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Caring for a relative near the
end of life puts you right in the middle of the health care
system at a time when you are very emotional. Family issues,
spiritual concerns, worry about pain, and confusion over
medical procedures can make a tough job tougher. Here are
some resources to help you and your family navigate through
this turbulent time. You may also contact the Grand Island
Coalition for End of Life at 308-398-5485 or info@respectmywishes.org.
Someone will get back to you within 2 business days. We are
happy to help you.
Resources
Caregiving
- Check out our section on Medical Concerns and Emotional-Spiritual
Issues. In addition, we have an article filled specifically
with Caregiving Tips.
- CareGuide features
a full range of services, articles and resources for elder
care.
- Eldercare Online provides
an online community where supportive peers and professional
help you improve quality of life for yourself and your
elder through information, education and support.
- The National Family
Caregivers Association provides
education and support for caregivers.
- Thedownloadable Eldercare
at Home booklet is
part of a comprehensive program by The American Geriatrics
Society Foundation for Health in Aging to provide support
and guidance to families caring for a loved one. Although
not specific to end of life care, this pamphlet covers
many common issues including physical problems,
mental/social problems and caregiving techniques
and strategies.
- The Eldercare Locator is
perfect for caregivers who live in a different community
from the person they care for. It connects older Americans
and their caregivers with local sources of information
on senior services.
Specific Diseases
- Living with Advanced Congestive Heart Failure: A Guide
for Family Caregivers
is a downloadable booklet prepared by the Center for Palliative
Care Studies. Topics include disease management strategies,
the role of the caregiver, end of life issues specific
to this condition, and living well with congestive heart
failure.
- CancerSource.com states
it offers the most complete and current cancer information
available. The site is divided into sections for patients
and medical professionals.
- Living with Advanced Lung Disease: A Guide for Family
Caregivers This downloadable booklet was
prepared by the Center for Palliative Care Studies
and covers topics such as disease management strategies,
the role of the caregiver, end of life issues specific
to this condition, and living well with lung disease.
- For caregivers of persons with Alzheimer’s,
mental health conditions and chronic diseases,
answers4families.org provides information, opportunities
for dialogue, education, and support for Nebraskans
caring for children or elders with special needs
(chronic illness, mental health conditions, Alzheimer’s,
etc.).
Pain Management
- In addition to our own article on managing pain,
you may want to check out the following:
- Partners Against Pain is
divided into sections for patients, caregivers, medical
professionals who are looking for information on current
research, policy, resources, and other issues having to
do with pain.
- The Pain Foundation website
includes a pain care bill of rights, pain action guide,
legislative updates and patient information that can be
searched by disease type, as well as other resources and
links.
Understanding your loved one's wishes
- We suggest you read the Important
Decisions section of our website together.
From there you can download an advance directive and
read articles about defining quality of life, making
choices regarding health care and starting the conversation.
- Caring
Conversations is a consumer education initiative
that helps individuals and their families share meaningful
conversation while making practical preparations for
end of life decisions. The downloadable booklet was
put together by the Center for Practical Bioethics
and is available in both English and Spanish.
- Talking
about Your Choices is a downloadable guide
for talking about end of life decisions.
Produced by Partnership
for Caring, this group also offers live chats,
moderated discussions and opportunities to participate
in advance care planning advocacy activities on the
national level.
- Consumer's
Tool Kit for Health Care Advance Planning.
This is a very thorough, yet readable, set of articles
developed by the American Bar Association to help consumers
prepare an Advance Directive.
Tool 1: How to Select Your Health Care Agent or Proxy
Tool 2: Are Some Conditions Worse Than Death?
Tool 3: How Do You Weigh Odds of Survival?
Tool 4: Personal Priorities and Spiritual Values Important to Your Medical
Decisions
Tool 5: After Death Decisions to Think About Now
Tool 6: Conversation Scripts: Getting Past the Resistance
Tool 7: "Proxy IQ Test" for Family or Physician
Tool 8: What to Do After Signing Your Health Care Advance Directive
Tool 9: Guide for Health Care Proxies
Tool 10: Resources for Advance Planning for Health Care
Please Note: Grand Island Coalition
for End of Life Care does not specifically endorse these
resources, but offers them as a sample of the kinds of
materials and services that are available.
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