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Your caregiver role is often one that goes unnoticed, and we would
like to take this opportunity to thank you for all your dedication
and sacrifice in making a difference in the lives of others.
As the new year progresses, we encourage all caregivers to take
stock of their emotional well-being. To help you in these efforts,
we are offering information and resources we hope you find useful.
The following features are included in this issue:
- Family Caregiving in the News:
MSNBC Nightly News Series on Caregivers: Trading Places;
CBS News with Katie Couric;
and
PBS Frontline: Living Old
- Resource for Help with Medicare Drug Benefit Appeals
- Ways to Save Money for the 2007 Tax Season
- Respite Care Act and Policy Initiatives
- Strategies for Improving Caregiver Well-being
- Support Groups at Beth Israel's Family Caregiver
Program
- Medication Adherence Study: Does Caregiver Burden
Impact on Patient Adherence?
NBC Nightly News has begun a series on caregiving entitled Trading
Places - Caring for Your Parents. Many of the stories feature
TV personalities and their experiences with caring for their aging
parents. However, they are also chronicling real-life experiences,
and they are encouraging their viewers and readers to share their
experiences in addressing the challenges of caring for an aging
family member. You can access these stories and videos at http://www.msnbc.msn.com/id/17049721/page/10/
CBS Evening News with Katie Couric
has also featured similar articles on caregiving. Topics include:
Caught
in a Caregiving Squeeze: Looks at the “Sandwich Generation”
- Individuals caring for aging parents while raising a family.
Elder
Care Pays off for Everyone: How companies are finding that
helping employees with aging parents can also boost their bottom
line.
Mediation Resources for Caregivers: How professional mediators
are resolving familial conflicts regarding taking care of Mom and
Dad.
An excellent public affairs documentary series, Living Old,
was recently broadcast on PBS. It explores what it means to grow
old in America--the impact for seniors, their caregivers, and society.
To view the documentary, additional background information, and
links to caregiver resources (including Beth Israel Medical Center's
Family Caregiver Resource Directory), see http://www.pbs.org/wgbh/pages/frontline/livingold/view/
In response to the growing need for assistance with appealing decisions
involving Medicare Part D (the drug benefit), the Medicare Rights
Center (MRC) is offering the following critical resources at no
cost to advocates and counselors serving the Medicare population.
MRC has created a comprehensive Part D Appeals Manual. This 24-page
professional guide begins with an overview of the five levels of
appeal, outlining all financial and filing requirements. The guide
also explains common reasons for coverage denials and how to respond,
using real case examples developed from MRC's own casework. It includes
a handy appendix with links to legal information, appeals forms,
contact information for 2007 plans, and downloadable consumer handouts.
To request an electronic copy of MRC’s Part D Appeals Manual,
email Scarlett Watts at: SWatts@medicarerights.org.
For family caregivers needing one-on-one counseling with the Medicare
Part D appeals process, contact Denise Flynn, MSW, at (212) 844-1281.
Find out if you are eligible for any local, state, or federal tax
credits or deductions. Some caregivers may want to consider itemized
deductions for medical and dental expenses, or expenses incurred
by a dependent. For veteran or senior property owners, there may
be tax exemptions of which you can take advantage. Also, low-income
individuals might be eligible for the Federal Earned Income Tax
Credit.
For tax preparation assistance, it is important to know that free
resources are available:
The Internal Revenue Service (http://www.irs.gov)
sponsors volunteer assistance programs and offers help to taxpayers
in many of its offices and other community locations. You can also
call them toll-free at 1-800-829-1040 or visit your local Department
of Aging at http://www.fullcirclecare.org/states/stateaaas.htm
The Volunteer Income Tax Assistance Program (VITA), http://www.irs.gov/taxtopics/tc101.html,
involves IRS–trained volunteers who provide free tax assistance
at community locations to individuals who need help with basic income-tax
return preparation. VITA is for those whom paid professional assistance
may be out of reach, those who are non–English speaking, persons
with disabilities, those with a low to fixed income, the elderly,
and other individuals with special needs. Many local area on aging
departments coordinate the VITA program. To find one closest to
you, visit http://www.eldercare.gov/Eldercare/Public/Home.asp
Another program, Tax
Counseling for the Elderly (TCE), is designed primarily for
persons 60 years or older, particularly those who are confined to
their residence or retirement communities. IRS–trained volunteers
from non–profit organizations provide free tax counseling
and basic income tax return preparation to senior citizens. Volunteers
travel to taxpayers' homes, if they are unable to come to a local
TCE site. Under a cooperative agreement with the IRS as part of
this program, AARP has operated a Tax-Aide program since 1968. The
program is available February 1 - April 15 but, during the off-season,
the program continues to provide online tax counseling. See
http://www.aarp.org/money/taxaide
and
https://wpp.aarp.org/vmis/sites/tax_aide_locator.jsp
The Lifespan Respite Care Act was signed into law on December 21,
2006, authorizing $30 million in the first year and almost $300
million over five years for competitive grants for states and local
governments and agencies to increase the availability of respite
care services for family caregivers of individuals with special
needs, regardless of age. The bill also promotes a system for coordinating
access to respite care at the state and federal levels. For more
information, please visit this link.
In November 2006, The United Hospital Fund’s (UHF) Families
and Health Care Project created a strategy for addressing the needs
of New York State’s two million caregivers. Carol Levine,
the Director of the Project, is spearheading this policy agenda
for examining systemic approaches for improving the quality of life
of folks with disabilities and their caregivers. Some of these approaches
include the following:
- Assessment of caregiver needs and available services
- Review and update of key policies and practices that
address caregiver needs
- Mechanisms to coordinate caregiving-related activities
and policy implementation
- Strengthening local agencies to reach, assess, and
support caregivers
The full text of both documents (.pdf), developed
with support from the Greenwall Foundation, are available online:
New York State Policy Agenda for Family Caregivers http://www.uhfnyc.org/pubs-stories3220/pubs-stories_show.htm?doc_id=424823
An Ethical Framework for New York State Policy Concerning Family Caregivers
http://www.uhfnyc.org/pubs-stories3220/pubs-stories_show.htm?doc_id=424817
For more information: Contact Robert de Luna at 212-494-0733 or email:
rdeluna@uhfnyc.org.
The following is a list of conferences for caregivers:
March 22, 2007
North Bay Alzheimer's Disease Annual Education Conference for Caregivers
& Professionals
Alzheimer's Disease: Continuum of Care
Petaluma, CA
March 29, 2007
Fearless Caregiver Conference
Miami, FL
MAY 6 - 8, 2007
The First International Conference of Grandparents and Other Kinship
Caregivers
Brooklyn, NY
June 16 - 19, 2007
Canadian Caregiver Coalition, Caregivers: Essential Partners in
Care Conference
Toronto, Canada
MaineHealth’s Partnership for Healthy Aging
(PFHA) Guidebook for the Caregiving Journey is dedicated
to helping older adults remain active, healthy, and living independently.
Working with local, state, and national organizations, PFHA serves
as a catalyst for collaboration across the aging and health service
sectors in providing interventions for older adults to promote a
continuum of care and services for successful aging. The
Guidebook for the Caregiving Journey (.pdf) offers advice
on
- Gathering information and resources
- Exploring alternative living arrangements, and
- Understanding legal and financial issues.
The National Center on Caregiving at
the Family Caregiver Alliance (FCA) has recently updated
its caregiver resource database, Caregiving Across the States,
which provides information on government-sponsored caregiver services
and statistics on a state-by-state basis. To learn more about the
family caregiving landscape in your state, visit FCA’s Caregiving
Across the States website:
http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=1274
The Department of Pain Medicine and Palliative Care is offering
two time-limited group therapy programs for chronic pain patients
and their family members and friends. Groups meet every week for
8 weeks beginning March 12, 2007 until April 30, 2007.
Chronic Back Pain Group: For adults
under age 65
Karpas Health Information Center
311 First Avenue (corner of 18th Street)
New York City
Time: 4:00 - 5:30 PM, Mondays starting March 12, 2007
Contact: Cynthia Rodriguez, (212) 844-1390 or (877) 620-9999
Osteoarthritis Pain Group: For adults 65 years and older
Phillips Ambulatory Care Center
10 Union Square East, (between 14th and 15th Streets)
2nd Floor, Conference Room 1 or 3
New York City
Time: 11:00 AM - 12:30 PM, Thursdays starting March 15, 2007
Contact: Denise Flynn, MSW, (212) 844-1281 or (877) 620-9999
This program is supported in part by a grant from the Sara Chait
Memorial Foundation.
Ongoing Support Groups for Caregivers of People with
Parkinson's Disease (Dept. of Neurology)
Phillips Ambulatory Care Center
10 Union Square East, (between 14th and 15th Streets)
New York City
Afternoon groups meet in the 2nd floor conference room
Evening groups meet in Suite 5H conference room
Time: Thursday afternoons 2 - 4 PM and
Wednesday evenings 6 - 8
PM
Contact: Call (212) 844-6134 to register
After-Stroke Support Group for Caregivers and Patients
(Dept. of Neurology)
Phillips Ambulatory Care Center
10 Union Square East, 2nd Floor, (between 14th and 15th Streets)
New York City
Time: 4:00 PM to 5:30 PM, 3/1, 3/15, 4/12, and 4/26/07
Contact: Daphne Gerson, MSW, at (212) 844-8114 or Agata Woldan,
MSW, at (212) 420-2358
At Beth Israel's Karpas Health Information Center:
For a listing of workshops that are available to caregivers, please
call Karpas Health Information at (212) 420-4247 or follow
this link.
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,
through the generous support of the Mayday and Milbank Foundations,
is conducting a study to explore the impact of caregiver burden
and distress on patients’ ability to manage their pain treatments.
For more information, please contact Denise Flynn, MSW, at (877)
620-9999 or (212) 844-1281.
Are you concerned about your future risk for disease and want to
do something about it? The Harvard Center for Cancer Prevention has created a new website,
www.yourdiseaserisk.com, which assesses your risk of cancer and
other diseases and offers sound advice in lifestyle changes to combat
those risks. Graham Colditz, Director of the Cancer Prevention Center,
founded the site in an effort to educate people on how positive
lifestyle changes can lower or prevent the risk of certain diseases.
Visit this site for your free personal assessment and other educational
information on disease prevention.
The Concord Monitor reported on December 4, 2006 that many companies
are starting to develop products that would help keep track of adults
with Alzheimer's Disease and other types of dementia who are prone
to wander and who still live at home. For example, the article highlighted
an alarm system and tracking device to help caregivers monitor their
charges. The developer has long provided similar systems to nursing
homes and hospitals, but this is its first product line designed
for seniors living at home. For more information follow
this link.
Joanne Lynn has created a guide to reforming healthcare policy for
the last years of life. In her new book, Sick to Death and Not
Going to Take It Anymore! she lays out facts, concepts, strategies,
and action plans for genuine reform, and gives healthcare providers
new ways to interpret information creatively, imagine innovative
possibilities, and take steps to implement them. Her book can be
accessed online at http://www.medicaring.org/sicktodeath/index.html.
Researchers at the University of Rochester Medical Center in New
York State published new findings indicating that African-American
patients are more likely than Caucasian patients to prefer life-sustaining
care when confronted with an incurable illness or serious mental
and physical disability. The researchers claim that African-American
patients’ preferences conflict with current prevailing views
regarding end-of-life care, and they may have difficulty obtaining
care consistent with their values and beliefs. For more information,
visit http://www.urmc.rochester.edu/pr/news/story.cfm?id=1315.
I have
been taking care of my 87-year-old husband who has congestive heart
failure and arthritis. He is wheel-chair bound, and I am responsible
for doing all the housework, cooking, and managing of the household
affairs. We have a home attendant who comes for a few hours per
day, but my husband complains that she does not cook his meals the
way I do, and he doesn’t feel comfortable with her around
the house. I am 78 years old and still active. I used to enjoy sculpting
and going to the movies, but now I can’t. I feel too guilty
leaving him alone, and yet I need a break! What should I do?
According to the National Family
Caregivers Association (1998), when asked directly, family caregivers
identified loss of leisure as one of the top three negative consequences
of being a caregiver. Yet, leisure activities provide you with a
sense of enjoyment, expressiveness, and belonging that is important
for your overall emotional well-being. They allow you to get away
from your sense of obligation, while renewing your physical and
intellectual resources.
Feeling guilty is normal. To alleviate some of those feelings, set
up a meeting with the home attendant so that you can give her the
proper instructions on how to prepare his meals. Explain to your
husband that the home attendant will take care of his needs while
you are gone. Also, reassure him that you will be back momentarily
and that you are taking a few hours to care for your personal needs,
whether that is running errands or sneaking off to the movies. Remember,
it is important to not feel trapped in your caregiver role. You
have needs, too.
For other helpful tips and suggestions to get your physical, emotional,
and spirituals needs met, see “You Have Needs Too” in
the Caregiver Resource Directory (.pdf) at http://www.netofcare.org/content/pdf/5-youhaveneedstoo.pdf
My wife of 40 years has been
living with osteoarthritis for the last five years. She is becoming
more and more moody and often takes her frustration out on me. I
want to be there for her, but I am feeling frustrated myself. What
can I do?
It is not unusual for your
wife to be behaving in this manner. Often individuals who are suffering
from chronic illnesses are struggling with feelings of resentment,
anger, and frustration. Those closest to them usually get the brunt
of their anger because they are nearby and familiar. They feel safe
expressing such emotions without fear of rejection.
Nevertheless, as a caregiver, it is difficult not to take these
emotions personally. Keep in mind that your wife may actually be
grieving many different losses: the loss of some of her ability
to function; the loss of independence; and the loss of control because
her future is uncertain. Try to keep an open mind and understand
that other emotions may be behind her anger.
If her behavior alarms you, have her speak to her physician to rule
out any underlying medical conditions, such as depression. Often
depression can be alleviated through medication and counseling.
Educate yourself on your loved one's illness, so you are aware of
the the signs and symptoms of her disease. Remember, it is your
loved one's illness acting out, not the person. Lastly, recognize
that it is okay for you to experience your own feelings of frustration
and sadness. Know when you need a break, and get the outside support,
such as respite services. Your local department of aging can be
of some assistance. For more information, see http://www.fullcirclecare.org/states/stateaaas.htm.
I have to look into a nursing
home for my 85-year-old father who has late-stage Alzheimer’s
disease. Where do I begin, and how do I cope with the ambivalent
feelings of placing him there?
Making the decision to place
your loved one in a nursing home is never easy. Often, family members
react with feelings of guilt, ambivalence, and sadness because they
no longer have the capacity to adequately meet the multiple needs
of disabled loved ones. Family members are also concerned with finding
the right environment for them.
To assist families in that process, the Administration
on Aging offers resources and guidelines for choosing the best
facility for your loved ones.
Also, the National Institutes of Health in collaboration with the
American Health Care Association offers advice to families on addressing
their feelings of guilt and ambivalence. They also discuss ways
to have a conversation about long-term care with disabled loved
ones. For helpful suggestions, go to http://www.nlm.nih.gov/medlineplus/nursinghomes.html.
This newsletter is made possible by grants from The New York Community Trust and the Jean and Louis Dreyfus Foundation, Inc. in support of the Beth Israel Caregiver Resource Center.
Have a question? Have caregiver news? Please
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