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Net of Care
Balance between Caregiving and Your Job
In This Issue
What's New
Beth Israel Medical Center Programs
New Medical Developments
Advance Directives
Frequently Asked Questions (FAQ)

 

Beth Israel


1. What's New

Recognizing a Role that Goes Unnoticed
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?

MSNBC Nightly News Series on Caregivers: Trading Places
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.

PBS Frontline: Living Old
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/

Medicare Rights Center Helps with Drug Benefit Appeals
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.

2007 Tax Season is Under Way
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/index.shtml

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.NET/Public/Index.aspx

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
www.aarp.org/money/taxaide and www.aarp.org/applications/VMISLocator/searchTaxAideLocations.action

House and Senate Pass Lifespan Respite Care Act
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.

Guidelines to Create Systemic Support for Family Caregivers
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 www.americanprogress.org/events/2007/07/pdf/newyork.pdf

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.

Helpful Caregiving Resources

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


2. Beth Israel Medical Center Programs

Support Groups for Caregivers and Patients
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.

Medication Adherence Study
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.


3. New Medical Developments

A New Disease Risk Assessment
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.


4. Advance Directives

Sick to Death and Not Going to Take It Anymore!
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.

Differing End-of-Life Choices
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.


5. Frequently Asked Questions (FAQs)

Question: 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?

Answer: 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

Question: 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?

Answer: 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/index.shtml.

Question: 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?

Answer: 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 contact us.