Section 3. Taking Action

In this section ...

• 3.1 Creating a Caregiver Corps
• 3.2 Encouraging Family Discussions
• 3.3 Addressing "Creeping" Caregiving
• 3.4 Listening to Children's Concerns About Caregiving
• 3.5 Creating a Family Caregivers' Resource Zone
• 3.6 Engaging Local Legislators
• 3.7 Developing a Community Resource Guide

3.1 Creating a Caregiver Corps

Why:
Caregivers sometimes are unable to leave their loved ones alone to perform such simple tasks as going shopping, attending religious services, or running other errands. An afternoon of respite once a week can make an enormous difference.

Goals:

• To provide a period of rest for your community family caregivers.
• Start a community service program that will involve young and old and continue after the series premieres
• Promote viewership of "And Thou Shalt Honor…"

Participants:

• College students, retired persons, others with available time

When:

• Set up public informational meeting about the respite service (advertise this meeting)
• Launch initiative before the series begins and use the series to promote it.

How:

• Compose an agenda for the informational meeting, including time for general contact information to be collected, explanation of family caregivers, and an explanation of the series.
• Invite community leaders such as educators, health care professionals and the clergy to an informational meeting. Provide them with date, time, location, purpose, agenda, your name and phone number.
• Show a clip reel of the series and pass out informational brochures.
• Discuss ideas such as how to organize, who is available, what people to target, possibility of communicating the existence of the program, and if any operations already has something similar already set up and running.
• Discussion should also include a date to launch initiative, media components that will help launch it, and a press release announcing the initiative should be drafted.

Media:

• Prepare Press Release to announce launch of the community-wide respite care initiative.
• Talk with local media and mention consumer interest stories to promote on local radio and in local newspapers.
• Prepare another press release after the initiative is underway.

Variations:

• Involve the clergy in developing a Faith-based respite service
• Encourage employers to create a volunteer respite service for their co-workers
• Enlist high school teachers to encourage students to become part of the Caregiver Corps to meet their community-service requirement.

Resources:
The web sites and publications listed below complement the above actions. Turn to Section 5.1 for additional resources and visit www.thoushalthonor.org for an extensive list of resources.

• Administration on Aging locates area Agencies on Aging, addresses issue of respite and other caregiving topics.
• CareGivers-USA.org is a nationwide non-commercial directory of community-based caregiver support services -- intended to help individuals who are providing care for a family member or friend. All services are free and completely confidential.
• ElderCare Locator provides information on local services and resources for seniors and caregivers.
• AARP has great resources and information. There is a special section on the caregiver corps.
• Share the Care: How to Organize a Group to Care for Someone who is Seriously Ill. Cappy Copposella and Sheila Warnock. New York: Simon & Schuster, 1995.
• Complete Idiot's Guide to Meeting and Event Planning. Robin E. Craven and Lynn Johnson Golabowski. Indianapolis: Alphabooks, 2001.
• Making Community Meetings Work: Ten Tips for Successful Public Events Debra Stein. Washington, D.C.: Urban Land Institute, 1996.

Don't forget to get in touch with local high school and college community service centers to help with community respite efforts.

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3.2 Encouraging Family Discussions

Why: Open lines of communication within your family make all the difference when discussing the sensitive issues surrounding caregiving.

Goals:

• Raise awareness among parents and their children and the possibilities of becoming a caregiver.
• Raise awareness between spouses on the possibility of becoming caregivers for one another.
• Promote viewership of "And Thou Shalt Honor…"

Participants:

• Hospitals, doctors, super markets, churches, temples, synogogues, mosques, employers, media
• Mothers, fathers, brothers, sisters, grandparents, and guardians.

When:

• Weekend after the series premiers.

How:

• Gather as a family to watch the series and give each family member a copy of the Discussion Guide.
• After each episode discuss your thoughts on the series.
• Ask your children what they think about family caregiving and what they think it is.
• Discuss with your family their perceptions of caregiving.
• If you are a caregiver, explain who for and what you help them do on a daily basis.
• Depending on the children's age, explain that some day they may become caregivers to their parents.
• Let the children ask any questions they might have.
• When having the spouse-to-spouse discussion, listen to what your spouse would expect from you.
• Discuss different future family caregiving possibilities with your children or spouse.

Variations:

• Encourage the clergy to establish a series of small group discussions within their communities.
• Suggest a "Caregiving Brown Bag Luncheon" among employers in the area
• Send a letter and a flier to Doctors and Hospital Discharge Personnel asking them to encourage families to watch the series and discuss their own concerns about caregiving.

Resources:
The web sites and publications listed below complement the above actions. Turn to Section 5.1 for additional resources.

• National Family Caregivers Association - www.nfcacares.org - information about caregiving and listing of publications available to caregving community.
• 7 Habits of Highly Effective Families: Building a Beautiful Family Culture in a Turbulent World (abridged). Stephen R. Covey and Sandra Merrill Covey. New York: Golden Books, 1997.

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3.3 Addressing "Creeping" Caregiving

Why:

• Caregiving becomes a crisis when someone is suddenly thrust into a caregiving situation or doesn't recognize the symptoms of 'creeping' caregiving - the condition of helping out a family member or friend who can't quite make do for himself or herself. If we could raise the level of awareness of the signs of 'creeping' caregiving, caregivers could become aware of the services available to them and perhaps avert a crisis when the 'creeping' caregiving becomes full-time caregiving.

Goals:

• Educate the public on the different stages of caregiving.
• Encourage discussion of the different stages of caregiving.
• Help people to recognize that they are participating in caregiving.
• Promote viewership of "And Thou Shalt Honor…"

Participants:

• Local community members and businesses

When:

• Create posters prior to July 2002.
• Distribute posters in Fall, 2002.
• Incorporate your local media beginning in the summer of 2002 and end after the series airs.
• Raise awareness of resources available to caregivers.

How:

• Create posters and fliers with the question "Are you a Caregiver, taking care of a friend, parent, or other loved one?" and then include a description of the stages of caregiving and information on the series.
• Distribute posters and fliers to churches, workplaces, school, shopping malls, assisted living and nursing homes. Key places to hang posters are in elevators, stairwells, break rooms, and on community bulletin boards.
• Check your community event calendar; look for fairs where you can have a caregivers booth. At the booth you would promote recognition of the signs of 'creeping' caregiving and viewership of the series.
• Ask your local cable station for free promotion. The advertisement would read the same as the poster also including information regarding the series.

Variation:

• Work with your local media to highlight stories of caregivers who began "just checking in" on a family member or friend.
• Organize a panel discussion where caregivers - past, present and future- tell their story of caregiving and how they came to be caregivers.

Resources:

The web sites and publications listed below compliment the above actions. Turn to Section 5.1 for additional resources and visit www.thoushalthonor.org for an extensive list of resources.

• Caregiver.com - An internet resource containing back issues of Today's Caregiver Magazine, information on "Sharing Wisdom Caregivers Conferences" and a discussion forum.
• AARP - This site addresses multiple caregiving issues and includes a section on planning ahead. www.aarp.org/indexes/health.html#caregiving or www.aarp.org/confacts/caregiving/planning.html for planning ahead.
• Aging Parents and Common Sense, A Practical Guide for You and Your Parents. 3d. Ed. AXA Foundation, 2000.
• The Aging Parent Handbook. Virginia Schomp. Mass Market Paperbacks, 1997.
• How to Care for Aging Parents. Virginia Morris. New York: Workman, 1996.

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3.4 Listening to Children's Concerns About Caregiving

Why:

• Children are often affected by the demands of caregiving and yet are not included in family discussions. They need an opportunity to discuss their feelings and thoughts on the matter.

Goals:

• Use art as a vehicle for children to express themselves on the subject of caregiving.
• Engage businesses in displaying the childrens' art.
• Open the door for parents and their children to discuss family caregiving.
• Allow a creative outlet for children to express what they know about caregivers.
• Afford an opportunity for adults to understand the family caregiving experience from a child's perspective.
• Educate children of all ages as to what caregivers are, their role, and responsibilities.
• Promote viewership of "And Thou Shalt Honor…"

Participants:

• Children from early childhood through puberty, teachers, caretakers, guardians, parents, grandparents, churches, schools, and Sunday school classes.
• Local malls or theatres

When:

• Advertise the art display beginning in March 2002.
• Deadline for entries June 2002.
• Display the art in malls and/or theatres in Fall, 2002 (before the series airs).

How:

• Develop a flier that is child-user friendly that includes: what Caregivers are, an explanation of the display, and who to whom to send the artwork.
• Distribute the fliers in schools, libraries, workplaces, and in churches. (You might want to enlist the aid of the art teachers and counselors in the schools.)
• Acquire donations from local stores to be used as gifts for the artists.
• Contact your schools and other public areas such as shopping centers and ask permission to put artwork on display as well as information concerning "Thou Shalt Honor" during late summer and fall, 2002.

Variations:

• Work with your newspaper to "display" the art in a special section along with some information about "And Thou Shalt Honor…"
• Suggest that teachers display the childrens' art and invite parents to come and observe the children discussing it.
• Work with the drama teacher at school to help the kids write and act a play on the subject of caregiving.

Resources:

The web site listed below complements the above actions. Turn to Section 5.1 for additional resources and visit www.thoushalthonor.org for an extensive list of resources.

• National Academy for Teaching and Learning about Aging - www.unt.edu/natla - provides resources for teaching school-aged children about aging.

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3.5 Creating a Family Caregivers' Resource Zone

Why:

• Availability of resources is one of the big issues of caregiving. Where do I go? Who do I ask? Public libraries are frequently the places where people go to do research and get information.

Goals:

• Encourage local libraries to make caregiving resources readily-available.
• Promote caregiving resources available for public use.
• Promote the "And Thou Shalt Honor…" Web site as a resource.
• Promote viewership of "And Thou Shalt Honor…"

Participants:

• Local library staff.
• Local library patrons.
• Your community.

When:

• Make sure you have lists of titles and authors of the resources you would like the library to make available before you approach your local library.
• Contact your local libraries starting May 2002.
• Encourage your library to create a special Caregivers section before the series airs.

How:

• Approach the head librarian at your local library; begin with a short and concise explanation about "And Thou Shalt Honor."
• Encourage the library to have a special caregivers section especially in Fall 2002.
• Offer to provide them with a list caregiving resources (make sure you have the exact titles and authors of the resources you would like them to carry.)
• Give them a demonstration of the "And Thou Shalt Honor…" website and encourage them to keep a computer near the caregivers section and use the series' website as the home page

Variations:

• Hospital libraries could create a caregivers resource display
• Schools, businesses and bookstores could set aside space for caregiver resources

Resources:

The web sites and publications listed below compliment the above actions. Turn to Section 5.1 for additional resources and visit www.thoushalthonor.org for an extensive list of resources.

• National Alliance for Caregiving - www.caregiving.org -The National Alliance for Caregiving is an organization designed to support family caregivers of the elderly and the professionals who serve them. This site includes studies, tips for caregivers, and a searchable caregiving resources clearinghouse.
• CareGuide - www.careguide.com - This web site offers resources for family caregivers. It includes information on how to assess, plan, manage and monitor the best care for their loved ones.
• Circles of Caring: How to Set Up Quality Home Care for Our Elders. Ann Cason. Boston: Shambhala Publications, 2001.

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3.6 Engaging Local Legislators

Why:

• Government provides an enormous resource to caregivers and is also where substantial changes may need to be made in order to address the future needs of caregivers and those receiving care. A town hall meeting is a great way for people to voice their concerns and a marvelous opportunity for the elected representatives to hear them.

Goals:

• Involve local lawmakers in discussing family caregiving issues and needs and concerns with their constituents.
• Raise the profile of caregiving as an important issue within the community.
• Create a forum where information can be exchanged to lead to the development of a resource directory.
• Help caregivers gather strength in numbers
• Promote viewership of "And Thou Shalt Honor…"

Participants:

• City, county and state elected officials.
• State and local Area Agencies on Aging and social service offices.
• Faith community and leaders from other non-profit organizations.
• General Public.
• Media.

When:

• Select a location for the town hall meeting in late June.
• Invite your legislators and other panelists in early-July 2002.
• Send out invitations to key community leaders in mid-July 2002 (ask for an RSVP).
• Call community leaders who haven't responded in mid-August.
• Advertise in newspapers, community bulletins, on marquees and hand out flyers daily for two weeks prior to the event
• Hold the town hall meeting in early September.

How:

• Find a large hall that is free of charge to hold event such as a public television station, school, church, or town hall.
• Plan the format and agenda for the town hall meeting which should include no more than 30 minutes for socializing (mingling with panelists and other attendees) 45 minutes for panelists to speak, 15 minutes to view clips from the up-coming series, "And Thou Shalt Honor…" and a one-hour question and answer period.
• Invite a panel of speakers consisting of the elected officials, service providers (faith community, other non-profit organizations and directors public agencies) and a caregiver. Remember that only 45 minutes is allowed for speakers and no speaker should have less than 5 or more than 10 minutes to speak. That will help determine the size of your panel.
• Select and invite a strong moderator who will be able to keep the event on schedule and also keep the "conversation" flowing. A local television or radio personality may be a good candidate for this slot.
• Send personalized invitations (See Sample A) to the lawmakers, other panelists, the media and other key community leaders who should attend.
• Advertise (See Sample B) the event to the general public; make sure to specify that local lawmakers will be attending and that this is their opportunity to speak to them about caregiving.
• Ask local businesses to donate refreshments for the socializing period.
• Prepare the materials that you want to hand out at the event (fliers, resource directories, etc.).
• Be sure to send out Press Releases (See Sample C) before and after the event to your local media.

Variations:

• Invite legislators, caregiving providers, and the public to watch the series together in a public setting and discuss it afterward.
• Work with your employer to encourage all employees to watch the series at home and then gather with their company leadership, including the human resources department, to talk about the effects of caregiving on the company and its employees.
• Engage your local radio station in having a "virtual" town hall meeting on the air. Work with them to provide the appropriate panelists.

Sample Materials for Town Hall Meeting

Sample A
Invitation to elected officials (adaptable for other officials)

(On your letterhead or the letterhead of the host site)

DATE Dear______:

The fastest growing segment of our population is 85 years old and older. The impact of this simple fact on services provided by the government as well as on the treasury will be monumental. The [name] Coalition for Caregiving, which represents [#] organizations and individuals, will be holding a town hall meeting and panel discussion in conjunction with the upcoming made-for-PBS series on caregiving, "And Thou Shalt Honor…." This town hall meeting will be held on [date and time] at [location]. Our goal is to create an opportunity for lawmakers such as you to hear the concerns of the public about the issues surrounding caregiving and to share your knowledge and opinions with them.

We would like you to participate as a panelist.

Other panelists include [name]from [organization], [name] from [organization] and others. The town hall meeting will be preceded by a thirty-minute socializing period and a 15-minute screening of clips from the upcoming series. Each panelist will have [#] minutes to speak and one hour has been allotted for discussion after the panelists have spoken. [If you know who the moderator is, you could provide that information here.]

As you know, this is an important topic that is rapidly becoming a hot-button issue. We hope that you will be able to spend the evening of [date] with us. We will be contacting your office shortly to confirm your participation. Thank you for your time and we look forward to seeing you at [location] on [date] at [time] o'clock.

If you have any questions, please feel free to contact me at [your phone number and email address].

Sincerely,

[Your name]
{Your position within the coalition]
[Name of coalition]

Sample B

Sample C

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3.7 Developing a Community Resource Guide

(See Section 5 for additional resources)

Why:
Researching what resources and help are available to caregivers is one of the most difficult, time consuming and frustrating experiences that caregivers have. Compiling a list of resources in your community would be invaluable to caregivers in need of help.

Goals:

• Identify and compile a list of local contacts and organizations that deal strictly with caregiving and the issues that surround it such as nursing homes, hospices, hospitals, social services, health insurance or Area Agencies on Aging.
• Distribute the Resource Guide to caregivers in your community.
• Promote viewership of "And Thou Shalt Honor…" and the "And Thou Shalt Honor…" website as a resource for caregivers.

When:

• Begin Spring 2002.
• Have resource guide published and available to public by July 2002.

How:

• Contact local public service agencies to determine the resources available from them. Ask to whom else you should speak. Do the same with hospital discharge agents. Keep following the threads of information. Never leave an office or hang up the phone without getting at least one more source to whom you can speak.
• Go to the "And Thou Shalt Honor…" website to locate additional resources.
• Once information is complied, organize it in a logical fashion.
• Distribute the guides in doctor's offices, nursing and assisted living homes, and in your town hall, grocery stores, etc.
• Advertise the guides on your local cable electronic bulletin board and on the Internet that the guides are available in your town hall.

Variation:

• Ask your newspaper to publish the resource directory as an insert in the Sunday paper.
• "Publish" a resource guide on the internet and ask employers, libraries, hospitals, the media, community bulletin boards and others to link to it.

Resources: The web sites and publications listed below complement the above actions. Turn to Section 5.1 for additional resources and visit www.thoushalthonor.org for an extensive list of resources.

• Administration on Aging - www.aoa.gov - locates area Agencies on Aging, addresses issue of respite and other caregiving topics.
• ElderCare - www.eldercare.gov - provides information on local services and resources for seniors and caregivers.
• "And Thou Shalt Honor…" PBS series web site - www.pbscaregivers.org - offers loads of resources and ideas to help you stay updated on all aspects of the series.

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