THE CAREGIVER'S HANDBOOK
Go to Table of Contents
Assisting Both the Caregiver
and the Elderly Carereceiver
Developed by the Caregiver Education and
Support Services, Seniors Counseling and Training, Case Management Services of
the San Diego County Mental Health Services, 1250 Moreno Blvd., San Diego, CA
92110.
Formatted and posted to the World Wide Web
by
Dr. Stall is a geriatrician (a physician who specializes in older
adults) living in the Buffalo, NY area.
This 9-part online posting of the The Caregiver's Handbook is
made with permission from the Caregiver Education and
Support Services, Seniors Counseling and Training, Case Management Services of
the San Diego County Mental Health Services, 1250 Moreno Blvd., San Diego, CA
92110.
|
Credits, Permissions, Acknowledgments & Foreword |
Personal Care |
Emotional and Intellectual Well-Being |
|
Introduction |
Nutrition |
Legal and Financial Affairs |
|
Caring for the Caregiver |
Medical Aspects of Caregiving |
Appendices |
End of Table of Contents
This 9-part online posting of
the Caregiver's Handbook is made with permission from The Caregiver
Education and Support Services, Seniors Counseling and Training, Case
Management Services of the San Diego County Mental Health Services, 1250 Moreno
Blvd., San Diego, CA 92110. Questions
concerning the Handbook's content should be referred to that agency or to Dr.
Robert S. Stall.
The titles of the San Diego County government and private sectors
entities in the original publication, and their locations and telephone numbers
have been, in most cases, deleted from this version as they would not be
ordinarily available as resources to readers who are outside of San Diego
County. Instead, most entities were identified as functions or in some other
manner to facilitate identification of counterparts where the handbook might be
used.
Readers are reminded that this handbook was prepared in 1990 or earlier and
much has happened since in caregiving and other social services. It is
therefore suggested that the HB be referred to as a general guide, and
specifics checked, as appropriate, with physicians, healthcare providers, state
and community social services, and caregiving resources generally for more
up-to-date information.
Produced by The Caregiver Education and Support Services Seniors Counseling and Training Case Management Services of San Diego County Mental Health Services1250 Moreno Blvd. San Diego, CA 92110(619) 692-8702, 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 or Dr. Stall cannot assume responsibility for the accuracy of the information printed herein, nor does this handbook provide listings of all resources.
Copyright 1990
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.
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. Acknowledgment 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 rerevisions in order to arrive at this handbook; thank you to the San Diego County Senior Teams, the Southern Regional Resource Center, Frank Dwinnell, MD, Stanley Rest, Ph.D., Donna Pasanen, the Telephone Friends, several caregivers and carereceivers 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 Caregiver's 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, CA92110.
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 adaptations 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 carereceivers 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, MD, Director, Seniors Only Care Clinic and Alzheimer's
Disease Diagnostic and Treatment Center University of California, San Diego
End of part 1
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 can not 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 carereceiver? 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 *carereceiver* the elderly person receiving the care.
Below are two checklists, one focusing on the carereceiver 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 carereceiver and yourself, the caregiver.
__ All legal and financial matters are in order and available
__ Physical and dental appointments are kept annually or more often if needed
__ The home environment is clean, safe and pleasant
__ Nutritional needs, exercise, sleep and social activities are maximized to the degree possible
__ Personal hygiene and grooming are done daily
__ Respite services have been utilized monthly/weekly
__ Level of care is reviewed monthly to ensure carereceiver is able to remain in the home
__ I am getting out/exercising at least once a week
__ I am getting at least seven to nine restful hours of sleep a night
__ I talk with or visit up to three friends or relatives weekly
__ I keep annual medical and dental appointments
__ I am taking only the medications as prescribed to keep up my health
__ My legal and financial papers, including wills, are in order and available
__ I have checked a new resource regarding caregiving each week
__ I have read and am aware of the Caregiver's Bill of Rights
__ I am eating three balanced meals a day.
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?
-- What kinds of care are needed to allow the elderly/impaired person to remain in the community?
-- Who is going to provide the care? When? How?
-- Should the carereceiver remain in his/her own home, live with the children or other relatives or move to other surroundings (retirement apartments, residential care, intermediate care, skilled nursing facility or other)?
-- How can living arrangements be changed to help the person stay in the home or become more independent?
-- If outside services are needed, does the impaired person have the resources to pay for them? How can they be obtained?
-- How can care be given to the person in need without denying attention to others (spouse or children) for whom the caregiver also has responsibility?
-- Do you as the caregiver feel tired or frustrated from caring for an older person?
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.
Physical Stress: 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.
Financial Stress: 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.
Environmental Stress: The proper home setting has to be chosen. If the carereceiver 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 carereceiver is to remain in the home, some major adjustments in the living arrangements and patterns of daily living will be necessary.
Social Stress: 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 carereceiver is the cause of the lost socialization.
Emotional Stress: 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 indifferent 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 carereceiver. 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.
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 workout 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.
Caregiving Exchanges: 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 carereceiver, in return for free room and board.
When family or other volunteer help is not available or cannot meet your needs, caregivers or carereceivers 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. Sometime the service costs may be based on the income of the carereceiver. Each agency has its own fee structure; you may want to ask about their arrangements before ordering the service.
Note: See Appendix A for a list of names and telephone numbers of the agencies mentioned below. (Mike: Appendix A is presented in this SeniorNet version minus the telephone numbers which are only applicable to San Diego County. Users of this Handbook might want to identify counterpart agencies in their county or service region and list them in the Appendix by name and telephone numbers.)
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 provided 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 LifeLine are but a few.
End of part 2
Caregivers experience mixed emotions. Love for your family member and the satisfaction you derive from helping may coexist with feelings of resentment about the loss of your privacy and frustration at believing you have no control over what happens. You may find it hard to accept the decline of the special person for whom you are giving care. Such feelings will depend in part on your prior relationship with your carereceiver, the extent of your responsibilities as a helper, and daily activities in your life(professional, social, and leisure pursuits). Your conflicting emotions may cause guilt and stress.
To guard against becoming physically and emotionally drained, you must take care of yourself. You need to maintain your health and develop ways to cope with your situation.
Below is a scale to evaluate your level of caregiving. It has been adapted from an article in *Co-op Networker; Caregiver of Older Persons* by Judy Bradley. It is an excellent effort to provide some guidelines for caregivers and to evaluate your level of care and value which you give your carereceiver and yourself.
The scale is a 1-10 continuum which describes the various styles of caring. Circle the number or numbers which best describe your level of care.
1. Abandonment: to withdraw protection or support or to actively abuse your carereceiver.
2. Neglect: to allow life-threatening situations to persist or to display consistent coldness or anger.
3. Detachment/Aloofness: to maintain an air of detachment or being aloof, perfunctory in your care, no genuine concern, only obligation. Concerned only with physical well-being of your carereceiver.
4. General Support: given freely, with a guarded degree of warmth and respect, occasional feelings of manipulation. Concerned with both emotional and physical well-being of carereceiver.
5. Expressed empathy: the ability to feel what your carereceiver feels. a quality relationship where feelings can be freely expressed and caringly received with non-judgmental positive regard.
6. Sympathy: feeling sorry for carereceiver, giving sympathy, focusing on the losses experienced by carereceiver.
7. Occasional over-involvement: care characterized by periodic attempts to *do for* rather than *be with.*
8. Consistent Over-involvement: carereceiver regarded as object of series of tasks which must be performed.
9. Heroic Over-involvement: care characterized by sometimes frantic and desperate attempts to provide for every possible need your carereceiver has; increased dependence, carereceiver not allowed independence.
10. Fusion of personalities: between caregiver and carereceiver. The caregiver's needs no longer have any value or meaning; the caregiver has abandoned him/herself to needs of the carereceiver.
You can place yourself on the Scale of Caregiving to determine how you value your carereceiver as compared to yourself. The low numbers give little or no value (honor) to the needs of your carereceiver. The high numbers (8, 9,10) give little or no value to your own needs as an individual and as a caregiver. The numbers in the middle are where you find a balance between undercare and overcare. Neither of the two extremes is healthy; they represent positions where you are not helping your carereceiver.
Acknowledge your feelings: Your feelings have a lot to do with the way you view and cope with caregiving. All feeling are legitimate, even those that may seem disturbing to you (including anger, frustration, and sadness). Recognizing and accepting your emotions are the first step toward resolving problems of guilt and stress. Learn to express your feelings to family members, friends, or professionals. Take the following caregiver Stress Test; determine how much stress you are under.
The following test will help you become aware of your feelings, pressures and stress you currently feel.
-- I find I can't get enough rest.
-- I don't have enough time for myself.
-- I don't have time to be with other family members beside the person care for.
-- I feel guilty about my situation.
-- I don't get out much anymore.
-- I have conflict with the person I care for.
-- I have conflicts with other family members.
-- I cry everyday.
-- I worry about having enough money to make ends meet.
-- I don't feel I have enough knowledge or experience to give care as well as I'd like.
-- My own health is not good.
If the response to one or more of these areas is *usually true* or *often true* it may be time to begin looking for help with caring for the carereceiver and help in taking care of yourself.
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!
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.
Caregiving is probably one of the many conflicting demands on your time. It is important to set realistic goals. Recognize what you can and cannot do, define your priorities, and act accordingly. Turn to other people for help - your family, friends, and neighbors. Prepare a list of tasks for anyone who may offer assistance. The list may include:
-- running an errand for you,-- preparing a meal,-- taking your carereceiver for a ride,-- taking our children after school one day.
Do not expect that others will ask if you need help. It is up to you to do the asking.
Turning to family members or friends for emotional support and help can be a mixed blessing. Their visits may make you feel less alone and better able to deal with caregiving responsibilities. They can give you a break by spending time with your carereceiver.
However, other relatives or friends can be critical of the way you provide care. They may feel the house is not kept clean enough; or they may not like the way your carereceiver is dressed. Recognize that they are responding to what they see at that time and are lacking the benefit of experiencing the whole picture and any gradual changes in your carereceiver's condition. Harsh criticism may be a response to their own guilt about not participating more in the care process.
Try to listen politely to what is being said (even though this might not be easy). However, if you and your carereceiver feel comfortable with the way you are managing the situation, continue to do what meets your needs. Schedule a family meeting from time to time to help other family members understand the situation and to involve them in sharing the responsibilities for caregiving.
Investigate community resources that might be helpful. Consider using in-home services or adult day care. Employ a homemaker to cook and clean, or an aide to help your carereceiver bathe, eat, dress, use the bathroom or get around the house.
When you need a break from providing care to your carereceiver, look at respite care. For example, a companion can stay with your carereceiver for a few hours at a time on a regular basis to give you time off. Or have your carereceiver participate in an adult daycare program where he or she can socialize with peers in a supervised setting; this gives your carereceiver a necessary break from staying home all the time. Hospitals, nursing homes, and particularly residential care homes offer families the opportunity to place older relatives in their facilities for short stays. The Residential Bed Availability Hot Line, your doctor, and the Area Agency on Aging can assist with arrangements.
Your general well-being affects your outlook on life and your ability to cope. Taking care of yourself is important and involves:
Food is fuel for your body. Skipping meals, eating poorly, or drinking lots of caffeine is not good for you. Learn to prepare and eat simple, nutritious, well-balanced meals. Avoid alcohol above 2-3 ounces daily.
Being physically active can provide you with an outlet that is relaxing and makes you feel good.
Stretching, walking, jogging, swimming, or bicycling are examples of invigorating exercises. Consult your doctor before starting an exercise routine. Your doctor can help design a program that fits your individual needs.
Leisure time allows you to feel better and more able to cope with your situation. Having time to yourself to read a book, visit a friend, or watch TV can also bring enjoyment and relaxation, and break the constant pattern and pressure of caregiving.
Sleep refreshes and enables you to function throughout the day. If your carereceiver is restless at night and disturbs your sleep, consult your doctor and fellow caregivers on possible ways to handle the situation. You may need to have outside help in the evenings to allow you time to sleep.
If you are unable to sleep because of tension, practice relaxation exercises. Deep breathing or visualizing pleasant scenes can be helpful. Continued sleep disturbance may be a sign of major depression, which needs medical attention.
This is an old expression popularized by Norman Cousin's book *Anatomy of an Illness*, in which he describes his battle with cancer and how he *laughed* his way to recovery. His hypothesis and the subject of many studies suggests that there are positive effects to be gained from laughter as a great tension-releaser, pain reducer, breathing improver, and general elevator of moods. It sounds miraculous, is not proven, but studies continue. Groups such as the International Conference on Humor and many hospitals use *positive emotion rooms* and *humor carts*. In short, humor therapy is valuable and it helps us through difficult or stressful times.
So for yourself and your carereceiver:
If you find that you are feeling hopeless, and humor or laughter is not affording you the up-lift you want, contact a counselor. And remember, laughter is the best medicine. Try it, you'll like it!
Sometimes people handle stressful situations in ways that are destructive. Instead of openly expressing feelings, they overeat, use alcohol, drugs, or cigarettes to mask their difficulties. Such escapes do not solve the problem and are harmful to health. If the strain results in neglecting or abusing the carereceiver, it is a vary serious problem. It is also against the law!
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.
Continue to pursue activities and social contacts outside your home. Do what you enjoy. Go to a movie, play a musical instrument, or get together with friends for a card game. It may not be easy to schedule these activities, but the rewards for having balance in your life are great. Taking care of yourself benefits you and your carereceiver. Meeting your own needs will satisfy you and give you additional strength and vigor to bring to your caregiving tasks.
End of part 3
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 carereceiver.
· 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:
Constipation or Irregularity
Many elderly become constipated due to medications and inactivity. If your carereceiver is experiencing this problem the doctor or nurse can suggest a stool softener. Other important factors are:
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 carereceiver. Here are some suggestions for encouraging independence:
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.
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:
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 carereceiver. However, if you notice that your carereceiver is sleeping for brief periods during the night, it could indicate a problem. Notify your doctor and discuss your concerns.
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.
Be aware of changes in the carereceiver's health and abilities. Your plans for care will change as the carereceiver changes.
End of part 4
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.
The table that follows summarizes essential nutrients (which you may also finds listed on food labels) and their functions:
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.
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.
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; ½ 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; ½ 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 ½ slices (ounces) cheddar-type cheese, 1 and ¾ 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, ½ cup cooked fruit or vegetable, 1 medium fruit, such as an apple or banana, ½ cup juice.
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 carereceiver say the food tastes strange, it might help to: -- Check teeth for tooth decay or gum infection,
Plan meals and snacks to include the person's favorite foods. -- Use a variety of foods from each of the four food groups, -- Prepare foods that provide a variety of texture, color, and temperature, -- Provide a pleasant setting, i.e., flowers, place mats, matching dishes, good lighting.
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.
End of part 5
As a caregiver, you are in a position to help your carereceiver along the road to good health care by encouraging routine physical examinations. You are valuable in helping the carereceiver 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 carereceiver to understand his/her medical treatment and encourage the carereceiver 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 carereceiver'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.
· 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 carereceiver. 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:
|
Medication Name |
(Tape Pill Here) |
Reason |
Dosage |
Take At... |
|
Estrogen |
|
Osteoporosis |
|
Morning |
|
Acetaminophen |
|
Joint pain |
|
Each meal and bedtime |
|
Warfarin |
|
Atrial fibrillation |
|
Bedtime |
|
Calcium |
|
Osteoporosis |
|
Morning |
If your carereceiver 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:
Morning
Noon
Evening
Bed Time
· 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 carereceiver at home, or an acute illness occurs, the doctor may assist with related health care concerns. Your carereceiver 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:
1. What do you want from your doctor?
2. Are these wants realistic (e.g., cure of an incurable disease)?
3. Have you discussed them with your doctor and/or staff?
4. Do you have a primary physician (usually internist or family practitioner) who oversees your overall medical care? (Often, sub-specialists such as cardiologists or orthopedists focus on one organ system, and do not try to coordinate the patient care.)
5. Do you keep your appointments?
6. Do you take medications as prescribed, contact the doctor if you change, and discuss your concerns with him/her?
Remember, physicians are human beings, with individual personalities, enormous responsibilities, and only 24 hours in one day. No doctor will be right for all patients. Find a doctor whose skills and style of practice suits your current needs. All patients should have one physician to coordinate their care. Frequently changing doctors is likely to result in poor quality care of chronic or complex problems.
Older individuals with multiple medical problems or difficulties with memory or intellectual functions may benefit from a comprehensive geriatric assessment program. (This guide identified one program in the San Diego area as the UCSD Seniors Only Care Program (SOCARE). Your physician or local Area Agency on Aging may have information on comparable programs in your community.)
Arranging the Doctor Appointment. Some questions to ask when you make a first appointment:
On the first visit to the doctor, the patient's list of current medications (Table 4) and previous medical records should be given to the doctor. If the visit is for a specific problem, have the following information for the doctor:
1) the symptoms,
2) how long they have been present,
3) how often they happen, how bad they are.
Reviewing this information before the visit will help. And remember, it is important that the patient have a chance to visit with the doctor privately to discuss confidential information. Before leaving the doctor's office, meet with the doctor or the nurse to find out how you can help with treatment and what your role as caregiver should be.
It is useful to look at the following three areas:
1) What can be done now to help in the treatment of current medical problems,
2) How to recognize problems that may arise,
3) What to do in emergencies.
Having an emergency plan is important, especially when a substitute caregiver occasionally takes your place in the home. (Post phone numbers for the following agencies next to your telephone or a conspicuous place where they can easily be seen by anyone. This sentence modified for readers outside San Diego County.)
1) The 911 number for emergencies (Medical, Fire or Police), 2) The physician's number (emergency and office number),
3) The name and number of the hospital the physician and the patient prefer,
4) The number of the home health agency, if one is currently making visits to the home,
5) The Poison Center phone number,
6) The 24-hour number of the medical or oxygen supplier, if one is being used,
7) The telephone number where you (caregiver) can be reached.
Remember, observe changes and signs of illness in the carereceiver. They can help detect a medical problem. But if any doubts about health arise, CALL THE DOCTOR FOR ADVICE--
End of part 6
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.
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:
1. Is there a physical or medical problem causing the depression?
2. Have there been changes in hearing, seeing, moving, or other body functions?
3. What social contact does the carereceiver have?
4. What are the opportunities for usefulness?
5. What kind of personal losses (death of friends, relatives, or pets) have there been?
6. Is the older person getting proper nutrition?
7. What kind of mental stimulation is the person getting?
8. Has there been a difficult adjustment following retirement?
9. Is the focus entirely on the past or is there some enthusiasm about coming events?
10. Is there a possibility of reaction to medications?
11. Is there a dependency on alcohol or drugs?
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 carereceiver 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: