Vol. 8, No. 11
November 16, 2017
For the family it becomes a matter of survival.
— Sue Harris, FCA co-founder
This November marks Family Caregiver Alliance’s 40th anniversary. We are celebrating with a series of blog posts on FCA’s history, stories from family caregivers, and the new directions we are pursuing.

FCA was founded by Anne Bashkiroff and Sue Harris, family caregivers who struggled to provide care for their husbands during a time when there was little understanding, and no support for those caring for someone with debilitating cognitive impairments like dementia. Both women were determined that others would not have to face the same ordeal alone, and with the help of supporters, created FCA, the first community-based nonprofit organization in the country devoted to the needs of long-term family caregivers.
Forty years later, FCA has continued to build upon Anne and Sue’s ambitious vision, extending our services to include research and advocacy, working with national partnerships for caregivers, and harnessing technology to better serve caregivers via our online tool, FCA CareJourney, and our website, webinars, online newsletters, and social media.
“Mrs. Bashkiroff, you must realize that society isn t ready for problems such as yours.”
The psychiatrist’s words enraged Anne Bashkiroff. He was only one of the hundreds of people and agencies she had contacted during the nine years she struggled to care for her husband.

With the launch of FCA CareJourney, and later this month FCA Learning Center, the organization makes the leap once again to make services, community, and support available to caregiving families across the country. Join with us as we move in the next decade to ensure that high quality services and supports are available for all.
Kathleen Kelly, Executive Director
Impact of Proposed Tax Overhaul Legislation on Family Caregivers: Call Now !

FCA aims to keep family caregivers informed on current legislation on the state and national level. The current federal tax overhaul will impact health care and the services family caregivers depend on. The following list of key impacts was posted on social media by  Andy Slavitt (former acting director of Medicare, Medicaid, and the ACA during the Obama Administration).

Please call your Senators today at  (202) 224-3121 and let them know that you oppose the #SneakyRepeal and tax cuts that increase the deficit and eliminate health coverage for 13 million.
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.

Margaret Mead
November Is National Family Caregiver Month

National Family Caregiver Month is a time for all Americans to thank and honor the amazing work family caregivers do. Caregivers are wives and husbands, partners, children, relatives, friends, and neighbors, providing long-term care for people living with debilitating and life-altering physical and cognitive impairments. FCA joins Americans across the country in recognizing the difficult but essential work caregivers do everyday.
Open Enrollment for Affordable Care Act (ACA) Health Insurance Plans

November is the start of open enrollment for Affordable Care Act (ACA) health insurance plans. During open enrollment, individuals can enroll in a health insurance plan or make changes to an existing ACA plan. This year's ACA open enrollment period has been shortened. For most states, open enrollment ends December 15th, but nine states offer extended open enrollment. If you get health insurance through the ACA marketplace, the Kaiser Family Foundation has developed a new Health Insurance Marketplace Calculator to determine if your individual mandate penalty is lower/higher than your ACA premium.

*Important note — Individuals obtaining coverage on healthcare.gov*

Healthcare.gov will not be accessible on Sundays (12 a.m. to 12 p.m. Eastern Time) except Sunday, December 10. You will not be able to enroll in a healthcare.gov plan during these times.
Rosalinde Gilbert Innovations in Alzheimer’s Disease Caregiving Legacy Awards Reception

Be sure to look for an FCA announcement of the 2017 winners in late December.

The Gilbert Caregiving Legacy Awards are celebrating 10 years of honoring outstanding, innovative programs that support Alzheimers disease caregivers. The 2017 winners will be recognized at a reception during the 2018 Aging in America (AiA18) conference on Tuesday, March 27 in San Francisco. Local residents and conference attendees are invited to join FCA and the award winners for the free reception, during which each organization will present their program and formally receive their $20,000 award.

The American Society on Aging’s Aging in America Conference will held in San Francisco, March 26 to 29. For more information and to register, please visit the conference website.
Your Caregiving Experience Is Important! Would You Like to Share Your Story Through the Media?

FCA often receives requests from the news media and journalists seeking family caregivers willing to be interviewed about about their caregiving experience. Would you be willing to share your story, as well as talk about the help you received from Family Caregiver Alliance? If so, please complete the   online form   to be added to the list of FCA’s caregiver media ambassadors. FCA thanks you in advance for considering this request. 
Pathways to Effective Communication for Healthcare Providers and Caregivers

Caregivers are being increasingly relied upon to provide long-term care and skilled medical tasks that would normally be performed by trained technicians or registered nurses. In addition to providing hands-on day-to-day long-term care, caregivers must also coordinate (“quarterback”) care and advocate for and represent their loved ones at medical appointments, emergency room visits, and rehab facilities.

This FCA fact sheet gives an overview of some of the questions to ask, and other considerations when interacting with doctors and medical professionals. These include how to prepare for a medical appointment, what to do when a loved one is in the emergency room, and legal considerations.
Medicare Hospital Outpatient and Observation Status Toolkit

The difference between being an “admitted inpatient,” and an “outpatient under observation” cannot be determined by the medical care being administered. A patient who is undergoing hospital care for days may still be considered an outpatient under observation. The difference can have major financial repercussions for those receiving care or treatment and include higher costs and less coverage.

To help clear up this confusion, and to help you advocate for yourself or a loved one, the Center for Medicare Advocacy in partnership with the John A. Hartford Foundation has provided a easy-to-understand toolkit for patients and their caregivers. This toolkit includes a FAQ and handy infographic.
Replacement Medicare Card Scams

By April 2019, all Medicare recipients will automatically receive new  Medicare cards by mail (new design pictured left). In an effort to combat identity theft, these cards will no longer include the recipient’s social security number. Unfortunately, scammers are now targeting Medicare recipients, asking for payment or sensitive personal information like social security numbers in order to receive their replacement card. The FTC has written an informative  blog post on what to expect with the new cards, and how to avoid these scams.
What Tom Petty s Choices Can Teach You About End-Of-Life Care

Last month, Tom Petty died from complications arising from cardiac arrest. Before he was incapacitated, Mr. Petty made plans for end-of-life care. With a do-not-resuscitate order on file with his doctor, his family honored his wishes and removed him from life support. Using Mr. Petty’s example, CNBC.com’s Lorie Konish explains some of the financial and legal reasons why having an end-of-life plan in place before a disabling medical emergency is important for you and your family.

Ten Ways to Cope When an Aging Parent Moves In

When a parent is unable to live independently at home, many adult children opt to have their parent move in with them. This arrangement may offer many advantages over other housing options, but should not be undertaken lightly. Gina Roberts-Grey, writing for Next Avenue, outlines ten potential sources of conflict and possible solutions that may arise when a parent moves into their child’s home.

FCAs five fact sheets on Residential Care Options are free to view, download and print.
There Must Be a Better Way Than This!  
(A Free One Day Class for Dementia Caregivers)

In this FCA class, you’ll learn tips and strategies for understanding and communicating with someone affected by dementia. You’ll also learn how to handle difficult behaviors, how dementia impacts a person’s ability to understand and communicate, and how to feel more confident in your caregiving role.

Pre-registration is required and group size is limited. This class is specifically for family caregivers, not providers.  

When: Friday, February 16 , 10 a.m. to 1 p.m.  
4340 Redwood Highway, Suite F138, San Rafael 94903 
Registration:  FCA Family Consultant Amanda Hartrey,  ahartrey@caregiver.org , (415) 434-3388 x 334
Enroll in the SHARE Program

FCA is seeking San Francisco Bay Area family caregivers to enroll in the SHARE program. Over the course of five face-to-face home visits, SHARE will help you get the most out of today while planning for tomorrow. The goals of SHARE include learning effective communication skills, reducing stress, promoting health, and learning about long-term care management. The SHARE program is offered at no charge.

SHARE is specifically for caregivers of adults (close family or partner/spouse), with a confirmed diagnosis of a chronic health condition, 60 or older, living at home, and with intact cognitive abilities. Eligible conditions for SHARE include, but are not limited to: heart disease, diabetes, COPD, arthritis, kidney disease, stroke, or HIV-AIDS. Care receivers with a neurocognitive disorder, a mental health condition, traumatic brain injury, or are in the terminal phrase of their condition, are unfortunately not eligible.

Please contact FCA, (415) 434-3388, for more information.
Advance Care Planning Workshop

Advance care planning is a useful hedge against the uncertainties of the future. It can give an aspect of control over the future as well as provide a sense of peace of mind to caregivers and families. Please join Mission Hospice for this special advance care planning workshop for family and friends.

Please register to attend this workshop.

When: Wednesday, December 6, 1 p.m. to 3:30 p.m.
800 Middle Avenue, Menlo Park 94025
Cost: No charge
Registration: Little House, msavage@penvol.org, (650) 272-5045
Window Into Mindful Caregiving

Window Into Mindful Caregiving is a special one-day workshop by Zen Hospice Project. This workshop will engage participants in a conversation about death and dying, explain the importance of self-care, and and introduce Zen Hospice Project’s unique approach to compassionate end-of-life care.

Space is limited. The workshop will also be offered online on December 12, 6:30 to 8 p.m. (PT). Online registration is open to 40 participants. To register for the online session, click here .

When: Wednesday, December 6, 6:30 p.m.   to 8 p.m.
273 Page Street, San Francisco 94102
Cost: No charge
Registration: Click here
Movie Moments at the Vogue

Movie Moments at the Vogue is a one-of-a-kind film experience presented by the Vogue Theater in partnership with the Alzheimer’s Association. Movie Moments at the Vogue is designed specifically for people with dementia and their caregivers. Short, iconic film clips will be shown, interspersed with audience discussion and moderator guided reminiscence.

This event is free and includes complementary popcorn and refreshments. Please RSVP to attend.

When: Thursday, December 7, 10 a.m. to 12 noon
3290 Sacramento Street, San Francisco 94115
Cost: No charge
Registration: Rachel Main, rmain@alz.org, (415) 463-8505
FCA’s Facebook page offers articles and posts of interest for family caregivers. Please follow our page at www.facebook.com/FamilyCaregiverAlliance.
Do You Get Caregiving Policy Digest?

Published monthly by FCA, this e-newsletter focuses on legislation and policy, caregiving research, and media coverage of caregiving issues. The recent, issue is available   here. Visit the  archive  for past issues and click  here   to subscribe.
National Research Summit on Care, Services, and Supports for Persons With Dementia and Their Caregivers

The National Research Summit on Care, Services, and Supports for Persons With Dementia and Their Caregivers was a two day meeting sponsored by the U.S. Department of Health and Human Services and private organizations. The summit was convened to share knowledge among researchers, providers, and policymakers and to identify areas needing further study and data. The goal of the summit was to facilitate the conceptualization, testing, implementation, scaling, and execution of programs and services designed to support those with dementia and their caregivers.

The entire summit can be viewed online: day one and day two.
We would like to 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.

FCA has led the way in supporting family caregivers for 40 years.
Your donation makes all the difference!
Follow FCA on Social Media!
235 Montgomery Street | Suite 950 | San Francisco, CA 94104
Phone: (800) 445-8106 | Email: info@caregiver.org
Visit Family Caregiver Alliance’s  NEW   online solution for secure information, support, and resources for family caregivers of adults with chronic physical or cognitive conditions.    FCA CareJourney  provides a personalized dashboard loa   ded with inform   ation that matches your unique caregiving needs.
Visit  caregiver.org   today and  JOIN!
Visit FCA’s website
Family Care Navigator
Caregiver tool for
state-by-state resources
Family Caregiver Alliance’s fee-for-service care management currently serving the San Francisco Bay Area. Click here for further information.
Connections Credits
Calvin Hu
Francesca Pera

Kathleen Kelly
Calvin Hu
Lana Sheridan
Michelle Venegas
Leah Eskenazi

Executive Director
Kathleen Kelly
FCA Board of Directors

Jacquelyn Kung

Dan Lieberman

Wyatt Ritchie

Kathleen Raffel

Athan Bezaitis
Catherine Lelong
Rajiv Mehta
Chris Park
Scott Peifer
Celine Takatsuno