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Caregiver's Handbook--Part
1 of 9
Credits & Permissions
Acknowledgments/Foreword
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
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Contents
Caregiver's
Handbook--Part 2 of 9
Introduction to Caregiving
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
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Contents
Caregiver's
Handbook--Part 3 of 9
Caring For the Caregiver
Caregivers experience mixed emotions. Love for your family member and the
satisfaction you derive from helping may coexist with feelings of resentment
about the loss of your privacy and frustration at believing you have no control
over what happens. You may find it hard to accept the decline of the special
person for whom you are giving care. Such feelings will depend in part on your
prior relationship with your carereceiver, the extent of your responsibilities
as a helper, and daily activities in your life(professional, social, and leisure
pursuits). Your conflicting emotions may cause guilt and stress.
To guard against becoming physically and emotionally drained, you must take
care of yourself. You need to maintain your health and develop ways to cope
with your situation.
Below is a scale to evaluate your level of caregiving. It has been adapted
from an article in *Co-op Networker; Caregiver of Older Persons* by Judy
Bradley. It is an excellent effort to provide some guidelines for caregivers
and to evaluate your level of care and value which you give your carereceiver
and yourself.
The scale is a 1-10 continuum which describes the various styles of caring.
Circle the number or numbers which best describe your level of care.
1 2 3 4 5 6 7 8 9 10 Scale of Caregiving
1. Abandonment: to withdraw protection or support or to actively abuse your
carereceiver.
2. Neglect: to allow life-threatening situations to persist or to display
consistent coldness or anger.
3. Detachment/Aloofness: to maintain an air of detachment or being aloof,
perfunctory in your care, no genuine concern, only obligation. Concerned only
with physical well-being of your carereceiver.
4. General Support: given freely, with a guarded degree of warmth and
respect, occasional feelings of manipulation. Concerned with both emotional and
physical well-being of carereceiver.
5. Expressed empathy: the ability to feel what your carereceiver feels. a
quality relationship where feelings can be freely expressed and caringly
received with non-judgmental positive regard.
6. Sympathy: feeling sorry for carereceiver, giving sympathy, focusing on
the losses experienced by carereceiver.
7. Occasional over-involvement: care characterized by periodic attempts to
*do for* rather than *be with.*
8. Consistent Over-involvement: carereceiver regarded as object of series of
tasks which must be performed.
9. Heroic Over-involvement: care characterized by sometimes frantic and
desperate attempts to provide for every possible need your carereceiver has;
increased dependence, carereceiver not allowed independence.
10. Fusion of personalities: between caregiver and carereceiver. The
caregiver's needs no longer have any value or meaning; the caregiver has
abandoned him/herself to needs of the carereceiver.
You can place yourself on the Scale of Caregiving to determine how you value
your carereceiver as compared to yourself. The low numbers give little or no
value (honor) to the needs of your carereceiver. The high numbers (8, 9,10)
give little or no value to your own needs as an individual and as a caregiver.
The numbers in the middle are where you find a balance between undercare and
overcare. Neither of the two extremes is healthy; they represent positions
where you are not helping your carereceiver.
Acknowledge your feelings: Your feelings have a lot to do with the way you
view and cope with caregiving. All feeling are legitimate, even those that may
seem disturbing to you (including anger, frustration, and sadness). Recognizing
and accepting your emotions are the first step toward resolving problems of
guilt and stress. Learn to express your feelings to family members, friends, or
professionals. Take the following caregiver Stress Test; determine how much
stress you are under.
The following test will help you become aware of your feelings, pressures
and stress you currently feel.
Seldom Sometimes Often Usually True
Always True
-- I find I can't get enough rest.
-- I don't have enough time for myself.
-- I don't have time to be with other family members beside the person care
for.
-- I feel guilty about my situation.
-- I don't get out much anymore.
-- I have conflict with the person I care for.
-- I have conflicts with other family members.
-- I cry everyday.
-- I worry about having enough money to make ends meet.
-- I don't feel I have enough knowledge or experience to give care as well
as I'd like.
-- My own health is not good.
If the response to one or more of these areas is *usually true* or *often true*
it may be time to begin looking for help with caring for the carereceiver and
help in taking care of yourself.
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:
- eating three balanced meals
daily,
- exercising daily,
- enough sleep/rest,
- allowing yourself leisure
time.
Food is fuel for your body. Skipping meals, eating poorly, or drinking lots
of caffeine is not good for you. Learn to prepare and eat simple, nutritious,
well-balanced meals. Avoid alcohol above 2-3 ounces daily.
Being physically active can provide you with an outlet that is relaxing and
makes you feel good.
Stretching, walking, jogging, swimming, or bicycling are examples of
invigorating exercises. Consult your doctor before starting an exercise
routine. Your doctor can help design a program that fits your individual needs.
Leisure time allows you to feel better and more able to cope with your
situation. Having time to yourself to read a book, visit a friend, or watch TV
can also bring enjoyment and relaxation, and break the constant pattern and
pressure of caregiving.
Sleep refreshes and enables you to function throughout the day. If your
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.
- Sit or lie down in a
comfortable position. Close your eyes. Allow your mind to drift a few
seconds, go with it wherever it goes. Wiggle your fingers and toes, then
hands and feet, ankles and wrists. Loosen tight clothes, belts, ties. Sway
your head from side to side, gently, gently. Now you have prepared
yourself to relax physically and psychologically.
- Now concentrate, still with
your eyes closed, on some one pleasant thing you really want to think about;
maybe it is a place you have visited in the past, or your dream place of
your own imagination. It might be the seashore, or high on a hill, or in a
field of grass and flowers. Become totally immersed in the place. Smell
the smells you best remember. See the sights it offers. Hear the sounds.
Feel it, whether it be water or sand or soil or snow. Fully realize this
place or situation you are in: if it is on the sandy beach, sift your
fingers through the warm sand and smell it, hold the sand to your cheek,
smell the salt of the sea, search the skyline for gulls and terns and low
clouds in the distance. Your body is totally weightless. You are totally
in control of this scene. It is so relaxing and pleasant and beautiful,
you are breathing slowly, peacefully. This is YOUR place and no one can
take it from you.
- After you have sufficiently
experienced your peaceful imaging, whenever you have a chance, return to
your special place, close your eyes again, tune in, relive those these
special few moments in the world of your choosing where everything is
perfect and everything is yours. This relaxation exercise can benefit you
all day. Check your local library or book store for books, audio tapes,
videotapes or films on relaxing and managing stress.
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:
- try to see the humor in being
a caregiver;
- write on a card *Have you
laughed with your carereceiver today?* and place it in a conspicuous place
in the bathroom or kitchen; -- read funny books or jokes, listen to funny
tapes or watch humorous movies or videos that make you laugh;
- share something humorous with
your carereceiver, a friend, or relative; -- attend social groups where
there is a lot of comeraderie, joy and fun; -- be aware of how often you
smile; it takes much less energy to smile than to frown.
If you find that you are feeling hopeless, and humor or laughter is not
affording you the up-lift you want, contact a counselor. And remember, laughter
is the best medicine. Try it, you'll like it!
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.
CAREGIVER'S BILL OF RIGHTS
- Caregivers have the right to
receive sufficient training in caregiving skills along with accurate
understandable information about the condition and needs of the care
recipient.
- Caregivers have the right to
appreciation and emotional support for their decision to accept the
challenge of providing care.
- Caregivers have the right to
protect their assets and financial future without severing their
relationship with the carereceiver.
- Caregivers have the right to
respite care during emergencies and in order to care for their own health,
spirit, and relationships.
- Caregivers have the right to
expect all family members, both men and women, to participate in the care
for aging relatives.
- Caregivers have the right to
provide care at home as long as physically, financially and emotionally
feasible; however, when it is no longer feasible caregivers have the
obligation to explore other alternatives, such as a residential care
facility.
- Caregivers have the right to
temporarily alter their premises as necessary to provide safe and livable
housing for carereceivers.
- Caregivers have to right to
accessible and culturally appropriate services to aid in caring for aging
carereceivers.
- Caregivers have the right to
expect professionals, within their area of specialization, to recognize
the importance of palliative (ease without curing) care and to be
knowledgeable about concerns and options related to older people and
caregivers.
- Caregivers have the right to
a sensitive, supportive response by employers in dealing with the
unexpected or severe care needs.
End of part 3
Back to Table of
Contents
Caregiver's
Handbook--Part 4 of 9
Personal Care
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:
- Keep skin clean and dry,
especially when people are having problems with bowel and bladder control.
When washing, use a mild soap, rinse well, and dry thoroughly.
- Keep bed linens clean, dry
and free of wrinkles. Disposable bed pads can be purchased at a drug store
and can keep sheets dry so that the caregiver does not have to change
sheets so often.
- Massage skin gently using a
light, circular motion. Change the position of older people at least every
two hours, particularly for those confined to a bed or wheelchair.
Encourage them to shift their weight between position changes to redistribute
pressure onto other areas.
- Encourage good nutrition and
adequate fluid intake. As a supplement to your family member's diet, give
a multi-vitamin every day to ensure proper nutrition. Check with the
physician as to the appropriate supplement.
- Use mattress and chairs that
are soft and form-fitting rather than rigid and hard. (Example: egg crate
mattress and sheep skin). This spreads the weight over a larger skin area,
decreasing the pressure under the bones.
- Encourage movement or mild
exercise; this helps stimulate circulation which is good for the skin.
Combing hair and helping with bathing and dressing are good ways for frail
people to get exercise and be more independent.
- Watch for possible sources
of pressure on anything that would interfere with good circulation, such
as tight shoes, elastic cuffed socks or tight undergarments.
- Bony prominences are prone
to skin breakdown. They are heels, feet, behind the knees, hips, buttocks,
sacrum, elbows and shoulder blades. A special air mattress may be ordered
by the doctor to prevent skin breakdown.
- Watch for any redness or a
break in the skin and report it immediately to the doctor or nurse, and
keep the carereceiver off the affected side.
- Safety features in the
bathroom, such as grab bars and raised toilet seats, make using the
bathroom safer.
- A commode or urinal may be
necessary when flexibility and distance to the bathroom are a problem.
They may be especially helpful at night.
- Lack of control over bowel
or bladder functions can be embarrassing and older people may try to hide
it from caregivers and professionals. Be sensitive to the older person's
feelings, and mention this to the doctor. Loss of bowel and bladder
control is not a part of normal aging and often can be controlled.
- For the carereceiver with
bowel and/or bladder problems it may help to take them to the bathroom
every 2 hours. Specialized programs exist to retrain a bladder and bowel
function. Check with your doctor or nurse for a program in your area.
Constipation or Irregularity
Many elderly become constipated due to medications and inactivity. If your
carereceiver is experiencing this problem the doctor or nurse can suggest a
stool softener. Other important factors are:
- Eat plenty of fresh fruit,
vegetables and foods high in fibers. -- Drink at least 8 glasses of water
a day.
- Avoid constipating foods
like cheese, rice, bananas, etc. -- Exercise as much as is tolerated.
- Be sure your doctor is aware
of all the medications being taken.
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:
- Check gums for areas of
redness. Dentures may not fit correctly and cause the family member pain
when chewing.
- Provide adaptive equipment
such as plate guards or special silverware with built-up handles.
These can be purchased from medical supply houses (listed under Hospital
Equipment and Supplies in the Yellow Pages). An occupational therapy evaluation
can recommend the best for each individual. -- Prepare finger foods which may
be easier to eat than those requiring utensils.
- Encourage older people to
use a straw, cups with 2 handles, or a glass with ribbed surface for
independent drinking.
- If the older adult has
limited vision, consistent place setting of food and utensils helps to know
where to find silverware, beverage, etc. Using the *clock* method to
locate food may be helpful; for example, *Your meat is at 9 o'clock, your
potato is at 12 o'clock and your carrots are at 3 o'clock.*
- Reminder: Treat older people
who are being fed as adults, not children. Disciplining poor eating habits
should be avoided. When they lack interest in food, try to learn the
reason. For example, ask if they are thirsty or not feeling well, or if
the food in not appetizing on this occasion.
Moving people who cannot move safely by themselves requires skill,
knowledge, and some strength. For every type of disability, there is a specific
technique to use. Ask a doctor, therapist or attend caregiver training for
specific techniques. In all cases, remember:
- When lifting, do not add
your own weight to whatever you are lifting-get close and keep balance
centered.
- Do not use weak back muscles
to lift - use your leg muscles because they are much stronger.
- Do not twist when you are
lifting - instead, change the position of your feet so that you face the
older person, keeping your spine straight. -- Balance is vital - spread
your feet to serve as a base for support. -- Your doctor can refer you to
a physical therapist who can teach you to transfer safely.
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.
- Allow the carereceiver to do
as much as possible; provide only as much help as needed.
When older people do all or part of their own personal care, it is a form of
exercise that will help maintain strength as well as promote independence. No
matter how small the activity (holding the soap, combing the front of the hair,
etc.) it is important that the person be able to participate.
- Adapt the home to allow the
carereceiver to do more things. Install equipment such as grab rails in
the bathroom, wheelchair-accessible sinks and mirrors, bath bench for the
shower or tub, and lights with switches that can be easily reached.
- Seek the aid of therapists
or nurses to teach you how to perform personal care tasks safely and
effectively.
- Learn about the
carereceiver's disability and what you and others can do to help him/her
function as independently as possible. If the older person cannot perform
a certain activity, see if there is a part that can be done. For example,
one might be able to independently dress the upper body if sitting, but
require help dressing the lower body.
- Whenever possible, include
the carereceiver in making plans for his/her care. Take suggestions and
feelings into consideration and encourage involvement in his/her own care.
Sometimes, slowing the pace of an activity allows older people to do more
for themselves.
Be aware of changes in the carereceiver's health and abilities. Your plans
for care will change as the carereceiver changes.
End of part 4
Back to Table of
Contents
Caregiver's
Handbook--Part 5 of 9
Nutrition
Good nutrition is important in order that people live life to its fullest.
Good nutrition is a balance of proteins, carbohydrates, fats, vitamins,
minerals and water in the foods we eat. A healthy diet helps to (1) provide
energy; (2) build, repair, and maintain body tissues and (s) regulate body
processes.
When meals are eaten in the company of others, people not only benefit from
the nutritious foods, but also enjoy the chance to socialize. This encourages
good eating habits and promotes good mental health.
The table that follows summarizes essential nutrients (which you may also
finds listed on food labels) and their functions:
- Protein: For preservation
and repair of tissue; formation of antibodies to fight infection.
- Carbohydrates: For
energy; fiber to help prevent constipation. -- Fat: For energy; healthy
body and skin.
- Vitamin A: For
healthy eyes, skin, hair; resistance to infection. -- Vitamin C: For
healthy gums, skin; healing of wounds, bones; resisting infection.
- Thiamin (B1): For
digestion; healthy nervous system. -- Riboflavin (2): For healthy eyes,
skin, mouth; use of oxygen from air. -- Niacin: For healthy digestive
tract and nervous system.
- Calcium: For
preservation and repair of bones, teeth; muscle contractions; blood
clotting.
- Iron: For building
red blood cells to carry oxygen to all parts of the body.
To simplify daily meal planning, foods are grouped according to the
nutrients they supply. Plan your diet to include the recommended number of
servings from each group.
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,
- Avoid alcohol,
- Marinate meat, poultry and
fish in sweet fruit juices, Italian dressing, or sweet or sour sauces,
- Drink plenty of fluids or
suck on candies to get rid of bad tastes, -- Serve foods at room
temperature or cold (Try milk-shakes or cheese), -- Use stronger
seasonings such as basil, oregano, rosemary, tarragon, lemon juice or mint
when cooking,
- Try new foods.
CRAMPS, HEARTBURN, BLOATING
- Eat slowly,
- Eat small meals frequently,
- Avoid gas-forming foods,
e.g., cabbage, onions, nuts, beer, cola drinks, -- Avoid lounging
immediately after eating; stand or sit upright for one hour after eating,
- Avoid fried, greasy and heavily
spiced foods,
- Try bland, low-fat, easily
digested foods,
- Chilled antiacid may help,
HOWEVER, check with your doctor regarding the brand of antiacid to use.
CONSTIPATION
- Take high-fiber foods and
plenty of liquids,
- Exercise,
- Add bran when cooking or
baking (1 - 2 tablespoons of bran for each cup of flour),
- Drink hot beverages which
act as stimulants.
DIARRHEA
- Eat small meals frequently,
- Drink clear liquids,
- Avoid high fiber and greasy
foods,
- Replace fluid loss with
liquids between meals.
NAUSEA & VOMITING
- Avoid unpleasant odors,
- Eat small meals frequently,
- Chew slowly and thoroughly,
- Sip cool, clear liquids
between meals,
- Rest after meals with head
elevated,
- Avoid hot, spicy,
strong-smelling foods or fried, greasy foods, -- Try foods which are cold
or at room temperature, and low-fat food, -- Eat dry or salty food,
- Try fresh air and loose
clothing.
DRY OR SORE MOUTH
- Drink plenty of liquids,
- Suck on ice chips,
- Suck on popsicles made of
milk or non-acid juices,
- Dunk or soak foods in
liquids,
- Use extra gravies, sauces,
salad dressing,
- Rinse mouth frequently,
- Suck hard candies or chew
gum,
- Eat sweet or tart foods if
no sores in mouth,
- Artificial saliva can be
used.
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
Back to Table of
Contents
Caregiver's
Handbook--Part 6 of 9
Medical Aspects of Caregiving
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:
- Time of Day Medication is
given, AM + PM
- List all Medications for
Each Time
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:
- What are the office hours?
- How are the bills handled?
- Who will answer my
questions if the doctor is unavailable? -- How does the office handle
emergencies?
- How is co-payment handled?
- What hospitals does he/she
go to?
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--
DO NOT PROCRASTINATE!
End of part 6
Back to Table of
Contents
Caregiver's
Handbook--Part 7 of 9
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.
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:
- inability to concentrate or
make decisions,
- lack of feelings of
enjoyment, or enthusiasm even for doing those things that were favorites,
- little interest in eating
(causing weight loss) or changes in eating habits (overeating causing
weight gain),
- lack of interest in being
with other people, or loss of sex drive (libido),
- feeling unwanted and
worthless, sometimes leading to the thought that life is not worth living,
- sadness or crying spells for
no apparent reason,
- problems with sleeping
(sleeplessness during the night or excessive sleep during most of the
day),
- feeling tired most of the
time, regardless of adequate rest.
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:
- Depression - feelings of
sadness, hopelessness, a sense of loss and statements as "Life isn't
worth living" are common before a suicide. -- Chronic or terminal
illness.
- Withdrawal and isolation -
suicidal people may pull away from family, friends and others close to
them.
- Behavior changes - sudden
changes such as irritability, aggressiveness or changes in eating and
sleeping habits can signal problems.-Making final arrangements - a
suicidal person may give away valued possessions, making out a will, make
a plan for suicide, or write a suicidal note in preparation. They may
purchase weapons or stockpile medications.
Suicide can be prevented. If the person you care for shows any of the
warning signs, you can:
- Ask - don't be afraid to
ask directly if the person is thinking about suicide. It is not a taboo
subject. You will not be putting ideas into the person's head. It can be a
relief to the suicidal person to talk openly about their feelings.
- Listen - let the person
express his/her feelings and concerns. Don't worry about saying the right
things - just listen.
- Show you care - tell the
person you care and want to help. Take active steps to make sure the
person is safe; remove weapons, pills, etc., and stay with him/her.
- Get help - make sure the
suicidal person gets in contact with a professional counselor or other
helpful person who will know what to do. Or have the suicidal person call
(suicide prevention/crisis intervention Hotline in your community.
Telephone numbers for such local resources should be at the front of your
telephone directory.) A crisis counselor can help figure out the best way
to handle the situation and give referrals to other resources.
Death and Dying Interventions Elderly terminally ill encounter anxiety and
fear regarding death:
- fear of the process of
dying; will there be pain?
- fear of losing control; will
I be at another's mercy? -- fear of letting go; I can not leave family and
friends to an uncertain future.
- fear of seeing how others
will avoid me.
- fear of losing my caregiver;
will he/she be turned off emotionally to me?
- fear of the unknown after
death.
- fear that my "life's
script" has been meaningless, unfulfilled, a waste.
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!
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:
- encourage socializing with
friends and relatives through visits, phone calls or letters.
- arrange fun times such as
parties or outings.
- help start new hobbies or
revive old ones.
- listen, talk, and share
feelings.
- assure privacy.
- treat with respect, not as
little children unable to think for themselves.
- encourage movement and
exercise.
- help find ways to be as
useful as possible.
- strive to keep the lines of
communication open.
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 carereceiver 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:
- Make changes in routines
gradually,
- Be clear about reminders
for appointments or meetings, -- Write simple directions in large, clear
print,
- Use large labels (words or
pictures) on drawers and shelves to identify contents,
- have clocks and calendars
clearly visible and mark off passing days, -- Make certain that medicine
is being taken regularly,
- Confused or forgetful
patients must have assistance with their medications,
- Encourage consumption of
nutritious foods,
- Encourage movement and/or
exercise as this will increase circulation of the blood and help improve
bodily functions, including the ability to think.
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:
1. Avoid confrontation. If the behavior deals with disrobing, offer brightly
clothes which make the person feel good.
2. Don't argue. If the person becomes too agitated, change the
subject/object to something completely different.
3. Reduce stimulation. Lower lighting, reduce noise (radio, TV) to soothing
music, minimize items in the area to a few possessions known to the person, and
avoid clutter.
4. Promote familiar objects, pictures.
5. Walk slowly with the person to reduce anxiety and stress the muscle
tension.
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:
- sew or knit,
- be a friendly telephone
caller,
- be a foster grandparent,
- be a pen pal,
- be a reader to children at
an elementary school,
- save stamps for collectors,
- write favorite recipes on
cards and share them with others, -- read books, magazines, newspapers,
- do puzzles (jigsaw,
crossword),
- try artwork (calligraphy,
painting, drawing),
- write or record memoirs,
poetry, thoughts,
- keep a joke book,
- care for pets or plants,
- listen to soothing music,
- take correspondence courses,
- play musical instruments,
- start or re-arrange a family
photo album,
- volunteer, at libraries,
hospitals, museums, schools, Retired Senior Volunteer Program (RSVP),
- bake for self and others,
- plan a potluck or brown-bag
lunch at home,
- tutor or visit with children
and youth,
- type for self and others,
- participate in radio call-in
shows,
- learn to use a computer.
In addition, older people who are physically able should be encouraged to
participate in swimming, bowling, gardening, dancing, miniature golf, nature
walks, mall-walking, jogging, shuffleboard and other activities outside the
home.
Drawing, writing, reading, crafts, taking classes, and other hobbies
encourage creativity. Indoor games including chess, checkers, monopoly, cards,
billiards and Parcheesi provide interesting relief from boredom as well.
End of part 7
Back to Table of
Contents
Caregiver's
Handbook--Part 8 of 9
Legal and Financial Affairs
Liability of Caregiving
Choosing a Residential Care Facility
Conclusion
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.
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.
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
carereceiver, 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 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 carereceiver are urged to seek the advice of an
attorney.
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 carereceiver is already incapacitated to the extent that
he/she is unable to manage personal financial affairs.
This 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.
(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.
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.
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 or one of the resources available in Appendix A.
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 carereceiver 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:
- snapping at the
carereceiver constantly even over little things, -- being constantly
irritated,
- seldom laughing anymore,
- feeling constantly tired or
pressured,
- losing sleep, failing to
fall asleep for hours, sleeping restlessly all night long,
- yelling or screaming, or
having crying fits, or rages frequently, -- withholding affection,
feelings of goodwill from the care-recipient, -- withholding food, baths,
dressing changes, etc.,
- constantly blaming the
carereceiver for your being in this situation (his/her isolated
caregiver),
- refusing to go out anymore,
even for a walk because *he/she needs me,* -- withholding expenditures for
goods or services he/she needs because he/she is going to die soon and it
is wasted money,
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!
In making the decision to seek an alternate living arrangement for your
carereceiver 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 carereceiver 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 carereceiver 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:
- Ask to see the facility
license,
- Look closely at the
building and grounds,
- Talk to some facility
residents,
- Talk to the facility
administrator who is in charge of daily operations, -- Talk to some
facility staff members,
- Ask to see a copy of the
Admission Agreement.
Contact your County or State Department of Social Services for a copy of
their *Consumer's Guide to Community Care Facilities* or equivalent. (In
California, a booklet entitled *A Consumer's Guide to Community Care
Facilities* details a 6-page checklist for facility visits. A copy may be
obtained from: The California Health & Welfare Agency, Department of Social
Services, 744 P Street, Sacramento, CA 95814 (tel: (916) 445-4500).
This handbook is available from San Diego County through the efforts of many
collaborators. I hope it will serve as a reference tool for the new and veteran
caregiver. It can never be said often enough that that YOU, the caregiver, are
incredibly important!
The welfare of another person, the carereceiver, depends on you. If you are
not in good health, the carereceiver also may suffer. If you have taken on the
role of a caregiver you have also accepted a special responsibility to take
care of yourself. So, good luck and good care.
YOU ARE IMPORTANT!
End of part 8
Back to Table of
Contents
Caregiver's
Handbook--Part 9 of 9
Examples of Caregiver Resources
& Additional Reading
(This Appendix lists examples of resources for the caregiver by county
locality, resource title and telephone number. The specific titles of the
activities and their telephone numbers would be of little use outside the
county. For the purpose of this copy the resources were identified by functions
as a guide for preparing a list suitable to your needs. Specific titles,
locations, telephone numbers, times open for calls, etc., may be available from
your County Mental Health Services, United Way directory, or telephone directory.
An excellent resource would be the indices in the public and academic libraries
in your city and county. The following examples include several not listed in
the handbook) :
· EMERGENCY (Large print. Post near telephone)
· Your physician(s)
· Ambulance Services
· Hospital to which carereceiver would be taken
· Oxygen Support
· Suicide Prevention/Crisis Intervention
· Poison Control Center
· Pharmacist
· Police
· Fire Department
· Neighbors you can count on in emergencies
· Domestic Violence Hotline
· Elder Abuse Hotline
· E-mail: Samaritans (UK) Suicide Prevention
· E-mail: Survivors of Suicide (Australia)
GENERAL INFORMATION AND REFERRALS
· Area Agency on Aging - Senior Hotline
· American Association of Retired Persons (AARP)
· Alzheimer's Association Help Line
· State/County Self-Help Center
· Medical Information Service
· Older Women's League (OWL)
· Senior Citizen's Centers (near your home)
· INTERNET/World Wide Net (WWW) (e.g. GERINET, HOSPIC-L, LTC-LIST, SeniorNet
and AARP forums (America OnLine), Dr. Stall's WWW Home Page, various newsgroups
dedicated to general health and well-being)
AGING SERVICES
LEGAL SERVICES
ADULT DAY HEALTH CARE CENTERS
ALZHEIMER'S CENTERS - SOCIAL DAY CARE
SENIOR SOCIAL CENTERS
CAREGIVER SUPPORT/TRAINING GROUPS
(check with your County Mental Health Services)
NUTRITION INFORMATION CENTERS
(Meals on Wheels)
HEALTH INFORMATION
(Hearing aids maintenance, MedicAlert, prostheses maintenance and repair,
etc.)
IN-HOME CARE SUPPORT SERVICE
(Homemakers, Hospice, Visiting Nurses, etc.)
CLERGY
A. Calder and J. Watt, I LOVE YOU BUT YOU DRIVE ME CRAZY, a
guide for caring relatives, Forbez, Vancouver, Canada, 1981
D. Cohen and C. Eisodorfer, THE LOSS OF SELF, a family
resource for the care of Alzheimer's Disease and related disorders, NAL
Penguin, Inc. New York, 1987
Norman Cousins, ANATOMY OF AN ILLNESS, Bantam, New York, 1981
H. Edwards, WHAT HAPPENED TO MY MOTHER? Harper and Row, New
York, 1981
D.R. Eyde and J. A. Rich, PSYCHOLOGICAL DISTRESS IN AGING, a
family management model, Aspen, Rockville, MD, 1983
J. Halpern, HELPING YOUR AGING PARENTS, a practical guide for
adult children, Ballentine, New York, 1987
Julie Tallard Johnson, HIDDEN VICTIMS, an eight-stage healing
process for families and friends of the mentally ill, Doubleday, New York, 1988
N.L. Mace and P.V. Rabin, THE 36-HOUR DAY: a family guide to
caring for person with Alzheimer's Disease, related dementing illnesses, and
memory loss in later life, Johns Hopkins University Press, 1981
L. Mortain et al., WHO CARES? helpful hints for those who care
for a dependent older person, U.S.C., Los Angeles, CA 1985
B. Shulman and R. Berman, HOW TO SURVIVE YOUR AGING PARENTS,
so you and they can enjoy life, Surrey, Chicago, 1988
B. Silverstone and A. Burack-Weiss, SOCIAL WORK PRACTICE WITH THE
FRAIL ELDERLY AND THEIR FAMILIES, C.C. Thomas, Springfield, IL, 1983
B. Sloan, THE BEST FRIEND YOU'LL EVER HAVE, Crown, New York,
1980
End of part 9
Back to Table of
Contents
with Grandpa Julius