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Beth Israel Medical Center’s Department of Pain Medicine and Palliative
Care (DPMPC) is pleased to announce the creation of NetofCare.org,
a community resource network for NYC-based services for caregivers
of patients with serious medical illnesses. NetofCare.org provides
information by illness condition, caregiver situation, and geographic
location. This site will also present multimedia educational opportunities
in the form of webcast seminars and online support, through newsletters
and telephone support groups.
To learn more about NetofCare and other programs, visit
www.NetofCare.org
There are currently an estimated 200,000 people with Alzheimer’s
disease residing in the five boroughs of New York City. The Alzheimer’s
association, New York City chapter, is celebrating their 15th Annual
Memory Walk on Sunday, October 26, 2003 at Riverside Park, West
83rd Street. On-site registration begins at 9:00 a.m. and ends at
12:00 noon, with closing ceremonies, raffle prizes, and special
awards.
To register online or to learn more about the New York City chapter,
visit: www.alzheimernyc.org
or call (212) 983-6906, Ext. 242.
(Bethesda, MD) - The National Alliance for Caregiving (NAC) and
New York City-based Friends and Relatives of Institutionalized Aged
(FRIA) have jointly created a booklet to help family caregivers
advocate for palliative care on behalf of relatives in long-term-care
settings. A review of scientific literature on the topic conducted
by NAC and FRIA revealed that families caring for a loved one suffering
from a chronic, progressive condition (e.g, congestive heart failure,
multiple sclerosis, or Alzheimer’s disease) may lack the information
they need to advocate effectively for optimal care. In addition,
professional caregivers themselves may lack the necessary information
about palliative, supportive, and comfort care.
To request a copy of this free booklet, send an e-mail to info@caregiving.org. The booklet also is available as a free download on NAC’s Website at www.caregiving.org/care.pdf, and FRIA’s Web site at www.fria.org.
The recently released "Internet Health Resources Study" from
the Pew Internet & American Life Project reports that six million
home caregivers are now online. As a group, caregivers are far more
active than the general online population: 55% of them searched
for information on prescription or over-the-counter drugs (vs. 34%
of general users) and 62% looked for information on a specific medical
treatment or procedure (vs. 47% of the general audience). This study
demonstrates the central role of family caregivers in treatment
decision-making and the importance of targeting caregivers directly.
To read this and other articles, visit: www.pewinternet.org.
This free, 10-week telephone support group can help family and friends
of patients facing serious medical illness. The group will address
the many concerns related to living with a loved one's illness and
aims to bring caregivers together to share similar experiences,
provide emotional support, and learn helpful coping strategies such
as communication, relaxation, education, and stress management.
To join the group, or for more information, call (212) 844-1713.
To learn more about this and other programs, visit:
NetofCare
E-Newsletter
Elderly patients with serious medical illness and their families
or caregivers experience many physical, psychological, social, and
spiritual concerns. By providing expert palliative care, the Palliative
Home Care Service hopes to improve the quality of life of patients
and their families.
If you are interested in this program, ask your physician to contact
us at (212) 420-4139. Your physician will receive a response within
one business day.
H.O.P.E. is a unique community-based program designed to serve the needs
of an increasingly older and more frail senior population. Its primary
goal is to decrease loneliness and social isolation. Trained volunteers
provide companionship and help maintain an ongoing link to Beth Israel
Medical Center.
To make a referral to the program, or for more information, please
contact the H.O.P.E. Coordinator at (212) 420-5659. In Brooklyn,
please call (718) 377-4036.
The aging of America, in conjunction with lack of effective new
treatments, could see cases of Alzheimer's disease triple by 2050,
according to a study. According to a new study, detailed in the
August 2003 issue of the Archives of Neurology published by the
American Medical Association, describes a collision course between
the need to find new treatments to stem the tide of Alzheimer's
with the growth of America's over-85 population. The 85-year-old
and over now represent the fastest growing segment of our population,
according to the U.S. Census Bureau.
To read the complete article visit: www.caregivershome.com/news/article_2003_08_8_without_new.html
Fifty years ago, Hodgkin's Disease (HD), a cancer of the lymphatic
system, was almost always fatal. With the introduction of effective
treatment regimens, HD is now curable with an 85 percent survival
rate at five years; there are about 120,000 survivors of HD in the
United States today. However, the success of HD treatments is accompanied
by an increased risk of other types of cancers. Survivors of HD
have an increased risk of developing leukemia, sarcoma (cancer that
develops from connective tissue such as bone, cartilage, or muscle),
and breast, lung, and thyroid cancers. Among female HD survivors,
breast cancer is the most likely tumor to develop and is a major
concern for these women.
To read the complete news release visit: http://www.cancer.gov/newscenter/pressreleases/HodgkinsBreast
Early this year, there was a media report of a suspected cluster
of ALS among Italian soccer players. This important scientific observation
requires scientific study although, at this time, it is not clear
exactly what the possible association between ALS and soccer playing
may be. The Miami Herald and the National Italian American Foundation
have announced and published story updates. In its July 30, 2003
story, "ALS Prober Looking at Soccer Move," the Miami Herald reports
that a 10-year British study is beginning to track the health of
soccer players following the deaths of some British soccer players.
To read the conclusions and recommendations of this study visit: http://www.alsa.org/news/drugnews080503.cfm
Advance directives are statements that describe your wishes for treatment
in the event that you are unable to speak for yourself. An attorney can
assist you in the preparation of an advance directive. While laws vary
in each state, most recognize at least one of two advance directives:
A new law, called the New York Health Care Proxy Law, allows you
to appoint someone you trust, for example, a family member or close
friend, to decide about treatment if you lose the ability to decide
for yourself. You can appoint someone by signing a form called a
Health Care Proxy. You can give the person you select, your "health
care agent", as little or as much authority as you want. You can
allow your health care agent to decide about all health care or
only about certain treatments. You may also give your agent instructions
that he or she has to follow. Your agent can then make sure that
healthcare professionals follow your wishes and can decide how your
wishes apply as your medical condition changes. Hospital, doctors,
and other health care providers must follow your agent's decisions
as if they were your own.
(A Guide for Patients and Families - New York State Department of Health)
A Living Will is a set of written instructions that outline your
health care wishes at the end of life. If you complete a Health
Care Proxy and also have a Living Will, the Living Will provides
the instructions for the health care agent.
To learn more about the advantages of advance directives, visit: www.netofcare.org/content/goals_care/advance_directives.asp
A: A "family caregiver" is anyone who provides
any type of physical and/or emotional care for an ill or disabled
loved one at home. Sometimes, "family" is whoever shows up to help.
At a time when hospitals are releasing patients earlier, the elderly
are living longer, and people are living with many chronic illnesses,
more family members and friends are caring for loved ones at home.
People often find themselves having to perform new and unfamiliar
tasks. These may include: giving medicines, helping with personal
care, assisting with meals, and performing medical and nursing procedures.
There are different types of family caregivers. Some caregivers
are parents of children with physical, mental, or emotional illness.
Some are adult children of aging and frail parents who can no longer
care for themselves. Others are spouses, life-partners, family members,
neighbors, or friends caring for loved ones suffering from an illness
or disability. www.netofcare.org/content/getting_started/default.asp
A: If your suggestion initially meets resistance, you
may have to persist over time, slowly but surely. There may be other underlying
problems that can suggest why your parents refuse help. Try to explore
the reason(s) why they do not want anyone at home. Common reasons are
mistrust of the system, privacy issues, lack of money, and/or emotional
feelings like fear or depression. A family meeting involving all members
can be useful in stressing the positive aspects of home care. Some people
in need of assistance are more receptive to someone they know and trust,
such as a family member or neighbor. If you are concerned about your family
members' ability to care for themselves, an assessment by the family physician
is the place to start.
A: Caregivers often wait until they find themselves far
beyond their abilities and circumstances before they ask for help. Ask
for help before you are in crisis. Research has shown that caregivers
are at a greater risk for stress-related illnesses. Respite services help
to preserve the quality of caregivers' daily life, which makes them
better able to provide quality care to their loved ones.
www.netofcare.org/content/getting_started/asking.asp
A: Palliative care is the term used to describe
the clinical approach to the patient with a progressive life-threatening
disease. Palliative focuses on preserving the quality of life and
ensures that death occurs with comfort and dignity, in a manner
consistent with the desires and values of the patient and family.
Palliative care specialists try to encourage all health care professionals
to see their roles as enhancing the quality of life of patients
with serious progressive disease by controlling pain and other distressing
symptoms, providing psychosocial and spiritual support, and developing
systems that can offer practical support to the patient and family.
To learn more about palliative care: www.stoppain.org/palliative_care/palliative.html
A: In the simplest case, something dangerous --
heat from the stove, the cut of a knife, electricity from an outlet,
an object colliding with your toe -- damages or threatens to damage
tissue in your body. Pain receptors, called nociceptors, send signals
to your brain via your spinal column telling you of the danger,
so you can take measures to protect yourself or prevent further
injury. This type of pain, called nociceptive pain, is the most
common. It is experienced with muscle or bone injuries, surgery,
or pressure from an infection or condition like cancer. It can be
experienced as sharp, dull or aching, in a large or small area,
and generally goes away as the damage to your body heals.
To learn more about what causes pain, visit: www.StopPain.org/pain_medicine/faq.html
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