SARCOID CONNECTION--Sarcoidosis Carers/Caregivers Resources

~~~ Upcoming Events ~~~
(2007 Dates Not Yet Announced)

National Invisible Chronic Illness Awareness Week, September 11-17, 2006

National Invisible Chronic Illness Awareness Week is a designated time, worldwide, in which people who live with chronic illness, those that love them, and organizations are encouraged to educate the general public, churches, healthcare professionals and government officials about the affects of living with a disease that is not visually apparent.

Carers-1

(Australia) Carers Week 2007, October 14-20, 2007

Carers Week is a national awareness week held during October each year in Australia. The event was established to promote and raise awareness of the valuable role that carers play in our community and to generate discussion about carer issues. Carers Week also provides an opportunity for carers to come together, support one another and share ideas and information.

(United States) National Family Caregivers Month, November 2006

November 2006 is National Family Caregivers Month. It is nationally recognized and "celebrated to draw attention to the many challenges facing family caregivers, advocate for stronger public policy to address family caregiving issues, and raise awareness about community programs that support family caregivers. NFC Month is a time to thank, support, educate, and celebrate more than 50 million family caregivers across the country."

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Carer Organziations
Australia, Canada, United Kingdom, United States

Australia

Carers Association of Australia
Address: PO Box 3717, Weston ACT 2611
Telephone: (612) 6288 4877
Fax: (612) 6288 4893
E-mail: caa@carers.asn.au
Internet address: http://www.carers.asn.au/
Carer Resource Centres: 1-800 242 636 (free call)
Carer Respite Centres: 1-800 059 059 (free call)

The Mission Statement of the Carers Association of Australia is: "To be the peak body, the national voice and focus for carers and carers' issues."

State Resource Centres: Carer Resource Centres operate in each State and Territory to provide information and advice to carers and to act as a centralised contact point to improve carers' ability to gain access to information and advice.

Carers Association of ACT
Address: Minns Place, Weston ACT 2611 // PO Box 3390, Weston ACT 2611
Telephone: (02) 6288 9722
Fax: (02) 6288 6909
E-mail: careact@orac.net.au
Internet address: http://www.users.orac.net.au/~carers

Carers NSW, Inc.
Address: Level 5, 93 York Street, Sydney NSW 2000
Telephone: (02) 9299 1499
Fax: (02) 9299 1022
E-mail: carernsw@zeta.org.au
Internet address: http://www.carernsw.asn.au
Carers Line: 1-800 242 636

Northern Territory Carers Association
Address: Unit 17, Winngate Centre, Sadgroves Road, Winnellie NT 0820 // GPO Box 1861, Darwin NT 0801
Telephone: (08) 8947 3877
Fax: (08) 8947 3888
E-mail: unknown
Internet address: http://www1.octa4.net.au/ntca (link may not be active)

Queensland Council of Carers
Address: 15 Abbott Street, Camp Hill QLD 4152 // PO Box 51, Camp Hill QLD 4152
Telephone: (07) 3843 1401
Fax: (07) 3843 1403
E-mail: qcc@qcc.org.au
Internet address: http://www.qcc.org.au

The Carers Association of South Australia
Address: 93 King William Road, Unley SA 5061 // PO Box 410, Unley SA 5061
Telephone: (08) 8271 6288 // Free call: 1-800 815 549
Fax: (08) 8271 6388
E-mail: info@carers-sa.asn.au
Internet address: http://www.carers-sa.asn.au

The Carers Association of Tasmania
Address: 'Westella', 181 Elizabeth Street, Hobart TAS 7000
Telephone: (03) 6231 5507 // Free call: 1-800 818 776
Fax: (03) 6236 9236
E-mail: catinc@tassie.net.au
Internet address: http://www.tased.edu.au/tasonline/carertas/

The Carers Association of Victoria
Address: Level 5, 130 Lt Collins Street, Melbourne VIC 3000
Telephone: (03) 9650 9966
Fax: (03) 9650 8066
E-mail: (submit form at site)
Internet address: http://www.melbourne.citysearch.com.au/E/V/MELBO/0061/62/10/1.html

The Carers Association of Western Australia
Address: Selby Centre, 2 Selby Street, Shenton Park WA 6008
Telephone: 08 9380 4900 // 08 9444 5922
Fax: (08) 9382 0896
E-mail: none
Internet address: none

Canada

Caregiver Network Inc
Address: Caregiver Network Inc., 561 Avenue Road, Suite 206, Toronto, ON M4V 2J8
Telephone: (416) 323-1090
Fax: (416) 966-2341
E-mail: karenh@caregiver.on.ca
Internet address: http://www.caregiver.on.ca/

Caregivers' Association of Ontario
Address: Head Office: c/o Downsview Services to Seniors Inc., 620 Wilson Ave., Suite 201 North York, Ontario M3K 1Z3
Telephone: (416) 961-3077
Fax: unknown
E-mail: grh-ltd@netcom.ca

A list of caregiver organizations in Ontario can be seen at: http://highlander.cbnet.ns.ca/cao/resources/ontario.html.

United Kingdom

Carers National Association
Head Office Address: 20-25 Glasshouse Yard, London EC1A 4JS
Telephone: 0171 490 8818
Fax: 0171 490 8824
E-mail: unknown
Internet Address: http://www.carersuk.demon.co.uk/
Carers Line: 0345 573369 (open Mon-Fri, 10am-12 and 2-4pm)

United States

National Family Caregivers Association
Address: 10605 Concord St., Suite 501, Kensington, MD 20895-2504
Telephone: 1-800-896-3650 (toll free)
Fax: 301-942-2302
E-mail: info@nfcacares.org
Internet address: http://www.nfcacares.org/

NFCA is the only national, charitable organization dedicated to making life better for all of America's family caregivers.

The Well Spouse Foundation (An Association of Spousal Caregivers)
Address: 30 East 40th Street PH, New York NY 10018 // P. O. Box 801, New York NY 10023
Telephone: (212) 685-8815 // Toll Free: 1-800-838-0879
Fax: (212) 685-8676
E-mail: wellspouse@aol.com
Internet address: http://www.wellspouse.org

The Well Spouse Foundation is a national, not for profit membership organization that gives support to husbands, wives and partners of the chronically ill and/or disabled.

Indiana Association for Home Care, Inc., Family Caregiver's Help Center
Address: 8888 Keystone Crossing, Suite 1000, Indianapolis, IN 46240
Telephone: (317) 844-6630
Fax: (317) 575-8751
E-mail: iahcms@earthlink.net
Internet address: http://www.ind-homecare.org/pages/help_center.html

Family Caregiver Alliance
Address: 690 Market Street, Suite 600, San Francisco, CA 94104.
Telephone: (415) 434-3388 (Toll Free in CA: 1-800-445-8106)
Fax: (415) 434-3508
E-mail: info@caregiver.org
Internet address: http://www.caregiver.org/

You will find an e-mail format support group no this Website at Online Services.

Caregiver Survival Resources
Address: none provided
Telephone: 1-800-958-3375 (access 3:2)
Fax: none provided
E-mail: jim@caregiver911.com (To Jim or Merlene Sherman)
Internet address: http://www.caregiver911.com/

Rosalynn Carter Institute for Human Development
Address: Georgia Southwestern State University, 800 Wheatley Street, Americus GA 31709
Telephone: 912-928-1234
Fax: 912-931-2663
E-mail: rci@canes.gsw.edu
Internet address: http://rci.gsw.edu/

The mission of the Rosalynn Carter Institute is to understand the process of caregiving and discover new ways to benefit both informal (lay/family) and formal (professional) caregivers for persons with chronic physical illnesses, mental illnesses, difficulties associated with the frail elderly, or developmental disabilities.

The National Family Caregiving Foundation, 1-800-930-1357

National Alliance for Caregiving, 1-301-718-8444

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Links to Pages/Sites of Interest

"Care for the Caregiver" from the Caregivers Network Inc.

Empowering Caregivers is a personal Website with chat and E-mail newsletter forums.

"A Guide for Family Caregivers" and "Tips for Family Care-givers"were written by the Indiana Association for Home Care, Inc.

"Train Wrecks with Caregivers" and "Husbands Share About Being a Caregiver" are articles that can be seen on the Rest Ministries, Inc. Website. Rest Ministries is a non-profit Christian organization serving people who live with chronic illness or pain. Rest Ministries may be contacted at P.O. Box 502928, San Diego CA 92150, USA, via telephone at 1-619-237-1698 or toll-free at 1-888-751-REST, and via E-mail at rest@restministries.org.
Caregiver Support at Kate's Place is a personal Webpage about caregiving that is very nicely done.

The Caregiving.com Support Place gives caregivers the opportunity to join a support group, get regular newsletters, and purchase a caregiving handbook.

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Printed Materials -- Books, Periodicals, Carer Support Kits

Books

[Note: September 21, 2003 - The following books are available at Amazon Books except as otherwise noted on each listing. Many are available in used or leftover editions at substantially reduced prices.]

**WEBMASTER'S CHOICE** -- Published by the Visiting Nurses Associations of America, the Caregiver's Handbook is described as follows in an editorial by the Library Journal: "This handbook was written by experienced caregivers for those who are caring for the seriously ill. Volunteers and staff from the Visiting Nurse Associations of America and other volunteer aid societies provide practical tips on patient eating habits, moving the incapacitated, maintaining personal hygiene, adapting the home, dealing with legal and financial matters, and communicating with the patient. Other sections address the emotional needs of both patient and caregiver and provide sources of further information, and the text concludes with a form for recording personal data." Used copies only, starting at $5.00.

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Brandt, Avrene, PhD. Caregiver's Reprieve: A Guide to Emotional Survival When You're Caring for Someone You Love. (The Working Caregiver Series). 1997, $11.95, 128 pages.
A practical discussion of the emotional challenges of caring for an aged or chronically ill loved one. Used copies only, as low as $7.95.

Carter, Rosalynn. Golant, Susan K., Contributor. Helping Yourself Help Others: A Book for Caregivers. Random House, 1996, $14.00, 278 pages.
Having cared at home for her ailing father and grandfather, Rosalynn Carter's involvement has taught her that Americans are in the middle of a caregiving crisis. In this book, Mrs. Carter addresses the social issues that have created this crisis and offers practical solutions to the problems caregivers typically experience, such as isolation, burnout, anger, and helplessness.

Horowitz, Karen E. & Lanes, Douglas M., MD. Witness to Illness: Strategies for Caregiving and Coping. 1992, about $8.00, 277 pages.
This is a book for those of us who must, at some time in our lives, witness the illness of a significant other--a husband, wife, mother, father, sister, brother, or other family member, or friend--someone who is more than a statistic. After witnessing the illness of her husband, and deaths of her mother and grandmother, the author vowed to make the process easier for others. Used copies only, starting at $0.84.

Karr, Katherine L. Taking Time for Me: How Caregivers Can Effectively Deal With Stress. Prometheus Books, 1992, $17.95, 179 pages.
Katherine L. Karr's insightful observations and suggestions - enhanced by compelling personal accounts of real care providers who are struggling with their own needs while tending to the needs of others - demonstrate that caregivers can overcome their personal conflicts and develop innovative ways of renewing their strength without jeopardizing the well-being of those who depend on them.

Klein, Allen. The Courage to Laugh, Humor, Hope, and Healing in the Face of Death and Dying. 1998, $14.95, 215 pages.
Featuring poignant wisdom from children, parents, doctors, and nurses, "The Courage to Laugh" offers a lifesaving tool for those experiencing a serious illness and for the people who care for them.

Lustbader, Wendy. Counting on Kindness, the Dilemmas of Dependency. 1994, $15.95, 206 pages.
About working through emotionally loaded caregiving issues, especially from the perspective of the person receiving care.

McGonigle, Chris, PhD. Surviving Your Spouse's Chronic Illness. 1999, $13.95, 256 pages.
When one's spouse is diagnosed with a serious illness, two lives are devastated. A woman married for 15 years draws on her personal experience and that of the many other men and women whom she has interviewed to speak frankly about what it is really like to care for a chronically ill spouse. Used copies only, starting at $1.95.

Moffatt, Bettyclare. The Caregiver's Companion, Words to Comfort and Inspire. 1997, $12.00, 216 pages.
A stimulating compilation of inspirational essays, interviews, meditations, and advice offers support and compassionate advice for those who care for the sick and dying, explaining how to cope with the fear, stress, and grief that accompany the caregiving role. Used copies only, starting at $0.75.

National Family Caregivers' Association. The Resourceful Caregiver: Helping Family Caregivers Help Themselves. 1996, $12.95, 208 pages.
Provides access to over 500 national sources of help, education, information, and support services. To order call toll free in the USA: 1-800-896-3650. Used copies only, starting at $42.97.

**MUST READ**
Piburn, Gregg. Beyond Chaos: One Man's Journey Alongside His Chronically Ill Wife. 1999, $14.95, 320 pages.
This daring and thought-provoking chronicle encourages readers, both the healthy and the unhealthy, to become open, honest, and courageous in dealing with the sensitive issues surrounding a life invaded by chronic illness.

Sherman, James R. Caregiver Survival Series. Published by Pathway Books, 700 Parkview Terr., Golden Valley, MN 55416-1521. All titles $9.95. To order books, write to: Pathway Books, P.O. Box 27790, Golden Valley, MN 55427-0790, or call 1-800-958-3375 (access 3:2) for information. An order form can be found at: http://www.caregiver911.com/html/order_books.html. (This is a series of eleven books. It appears that only four have been published to date, with used versions only available, starting at $6.95.)

Strong, Maggie. Mainstay: For the Well Spouse of the Chronically Ill. Bradford Books, 1997, $15, 394 pages.
How to handle getting the news, changed dependencies, acts of rescue, family conflicts. The American Library Association states, "One of the most eloquent accounts ever published about the stresses, frustrations, and agonies of watching a loved one degenerate over years and years. . . a searingly honest love story."

Periodicals

The Caring Advocate, published six times a year, this periodical provides inspiration, support, and fellowship for caregivers (non-paid family carers). The subscription rate is $12.00 per year, but most of the articles appear on the Website along with two substantial links pages, one to organizations and one to personal Websites.
Founder/Publisher: Valerie Noelle-Cole E-mail to: info@thecaringadvocate.com Write to: 1187 Coast Village Road, Suite 1-178, Santa Barbara, CA 93108 Telephone to: (805)675-6630

Today's Caregiver Magazine Published 6 times a year, yearly subscription rate is $18.00.
Subscription requests may be sent online via the above link.
Send request to: P.O. Box 21646, Ft Lauderdale, FL 33335.
Call toll free to: (800) 829-2734
Print form and fax your order to: Today's Caregiver at: (954) 462-7511.
Helpful information for all family and professional caregivers.

The Caregiver (Canadian newsletter for carers) Yearly subscription rate: $10.70.
For more information visit the Website at above link.
Write to: Caregiver Network Inc., 561 Avenue Road, Suite 206, Toronto, Ontario, Canada M4V 2J8.
Telephone to: 416.323-1090
Fax to: 416.966.2341

Take Care Newsletter,
National Family Caregivers Association (NFCA)
For information, visit their Website at the above link.
Write to: National Family Caregivers Association, 9621 East Bexhill Drive, Kensington, MD 20895-3104.
Telephone to: 301-942-6420

Caregiving Online, subscription is $29.95 per year.
Write to: Tad Publishing Co. · P.O. Box 224 · Park Ridge, IL 60068.
Telephone to: (847) 823-0639
Note: The Website is set up for caregivers to the elderly, but the newsletter seems to contain general information.

Online Booklets

The Caregiver's Handbook is a complete online handbook of information for family caregivers. In it is a wealth of useful information about caregiving and caregivers. It can be printed right off the Internet site. Even if you don't read or print the entire handbook, I encourage you to go to Chapter 3, which is arguably the most important part of the handbook. The title, "Caring for the Caregiver," is all the introduction that is needed.

Carer Support Kits

Caregivers Support Kit
National Caregiving Foundation
401 Wyth Street, A-3, Alexandria, VA 22314, U.S.A.
Telephone: (703) 299-9300

Carers Support Kit
Carers Association of Australia
P.O. Box 3717, Weston ACT 2611, Australia
Telephone to Carer Resource Centres at: 1-800 242 636
Online order form can be found at: http://www.carersaustralia.com.au/information.html#carer where some of the information can be downloaded in HTML or PDF file formats.

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Chatrooms for Caregivers

Chatroom located at Empowering Caregivers Website. To view a chat schedule, go to the chat page at http://www.care-givers.com/community/chatschedule.html#Anchor.

Main Carer Page || Carers-Introduction || Carers-Tips || Carers-Depression || Carers-Resources

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Compiled by Chris Townsend, Sarcoid Connection
cmtown@excite.com
Last modified on February 3, 2007


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