CAREGIVING
A RESOURCE GUIDE FOR CONSUMERS
This Guide is intended to suggest resources to caregivers
who are providing assistance to family members or friends.
The resources described in this Guide discuss medical,
practical, and emotional aspects of caregiving. The
Guide addresses caregiving to children as well as adults.
The Resource Guide incorporates books, websites, and
organizations.
The Guide includes many Internet websites as well as
print resources. Although advertisements may appear
on some websites in the Guide, the University of Connecticut
Health Center Library makes no recommendations for these
products or services nor endorses them.
Some especially informative books which are out of
print may be included. They may be available at your
public library or your library may be able to borrow
them from other libraries through the Interlibrary Loan
System. Connecticut residents may also borrow books
directly from other public libraries within the state
with their own town library card.
Each book citation includes the book's unique International
Standard Book Number (ISBN), which identifies the book
and is helpful when ordering a specific title.
Since this resource guide is a publication of Healthnet:
Connecticut Consumer Health Information Network,
a program of the Lyman Maynard Stowe Library, University
of Connecticut Health Center, its focus is on Connecticut
resources when they are available. National resources
are represented as well.
AN OVERVIEW OF CAREGIVING
BOOKS
American Medical Association Guide to Home Caregiving.
Angela Perry, editor. John Wiley & Sons, Inc., 2001.
242 p. (ISBN 0-471-41409-3) paperback
This practical guide discusses planning for caregiving
of an elderly person, basic caregiving skills, preparation
of the home, choices for provider and long-term care,
as well as caring for yourself as you provide help.
Both the practical and emotional aspects of home health
care are covered.
Caregiver's Handbook. A guide to caring for the
ill, elderly, disabled... and yourself. Anne Fabiny
and Suzanne Modigliani, editors. Harvard Health Publications,
2004. 45 p. paperback. (ISBN 1-933225-53-X) Available
from Harvard Health Publications, Countway Library of Medicine, 10 Shattuck Street,
Suite 612, Boston, MA 02115.
A brief but comprehensive guide to planning a caregiving
situation so that it offers the greatest benefit for
family member and caregiver. The handbook includes practical
information on meeting daily living needs, financial
and legal planning, long distance caregiving, and enlisting
family and professional support. There is helpful information
about talking with a loved one about current and future
caregiving needs. The book includes specific suggestions
for compassionate dialogues with a family member. Included
is a "questionnaire to determine needs" related to household
issues, day-to-day issues, and medical needs.
Caring for Your Parents. The Complete Family Guide.
Hugh Delehanty and Elinor Ginzler. Sterling Publishing
Co., 2008. 256 p. (ISBN 1-4027-5857-X paperback)
A practical, reassuring, and compassionate handbook
for adult children who have been thrust into the role-reversing
position of supporting and guiding their elderly parents.
Published under the auspices of the national AARP organization
and written jointly by the editor-in-chief of AARP Publications
and the director of Livable Communities at AARP, the
book reflects a realistic understanding of the family
dynamics and economic challenges of aging. This book
is especially helpful for detailed information such
as an explanation of Medicare, a worksheet for family
meetings, a list of questions to ask of an assisted
living facility and a nursing home, and a financial
inventory. There are many topical lists of organization
and website resources at the conclusion of chapters.
The Comfort of Home for Stroke. A Guide for Caregivers.
Mariea M. Meyer, Paula Derr and Jon Caswell. CareTrust
Publications, 2007. 338 p. (ISBN 0-9664767-8-6 paperback)
Written by an experienced caregiver, a nurse, and
the editor of Stroke Connection Magazine, this detailed
guide is one of a series of books for caregivers on
the practical aspects of day-to-day care. Written in
easy-to-read basic style, it is enhanced by line drawings.
It discusses preparing a home for safe caregiving, communicating
effectively with health care providers, hiring in-home
help, paying for care, and providing daily assistance
to a family member. There is detailed, step-by-step
instruction on medical equipment and mobility aids,
home modifications, avoiding caregiver burnout, assistance
with bathing, bed making, preventing pressure sores,
helping a family member transfer from a wheelchair to
a car, and preparing a plan of care.
In addition to a general guide for caregivers in Spanish
and English, CareTrust Publications has published similar
books for caregivers of family members with multiple
sclerosis and Parkinson's disease.
Consumer Reports Complete Guide to Health Services
for Seniors. Trudy Lieberman and the editors of
Consumer Reports. Three Rivers Press, 2000. 568 p. (ISBN
0-8129-3147-5)
In its tradition of conveying practical, evaluative
information to the consumer, Consumer Reports magazine
has published this helpful guide, subtitled "What You
and Your Family Need to Know about Finding and Financing
Medicare, Assisted Living, Nursing Homes, Home Care,
Adult Day Care." Numerous helpful tables and worksheets
are included in the text. Among them are "A Comparison
of Home Care Costs," and "A Sample Contract for Private
Duty Nursing Assistance." The appendixes include state
and drug company pharmaceutical assistance programs,
rating of Medicare-supplement insurance policies and
Medicare HMO's, state-funded programs for the elderly,
and a state-by-state nursing home watch list. The ratings
systems were created by the authors.
Eldercare 911 Question and Answer Book. Susan
Beerman and Judith Rappaport-Musson. Prometheus Books,
2005. 304 p. (ISBN 1-59102-293-2)
Written in response to questions from readers of their
2002 book, Eldercare 911: The Caregiver's Complete
Handbook for Making Decisions, this question-and-answer
style book provides specific direction for dealing with
daily and long-term caregiving challenges. The authors'
compassionate, supportive, detailed responses, including
sample dialogues, deal with topics such as conflicts
with family members, financial assistance needs, guilt
about parental care, and caregiver burnout. They also
discuss positive aspects of caregiving such as feelings
of accomplishment and opportunities to learn assertiveness
in dealing with physicians and hospital personnel.
Merck Manual of Health and Aging. Mark H. Beers,
MD, editor-in-chief. Merck Research Laboratories, 2004.
961 p. (ISBN 0-911910-36-0 hardcover, ISBN 0-345-48275-1
paperback)
In addition to providing an informative overview of
healthy aging and disorders likely to affect the elderly,
this consumer-friendly guide discusses caregiving, its
challenges and rewards, long-term care and end-of-life
care. The book's entire text is available online at
the
Merck website. The book is enhanced by essays written
by seniors on the strengths and advantages of their
personal experiences as they have aged.
The 36-Hour Day. Nancy L. Mace and Peter V.
Rabins. Johns Hopkins University Press, 2006. 4th edition.
368 p. (ISBN 0-8018-8500-4)
A revision of a comprehensive, classic guide to caregiving,
this book discusses legal, practical, and emotional
issues. Its suggestions are realistic and intended to
be reassuring to caregivers. It includes detailed instructions
and suggestions on day-to-day caregiving and real life
anecdotes from families.
INTERNET WEBSITES
Caregivers
A variety of links to caregiving topics from the Medlineplus consumer health website of the National Library of Medicine.
Includes directories, coping information, clinical trials,
organizations, financial issues, as well as information
about caring for seniors and children. Provides access
to citations to medical journal research articles about
caregiving.
Caregiving
Resources from AARP
Links to a variety of online caregiving guides from
the website of the AARP, national advocacy organization
for older adults. Among the topics discussed are how
to determine when an elderly parent needs help, hiring
a home health care worker, long distance caregiving,
and establishing legal guardianship.
ALZHEIMER'S CAREGIVERS
BOOKS
Talking to Alzheimer's. Simple Ways to Connect When
You Visit with a Family Member or Friend. Claudia
J. Strauss. New Harbinger Publications, 2002. 168 p.
(ISBN 1-5722-42701)
A communication consultant and English professor, Claudia
Strauss has written a compassionate, practical guide
to successful communication with a person with Alzheimer's.
She explains how to direct the conversation without
embarrassing the person who may have forgotten details
about her life that people often automatically weave
into conversations.
INTERNET WEBSITES
Alzheimer's Association
National organization that provides resources and
information for Alzheimer's patients and their families.
The Connecticut chapter sponsors Caregiver Courses,
support groups, and financial assistance for respite
care.
Alzheimer's Caregivers
A variety of links to websites about caring for Alzheimer's
patients. The websites discuss nutrition, coping with
the caregiver role, financial needs, traveling with
an Alzheimer's patient, organizations, legal resources,
and related topics. From the Medlineplus consumer health website of the National Library of Medicine.
Caregiver Guide
An online publication of the National Institute on
Aging, this booklet focuses on caregiving for an Alzheimer's
patient. Among the brief topics are dealing with the
diagnosis, sleep problems, communication, eating and
dressing.
Caring for Someone with Alzheimer's
Published by the National Institute of Aging. Expandable
bold type makes this online publication for caregivers
of people with Alzheimer's easier to read. It discusses
home care, personal care, types of residential care,
safety issues, and caregiver support. Brief online videos
on topics such as creating a memory book with family
members, communicating effectively with Alzheimer's
patients, simplifying mealtimes, and deciding on residential
care greatly enhance the text.
Connecticut State Respite Care Program
This program provides information and financial assistance
for respite care for Alzheimer's disease patients who
meet financial eligibility requirements.
CARING FOR THE CAREGIVER
BOOK
The Self-Help Directory: a Guide to Connecticut
and National Groups. Connecticut Self-Help Network.
The Consultation Center. 389 Whitney Avenue, New Haven
CT 06511. phone: 203/624-6982.(ISBN 0-9647301-6-2)
Listings and descriptions of various types of self-help
groups throughout the state of Connecticut with information
on national groups as well. Specific caregiver support
groups in Connecticut are included.
Caring for Yourself While Caring for Your Aging
Parents. Claire Berman. Henry Holt and Company,
2005. 255 p. (ISBN 0-8050-7975-0 paperback)
A compassionate, realistic guide to the potential
difficulties and stresses of being responsible for the
care of an aging parent. Written by a writer who has
experienced the caregiving challenges she writes about.
The anecdotes, about problems caregivers have faced,
effectively illustrate problems and solutions.
INTERNET WEBSITES
Alzheimer's: Balancing Needs of Caregiver and Loved One
An online article from the MayoClinic.com website
that emphasizes the importance of accepting help and
caring for your own needs as you care for a person with
Alzheimer's disease. The article points out than a stressed
caregiver may be a "hidden patient" in need of assistance.
Balancing Work and Caregiving
A brief, online article from the AARP, national advocacy
organization for seniors, with practical suggestions
on managing to do your job effectively while bearing
responsibility for the care of an elderly family member.
Caregivers and Depression: Avoiding the Inevitable
A list of symptoms ("Do your colds linger?.."Are you
having difficulty falling asleep?" etc.) indicating
that you--the caregiver--are in need of help. Some possible
solutions to make your caregiving role run more smoothly.
LONG DISTANCE CAREGIVING
INTERNET WEBSITES
AARP/Long Distance Caregiving
Guidance from the AARP, national advocacy organization
for seniors, about caring for elderly parents from a
distant location.
Alzheimer's Association/Long Distance Caregiving
"Are the bills paid? Do friends and relatives visit
regularly?" and other questions to ask to determine
when help is needed if you are a long distance caregiver.
Recommendations in a brief online publication from the
Alzheimer's Association.
Handbook for Long-Distance Caregivers
An online handbook from the national Family Caregiver
Alliance with preventive steps, checklists, and other
practical suggestions for family members caring for
elderly relatives and friends from a distance. Recommendations
for agencies to contact, suggestions for creating a
support system of friends and relatives, advice about
how to analyze your caregiving strengths and limits.
Long Distance Caregiving
A brief article from the University of California
at Santa Barbara that provides an overview on caring
effectively for an elderly family member when you are
located a distance from their home.
So Far Away: Twenty Questions for Long-Distance Caregivers
"How will I know if help is needed? What can I really
do from far away? How on earth can my parents afford
everything they need?" Realistic answers to these questions
and others are presented in an online National Institute
on Aging publication.
FINANCIAL ASSISTANCE
BOOK
Taking Care of Mom and Dad. The Mechanics of Supporting
Your Parents in Their Time of Need. Mike Rust. Silver
Lake Publishing, 2000. 340 p. (ISBN 1-56343-740-6).
paperback edition also available.
A practical, straightforward explanation of the technicalities
related to the finances of long term care, health insurance,
government assistance programs, powers of attorney,
and related issues of the elderly. Written by an experienced
actuary whose work focuses on retirement issues.
INTERNET WEBSITES
Benefits Checkup
A National Council on the Aging website that provides
information about the resources of almost one thousand
state and national benefit programs, including information
about the Medicare Presciption Drug Coverage program.
By completing an online form with information on one's
income, age, assets, and zip code, but NOT identifying
information such as name, address, or social security
number, the Internet user is able to retrieve a list
of relevant programs.
Connecticut
Home Care Program for Elders
Financial assistance to eligible Connecticut residents
to assist in paying for home care so that placement
in a nursing home will not be needed. Administered by
the Connecticut Department of Social Services, Alternate
Care Unit. Phone 1-800-445-5394. Online text is in both
Spanish and English.
Financial
Steps for Caregivers. What You Need to Know about Money
and Retirement.
Published by the Women's Institute for a Secure Retirement,
this online guide focuses on the financial effect of
caregiving on working women and provides practical suggestions
for lessening that impact. Provides budgeting recommendations,
budget worksheets, ideas about how to leave a job or
reduce hours without jeoparizing employment benefits,
and suggestions about planning for your own retirement.
LEGAL RESOURCES
INTERNET WEBSITES
Connecticut Elder
Law Center
Topics include Connecticut-specific information on
the current situation in the state regarding HMO withdrawals,
Medicaid and Medicare coverage for healthcare, prescription
drug assistance, respite care, patient rights, living
wills, power of attorney, and funeral planning. The
Connecticut Consumer Law Project for Elders (CLPE) Hotline
may be contacted via its toll-free phone number in Connecticut/
1-800-296-1467.
Senior Alerts
From the website of the Attorney General of the State
of Connecticut, reports on legal settlements and warnings
of scams and fraudulent businesses on topics of special
interest to older Connecticut residents.
ORGANIZATIONS AND AGENCIES THAT OFFER ASSISTANCE
INTERNET WEBSITES
Administration on Aging
A variety of resources on maintaining health and sources
of services available to older adults. Published by
the federal government's Administration on Aging. Includes
hyperlinks to many agencies and resources. Select "Elders
and Families."
Connecticut
Aging Network
"A gateway to information on all aging issues and services
in the State of Connecticut." Includes addresses and
phone numbers of the five regional Area Agencies on Aging
.
Connecticut Department of Social
Services/ Services to the Elderly
An overview of the extensive services that the Connecticut
Department of Social Services provides to Connecticut
citizens 60 and over in need of help to remain independent.
Eldercare Locator
A searchable, online source of local agencies and organizations
that provide information about a variety of services
for seniors. The website directs users to agencies that
provide guidance on legal assistance, health insurance
counseling, Medicare, prescription assistance, and other
needs. A public service of the U.S. Administration on
Aging. Information on local services may also be accessed
by calling the toll free phone number 1-800-677-1116.
INFOLINE
An online directory of Connecticut resources and social
services for older adults on the INFOLINE website. INFOLINE,
an agency of the United Way of Connecticut, provides
a 24 hour phone response service to Connecticut residents
with questions "about community services, referrals
to human services, and crisis intervention." Dial 211
at any time to ask a question of INFOLINE staff.
Programs that help people in Connecticut. Benefits
Available/Who is Eligible/Where to Go.
Annual booklet produced by Northeast Utilities and
the Connecticut Association for Human Services. Overview
of federal, state and local programs that provide assistance
to Connecticut residents. Includes details on health
programs.
Write to Northeast Utilities Community Relations, Box
270, Hartford CT 06101-8362 or contact Connecticut Association
for Human Services, 110 Bartholomew Avenue, Hartford
CT 06106-2232,phone (860) 951-2212. You may download
this publication from the website of the Connecticut
Association for Human Services. Select "Publications."
Available in Spanish as well as English.
CARING FOR CHILDREN
INTERNET WEBSITES
Connecticut
Birth To Three System
1-800-505-7000. Statewide referral service for
infants and toddlers under three years old with "significant
developmental disabilities or delays." Parents or guardians
with concerns about their child's development will be
helped in the evaluation process and in accessing services
for their children. The program also serves children
with a diagnosed medical condition. State and federally
funded program. Information available in Spanish and
English on the website.
CHILDFIND
1-800-445-2722 Toll-free number for parents
of children from three to twenty-one who are concerned
about their child's development. Staffed by educational
consultants from the Connecticut Parent Advocacy Center
(CPAC). Staff will provide parents or caregivers with
information and direct them to appropriate resources
and agencies to assist their children.
Connecticut
Parent Advocacy Center
Published by the CPAC, a "statewide nonprofit organization
that offers information and support to families of children
with any disability or chronic illness, age birth through
21," this website includes links to various disability
sites.
The organization's phone line is "staffed by parents
of children with disabilities experienced and well-trained
in special education law." Parent consultants are available
to speak with parents and guardians over the phone at
1-800-445-CPAC between 8 a.m. and 4 p.m. weekdays.
Connecticut State Fact Sheet for Grandparents and Other Relatives Raising Children.
A detailed list of specific financial programs available
to grandparents and other relatives bearing responsibilty
for children in Connecticut. Published by the AARP,
national advocacy organization for older adults.
Grandparents as Parents Support Program (GAPS)
A network of grandparent support groups developed
by the Connecticut Department of Social Services Elderly
Services division to provide ongoing assistance to grandparents
raising their grandchildren.
Long Term Planning for Children with Special Needs
A variety of resources with recommendations about
planning ahead for the future financial and emotional
care of children with special health needs. From the
website of Healthnet: Connecticut Consumer Health Information Network at the Lyman
Maynard Stowe Library, University of Connecticut Health
Center.
Raising Grandchildren? Take Care
of Yourself Too!
A brief, encouraging online article from the AARP
website for grandparents overwhelmed by the responsibility
of raising their grandchildren. Recommends that grandparents
take some time away from the children for themselves.
 Back
to Contents
This resource guide was compiled by Judith Kronick,
Healthnet Reference Librarian, with the assistance of
Crystal Renfro. If you have suggestions for this list,
please contact kronick@uchc.edu.
Copyright 2008. All Rights Reserved.
Last Updated: October 23, 2008
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