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Net of Care is resuming its quarterly newsletter that is intended
to provide you with information and resources, keeping you informed
of up-to-date news and events for family caregivers of patients
with serious illnesses. The Family Caregiver Program of Beth Israel
Medical Center’s Department of Pain Medicine and Palliative
Care supports this newsletter. Please visit our homepage at www.NetofCare.org
for further information and community resources. We welcome your
suggestions, and we encourage you to share your caregiver stories.
Is caregiving adding stress to your life? Get help from our interactive
survey at http://www.netofcare.org/content/survey.aspx
November is a nationally recognized month that attempts to shed
light on the many challenges facing today’s caregivers through
advocacy, policy, and program development. It is also a time to
recognize and thank caregivers for their dedication in assisting
those unable to care for themselves. The following updates and links
are provided for caregivers, a unique group of individuals.
Contact Congress in November to Pass a Bill to Help Family
Caregivers. Ask the New York State Legislature to support
Bill A. 2607 which requires that any group health
insurance plan in the state of New York that covers inpatient hospital
care should also cover respite care. Go to New York Legislature:
http://public.leginfo.state.ny.us/menuf.cgi
See other national legislation focusing on respite and other caregiving
issues: www.caregiver.org/caregiver/jsp/print_friendly.jsp?nodeid=789
Check out national and local events, projects, and conferences celebrating
and promoting other health care initiatives taking place across
the country. For more information, call or link to the following
sites:
National Caregivers Month
National Caregivers Alliance
10400 Connecticut Avenue, Suite 500
Kensington, MD 20895-3944
Toll Free: (800) 896-3650
Fax: (301) 942-2302
www.thefamilycaregiver.org
National Diabetes Month
American Diabetes Association
1701 North Beauregard Street
Alexandria, VA 22311
Toll Free: (800) 342-2383
www.diabetes.org
National Hospice Month
National Hospice and Palliative Care Organization (NHPCO)
1700 Diagonal Road, Suite 625
Alexandria, VA 22314
Phone: (703) 837-1500
Fax: (703) 837-1233
www.NHPCO.org
Carepages
http://www.carepages.com
Carepages are free, private Web pages that make it easy to stay connected
to family, friends, co-workers, and others who care about you and
your loved one. The service is available to anyone caring for a loved
one, but may be particularly helpful to those who have recently found
themselves in a caregiving role.
Lotsa Helping Hands
http://www.nfca.lotsahelpinghands.com
National Family Caregivers Association is partnering with Lotsa
Helping Hands to provide an easy-to-use, private group calendar,
specifically designed for organizing helpers, where everyone can
pitch in with meal delivery, rides, and other tasks necessary for
life to run smoothly during a crisis. By clicking on the link above,
a volunteer coordinator creates a free, private website through
a user-friendly system that requires no training. Members are added
to the list and are automatically notified of available volunteer
opportunities. Volunteers can sign up for any number of events,
view their current commitments, and receive email reminders of upcoming
obligations.
Strength for Caregiving
http://www.strengthforcaring.com
Strength for Caring is an online resource and community center for
family caregivers. The site contains information on health conditions,
symptom management, and self-care; resources to address practical
issues such as housing, money, and insurance, as well as caregiver
support via an online community.
In preparation for the upcoming Medicare Annual Coordinated Election
Period, the Medicare Rights Center (MRC), a national consumer group,
has made their award-winning web tool, Medicare
Interactive (MI), publicly available from November 1 to December
31, 2006. Written in user-friendly language, this website, called
Medicare Interactive, lets you search within broad topics,
look up basic information, or seek out specific terms. Only through
MI can consumers, caregivers, and healthcare professionals across
the country access the most up-to-date Medicare information and
resources, including state-specific information on picking the right
plans, how to file an appeal, and what to do in the prescription
drug coverage gap. It is easy to join, just type: help.medicareinteractive.org
and a virtual online guide will help you navigate your topics of
interest.
Russell
K. Portenoy, MD, Chairman of Beth Israel's Department of Pain
Medicine and Palliative Care, was recently elected President of
the American Academy of Hospice and Palliative Medicine (AAHPM).
His term will begin in January 2008. In this new role, Dr. Portenoy
is looking to address the needs of not only patients, but also the
needs of their caregivers. “Palliative care is an approach
to the care of patients with serious medical illnesses that formally
recognizes the family as the unit of care. When palliative care
is provided, the needs of family caregivers will be evaluated over
time, and efforts will be made to provide ongoing support and information.”
As part of that commitment, his department has a dedicated program,
The Family Caregiver Program, designed specifically for caregivers.
Caregivers can receive individual counseling, group support, as
well as access to educational and community supports. To learn more
about this program, please call Denise Flynn, MSW, at (212) 844-1281.
Is your loved one failing to take his or her pain medications? As
a caregiver, are you overwhelmed by managing your loved one’s
treatment schedule? If you have answered “yes” to any
of these questions, we are interested in hearing from you. Beth
Israel’s Department of Pain Medicine and Palliative Care is
conducting a study to explore the impact of caregiver burden and
distress on patients’ ability to stick to their pain medication
treatment goals. Interested candidates must utilize the services
of Beth Israel Medical Center and must meet the following criteria:
- Any patient who has experienced chronic pain for three
months
or more
- Any chronic pain patient taking a prescription opioid
on
a fixed schedule
- Cancer and AIDS patients at any stage of the disease
who have
experienced pain for one month or more and
who are taking prescription
opioids around the clock
on a fixed schedule
- No evidence of active substance abuse problems for
at least one year prior to the study
- Patients who have a non-professional caregiver,
defined as anyone
who provides any type of physical
and/or emotional care for the
person with chronic or
illness-related pain. A blood relationship
will not be
a prerequisite, nor will the caregiver have to reside
with the ill person.
For more information, please contact Denise
Flynn, MSW, at (877) 620-9999 or (212) 844-1281.
Support group for family and friends of patients coping with illness.
At these sessions, caregivers will be able to: discuss concerns
about living with a loved one’s illness; share experiences
with other caregivers; receive emotional support related to caregiving;
learn about helpful skills like communication, relaxation, stress
management; learn about programs and services to support caregivers.
When: Tuesdays 5:30 pm - 7:00 pm, from
November 14 to December 19, 2006.
Where: Karpas Health Information Center
Beth Israel Medical Center
311 First Avenue at 18th Street
New York, NY 10003
Pre-registration is required. Please contact Denise Flynn, MSW at
(212) 844-1281.
The mission of Beth Israel’s Latino Health Initiative is to
dramatically improve the health status of Hispanics in New York
City. The program focuses on four areas:
- Patient advocacy
- Continuity of care
- Cultural competency in the delivery of health services
at all levels
- Elimination of the causes of health disparities due to
ethnic and racial causes
For more information about this service contact:
Itzamna Medical Center
359 Second Avenue at 21st Street
New York, NY 10010
212) 420-9225
Don’t forget to get your flu shots! KHICE
will be sponsoring free flu shots during the month of November.
November 16, 21, and 30, 2006. Call Karpas Health Information Center
at (212) 420-4247 for details.
Benefits, Entitlements, and Health: Understand
how you and your loved one might be eligible to receive assistance
with rent, healthcare, utilities, and other entitlements by attending
one of these sessions. If you are an older New Yorker or a person
with a disability, this session is worth attending. Individual sessions
will be held on November 1, 8, and 15 from 10:00 am to 12:00 pm
at the Karpas Health Information Center. Call (212) 420-4247 for
more information.
The New York City Department of Aging also has a help line, call
311, for more information on benefits, entitlements, and health,
or visit their website at http://www.nyc.gov/aging
New approaches to immunizing patients against harmful protein buildup
characteristic of Alzheimer’s disease offers hope for safer
treatments. New research is being conducted that aims to bring the
benefits of vaccines without harmful side effects. These treatments
are raising hope for this largely untreatable disease. Learn more
about this research at: http://www.technologyreview.com/read_article.aspx?id=17634&ch=biotech
As National Breast Cancer Awareness Month winds down, millions of
Americans have been reminded that mammograms save lives. If it works
for breast cancer, why can’t something like that be done for
the No.1 cancer killer, lung cancer? A study in this week’s
New England Journal of Medicine suggests that early screening can
make a difference. Learn more about this research at: http://www.cnn.com/2006/HEALTH/10/26/lung.scans/index.html
Advance directives are statements made by the patient that describe
the treatments that should or should not be given in the event a
medical situation arises, and the patient is unable to speak for
himself or herself. The National Mental Health Association (NMHA)
has developed a toolkit of resources for organizations and individuals
to use in promoting the successful implementation of psychiatric
advance directives in their local communities.
Psychiatric advance directives offer several key benefits. Correctly
implemented and executed, they can:
- Promote individual autonomy and empowerment
in the recovery
from mental illness
- Enhance communication between individuals and
their families,
friends, healthcare providers, and
other professionals
- Protect individuals from being subjected to ineffective,
unwanted, or possibly harmful treatments or actions,
and
- Help in preventing crises and the resulting use of
involuntary
treatment or safety interventions such as
restraint or seclusion.
For more information or to obtain a copy of the NMHA Psychiatric
Advance Directives Toolkit, please contact the Advocacy Resource
Center at (800) 969-6642 or simply download the components from
www1.nmha.org/position/advancedirectives/index.cfm
As the
only caregiver for a loved one with a long-term condition, I sometimes
get overwhelmed and exhausted by the expectations placed on me.
How do I get others to help if they are not forthcoming?
It is important for you to
keep in mind that even if you are the primary caregiver for the
patient, it is not realistic for you to try to handle everything
yourself. Most likely, you have a life outside of the patient, filled
with additional duties and responsibilities. Try not to think about
being a “burden” on others or hold back in fear of their
judgment. You are experiencing a big challenge and it is okay for
you to turn to your family and close friends for help. Make a list
of people whom you trust and delegate certain tasks such as: running
an errand; cooking a meal; offering companionship, etc. In order
to gain some control over the situation, you must make a plan of
action. For more help hints, see www.netofcare.org/content/getting_started/taking_stock.asp
I am the daughter of a mother
who has many medical problems requiring more and more help. The
problem is, I live in New York and she lives in California. Is it
possible to be an involved caregiver if one does this long-distance?
Absolutely! Long-distance caregiving
is not uncommon today because of increased mobility, job transfers
and changes in living and family arrangements. Many long-distance
caregivers feel the added stress and guilt because they are not
“physically” present to manage their loved one’s
care. However, that doesn’t diminish the genuine concern and
love they have for their ailing loved one.
In these situations, it might be helpful to turn to the Eldercare
Locator, a public service supported by the U.S. Administration on
Aging. The Eldercare Locator connects caregivers of older Americans
with sources of information on senior services in their community.
You can call and speak with a specialist at 1-800-677-1116 or see
www.eldercare.gov/Eldercare/Public/Home.asp
California also has Caregiver Resource Centers which serve as a
point of entry to services available to caregiving families in every
county of California. Services are free or low cost and include:
family consultations and care planning; respite care; legal and
financial consultation, support groups and other specialized information.
For more information, you can visit
www.californiacrc.org/californiacrc/jsp/home.jsp
If the person I care for has
services in the home, like a visiting nurse or home health aide, what
rights do we have if we believe that more help is needed?
Many issues can arise when you
are dependant on someone else for the care of the patient. You may
find that you do not like the way the home care worker is doing something
or that the person does not show up at his/her scheduled time. You
need to know the proper way to handle and resolve these and other
problems with home care professionals in order to make the care plan
work. Here are some helpful hints:
- Find out who is the target person/supervisor you should
speak to about
any complaints or problems. This is
usually a nurse who is assigned to
the patient's case.
Write down these important contact numbers.
- If there is a problem, tactfully raise it with the home
care worker.
If you do not feel comfortable with this,
or the problem persists,
discuss it with the supervising
nurse who can tell you how to handle
the problem or
take care of it for you.
- Do not hesitate to speak to the home care agency if you
feel that
you need more help in the home. There may
be other resources available
to you through your
insurance or other means that can be of help.
The Caregiver Resource Directory
of Beth Israel's Department of Pain Medicine and Palliative Care
addresses caregiver issues such as these and directs the caregiver
to helpful resources in their community. For further assistance,
see www.netofcare.org/content/default.asp
How do
caregivers cope during the holidays?
In a previous recognition of
National Family Caregivers Month, Suzanne Mintz of the National
Family Caregivers Association and Tom Swanson, PhD, from VistaCare
had joined WebMD to chat about the challenges of being a family
caregiver and answer questions about caring for loved ones during
the holidays. Many of their suggestions can be useful to today's
caregivers. You can access this transcript by linking to http://www.webmd.com/content/chat_transcripts/1/104318.htm
Have a question? Have caregiver news? Please
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