ElderCare Beacon Newsletter


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ElderCare Beacon
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January 15, 2001                                                                   Vol. 4, No. 2
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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,

I have gotten a lot of positive feedback on this month’s topic, "Caring for the Caregiver." One man who cares for his wife with Fronto-Temporal Lobe Dementia wrote to me that as a man, he felt that he had to use every ounce of physical and mental energy to care for his wife. Needless to say, he was stressed, drinking too much and close to his breaking point (by his own admission). The stress management articles were a godsend to him. He is now taking time for himself and speaking with his pastor regularly. He said he now calls himself a "Caregiver," something he has never said before.

The opportunity to make a difference in the lives of individuals is one of the greatest gifts a professional can have. Thank you for trusting me and all the wonderful people behind this site and allowing us the opportunity to be a part of your lives.

At the beginning of this month we concluded the Healthy Aging survey. Another "Thank You" to everyone who participated. In the next month or so we will be digesting the data you provided and writing a summary so you can get some ideas for improving your health as you age. I am processing the mailing list and sending out the videos and chocolates. If you received a notice that you are a winner, PLEASE reply to me as soon as possible with your mailing address. Otherwise your package will be sent to another participant (or eaten by me).

The ElderCare Forum just had another technical upgrade. You won’t see it from where you are sitting, but it will now run more efficiently and stop rejecting your passwords. If you have had trouble registering in the past, please re-register; if you have been rejected, please try again. We have a new topical category in the Forum ("I, Caregiver") to relate stories and wisdom on the positive aspects of caregiving. Finally, see the note below for information on a special promotion for Forum participants.

ElderCare Online covers such a broad range of topics, yet we still manage to maintain strong specialization in a few areas: Alzheimer’s care, family dynamics and caring for the caregiver. With the inclusion of our newest Learning Resource Guide, I feel that our "homecare" expertise has grown substantially. We provide numerous articles and tools (such as the Learning Resource Guides, Skill Builders and workbooks) that make homecare much more manageable. We understand that your ability to master homecare skills will greatly reduce your stress, minimize the need for outside assistance and improve quality of life.

Kind Regards,
Rich O’Boyle
ElderCare Online

INSIDE THIS ISSUE

ElderCare Forum: Multimedia Meditations, Guided Imagery and Affirmations
Hot Topic: I, Caregiver Channel Launched (continued)
Learning Resource Guide: Managing Medications Safely
Respite Rewards: "Caregiving" Book for Forum Participants
Feature Articles: Support Groups Are Essential to Caregiver Wellbeing and Wandering Tips
Caregiver’s Voices: East Coast Caregivers Can Earn $100 for Their Opinions
Top AD/Caregiving Sites: Caregiver’s Army
Live Discussion Groups: Schedule for January
Subscription Information

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ELDERCARE FORUM: Multimedia Meditations, Guided Imagery and Affirmations

I came across this site while searching for spiritual resources on the Internet. Beliefnet is a vast site, but I would like to highlight some very unique resources that they have that caregivers might find rewarding. These "tools" are straightforward multimedia presentations that guide users through meditations and relaxation techniques. They are both visually beautiful and spiritually relevant. Beliefnet is a non-sectarian religious website that covers all major (and minor) religions.

I was a bit reluctant to highlight these because you will need a fairly fast connection (at least 56K and probably cable or DSL) to enjoy them. Nevertheless, some of them are designed for slower computer connections. You will also need to have Real Media software loaded on your computer (it is available for free from http://www.real.com) as well as speakers.

I have added a link to these resources in the Affirmation & Inspirations section of the ElderCare Forum. Click here for the links to the multimedia tools: http://216.122.139.136/ubb/Forum10/HTML/000166.html

The Affirmations & Inspirations section contains daily motivating meditations that you might like to read regularly.

HOT TOPIC: I, Caregiver Channel Launched (continued)

I am pleased to announce the launch of a new topical section of the website called "I, Caregiver." This area will complement the existing seven knowledge channels with a focus on "taking care of the caregiver." Too often we "medicalize" the caregiving experience or turn it into a series of steps and processes. Caregiving is about individuals and their interrelationships over time and through the course of illness and recovery (or death) – our articles and interactive features will serve to guide caregivers through that journey.

So much attention is placed on the wellbeing and medical care of our elderly loved ones that we often forget to take care of the caregiver. This new channel adds to our substantial library of eldercare articles, tools and educational modules. "I, Caregiver" provides information, education and support with the caregiver at the center of the picture. You will find articles on the following topics:

  • Stress Management
  • Family Dynamics
  • Emotional Wellbeing & Healthy Aging
  • Respite and Services

Our newest updates include the article on support groups (see below) and the Strategies for Managing Stress Skill Builder. Please check the discussion group schedule further down for relevant chats. The ElderCare Forum has a new "I, Caregiver" section specifically designed for relating positive experiences and stories about caregiving. Please visit the new "I, Caregiver" channel at http://www.ec-online.net/icarechannel.htm.

LEARNING RESOURCE GUIDE: Managing Medications Safely

Our newest Learning Resource Guide is "Managing Medications Safely." This free 20-page booklet contains very practical suggestions on working with your loved one’s doctor; working with the pharmacist; taking over-the-counter, generic and prescription medicines; and managing daily pill regimens.

We have a collection of eight guides on topics such as "Coping With Alzheimer’s Disease," "Talking With Your Doctor," "Understanding Incontinence" and "Preventing Frauds and Scams." Our workbooks such as the ElderCare Organizer and the Medical Planner complement these booklets nicely. Using the each of these tools will help you to stay on top of the medical appointments and conditions of your loved one, and hopefully improve the care they receive from you and their health care providers.

They are all available as free downloads at http://www.ec-online.net.

FEATURE ARTICLES: Support Groups and Wandering Tips

Support Groups Are Essential to Caregiver Wellbeing, by Rich O’Boyle

Sometimes the emotional side of Alzheimer’s Disease is just as hard to deal with as the physical side. You may have fears and concerns or feel overwhelmed by your situation. Everyone has different ways of dealing with these feelings. Your attitude about your Loved One’s condition, your expectations, and how well you cope with the disease can play a big part in the quality of life for both you and your Loved One.

The article includes tips on joining support groups and using online support services, such as those provided by ElderCare Online, as well as numerous links to online and offline support group resources. You can read the whole article at: http://www.ec-online.net/Knowledge/Articles/supportgroups.html

Tips on … Wandering by Edyth Ann Knox

Edyth Ann begins a series of tips for Alzheimer’s Disease caregivers with an incredibly useful list of tips on Wandering.

Wandering is one of the biggest risk factors for our loved family members with Alzheimer’s Disease. In 1999 there was a reported 32,000 loved ones with Alzheimer’s Disease that wandered away from their homes or care facilities. Wintertime or times of extreme weather conditions are some of the most riskiest times for a loved one to wander off. Generally if a Loved One is found within 24 hours they are returned safely, however after 24 hours the survival rate drops down to 46%. In general I would say that chances are that your Loved One may become separated from you at least once during the course of the disease. Though wandering remains a risk while a Loved one is mobile there are things you can do to help safe guard against wandering and having a loved one returned safely if they do become separated.

You can read the entire selection of ten tips at: http://www.ec-online.net/Knowledge/Articles/wandertip.html

RESPITE REWARDS: "Caregiving" Book for Forum Participants

I would like to revive our Respite Rewards program for active community members. I have been so focused on making site enhancements and technical upgrades. I note that there are several active Forum participants who I want to reward with a copy of "Caregiving: The Spiritual Journey of Love, Loss and Renewal" by Beth Witrogen McLeod.

When I met with Beth last year in San Diego, we were both drawn together by our commitment to showing caregivers the joys and benefits of the caregiving journey. I would like all of you to read her book! While I can’t give one to EVERY one of you, I can give several copies from time to time.

This month – in keeping with our theme of "caring for the caregiver" and positive caregiving – I will be providing ten copies of Beth’s book to new and old members: five new Forum participants and five current Forum registrants will be contacted by e-mail to receive a copy of the book with my compliments. If you already have Beth’s book, I have some alternate selections.

Just go to the ElderCare Forum at http://216.122.139.136/cgi-bin/Ultimate.cgi?action=intro and click on "register" in the upper right corner. We don’t require much personal information at all, mainly your e-mail address, which allows you to be notified of new posts and responses to your posts.

You can read a book review of "Caregiving: The Spiritual Journey of Love, Loss and Renewal" (as well as dozens of other books) in the ElderCare Bookstore at http://www.ec-online.net/Connections/bookstore.htm. We have a list of top caregiving books, book reviews and specialty "bookshelves" for hard-to-find books.

CAREGIVER’S VOICES: East Coast Caregivers Can Earn $100 for Their Opinions

Back in November, ElderCare Online partnered with The Caregivers Advisory Panel (TCAP) so that the voices, opinions and insights of caregivers would be conveyed to makers of products and developers of services. Without caregiver input, these innovators will not be able to develop time- and money-saving products for you. At worst, they will launch new products that don’t really solve your problems.

TCAP is sponsoring several focus groups for a special tri-city research project. The project is about nutrition and the use of nutritional supplements. The locations include Bethesda, MD; Philadelphia, PA and Ft. Lauderdale, FL. If you are a current family caregiver and the person you care for uses a nutritional supplement (liquid, powder, bar, tube feeding), then you may be eligible to express your opinions at a focus group while earning $100 for not more than 2 hours of your time.

A focus group is small (about 12 participants) with a skilled leader who will be asking specific questions about nutrition, a subject that you know well. There are never any "right" or "wrong" answers – it is your experience and opinion that counts!

ElderCare Online receives a small referral fee if you register through our website. As you know, we do not accept banner ads on the site and are very cautious about affiliate programs. I only work with companies that provide direct and measurable rewards to our membership. You can learn more about TCAP and register today at http://www.ec-online.net/Connections/tcap.html.

Participation is limited so call today to reserve your space! Be sure to mention ElderCare Online when you call.

Washington DC/Bethesda, MD.
(by a Metro stop)
Wednesday, February 7th @ 2 PM or 8 PM
301-215-7248
Ask for Cathy Berry

Philadelphia/Bala Cynwyd, PA
Wednesday, Feb. 14th @ 2 PM or 8 PM
610-668-8535
Ask for Lisa

Fort Lauderdale, FL
Thursday, Feb 15th @ 8 PM
Friday, Feb. 16th @ 12 noon
954-772-5101
Ask for Lisa

Sponsored by The Caregivers Advisory Panel, 3949 Old Post Road # 100 C, Charlestown, RI 02813, 877-595-6227.

TOP AD/CAREGIVING SITES: Caregivers Army Petition

It is such a pleasure to watch a beautiful flower grow in the garden. To see it get taller each day and to watch its leaves unfold. Sometimes we get distracted and can’t come to our favorite part of the garden for a few days or weeks. When we return we are amazed to see the growth and beauty that have unfolded since our last visit.

I remember when the Caregiver’s Army website first joined the community of caregiving websites. What started as an idea and a crusade has blossomed into a clean and inviting website. Not to mention a service to our community that is hard to match.

The Caregiver’s Army is collecting signatures on a petition requesting additional funding for dementia research. This is a truly grass roots movement that has already collected 35,000 names. What is so "cool" about this group of caregivers is their use of the Internet to coordinate offline activities, get the word out and strategize. They are an example to small grass roots groups everywhere.

This month I encourage you all to visit the Caregiver’s Army website at http://www.caregiversarmy.com and to sign the petition, either online, or print it off and mail it in. I also will recommend some level of involvement each and every one of you (bring a copy of the petition to your support group, place of worship or civic association). This is such a good cause (obviously) and such a great group of activists (you will see once you meet them).

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 January

Are you interested in a daytime chat session? I am considering adding a "Coffee Talk" session from 1:00 to 2:30PM EST on Wednesdays. Please let me know if you are interested in hosting it, participating in it or have topics that you would like to see discussed.

January 17 (Wednesday 9:00PM to 10:00PM EST) "ALZwell Tonight:" Host Susan Grossman leads a self-help group for dementia caregivers.

January 18 (Thursday 9:00 to 11:00PM EST) "Bubblehead’s Chatroom:" Host Edyth Ann Knox leads a supportive chat group for dementia caregivers on the topic of "Winter Hazards."

January 24 (Wednesday 9:00 to 11:00PM EST) "ElderCare Answers:" Host Rich O’Boyle hosts a discussion group on the topic of "Challenging Behaviors."

January 25 (Thursday 9:00 to 11:00PM EST) "Bubblehead’s Chatroom:" Host Edyth Ann Knox leads a supportive chat group for dementia caregivers on the topic of "Isolation and Depression."

January 31 (Wednesday 9:00PM to 10:00PM EST) "ALZwell Tonight:" Host Susan Grossman leads a self-help group for dementia caregivers.

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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