ElderCare Beacon Newsletter


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ElderCare Beacon
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November 15, 2000                                                                                Vol. 3, No. 21
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ElderCare Online – The Internet Community of Elder Caregivers
http://www.ec-online.net
"Tell me why – Show me how – Hold my hand" (sm)
Serving the Needs of Caregivers Since 1997

Dear Friends,

November is a very busy month for caregivers and their advocates. It is recognized as Alzheimer’s Awareness Month, Family Caregivers Month and Hospice Month. These designations mean a lot to us since they increase awareness to the public of the challenges that elder caregivers face every day. But caregivers know that the process of caregiving lasts more than a month – it can last a decade for some, especially those with Alzheimer’s Disease.

With this in mind, we turn our attention to the Thanksgiving Holiday. This is a time when families come together to reinvigorate the ties that bind us as families. The holiday can be a time to share our progress in our careers, to remember loved ones who have died, to introduce new "significant others" or to reconnect with distant cousins. If the gathering is not too hectic, it may be a good time for siblings and other relatives to share in the care of an elderly loved one. They can see first hand the skills and talents that you have developed as a caregiver. It is also an opportunity for them to nurture the aged family member and give you a bit of relief.

Everyone has a part to play in the care of our society’s aging loved ones. That means advocates, hands-on caregivers, family members and concerned outsiders. You have the opportunity to educate others about caregiving beyond what any 30-second public service announcement can do.

In this issue of the newsletter, we continue the development of the Teen Resource Center. I have gotten so much positive feedback on it. We are also publishing articles on making the most of respite (so important as we enter the stressful holiday season) and talking with children about death. Please note changes to the chat schedule since some of the sessions conflict with the Thanksgiving holiday.

Finally, I want to highlight our new association with The Caregivers Advisory Panel. The panel is being developed to give caregivers a voice in the development of new products and services for home caregivers. They will pay you to complete private surveys that inform product makers and service providers on how to best develop their caregiver assistance tools. ElderCare Online receives a small commission (up to $1) each time you complete a survey. This commission helps us to keep the site free for you.

Kind Regards,
Rich O’Boyle
ElderCare Online

INSIDE THIS ISSUE

The Caregivers Advisory Panel: Giving Caregivers a Voice
ElderCare Forum: Caregivers Sharing Ideas and Support
Hot Topic: Resources for Teens (Continued)
Feature Articles: "Respite" and "Talking With Children About Death"
Taub Institute Expert Discussion: The Stages of Alzheimer’s Disease
Book Reviews: Home Care Reading Resources
Neighborhood Networks: New State and Local Resources Added
Top AD/Caregiving Sites: "The Long Goodbye"
Live Discussion Groups: Schedule for November
Subscription Information

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THE CAREGIVERS ADVISORY PANEL: Giving Caregivers a Voice

ElderCare Online is pleased to announce that it has formed a Collaborative Partnership with The Caregivers Advisory Panel (TCAP) and invites you to learn more about the benefits of membership in TCAP. TCAP is comprised of family caregivers, like you, from all across the United States, representing most all caregiving situations and circumstances. TCAP conducts market research surveys with caregivers who are panel members to learn about their ideas, opinions, needs and wants.

Until TCAP, no one has ever assembled a national panel of family caregivers to advise manufacturers and service providers who design products and services that caregivers use every day.

By participating in TCAP research surveys you’ll get to:
- Speak out and share your needs, wants and opinions –
- Learn about and test new home health products;
- Be a part of the innovation process!
- Earn cash and become eligible for special cash awards

And -

- Membership in TCAP is free!
- Your responses to surveys are completely confidential and private.

Click here to join now http://www.caregiversadvisorypanel.com/entereconline.asp

Join By November 22 and be eligible for the November New Member Bonus Drawing for Multiple $100 Cash Awards AND you’ll be invited to participate in the TCAP Annual Survey: "Caregiving in the US 2000 Edition: Needs, Issues and Insights" is the first national panel study of caregiver needs, wants and opinions related to home health care products (with focused sections on incontinence, skin and wound care, nutrition). For participating in this survey, you’ll be paid $5 and become eligible for a $500 Cash Bonus Drawing – Use it for respite or spend it any way you like!

Click here to join http://www.caregiversadvisorypanel.com/entereconline.asp

ELDERCARE FORUM: Caregivers Sharing Ideas and Support

Since the ElderCare Forum came back online last month we have seen a surge is usage. So many new discussions have started and old ones revived that I thought I would like to highlight a few of them. The Forum is our community bulletin board – a place to post ideas, concerns and small victories so that others can share in them. That means that if you have a problem or need advice, we have a safe and constructive forum where you can raise it.

The Forum is regularly visited by dozens of hands-on caregivers, as well as our moderators, activists and mentors – both professionals and experienced caregivers. Barbara Bridges, Edyth Ann Knox and Douglas Chu are among those who are available to respond to your postings.

Recent posts:

You can follow these and many other discussion threads in the ElderCare Forum. Each month we reward a few new participants with free caregiving books or products from our affiliate partners. Please join in the community to share your wisdom and support your fellow caregivers. Access the ElderCare Forum at http://www.ec-online.net.

HOT TOPIC: Resources for Teens (Continued)

In this issue of the newsletter, we continue the development of our Teen Resource Center in collaboration with the Long Island Alzheimer’s Foundation. For the past nine months or so we have been planning and preparing this unique resource for family caregivers and the professionals who help them. While we will focus on Teens throughout the month, the Teen Resource Center will remain an integral part of the ElderCare Online site going forward, ultimately with its own newsletter, discussion groups and special features.

Initially, the Teen Resource Center will be comprised of a series of articles written directly for teens aged 13-19. We will also launch a list-serv-type mailing list group through Egroups and a "teens-only" message board in the ElderCare Forum. For the most part, we will be leveraging our experience as a dynamic community for adults so teens can have the same benefits of information, education and support that ElderCare Online has always strived to provide.

We have just added two new articles and are ramping up the community features (mailing list and discussion forum). The two articles are:

- You the Caregiver
- Questions and Answers From Other Teens
- Dementia and Caregiving
- Skills for Coping With Caregiving
- Practical Ways You Can Help

I am looking for one or two adult caregivers who have had experience with teens (either as a counselor or as a parent while caregiving) to assist in monitoring the community. The community will be restricted to teens only, but we still need to be able to provide guidance and support from adult "monitors." Please e-mail me directly at rich@ec-online.net if you are interested in participating. Initially, I will be monitoring the interactive features of the resource center and stimulating discussion. If you are a parent, we want you to feel secure that your teen-aged child is both able to express himself/herself and has access to a caring adult if things get too difficult.

We welcome you as a family caregiver or professional to review the Teen Resource Center and refer your children, relatives, school counselors, clients, religious leaders and support group friends to visit it. As you know, ElderCare Online doesn’t have a million-dollar dot.com advertising budget – we rely almost exclusively on word-of-mouth. That means that in order to get this resource out to teens in need, you have to pass the word along. Please visit the Teen Resource Center at http://www.ec-online.net/Knowledge/SolutionSets/teens.htm.

Coming in December: "Healthy Aging" Hot Topic

FEATURED ARTICLES: "Respite" and "Talking With Children About Death"

"Respite: What It Is, What It Isn’t" by Edyth Ann Knox

Almost all caregivers all have questions about "respite." Respite is defined as "temporary relief, as from work or pain." The need for respite for a caregiver is vital to their well being. Many of us took respite for granted before we were caregivers to our elderly loved ones: as mothers of young children we took respite. But now, we feel guilty even considering taking time for ourselves from our elder caregiving responsibilities. Read the complete article in the Home Care & Independent Living Channel at http://www.ec-online.net/homechannel.htm

"Talking to Children About Death" by Mark Edinberg, Ph.D.

We have many misperceptions about how children understand and process the death of a loved one. This article is designed to give you better knowledge on how children cope with death and practical suggestions on how to talk with your children when you need to discuss the death of a loved one. Read the complete article in the Transitions & Spirituality Channel at http://www.ec-online.net/transchannel.htm

TAUB INSTITUTE EXPERT DISCUSSION: The Stages of Alzheimer’s Disease

The Taub Institute for Research on Alzheimer’s Disease and the Aging Brain and ElderCare Online are collaborating to provide caregivers with a year-long series of online educational sessions on dementia topics. Each month, ElderCare Online (http://www.ec-online.net) will produce a two-hour chat session where caregivers can access a skilled professional from the Taub Institute (http://www.alzheimercenter.org) to discuss topics that help improve their knowledge of dementia and ability to care for their aging loved ones.

The first session will be conducted on December 8 from 1PM to 3PM on the topic of "The Stages of Alzheimer’s Disease: What to Expect." Dr. Karen Bell, a leading expert on Alzheimer’s Disease research and treatment, will chat with you in a comfortable and casual setting. Caregivers are invited to attend the sessions in person through the ElderCare Online website (http://www.ec-online.net). Those who can not attend at the specified time may e-mail advance questions to rich@ec-online.net or read the transcript of the session the following day. Future topics and group leaders will be announced in this newsletter.

Over the next year we will be presenting chat sessions on topics such as these: The Science of Alzheimer’s Disease, Research Update and Behavior Management. What topics would you like to see in the future? E-mail questions and suggestions to rich@ec-online.net.

The Taub Institute for Research on Alzheimer's Disease and the Aging Brain is a new interdisciplinary institute in Columbia University's College of Physicians and Surgeons in New York City. Their mission is to develop the means to identify vulnerable individuals at risk for Alzheimer's Disease and devise new therapies to prevent or delay disorders of the aging brain. If you or a loved one is in need of patient care, they can offer you the most advanced diagnostic and clinical care currently available. You can make an important contribution in the quest to develop new treatments by participating in clinical trials, signing up for brain donation, or supporting their research and clinical programs. "It is our hope that with your help, future generations will no longer suffer from Alzheimer's disease and other devastating diseases of the brain," said Richard Mayeux, M.D., M.Sc. and Michael L. Shelanski, M.D., Ph.D., Co-Directors of the Institute.

These chat sessions are not intended to serve as medical advice or diagnostic tools. They are educational in nature and should never substitute for the regular relationship between the patient and their caregivers, physicians or other heath care providers. Caregivers with medical emergencies or crises should contact their local emergency assistance rather than these chat sessions.

BOOK REVIEWS: Home Care Reading Resources

Janet Frieman, R.N. has written two very helpful reviews of books on home care skills for family caregivers. Too often we feel overwhelmed by the day-to-day tasks of caregiving required of elderly loved ones: everything from changing diapers, preserving frail skin, lifting and moving, administering medications and a whole host of other "medical" care procedures. Mastering the care skills goes a long way in helping you to maintain your own emotional balance and the well-being of your aging loved one.

"Caregiver’s Handbook: A Complete Guide to Home Health Care" by the Visiting Nurse Association of America.

This book would be helpful to all those who become caregivers, either as a relative, significant other, or volunteer. It is an excellent guide for the layperson who finds himself in the position of becoming a caregiver, whether long or short-term. Chapters offer specific advice on the physical care necessary for the comfort and well-being of the person being cared for as well as the caregiver. Health care professionals, patients, and families often say that these days people leave the hospital ‘sicker and quicker’ so it is increasingly important that you as the caregiver have foundational skills to speed their recovery. The book is handsomely illustrated with step-by-step procedures where appropriate.

"Leboeuf’s Home Health Care Handbook: All You Need to Become a Caregiver in Your Home (Eldercare Edition)" by Gene LeBoeuf.

This book is an excellent guide for home health care and a resource for products and organizations geared to specific needs. The home health care giver can become easily overwhelmed by the physical and emotional demands involved in caring for someone at home. This book offers information about dealing with many physical conditions that can arise, and the legal and financial issues that pertain in many circumstances. In a clear and well-organized manner, families are led step-by-step through the process of becoming caregivers. The book also includes a comprehensive "catalog" of products and devices that are commonly used by the home caregiver. This "catalog" gives the caregiver a good idea of the different sizes and models of the products that are available.

Read the entire reviews in the ElderCare Bookstore at http://www.ec-online.net/Connections/bookstore.htm.

NEIGHBORHOOD NETWORKS: New State and Local Resources Added

There are many directories of eldercare providers and services on the Internet. Unfortunately, many of them are out of date or too cumbersome for quick reference. Over the past several months, ElderCare Online has been building an easy-to-use guide to state and local resources across the United States.

Each "Neighborhood Network" contains numerous links to the state and local resources that caregivers need the most: tax forms and publications, legal assistance hotlines, insurance counseling volunteers, Medicaid applications and benefits, county services and local Alzheimer’s support groups.

This month, we have added several new Neighborhood Networks to our growing directory: Montana, New Hampshire, Oregon and Vermont. You can access the national directory through our Community Center, or go directly to http://www.ec-online.net/Community/Neighborhood/neighborhood.html.

TOP AD/CAREGIVING SITES: "The Long Goodbye"

"The Long Goodbye: Searching for Comfort, Courage and Strength" by Penny Klein is this month’s selected site. "This website is my journey to find the faith I once had," Penny begins her writings. Her site is dedicated to her mother Raizel, who has Alzheimer’s Disease and vascular dementia. The site is of particular interest to Jewish caregivers, although the message and insight is useful for everyone.

"I have noticed that Jewish caregivers never speak about their religious beliefs and how it has helped them cope. I have seen many poems and comments from Christian caregivers on their faith, or religious beliefs," she says. Penny notes that becoming more active in her synagogue has given her and her mother more social outlets.

The site includes links to synagogues (that often have outreach committees and knowledge of local services), a reading list, religious links, a journal and a sermon on Alzheimer’s Disease by her Rabbi. The Rabbi has brought together some very poignant poems and personal experiences to show us the universal struggle that all of us are feeling for our loved ones, regardless of religious background.

To access Penny’s website go to http://www.geocities.com/Wellesley/Garden/5337/index.html.

Brenda Parris Sibley has established one of the best clearinghouses for Alzheimer’s Disease and caregiving sites on the Internet. She has contacted and worked with a variety of websites to collect them into a directory with rankings showing which are the most popular. Brenda and the other webmasters and webmistresses have done an excellent job of creating unique and compelling sites that speak directly to family caregivers. In each issue of this newsletter, we will mention one of the many sites that comprise the Top AD/Caregiving Sites List.

You can browse through other sites and vote for ElderCare Online by clicking on the "Top AD/Caregiving Sites" icon on the front page of ElderCare Online at http://www.ec-online.net (or following this complicated link: http://new.topsitelists.com/topsites.cgi?ID=1&user=bpsibley&area=bests. You are welcome to use ElderCare Online as your portal to access these sites, since I know that you will want to visit again and again. I suggest that you access the list often as new sites are added regularly, and as you explore the list, you are bound to find one that didn’t catch your attention last time.

LIVE DISCUSSION GROUPS: Schedule for November

November 15 (Wednesday 9:00PM to 11:00PM EST) "ElderCare Answers:" Host Rich O’Boyle leads a self-help group for all elder caregivers.

November 16 (Thursday 9:00 to 11:00PM EST) Host ZuZu leads a self-help group for dementia caregivers that emphasizes sharing experiences and best practices.

November 22 (Wednesday) Happy Thanksgiving! No chat scheduled.

November 23 (Thursday) Happy Thanksgiving! No chat scheduled.

November 29 (Wednesday 9:00PM to 10:00PM EST) "ALZWell Tonight:" Host Susan Grossman leads a self-help group for dementia caregivers.

November 30 (Thursday 9:00 to 11:00PM EST) Host ZuZu leads a self-help group for dementia caregivers that emphasizes sharing experiences and best practices.

Transcripts from previous discussion groups and guest sessions are posted in the ElderCare Community Center at http://www.ec-online.net/Community/communit.htm.

If you regularly attend an online support group or host one, please forward information on it to info@ec-online.net. If you don’t have a chatroom or website, but are interested in hosting a session on ElderCare Online, please fill out the Community Activist form at http://www.ec-online.net/forms/formactivist.htm.

SUBSCRIPTION INFORMATION

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