CAREGIVER'S HANDBOOK
Assisting Both the Caregiver and the Elderly Care-receiver
Produced by
The Caregiver Education and Support Services
Seniors Counseling and Training
Case Management Services of
San Diego County Mental Health Services
1250 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 Guide 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 on going changes and problems in collecting data, San Diego
County cannot assume responsibility for the accuracy ofthe 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. Copied to disk and
uploaded on Feb 17, 1992 to SeniorNet(America Online) *Showcase and
Exchange* by Mike Moldeven, a general member of SeniorNet. (NOTE by
Mike):
The titles of San Diego County governmental and community private sector
entities, and their locations and telephone numbers were, in some cases,
deleted as they would not be ordinarily available as resources to persons
outside of San Diego County. However, most entities were identified as
functions or in some other manner to facilitate identification of
counterpart resources where the handbook is being used. Because of the
different word processors, programs, fonts, etc., that will be likely
used
in downloading and portraying this document, and to aid in locating the
Sections and Headings listed in this table of Contents, the page numbers
are augmented by each Section being identified with an alpha and each
subordinate major Heading being numbered sequentially same as in the
Contents.. END NOTE
Contents A.
Acknowledgements B.
Foreword C.
Introduction
1. You, the caregiver, are very important
2. Check list D. Common problems in caregiving
3. List of Needs E. Types of help available
4. When community agency help is needed
5. Services available to impaired elderly
F. Caring for the caregiver
6. Caregiver's self-rating scale
7. What can I do to help myself
8. Seek Information
9. Join a caregiver support group
10. Set realistic goals
11. Practice good communications skills
12. Communicate with your family and friends
13. Use community resources
14. Use respite care services
15. Maintain your health
16. Relaxation exercise
17. Laughter is the best medicine
18. Avoid destructive behaviors
19. Seek help
20. Build your self-defense
21. Caregiver's bill of rights G. Personal care
22. Bathing, shampooing and shaving, skin care
23. Toileting, constipation or irregularity
24. Assisting with eating, transferring, rest and sleep, tips for
encouraging self-care H. Nutrition
25. Nutrients listed on food labels
26. Adapting meals for people with dietary restrictions
27. Four food groups
28. Common problems interfering with good nutrition
29. General tips for helping the older person to eat well I. Medical
aspects of caregiving
30. Encouraging routine physical examination
31. Keeping records and managing medications
32. Choosing a doctor J. Emotional and intellectual well-being
33. Depression: signs and causes
34. Suicide prevention
35. Promoting emotional well-being
36. The importance of lifetime learning
37. Memory problems
38. Sensory problems
39. Confusion
40. Behavioral problems
41. Mental stimulation K. Legal/financial affairs
42. Compiling an inventory
43. A will and managing financial affairs
44. Durable power-of-attorney for health care decisions
45. Conservatorship of estate and/or person
46. Selecting and attorney L. Liability of caregiving
47. When is it time to stop caregiving M. Choosing a residential care
facility N. Conclusion You, the caregiver, are incredibly important
!O. Appendices
Appendix A: Selected community resources
Appendix B: Selected readings and references
*****************
Caregiver's Handbook
A. Acknowledgements
by Robert Torres-Standovik, LCSWI
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 asit has. Acknowledgement is also given to AARP's
pamphlets on Caregiving, and to several books, which have been noted in
Appendix B, especially *The Loss of Self,* by Cohen and Eisdorfer, for
their invaluable ideas. Thank you to my family, Maida, Shawn and Sylvia
for their loving patience for allowing me the time/energy to complete
this
handbook; thank you to my support staff of students Karen Zaustinsky and
Laurie McFarland for their assistance with the initial stages of this
handbook, and the typists Heidi Peters,Fatima Ruiz, and Ewald Brieske for
their many revisions andre-revisions in order to arrive at this handbook;
thank you to the San Diego County Senior Teams, the Southern Regional
Resource Center, Frank Dwinnell, M.D., Stanley Rest, Ph.D., Donna
Pasanen,
the Telephone Friends, several caregivers and care-receivers for their
assistance in editing, advising and encouraging me with this handbook.
Special thanks to Mimi Campbell-Goodman for the bear graphics (Note from
Mike: I deeply regret not being able to include the graphics. They are
excellent.) A very special thanks to Ray Schwartz, my supervisor,
editor,
and above all encourager who was always close at hand with his red pen
and
some kind words. Caregiver Education Support Services (CESS) wishes you
the very best of care. We care! CESS, a program under Seniors
Counseling
and Training Program, Case Management Services, would like your comments
regarding our *Caregivers Handbook.* If we can offer further services or
if you have any comments orimprovements regarding this manual, write us
at:
Seniors Counseling and Training Program, Case Management, DHS, 1250
Moreno
Blvd, San Diego, CA 92110.
B. Foreword
Older citizens are more likely to be disabled or dependent due to
medical
problems. These problems change a person's relationships with family and
friends. A husband, daughter, or friend may find that they are now also
a
*caregiver,* the person primarily responsible for seeing that a patient's
physical, psychological, and social needs are met. Another person now
depends on them for basic physical needs. Regardless of whether the
disability is due to progression of a chronic illness such as heart or
lung disease, stroke, dementia, arthritis, or the combined effects of
multiple medical and social factors, the caregiver role is a profound
change for both people. These adjustments are often stressful, as well-
established patterns must be abandoned, and new adaptions developed.
This
provides opportunities for personal growth, but also, in variable, causes
emotional turmoil and distress. Being a caregiver is rewarding, but also
can exhaust a person physically and emotionally, leading to illness and
inability to further provide care. This book is directed primarily at the
caregiver. This is not a*how to* book focused on problems of the ill
patient. Rather, it offers practical approaches to common caregiver
problems. Staying healthy, avoiding depression, remaining active, making
friends, enjoying pleasurable activities are an essential part of any
human life, including those of caregivers. Serving as the primary
caregiver
for an ill loved one should not make life meaningless. Caregivers for
frail and ill older people should read this book. Family members who are
not primary caregivers should also read this book to become more aware of
the problems facing caregivers. Caregivers, other family members, and
care-receivers will find the resources, tables, and questions useful in
improving the quality of life for all concerned. Mr. Torres-Stanovik and
staff of the San Diego County Mental Health Services have performed an
important service for the frail elderly and their caregivers.
J. Edward Jackson, M.D.Director, Seniors Only Care Clinic and Alzheimer's
Disease Diagnostic and Treatment Center University of California, San
Diego
****
C. Introduction
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 care-receiver? Before you get to that place,
please read this handbook. This handbook explores a number of different
topics which can make the role of caregiver easier, and at the same time,
help the person receiving the care. Throughout this handbook,
*caregiving*
refers to the person giving care, and*care-receiver* the elderly person
receiving the care. Below are two checklists, one focusing on the
care-receiver and the other on the caregiver. They are included as
general guidelines to help insure an optimal level of health, safety and
comfort for both your care-receiver and yourself, the caregiver.
2. Table 1
Check list for care-receiver
__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 utilizedmonthly/weekly
__ Level of care is reviewed monthly to ensure care-receiver is able to
remain in the home
Check list for the caregiver
__ 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.
******************
D. Common Problems in Caregiving
3. List of Needs
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
are-receiver
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? n 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 tothe 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 care-receiver elects to
remain in his/her ownhome, 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 carefacilities, or nursing homes).
If the care-receiver is to remain in the home, some major adjustments in
the living arrangements and patterns of daily living will be necessary.
Social Stress:
Providing personal care up to 24 hours a daycan cause social stress by
isolating oneself from friends,family and a social life. The caregiver
may find him/herself becoming too tired or unable to have *an evening
out*
even once a week, or once a month. What can result is a build-up of
anger
and resentment toward the very person receiving the care, as the
care-receiver is the cause of the lost socialization.
Emotional Stress:
All of these factors often result intremendous emotional stress.
Compounding these sources of stress are the difficulties in managing
one's
time, juggling multiple responsibilities, and feeling the pressure of the
increased dependency. For family members providing care, the various
forms
of stress can result in different feelings. Anger, resentment and
bitterness about the constant responsibilities, deprivation and isolation
can result. This is also a time when many of the unresolved conflicts
from
parent-child relationships resurface and can intensify, causing anxiety
and frustration. There might even be the unspoken desire, at times, to
be
relieved of the burden through institutionalization or even death of the
care-receiver. This desire is frequently and swiftly followed by
feelings
of guilt. All of these can be felt, then denied because they seem
unacceptable. The person giving care needs to be assured that, in fact,
these feelings are common even though they may not be expressed. There
are resources that can help caregivers. The remainder of this book will
address those resources, such as joining a caregiver support group, using
community resources and above all, caring for yourself the caregiver.
E. Types of Help Available:
Through Family or Friends
First make a detailed inventory of any assets individual family members
and
friends can contribute, including the assets of the impaired elderly
person
needing the care. Assets include available time, skills, space,
equipment,
the strengths of the person in need care, and most important money. Sit
down with all the family members (or at least as many as are
agreeable)and
work out a plan for giving help. This involves defining and agreeing
upon
what tasks will be performed, by whom, on whichdays, 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 includemaking a spare room available to a
college
student for his/her help with care of the care-receiver, in return for
free
room andboard.
4. When Community Agency Help in Needed:
When family or other volunteer help is not available or cannot meet your
needs, caregivers or care-receivers may wish to seek help froma gencies.
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 care-receiver. Each agency has its own fee structure; you
may
want to ask about their arrangements before ordering theservice.
5. Types of Services Available to Impaired ElderlyNote:
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/Handy persons Services:
Includes heavy-duty housecleaning, minor home repairs, yard work,
installing safety.
John Cottingham NEW ADDRESS: [log in to unmask]
