E-mail to a Friend

Fall 2011 Volume 2, Number 1  www.caregiver.org (800) 445-8106 Table of Contents    Letter from the Director Presentations & Workshops    Caregiving Information  Assistive Technology Survey: Caregiver input needed Caregiving with Siblings Long Distance Caregiving Gallup Survey: Accessible Technology Caregiver Health Tips   Research Registry  Pulmonary Hypertension Study   Speaker Series  Independent Living & Brain Injury   FCA Staffer Highlighted Lana Sheridan   Promote FCA! Rate us on Great Non-Profits.org   Donor Thank Yous   Quick Links   Family Caregiver Alliance Home FCA Fact Sheets & Publications Caregiving Policy Digest California Caregiver Resources Centers   Link2Care Caregiver Tool: State-by-State Help    Select a Newsletter "Like" FCA on Facebook to get caregiving updates   Newsletter Credits   Editors Michelle Venegas Hilary Toyryla  Production & Graphics Andrea Orvik   Contributors Sean Coffey Kathleen Kelly Lana Sheridan Tyler Stanley Hilary Toyryla Michelle Venegas Executive Director Kathleen A. Kelly Board of Directors    Directors Herman S. Brown Claude Everhart Moira Fordyce Michael Malewicz F. Burns Vick Sue Wong   FROM OUR EXECUTIVE DIRECTOR Why We Need Community Living Assistance Services and Supports (CLASS) by Kathleen Kelly  (http://blog.caregiver.org)     Staff from our organization, Family Caregiver Alliance, speak with family caregivers every day through our national information and referral hotline. These caregivers are often facing enormous financial difficulties. For example, adult children who are caring for parents with Alzheimer's, especially in its advanced stages, find that keeping a job and being a caregiver is nearly impossible. The same goes for caregivers of loved ones with multiple conditions, those who are undergoing treatment like chemotherapy or those who simply need assistance with multiple daily activities like eating, dressing and showering. . . [Read more]     PRESENTATIONS & WORKSHOPS (For information on or to register for any event below, call Hilary Toyryla, Education Coordinator at 800-445-8106, ext. 317) "How to Talk to Your Doctor" - (9/20: Hayward) What's the most difficult part of caring for a loved one? The most frequent answer: "Getting the doctor to pay attention to me.". . .  [details]  "When Everybody Talks and Nobody Listens: Siblings Working Together" - (9/22: Castro Valley) What happens to families when they share the caregiver role? What works and what doesn't . . .  [details]    Caregiver College  (10/1: South San Francisco; 10/29: Half Moon Bay; 1/14/12: Walnut Creek; 3/10/12: San Rafael) If you help care for someone frail, disabled, with a chronic illness or cognitive impairment, then it's back to school for you! Our popular day-long program for learning and sharing is free to all . . .  [details]  "Decisions, Directions and Reflections: Issues Regarding Placement" - (12/7: San Leandro) When is it time for your loved one to go to a facility vs. receiving care at home? Discover the options available to you and how to deal with feelings of guilt . . . [details]            back to top^    CAREGIVING INFORMATION    Survey of Family Caregivers on Technology and Changes to the Home The Family Caregiver Alliance (FCA) is sponsoring a brief survey on how to help more family caregivers receive assistive technology and home modification services. There is great interest in family caregiver experiences, thoughts, and attitudes as they relate to technologies and changes to the home that might help the caregiver or the respective family member. Organizations should send the Survey of Family Caregivers on Technology and Changes to the Home to family caregivers that they are associated with.   Your responses will let FCA and provider organizations know what family caregivers want and need most so we can customize our programs and services to end-users. If you have questions, you can email adrctae@lewin.com with questions, or you can . . . [Take the survey now]     Caregiving with Your Siblings Providing care for your aging parents can be complicated. And, depending upon your family dynamics, taking on the challenge together with your siblings can either make the task ten times easier or that much more stressful. Many difficulties arise due to the resurfacing of old childhood roles or simply how each sibling deals differently with the impending loss of a parent that used to care for him or her. . . . [Read the fact sheet]      SIBLINGS . . .    Sibling rivalry usually stems from long-term issues that can take years to alter. We can help ourselves by choosing our battles. We don't have to automatically respond to every comment, because not everything is important enough to argue about.   If we do respond negatively, we should step back and think about why we are angry. A calm, measured response gives us more control, and may help to diffuse the situation.   I am comfortable with my siblings.   Excerpted from "The Gift of Caregiving", Daily inspirations, Affirmations and Tips. Author Rebecca Sharp Colmer, EKLEKTIKA Press, Inc., Chelsea, MI 48118, Copyright 2011, ISBN: 978-0-9823250-2-5   back to top^           Long Distance Caregiving Caring for a loved one when you live in another town or state can present many obstacles, making the responsibility seem next to impossible. Following are five different aspects to caregiving each with various tips that may help make your role more manageable.    Make regularly scheduled visits. Depending on the level of independence, those visits could be occasional or frequent. Use your visits to assess the person's needs. If you cannot visit often, consider having someone who lives near the person take responsibility for care. . . . [Read more]      SUPPORT . . .    Caregivers must have a system of support. We require all kinds of support: equipment support, skills support, support in family situations, support in providing thorough care.   I am open to more help.   Excerpted from "The Gift of Caregiving", Daily inspirations, Affirmations and Tips. Author Rebecca Sharp Colmer, EKLEKTIKA Press, Inc., Chelsea, MI 48118, Copyright 2011, ISBN: 978-0-9823250-2-5     Gallup: 72% Of Employed Caregivers Are Caring For A Parent Gallup recently released data from surveys of employed caregivers, with three in-depth articles. The first article focuses on demographics of caregivers and a trend that the less income and education an American has, the more likely they are to be a caregiver. Twenty-one percent of Americans who make $36,000 or less report that they are caregivers, while only 15% of high income ($90,000+) employees report serving as caregivers. The authors speculate that . . . [Read more]   ("Read more" link takes you to more on each article and direct links to the Gallup surveys themselves.)       Center for Accessible Technology Helps Make Communication Easy, Affordable  Augmentative and alternative communication (AAC) devices have been around a long time to help people communicate effectively. Traditionally, this type of assistive technology cost thousands of dollars and required sophisticated knowledge to set up and use. However, with the introduction of the iPad®, its ready availability and the ease with which free or inexpensive applications can be developed and loaded onto them, AAC is now potentially available to a much wider audience . . .   [Read more]     Caregiver Tips to Help You Find Balance in Your Life Caregivers spend so much of their time attending to the needs of others that they sometimes forget to take proper care of themselves. We're including a quick and helpful checklist of sorts to help you stay healthy, prepared and confident in your ability to continue caring well for others . . . [Go to list]     List of tips was adapted from "Tips for Successful Aging" published by the Public Information Committee of the Marin County Commission on Aging, which appeared originally in Great Age, their quarterly newsletter.    back to top^   RESEARCH REGISTRY Help doctors research pulmonary hypertension treatment   If you or a loved one suffer with pulmonary arterial hypertension (PAH) or chronic thromboembolic pulmonary hypertension (CTEPH) and the symptoms they bring - shortness of breath, fatigue, chest pain and more - consider participating in this research study of an investigational medication. By participating, you may help researchers learn more about this disease and evaluate the effectiveness and safety of an investigational medication. What's more, you may receive study-related care, monitoring and medication at no-cost to you. Take the online study questionnaire now to see if you may qualify. Go to www.phclinicalstudy.com today for more information. back to top^     Speaker Series - San Francisco Independent Living and Brain Injury A new speaker series will be presented by The Janet Pomeroy Center San Francisco Traumatic Brain Injury NETwork, in September and runs through the month. The first presentation on September 2, 2011 spotlights Dr. Todd Schirmer speaking on "Types of brain injuries and associated concerns." To view a full list of the series' topics and speakers . . . [click here]   Presentations are FREE and start promptly at 9am, ending at 12pm. Accommodations available upon request; space is limited. Pre-registration required. Email Rowena Fontanos at The Janet Pomeroy Center.   back to top^   STAFF MEMBER HIGHLIGHTED   Lana Sheridan,   Senior Administrative Assistant   Lana Sheridan's vital position as Senior Administrative Assistant at Family Caregiver Alliance is one she fills to perfection. Capping 11 years at FCA this coming October, she fulfills a myriad of responsibilities to include, among many, coordination of all aspects of FCA's annual fund raising appeal from document preparation to entries in the electronic database, maintaining multiple agency mailing lists through the online marketing tool, Constant Contact, besides being the "go to" person to all staff agency-wide. Following is a comment from a staff member with whom Lana works: "Lana is a gift to FCA. In addition to sharing her administrative skills, she is incredibly flexible, patient and kind. She doesn't think twice about lending a hand to help staff and clients alike. The staff recently held an impromptu "we love you Lana" day to thank her for all she gives of herself everyday." "Lana is a Saint. Her patience is legendary. No matter how much she has to do she will stop and help someone. FCA would be in big trouble without her." back to top^   HELP PROMOTE FCA!  Help Us Reach More Caregivers: Provide Your Positive Review of FCA on GREATNonprofits.org   "[FCA is] A capable single point source for information to support the caregiver. A valuable service, staffed by knowledgeable, caring individuals." - Alexander N    Have you had a positive experience with Family Caregiver Alliance? Whether it's from a personal exchange with a Family Consultant, reading our helpful fact sheets to assist you with a difficult aspect of caregiving, or using the tools on our award-winning web site, we want to hear from you! Just visit our Great Nonprofits page, and click the "Write a Review" button just above our logo. A big thank you goes out to our first reviewer (above) for providing a 5-star rating!   back to top^   GIFTS FROM THE HEART A quarterly thank you to our donors and supporters . . . In every edition of Connections, we take a moment to extend a warm thank you to the many generous supporters who make the work we do possible through thoughtful donations to Family Caregiver Alliance . . . [Read more]       For over 30 years, Family Caregiver Alliance has offered programs to support and sustain the important work of families and friends caring for loved ones with chronic, disabling health conditions. FCA offers programs at national, state and local levels. The National Center on Caregiving was established at FCA in 2001 to advance the development of high-quality, cost-effective services and policies nationwide. A wealth of caregiving advice, resource listings, newsletters, fact sheets, research reports, policy updates and discussion groups are available free on the FCA website. Visit www.caregiver.org or call (800) 445-8106 for more information.   2011 Family Caregiver Alliance. All Rights Reserved. No portion of this newsletter may be reproduced without the express permission of Family Caregiver Alliance.       180 Montgomery Street, Ste. 900, San Francisco, CA 94104 www.caregiver.org | 415.434.3388

A Word from our Executive Director, Kathleen Kelly

Why We Need Community Living Assistance Services and Supports (CLASS)

Staff from our organization, Family Caregiver Alliance, speak with family caregivers every day through our national information and referral hotline. These caregivers are often facing enormous financial difficulties. For example, adult children who are caring for parents with Alzheimer's, especially in its advanced stages, find that keeping a job and being a caregiver is nearly impossible. The same goes for caregivers of loved ones with multiple conditions, those who are undergoing treatment like chemotherapy or those who simply need assistance with multiple daily activities like eating, dressing and showering.

In addition to reduced income, many caregivers also take on more expenses, including co-pays, buying medical equipment or paying for supportive services like respite or direct care workers. Professor Richard Kaplan captured it best in his analysis of CLASS when he said that while family caregivers provide care "without charge," this is not the same as "without cost."

At a Congressional hearing held in March on the topic of CLASS, a witness shared the story of his co-worker to demonstrate how the current system of long-term supports (provided through Medicaid) can sometimes fall flat because of increased demand and tightened state budgets. One of his co-workers received a letter from the state of New Jersey addressed to her mom. The letter informed her that she had moved to #176 on the waiting list for a Medicaid Home and Community-Based Service. Unfortunately, she received the letter a week after her mom passed away. This woman's situation is not an isolated incident. The Kaiser Commission on Medicaid and the Uninsured noted in a February report that there were 107,653 people on waiting lists for Medicaid Aged and Aged/Disabled Waivers in 2009, with an average wait time of six months.

Another witness, Anthony J. "Tony" Young, discussed why the CLASS program would be helpful for him and his family, as well as other families who find themselves unexpectedly in need of long-term care. At the age of 18 while body surfing, his C-4 vertebra was crunched, and in his own words, he went from total independence to near total dependence. After rehabilitation, his family served as his caregivers, and he was eventually able to receive some supportive services as well. He is now employed, and he and his wife currently spend $17,000 annually to pay for 18 hours of direct care assistance each week. These 18 hours of assistance don't provide for all of his needs, so his wife covers the rest.

While the Administration on Aging (AOA) is still in the program design phase for CLASS, there are some general parameters from the Affordable Care Act legislation to guide them. If a person has paid into the program for five years and then becomes unable to perform "Activities of Daily Living" (ADLs), he or she would be eligible to receive a daily cash benefit of at least $50. Perhaps most importantly, the beneficiary would have the ability to decide how this money would be spent, including compensating a family member or friend for providing care. One of the most frequently asked questions by caregivers who call our organization is whether they can be compensated for caring for a loved one. Outside of Medicaid Waivers in some states, the answer right now is "no," but could become "yes" with CLASS.

The "consumer direction" component of CLASS has been well received in Medicaid Waiver programs and could also allow more people to remain in their homes. This option is not only strongly preferred by Americans, but is also far more cost-efficient than institutional care. As an example, services provided through South Carolina's Medicaid Waiver program, Community Choices, cost $32 a day, as compared to $127 per day for a nursing home.

For CLASS to succeed, it will need to be marketed broadly (Geico's strategy of "saturation advertising" would be a good model) to attract a broad range of participants. AOA will face a difficult task, because Americans consistently report in surveys that they don't think they'll need long-term care (actually, studies show that more than two-thirds will at some point) and many also mistakenly believe that Medicare will pay for long-term care. Through this marketing campaign, Americans will need to face the fact that we will likely need long-term care at some point in our lives, it isn't cheap and even with programs like Medicaid or CLASS, we need to start talking about this issue with our loved ones now.

CLASS has the potential to fundamentally improve our country's long-term care infrastructure while also helping to facilitate planning and conversations that we should be having about long-term care, especially with 10,000 baby boomers turning 65 every day for the next 19 years. While not a silver bullet, CLASS is a giant leap forward for our country's long-term care system, supporting family caregivers and addressing some of the financial challenges brought on by caregiving.

If you are interested in learning more about the CLASS program, FCA has gathered research, reports, and media coverage on our website.

This replication of the FCA blog posting was guest-written by Sean Coffey & Tyler Stanley, J.D., Policy Specialists at the National Center on Caregiving at Family Caregiver Alliance for the Disability.blog, part of Disablity.gov that is managed by the U.S. Department of Labor's Office of Disability Employment Policy (ODEP), in partnership with 21 other federal agencies.)

Long Distance Caregiving

Caring for a loved one when you live in another town or state can be challenging.  Here are tips that may help make your task a little easier.

Make regularly scheduled visits.

• Depending on the level of independence, those visits could be occasional or frequent. 
• Use your visits to assess the person's needs.
• If you cannot visit often, consider having someone who lives near the person take responsibility for care.

When you visit . . .

• Assess the person's ability to care for him or herself. Check in about:
• Meals and self care
• Shopping, errands and household chores
• Medications and doctor's appointments
• Money management and paying bills
• Driving and transportation
• Social activities
• Mental or emotional health

Arrange for help when needed.

• Ask the person what kind of care he or she needs or will accept. Be respectful of the person's lifestyle and independence.
• Ask health care providers, neighbors and friends what type of care they think the person needs too. They are closer and may see things that you won't notice during short visits.
• Help the person arrange care arrange care.  The person may not be able to do it alone.

Plan regular check in times.

• Regular phone calls can be a good way to check in. If the person has a hearing problem (and may not hear the phone ring), plan a specific time to call so he or she will know to answer. Or arrange for special phone equipment for the hearing impaired.
• When you talk, listen for an changes in the way he or she speaks or engages with you.
• For some people, email or letters are also good ways to check in.

Enlist the support of local friends.

• Consider asking a friend, relative or neighbor to look in on the person daily or weekly.
• Find people who live near your relative (friends, neighbors or local relatives) that can be called in an emergency. Knowing that someone is nearby can help ease your concern.
• Consider paying the friend or relative for his or her time.

Reprinted by permission of JOURNEYWORKS PUBLISHING, P.O. Box 8466, Santa Cruz, CA  95061

Gallup: 72% Of Employed Caregivers Are Caring For A Parent

Gallup recently released data from surveys of employed caregivers, with three in-depth articles. The first article focuses on demographics of caregivers and a trend that the less income and education an American has, the more likely they are to be a caregiver. Twenty-one percent of Americans who make $36,000 or less report that they are caregivers, while only 15% of high income ($90,000+) employees report serving as caregivers. The authors speculate that higher-income Americans may be able to pay for professional care, or potentially that higher income/educated Americans tend to be younger.   

The second article highlights data on caregiving and employment and finds that while 71% of caregivers report that their employer is aware of their caregiving role, only about a quarter of employees have access to employer programs that would support them, for example support groups, ask-a-nurse services, financial/legal advisors, and assisted living counselors.
 
The third article provides data on the amount of time and types of caregiving activities that people perform.  In a survey of 2,805 employed caregivers, 72% are caring for a parent and 55% reported providing care for three years or more. Caregivers assisted with general day-to-day tasks on an average of 13 days a month, while providing personal assistance with activities like toileting, dressing, eating and bathing on an average of six days a month. The majority of caregivers (64%) report that the care recipient does not live with them, however, of those who don't live with the care recipient, 66% live within ten miles of the care recipient. Caregivers report that on average, they spend five hours a day providing companionship or supervising their loved ones and thirteen hours a month on navigating health care, coordinating disease visits, and managing financial manners for their loved one. For more information, visit:

Gallup Part One: More Than One in Six American Workers Also Act as Caregivers 
Gallup Part Two: Caregiving Costs U.S. Economy $25.2 Billion in Lost Productivity 
Gallup Part Three: Most Caregivers Look After Elderly Parent; Invest a Lot of Time

Center for Accessible Technology Helps Make Communication Easy, Affordable

Despite all the ways that people use electronics to communicate in the 21st century, the inability to communicate verbally can still be a major barrier. Some people cannot speak because of a physical impairment; others have aphasia, cognitive disabilities, or other conditions that affect their ability to use language.

Augmentative and alternative communication (AAC) devices have been around a long time to help people communicate effectively. Traditionally, these have cost thousands of dollars and required sophisticated knowledge to set up and use. However, with the ready availability of iPads^®, and ease with which free or inexpensive applications can be developed and loaded onto them, AAC is now potentially available to a much wider audience.

The Center for Accessible Technology (CforAT) now has a lending library of iPads for use by Bay Area residents who have speech disabilities. This new project, funded by the California Communications Access Foundation, enables us to provide two-week loans of iPads loaded with various AAC programs. Staff members will sit down with each loan recipient to discuss their concerns and demonstrate programs likely to be particularly responsive to their needs. Clinicians are also welcome to contact CforAT about borrowing an iPad to try out with one or more clients.

In addition, CforAT will be doing free trainings on the use of the iPad as a communications device. Links to register for upcoming trainings or browse the archives are available at http://atcoalition.org/trainings.

For more information, please visit the Center for Accessible Technology website or email them at info@cforat.org or 510-841-3224.

Family Caregiver Tips: To Help you Find Balance In Your Life

• Stay True to Yourself (See our "Taking Care of You" fact sheet)
• Keep Your Friendships Thriving
• Keep Your Body Moving
• Keep the Brain Active (some of the tips under the Coping with MCI section of our fact sheet "Mild Cognitive Impairment" apply here also)
• Learn About Alternate Resources to Aide in Caregiving (See our fact sheet for care providers about Making Everyday Care Choices)
• Consolidate Important Papers (See our Legal Issues section of fact sheets)
• Complete an Advanced Health Care Directive (AHCD) (See FCA fact sheet on California AHCD)
• Give Copies of Your AHCD to Family Members & Doctors
• Eat Well
• Plan for a Crisis
• Communicate With and Cherish Family (See new FCA fact sheet on Caregiving with Sibings)
• Accept Help Graciously When Needed
• Realize that Change Happens— Don't Fight It!

This list adapted from "Tips for Successful Aging" published by the Public Information Committee of the Marin County Commission on Aging, which appeared originally in Great Age, their quarterly newsletter.

Independent Living and Brain Injury