Taking
Care of Yourself: A Guide for Family Caregivers
is offered by CARIE.
ALS
Association - Greater Philadelphia Chapter
Persons with ALS or their family members and caregivers
register to participate in services which includes
local resource groups, education, respite and referrals.
(215)643-5434
Alzheimer's
Association
Provides information and services through its Helpline.
Support group, family caregiver education seminars,
safe return programs for wanderers, newsletters
and speaker's bureau to person's with Alzheimer's
disease or related disorder and their caregivers.
ALZwell
Caregiver Support
ALZwell is dedicated to helping dementia caregivers
to find understanding, wisdom, and support offering
information on dementia care and other aspects of
eldercare, a network of support groups and links
to other resources.
Association
for Frontotemporal Dementias (AFTD)
The AFTD is a nationwide non-profit organization
whose mission is to promote and fund research into
finding the cause and cure for the frontotemporal
dementias; to provide information, education, and
support to persons diagnosed with FTD and their
families and caregivers; to educate physicians and
allied health professionals about FTD.
Address: P.O. Box 7191
St. David's, PA 19087-7191
Caregiver
Survival Resources
Provides help in coping with the demands of caregiving.
Caregiving.com
A national online support haven since 1996, helps
persons caring for aging relatives. The site features
the faces of caregiving, sharing stories from the
caregiving trenches, and focuses on practical solutions
for caregiving conundrums. Web site visitors can
enjoy weekly tips, an advice column and ten online
support groups.
CARIE
(Center for Advocacy, Rights and Interests of the
Elderly)
Provides free telephone consultation, which provides
options counseling and problem resolution services
to the older person, their caregivers and professionals.
(215)545-5728
Children
of Aging Parents (CAPS)
A non-profit organization which establishes and
facilitates caregiver support groups, provides educational
outreach and information on available services to
assist caregivers. (800)227-7294.
Eldercare
Locator
A nationwide service available toll free or on the
web which helps older adults and their caregivers
find local services for seniors. The toll free Eldercare
Locator service operates Monday through Friday,
9:00AM to 8:00PM, Eastern Time and can be reached
at 800-677-1116 or the Eldercare Locator can be
accessed via the internet.
Episcopal
Community Services
225 South 3 rd Street
Philadelphia, PA 19106
215-351-1400
Episcopal Community Services, ECS offers
home health care as well as pastoral care training
and support. ECS Home Care provides certified home
health aides for low-income homebound elderly. ECS
home health aides provide personal care, and caregiver
respite support. ECS also offers pastoral training
and support in hospitals, nursing homes and churches
in Bucks, Chester, Delaware, Montgomery, and Philadelphia
Counties. ECS also publishes a Prayer flyer for
those who are sick.
Family
Caregiver Alliance, National Center on Caregiving
(800)445-8106
Works to advance the development of high
quality cost effective policies and programs for
caregivers in every state of the country.
The Family Caregiver Alliance site has specialized
information on Alzheimer's disease, stroke, traumatic
brain injury, Parkinson's disease, ALS and other
disorders. Fact sheets regarding various diseases
and caregiving information can be found at: http://www.caregiver.org/caregiver/jsp/publications.jsp?nodeid=345
Some materials are available in Spanish and Chinese.
The
Home Care Network
The website for The Home Care Network includes
an audio and animated section on skills for home
caregiving.
Life
Assess Program
Holy Redeemer LifeAssess is the first program of
its kind in the nation to be certified by the Joint
Commission on the Accreditation of Healthcare Organizations
(JCAHO). The LifeAssess program -- a collaborative
effort of Holy Redeemer's two home health agencies
is a comprehensive assessment and rehabilitation
program for people age 85 that seeks to identify
and offer intervention for the four most common
geriatric syndromes (falls risk, incontinence, depression
and dementia). For more information on the Holy
Redeemer LifeAssess program, please call 1-800-818-4747.
Mesothelioma
Resource Online
A site to provide answers and support for people
diagnosed with mesothelioma, a rare form of cancer
that is caused by exposure to asbestos, as well
as for their families.
Pleural
Mesothelioma
Pleural Mesothelioma is the most common type of
mesothelioma, a rare cancer that develops in the
lungs. It is almost solely caused by exposure to
asbestos, which was used in everything in children's
toys, house-hold insulation, and naval carriers.
Most mesothelioma cancer cases are terminal and
occur in senior citizens, including many veterans,
which will likely require long-term care. Our website
has the most up to date and comprehensive information
about Pleural Mesothelioma on the web today. We
are HON code certified with information ranging
from a complete list of symptoms, to treatment options,
and steps to take after a diagnosis.
National
Alliance for Caregiving
Supports family caregivers through resource guides
and information available online or in print. Website
is home of the AXA Foundation Family Resource
Connection, a searchable database of books,
videos, websites, etc. for caregivers.
write:
4720 Montgomery Lane, Suite 642, Bethesda, MD 20814
National
Association of Geriatric Care Managers
Provides a searchable database of geriatric care
managers who are committed to maximizing the independence
and autonomy of elders while striving to ensure
that the highest quality and most cost effective
health and human services are used when and where
appropriate. A comprehensive list of organizations
serving the needs of elderly and their caregivers
can be found via the home page by clicking on "Care
Management Resources."
National
Family Caregivers Association
A grass roots organization created to educate, support,
empower and speak up for the common needs and concerns
of all family caregivers.
Christopher
& Dana Reeve Foundation
Dedicated to curing spinal cord injury by funding
innovative research, and improving the quality of
life for people living with paralysis through grants,
information and advocacy. Visit the website for
articles and resources, including conversations'
with WHYY's Dr. Dan Gottlieb.
Well Spouse
Foundation
An association of spousal caregivers which provides
peer support groups for long term caregivers. Participants
from friendships with other caregivers in similar
situations. (800)838-0879 or
REGIONAL RESOURCES - PENNSYLVANIA
Area Agencies on Aging
County programs are designed to support the caregiver
so they can continue to provide care to an older
loved one in the care recipient's home.
National
PACE (Programs for All-inclusive Care for the Elderly)
Association
Programs for All-inclusive Care for the Elderly
provide and coordinate all needed preventive, primary,
acute and long term care services so that an older
individuals can continue living in the community.
To be eligible for PACE a person must be 55 or older,
be certified by the state to need nursing home care
and live in an area served by a PACE program. In
Pennsylvania, this program is called LIFE (Living
Independently for Elders), due to the prexisitng
pharmacy benefit program administered by the state
also called PACE. Further information on PACE and
LIFE programs can be found at the national web site.
Local sites are:
LIFE University of Pennsylvania
School of Nursing
4101 Woodland Avenue
Philadelphia, PA 19104
215-573-7200
LIFE Saint Agnes
1500 S. Columbus Boulevard
Philadelphia, PA 19147
215-339-4447
Visiting
Nurse Association of Greater Philadelphia
Monroe Office Center
One Winding Drive
Philadelphia, PA 19131
(215) 473-0772
The Visiting Nurse Association of Greater Philadelphia
is a not-for-profit provider of home health care
throughout southeastern Pennsylvania. VNA services
include skilled nursing, therapies, social work
and home health aide care as well as home hospice
care and specialty care services. VNA HouseCall,
a team of visiting doctors and nurse practitioners,
provides diagnostic, prescriptive and primary care
medical services in patients' homes.
REGIONAL RESOURCES - DELAWARE
CARE
Delaware
Assistance for caregivers includes needs assessment
And care planning by experienced Delaware Division
Of Services for Aging and Adults with Physical Disabilities
( DSAAPD), organization of support groups and caregiver
training, respite care, statewide caregiver Resource
centers and community based services.
(800) 223-9074
New Castle County: (302) 453-3820
Kent/Sussex Counties: (302) 422-1386
Contact
Delaware
24-hour, 7 day/week crisis helpline for all problems,
staffed by trained volunteers who provide telephone
support and referrals, including bereavement support
groups and grief counseling throughout the state.
(800)262-9800
REGIONAL RESOURCES - NEW JERSEY
New
Jersey Area Agencies on Aging - Each of New
Jersey's counties has an agency to serve as the
primary entity responsible for developing comprehensive,
coordinated systems of community-based services
for older adults.
Caregiver
NJ
A newly launched website designed for caregivers
provides basic information regarding a variety of
caregiving situations, resources and services available
in New Jersey to assist caregivers and helps with
searches for services and resources by county.
Community
Choice Promoting Dignity, Independence and Choice
Community Choice is a statewide program of the
New Jersey Department of Health and Senior Services
created to assure that senior citizens, persons
with disabilities and their families are aware of
choices they have when it comes to long term care.
The 'Uselful Links' section of the website contains
a comprehensive list of national and state organizations,
orgainzations related to specific diseases, advocacy
groups, and associations for those in different
cultures.
SeniorWise
Care Management
SeniorWise Care Management offers professional,
certified geriatric care managers to guide families
and their loved ones through the maze of long-term
care options and choices. SeniorWise Care Management's
mission is to help older adults remain independent
and safe in their own home, for as long as possible.
Services include: comprehensive in-home client assessment,
family/caregiver consultation and ongoing Geriatric
Care Management. SeniorWise Care Management is a
non-hospice program within the Samaritan Family
of Services. To find out more about SeniorWise Care
Management and arrange for an assessment, call 856-522-5166
or visit www.seniorwisecare.org.
RELATED BOOKS
Always
On Call Carol Levine, (United Hospital
Fund; $20.00)
And Thou Shalt Honor: The Caregiver's
Companion, Beth Witrogen McLeod, (Rodale Press,
2002) $24.95
This companion book contains information and strategies
helpful to the caregiver and a resource section
listing books, web sites and contact information
for national organizations. Available in bookstores
or by calling 800-527-8200.
Caregiving
and Loss, edited by Kenneth J. Doka and
Joyce Davidson, (Hospice Foundation of America,
2001) $24.95
Caring for Aging Parents, Linda
Colvin Rhodes, EdD, (Alpha Books, 2001) $16.95
Counting on Kindness, Wendy Lustbader,
(Free Press, 1991) $14.00 available at www.lustbader.com
Dutiful Daughters, edited by Jean
Gould, (Seal Press, 1998) $16.95
Elder Rage or Take My Father...Please,
Jacqueline Marcel, (Impressive Press, 2001) $19.95
Handbook For Mortals: Guidance For People
Facing Serious Illness, Joanne Lynn, M.D. and
Joan Harrold, M.D. (Oxford University Press, 1999)
$34.00
A comprehensive and authoritative guide to end of
life care, written for a general audience by a team
of specialists that includes some of the world's
leading authorities in the field. This readable
and sensible book should be read by every family
caring for a loved one who is seriously ill, and
by every medical professional working in a palliative
care setting.
Love, Honor and Value: A Family Caregiver
Speaks Out About the Choices and Challenges of Caregiving,
Suzanne Geffen Mintz, (Capital Books, 2002) $14.95
Respecting Your Limits When Caring For
Aging Parents, Vivian Greenberg, (Jossey-Bass,1989)
$20.00
The 36 Hour Day: A Family Guide to Caring
for Persons With Alzheimer Disease, Related Dementing
Illness, and Memory Loss in Later Life, Nancy
L. Mace, Peter V. Rabins, MD, (John Hopkins University
Press, 1999) $7.95
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