The Caregiver's Beacon Newsletter

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The Caregiver’s Beacon (tm)
“Tell me why – Show me how – Hold my hand”
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August 15, 2002                                                                                 Vol. 5 No. 15
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ALZwell Caregiver Support and ElderCare Online
http://www.alzwell.com and http://www.ec-online.net
Serving the Needs of Caregivers Since 1996
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Dear Friends,

All of us here at ElderCare Online and ALZwell Caregiver Support are committed to making these websites and support groups responsive to your interests and needs. When I say all of us, I mean me (Rich O’Boyle), Edyth Ann Knox, Vicki Gardner, the numerous formal and informal volunteers in our chatroom and message board, the insightful authors who write the bulk of our articles, and the countless good citizens who pass through and share their feedback and insights. I don’t have a monopoly on good ideas for our community. That’s why I rely so heavily on our moderators and members for the ideas that have continued to make us one of the best online information, education, and support systems on the Internet.

We are especially interested in adapting our message board Forum to fit with the specific topics of interest, as well as the evolving needs of our members as their loved ones progress with Alzheimer’s Disease or other illnesses. In particular, we have seen some of our long-time members slow down in their posts, or even drop off altogether. Are there things we should be doing to keep the Forum relevant to your needs? Having said that, we continue to see many new members arrive every day. It’s hard to keep the Forum focused yet wide-ranging at the same time. Please give us your feedback!

There are other message boards and chatrooms on the Internet, and we encourage our members to visit related websites to find the type of support that fits them best. We don’t feel that we are competing with other websites. In fact, we have built long-standing partnerships with many over the six years that we have been publishing our websites. If you do decide to join another group, we don’t harbor any ill will, but are happy that you have found a new place that helps you care for yourself and your loved one(s). If you do move on, remember that we will continue to be here if you want to come back and say hello. If you do leave, please fill out our suggestion box (anonymously if you like) so that we can continue to improve.

While most of our members are caring for an elderly loved one (usually a parent) with Alzheimer’s Disease, we do have many who are caring for a spouse, other relative, or client. Other diseases include congestive heart failure, stroke, Parkinson’s Disease, and less common dementias. We have a very active group of individuals caring for their spouses with Early Onset Alzheimer’s Disease (which strikes during the 50’s rather than later in life). I want to make it clear: ElderCare Online and ALZwell Caregiver Support are dedicated to helping all caregivers to individuals with any form of dementia, as well as all elderly individuals, regardless of the disease(s) they may have. This is a quite a commitment.

Throughout the month of September we will be offering our annual survey of member issues. This is an excellent opportunity to share some basic information about caregiving so that we can further develop our articles and support groups. We will dedicate a few additional questions toward getting to the heart of what makes for effective support groups… and then we will implement your suggestions. I look forward to hearing your comments.

If you want to submit some comments right now, please go to our suggestion box at http://www.ec-online.net/forms/formsuggest.htm. If you want to remain anonymous, just leave the name and e-mail fields blank. Of course we prefer to know who you are so that we can reply if necessary.

Kind Regards,
Rich O’Boyle, Publisher
ALZwell Caregiver Support
ElderCare Online
Prism Caregiver Education Series

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INSIDE THIS ISSUE

Feature Article: “Living in a Care Facility” by Peter Silin, MSW, RSW
Caregiver Store: “Elder Care: A Six-Step Guide to Balancing Work and Family”
Our Sponsor: Link to Life: Personal Response Service
Research Request: Chicken Soup for the Caregiver’s Soul
Top Alzheimers/Caregiving Websites: The Stroke Network
ElderCare Forum: Latest Postings
Chat Schedule: Updates for August
Subscription Information

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FEATURE ARTICLE: “Living in a Care Facility” by Peter Silin, MSW, RSW

The experience of being the resident (and also of being the family member) of a care facility varies enormously. This is partly because of the vast differences in care facilities and care facility staff. It is partly because of the differences in the residents themselves.  It is also different because of what family members/caregivers are able to provide and because of the larger system (government, health departments, etc) of which the facilities are apart.

To truly appreciate life in a care facility, I think we must first have an understanding of the purpose of care facilities. The purpose is not care, it is to help the resident achieve and/or maintain the highest quality of life that is possible for that resident. Care is one aspect of how the purpose is accomplished, or a measure by which we can evaluate the extent to which the purpose is achieved. Quality of life comes from quality of relationships, and the meaning, purpose, and structure in life that people have. At the same time, quality of life is an individual matter, varying from person to person. Part of the home’s care quality comes from understanding what it means to each resident and the home’s ability to e flexible enough to meet that individuality.

To read Peter’s complete article go to http://www.ec-online.net/Knowledge/Articles/livinginanh.html

CAREGIVER STORE: “Elder Care: A Six-Step Guide to Balancing Work and Family”

There are literally hundreds of books that have been written to guide families through the caregiving journey. Many of them are exceptional – but you probably only need to buy or read four or five of them, depending on your specific needs. If you are working full-time (like most caregivers), John Paul Marosy’s practical book, “Elder Care: A Six Step Guide to Balancing Work and Family” should be on your reading list.

John Paul’s hands-on book is the only resource of its kind that I am aware of. It is the only book that addresses some very difficult issues that caregivers with conflicting responsibilities at home and in the office regularly face. For example, detailed questionnaires that help to assess how your eldercare situation is impacting work. It also gives you insights on what to say – and what NOT to say to your supervisor.

The book includes information, tips, worksheets, and wisdom on the following topics:

  • Assessing your situation at work: the impact your elder is having on your work, the level of trust between you and your supervisor, etc.
  • Assessing your eldercare situation: feelings and concerns, holding family meetings, setting up an information folder, etc.
  • Learning about resources at work
  • Weighing options and implementing a plan
  • Long-Distance caregiving
  • Eldercare Resources

John Paul’s book is available directly from ElderCare Online’s secure caregiving store at http://www.ec-online.net/Store/store.htm

OUR SPONSOR: Link to Life: Personal Response Service

“Link to Life has been very crucial in keeping my mother living independently in her home. Without your wonderful service, she would be in a nursing home.”

“My children are grateful for such a service. Because they work, they can’t always be here, but the button around my neck assures them I will receive help immediately if I need it. ”

For more than twenty years, Link to Life has been providing quality, caring Personal Response Services to thousands of satisfied Subscribers like these.

As a Link to Life Subscriber, those you love or provide care for will be able to get help at the touch of a button, even if they are unable to reach the phone. The lightweight, waterproof personal help button, worn on a necklace, wristband or belt clip, sends a signal to our base unit connected to an ordinary phone line in the home. Within seconds, a Response Center Operator is able to communicate with the Subscriber from wherever they are in their home, addressing the Subscriber’s needs with all the necessary information at their fingertips.

Most calls are resolved with the simple assurance of a Link to Life Operator’s warm, friendly voice. In more serious situations, we would immediately begin following the response steps outlined by you and the Subscriber prior to the installation of our service. You tell us what you want done in the event of an emergency, including who to contact to provide assistance, which hospital and doctor is preferred, and who to notify about the Subscriber’s situation and condition. We can also provide health insurance information, pre-existing medical conditions and prescription drug data to medical personnel - any information that can help.

While many equate Personal Response Services with loss of independence, just the opposite is true. Knowing that help is just a touch of a button away- 24 hours a day, 365 days a year- provides Link to Life Subscribers with the confidence and security they need to live alone in their own homes safely and with dignity.

Our services provide peace of mind to a Subscriber’s family and caregivers. Although you can’t always be with the Subscriber, you can be assured that Link to Life is. And you have the added comfort of knowing you will be contacted immediately and be kept up to date if something should happen.

In addition to providing peace of mind, Link to Life prevents serious medical complications. In an emergency, the amount of time someone has to wait for help affects outcomes. Studies show that, after a fall, receiving immediate medical attention reduces an elderly person’s likelihood of hospitalization by 26% and death by over 82%.

Link to Life’s Operators follow through on all calls until help arrives, ensuring the quickest possible intervention and the best possible outcome. Our services don’t stop there - ongoing and next day follow up, a SafeTravel Card to provide all necessary information if an accident happens away from home and many other benefits are all included.

For more information about Link to Life, or to order the service visit, our web site at http://www.link-to-life.com or call us at 1-800-338-4176.

RESEARCH REQUEST: Chicken Soup for the Caregiver’s Soul

Over 54 million Americans help care for ailing family members or friends. Millions more selflessly minister to people in daycare, emergency, and community services. While often rewarding, this benevolent care-giving requires tremendous emotional, physical, and spiritual strength. That's why we are creating Chicken Soup for the Caregiver's Soul, 101 Stories to Uplift, Honor, and Support the Caregiver.

Please share your inspirational, true stories, 1200 words or less, to help us care for those who lovingly care for others. For each story selected, a 50-word biography will be included about the author and $300 will be paid. The submission deadline is December 1, 2002. For details and guidelines see www.LeAnnThieman.com or send stories with your name, address and phone number to ChickenSoup@LeAnnThieman.com.

TOP ALZHEIMERS/CAREGIVING WEBSITES: The Stroke Network

Caregivers to loved ones who have suffered a stroke have particular issues that they have to deal with. While many stroke caregivers can appreciate the challenges that dementia caregivers face, they may be caring for a loved one who is mentally competent, but severely physically limited.

“The Stroke Network” is a collection of related websites that provides stroke survivors, stroke caregivers, and healthcare professionals with a solid blend of information and support. They offer a sizable library of medically reviewed videos and articles (courtesy of Healthology.com), as well as mailing lists, chatrooms, and e-mail newsletters.

Of particular interest is a free downloadable “The Stroke Caregivers Handbook.” It was written by several of the network’s caregiver members who wanted to make their learned experiences available for the new stroke caregiver.

Visit The Stroke Network at http://www.strokenetwork.org.

For additional Alzheimer’s and Caregiving websites, Brenda Parris Sibley has established one of the best clearinghouses 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.

ELDERCARE FORUM: Latest Postings

If you would like to register, please follow this link: http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=agree. Please excuse any little error messages that you may receive. We are working to resolve a software glitch. I will manually send your registration information and password. Just fill out the information and wait. I will get it to you in less than a day (probably within 15 minutes).

(Note: Some of these links may not transfer correctly via e-mail. In that case, just go to the Forum at http://216.122.139.136/cgi-bin/ultimatebb.cgi or read this newsletter off of the website).

We Laugh to Survive: Jokes posted by our members. Be careful, some of these are really dumb or really racy… http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=forum&f=21

News and Research: Several new updates have been posted here by members and our moderators, including the latest information about the role of diet and vitamins in treating and preventing Alzheimer’s Disease at http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=forum&f=26

Spousal Caregivers Meeting Room: A new room has been set up for August at http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=get_topic&f=29&t=000086

Daily Challenges: “What Do We Know:” Member BJC (Brian) has begun a very insightful discussion thread about the lessons learned by caregivers. Please share your ideas with him at  http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=get_topic&f=29&t=000085

Daily Challenges: “Help With Prescription Drug Costs:” We have posted several links and suggestions on how caregivers can get a handle on drug costs. These approaches include finding programs in your area that you can sign up for (usually at no cost), as well as state programs for the needy. http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=get_topic&f=1&t=000227

Less Common Dementias: We have an entire discussion board for those caregivers who find their loved ones have one of the rare forms of dementia, including Lewy Body Disease, Normal Pressure Hydrocephalus, or Pick’s Disease, among others. This is a great place to link up with those far-flung caregivers who share your particular concerns. http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=forum&f=34

New Caregiver’s Meeting Room: “Denial:” This is an interesting thread because it speaks to a common caregiver issue… denial by our loved ones that they are having trouble as they age… either with dementia or safety. I’m sure that many of you will be able to relate to Lee2’s personal story, and perhaps share your own at http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=get_topic&f=40&t=000051

New Caregiver’s Meeting Room: “Beginning the Journey:” Please welcome new member NancyC as she begins her own caregiving journey. Her mother has been increasingly forgetful and it appears that she may have dementia. Connect with NancyC at http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=get_topic&f=40&t=000049

I, Caregiver: “CGs Health and Survival:” Forum Moderator Edyth Ann has shared some personal reflections on the importance of caring for oneself. Please take the time to read her comments at http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=get_topic&f=19&t=000055.

Former Caregivers Meeting Room: For those of us who have moved forward from our caregiving responsibilities, or see light at the end of the tunnel, we have a special section of discussion threads at http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=forum&f=38.

We have literally hundreds of other discussions going on in the Forum. Please come by to browse and read. We cover so many of the issues that all caregivers encounter. Just reading the stories and comments can help you learn. If you have specific questions or feel that you need the support of others just like you, please sign up and join us. Visit the Forum at http://216.122.139.136/cgi-bin/ultimatebb.cgi.

CHAT SCHEDULE: Updates for August

Enter the chatroom from the front page of either website or at http://www.ec-online.net/chat.htm. All times are U.S. Eastern Standard Time (GMT –5). We have begun to provide chats that are hosted by caregivers in Australia. Australian times are GMT +10. Hopefully this will not cause a great deal of confusion and instead give us more opportunities to connect with each other.

Topics are suggested and NOT required. We always focus on the issues and that our members want to discuss. Please remember that we have a new chatroom. If you had trouble using the old one, please give it another try! Please note the new sessions added on Monday evenings, Wednesday mornings, and Saturday afternoons.

Our current chat schedule is posted in the ElderCare Community Center at http://www.ec-online.net/Community/communit.htm as well as at the end of this newsletter.

Most of the chat moderators will be on vacation at some point during the week of July 1 to 6 for the Independence Day holiday. The chatroom will be open, but we will not have facilitators on some days. Please check the schedule. You are welcome to continue to use the chatroom to meet and connect with your caregiving friends.

August 14 (Wednesday 5:00 to 7:00AM EST) “Ozcarers' Chatroom (or Pong's Place):" Hosts Pongfoot (David) and Splash (Edith) welcome caregivers from around the world to drop in and put their feet up for a while, chat with other caregivers and "Take a Break."

August 14 (Wednesday 1:00 to 2:00PM EST) “Sugarlips’ Chatroom:” Host Vicki Gardner welcomes caregivers for a social and networking discussion group on the topic of “Expressing Our Emotions.”

August 14 (Wednesday 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 “Caregiving for People with Dementia.”

August 15 (Thursday 9:00 to 11:00PM EST) “Sugarlips’ Chatroom:” Host Vicki Gardner welcomes caregivers for a social and networking discussion group on the topic of “Expressing Our Emotions.”

August 19 (Monday 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 “Caregiving for People with Dementia.”

August 20 (Tuesday 9:00 to 11:00PM EST) “Children of Aging Parents:” Host Brian Duke from CAPS leads a discussion for family caregivers seeking understanding and resources.

August 21 (Wednesday 5:00 to 7:00AM EST) “Ozcarers' Chatroom (or Pong's Place):" Hosts Pongfoot (David) and Splash (Edith) welcome caregivers from around the world to drop in and put their feet up for a while, chat with other caregivers and "Take a Break."

August 21 (Wednesday 1:00 to 2:00PM EST) “Sugarlips’ Chatroom:” Host Vicki Gardner welcomes caregivers for a social and networking discussion group on the topic of “Expressing Our Emotions."

August 21 (Wednesday 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 “Caregiving for People with Dementia.”

August 22 (Thursday 9:00 to 11:00PM EST) “Sugarlips’ Chatroom:” Host Vicki Gardner welcomes caregivers for a social and networking discussion group on the topic of “Expressing Our Emotions.”

August 26 (Monday 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 “Caregiving for People with Dementia.”

August 28 (Wednesday 5:00 to 7:00AM EST) “Ozcarers' Chatroom (or Pong's Place):" Hosts Pongfoot (David) and Splash (Edith) welcome caregivers from around the world to drop in and put their feet up for a while, chat with other caregivers and "Take a Break."

August 28 (Wednesday 1:00 to 2:00PM EST) “Sugarlips’ Chatroom:” Host Vicki Gardner welcomes caregivers for a social and networking discussion group on the topic of “Expressing Our Emotions.”

August 28 (Wednesday 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 “Caregiving for People with Dementia.”

August 29 (Thursday 9:00 to 11:00PM EST) “Sugarlips’ Chatroom:” Host Vicki Gardner welcomes caregivers for a social and networking discussion group on the topic of “Expressing Our Emotions.”

Enter the chatroom from the front page of either website or at http://www.ec-online.net/chat.htm.

SUBSCRIPTION INFORMATION

The Caregiver’s Beacon is published bimonthly by ElderCare Online and ALZwell Caregiver Support. To subscribe to this free newsletter, visit the subscription information page at http://www.ec-online.net/Knowledge/Newsletters/subscribe.htm.

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