assists in making proper living arrangements, including placement in a Residential Care or a nursing home when indicated by the doctor. In order to start the process, one consults either with his/her attorney or calls the Office of the Counselor in Mental Health. An individual has to be adjudicated to be gravely disabled before being placed on an LPS conservatorship. Grave disability is defined as the inability to provide for one's food, clothing, shelter and proper medical care due to a mental disorder.
Selecting an Attorney
It is important to select an attorney who is knowledgeable in the areas needed (estate planning, will drafting, probate or conservatorship). Ask friends or other professionals for recommendations, or contact a Lawyer Referral Service, County Bar Association, or Senior Citizens Legal Services. Before agreeing upon a particular attorney, ask if he/she has previously done what you require.
Liability of Caregiving
Anyone who accepts the responsibilities of a caregiver must also understand that there are a number of legal duties or liabilities that come with it. Many states including California have passed elderly abuse laws. Caregivers are bound by these laws in two ways: not to abuse the elder person (physically, mentally or monetarily) and report any incidents of abuse or suspected abuse to ( California residents only -- the Adult Abuse Reporting line 476-6266 or 1-800-523-6444). (Residents of states other than California : Check you local telephone directory for the Adult Abuse Reporting telephone number or contact your county mental health services for guidance.)
As a caregiver, you must provide a clean and safe environment, nutritious meals, clean bedding, and clothes. At the same time, if you are in charge of the elderly person's finances, you must use that money properly, purchasing necessary services for the benefit of the person to whom care is given. Failure to provide care, failure to get care, and failure to purchase care are all forms of abuse or neglect.
In addition, caregivers may not physically, sexually or psychologically abuse the person receiving the care. Yelling, screaming, withholding affection, etc., are as much an abuse of the person as is striking the person with the hand or with objects. Therefore, if you are contemplating becoming, or are now a caregiver, you must be ready to accept the physical, psychological and legal duties to provide the necessary care. If you are reaching a point where you are no longer able, physically or emotionally, to provide the proper care, we urge you to consider the alternatives to personal caregiving and to seek help with this decision from a counselor .
Chapter 9--When is it Time to Stop Caregiving?
As we have stated repeatedly throughout this booklet, caregiving is a very stressful situation. Stress either causes or exacerbates some 70 to 90 percent of all medical complaints, including tension and migraine headaches, high blood pressure, asthma, nervous stomach, bowel problems, and chronic lower back pains. There is research evidence indicating stress plays a role in a person's susceptibility to heart disease, stroke, and cancer.
Stress has also been implicated in psychological disorders such as anxiety reactions, depressions and phobias, as well as poor work performance, drug and alcohol abuse, insomnia, and unexplained violence. If you are experiencing any of the above, it is extremely important that you learn and use various techniques for stress reduction (some are mentioned in this booklet), contact one of the professionals in Appendix A or come to the decision, both for your well-being and that of your care-receiver that It is time to stop caregiving.
Below are some telltale signs which can help you assess when you have reached this fork in the road; seek help professional help, utilize more stress reduction methods, or stop caregiving:
While these are not exclusive, they indicate a classic picture of caregiver burnout. The treatment for caregiver burnout is simple -- get help and get away for extended periods, either through stress management respite help or through a complete change in caregiving.
No one can remain a full-time caregiver forever; the job is much too strenuous and stressful. The point we wish to set forth is: When should I say this is my limit; I am not able to do any more. Be honest with yourself, and when that limit has been reached, STOP! Research alternatives, request help from qualified professionals, and rest easy, because you did the right thing!
Chapter 10--Choosing a Residential Care Facility
In making the decision to seek an alternate living arrangement for your care-receiver you will first need to consult with your physician. The physician can be your best ally since most facilities require a current complete physical exam and the physician can assess the level of care your care-receiver needs. This is important in order to determine which type of licensed care facility you will be seeking, from the Acute Hospital to Sub-acute Skilled Nursing Facility (SNF), Intermediate Care Facility (ICF) or Residential Facility for Elderly (RFE) (more commonly referred to as Board and Care or Retirement Homes). The RFE is for non-medical care and supervision which may include personal services (help in bathing and grooming, guidance in dressing, aid in taking self-administered medications) and help with other daily living activities.
Seek a licensed facility, since people who need care and supervision are often defenseless against abuse or exploitation. The law requires that care facilities be licensed. So when you select a care facility, check for the license to assure the protection provided by law and quality care for your loved one.
What Should I Look for When I Visit a Care Facility
It is ideal if both you and your care-receiver could preview a care facility prior to deciding. Both prior to and during the preview process you have the opportunity to further discuss your feelings in making the decision. Since you have many things to do during your visit, you will find the outing less stressful and easier afterward to evaluate if you organize your thoughts beforehand, write down the questions you wish to ask, carry this checklist during your visit and make notes while looking around and talking to different people. Some items you may want to cover during your initial visit to insure quality care are: