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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June 1, 2002                                                                                 Vol. 5 No. 11
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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,

We at ElderCare Online are motivated to help you understand the issues that you face, by providing information, education and support. We want you to have a greater feeling of mastery over the emotional and physical challenges of caregiving. Once you have mastered the chores and tasks, then you will have more time and energy to focus on the loving aspects of caregiving – nurturing your elder so they can live life to the fullest and nurturing yourself so that you are not overwhelmed, depressed and anxious.

Our mission is a tall order – but we are making major strides every day. The volunteer mentors, partners, writers and community members are enhancing this website – adding new articles; connecting caregivers to resources and other caregivers; and making a difference in each other’s well-being. I am so proud of the commitment of our mentors, Jan Allen and Dorothy Womack. These caregivers have brought such compassionate energy to our community.

I am proudest of our numerous community members – caregivers just like you – who have been giving freely of their time and experiences. Many caregivers have been sharing their wisdom and challenges so that others will be able to master caregiving challenges. No one has to go through this alone. The ElderCare Forum community message board is a lifeline that we are throwing to you.

We all know that caregiving is an emotionally and physically challenging way to spend our days (and nights). We are often overwhelmed by the range of skills needed and the feeling that we are not doing enough. You are not alone in this labor of love – YOUR friends and colleagues are ready and willing to help. I would like to end this letter by saying that you caregivers are being rewarded for your efforts: The love that you share as a caregiver is helping you to become a stronger person. You are making a huge difference in the life of your elder or spouse. What greater gift is there to give a loved one than your Love and Commitment?

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

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INSIDE THIS ISSUE

Feature Article: “Oh Brother! Managing Sibling Rivalries”
I, Caregiver Channel Updated
Top Alzheimers/Caregiving Websites: Alzheimer’s Support Awareness Campaign
Caregiving Store: Buy Two, Get Seven Free
ElderCare Forum: Latest Postings
Chat Schedule: Updates for June
Subscription Information

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FEATURE ARTICLE: “Oh Brother! Managing Sibling Rivalries” by Phyllis Hirschkop

The last thing aging parents need is children who can’t work together to help them.  Most elderly people get the assistance from their children that they need and desire.  But often they don’t.  And when they don’t their welfare often suffers and they spend the last years of their lives involved in troubles that, we all admit, they ought to be free of—the unresolved conflicts between their children.  When those conflicts exist, parents’ interests take second place to their children’s own emotional problems.  That shouldn’t be.

Sibling rivalries interfere with helping elder parents in a number of ways.  They make it difficult to get all family members to participate in problem solving and even more difficult to get them to agree on a plan of action to assist parents in need.

Read the complete article with concrete examples and suggestions for managing troubled relationships at http://www.ec-online.net/Knowledge/Articles/ohbrother.html.

Phyllis Kramer Hirschkop is a trained social worker who has practiced as a psychotherapist for 26 years. She has also received training in coaching. Over the past few years, she has focused her practice on working with adult children with elderly parents and the problems that arise as the parents become more and more needy.

I, CAREGIVER CHANNEL UPDATED

One of the most popular books purchased through our online bookstore is “Coping With Your Difficult Older Parent” by Grace LeBow. It covers some challenging personality types and gives clues on how to cope with them. Seeing so much interest in this topic has encouraged me to include some related articles from a local friend, Dr. Thomas Schumacher, a psychologist.

Dr. Schumacher has written for our website before, particularly on the topics of “Good Relationships” and as author of the article “Write Yourself a Sanity Clause,” which is part of the “Homecare for the Holidays” article. His newest articles deal with two particularly troubling personality types that we encounter too often: Control Freaks and Narcissistic Personalities. While these are useful articles for dealing with aging parents who display these characteristics, they are also helpful in understanding spouses, coworkers, and employers. In some cases, they are helpful in understanding ourselves.

We have added these articles to our website even though they are not specifically related to caregiving. We recognize that being an effective caregiver means having a grasp of many different disciplines, including nursing, homecare, finance, psychology, government bureaucracy, and communication, to name a few. Of course we can’t be all things to all people, but your feedback has been critical in helping us to focus on the most essential areas of knowledge.

To read Dr. Schumacher’s latest articles, visit the “I, Caregiver Channel” at http://www.ec-online.net/icarechannel.htm

TOP ALZHEIMERS/CAREGIVING WEBSITES: Alzheimer’s Awareness Campaign

Many dementia caregivers turn to political and community activism as the learn more about Alzheimer’s Disease (and learn how little we know about it). It is only in the last year or two that we have seen a real increase in government and public support for family caregivers (notably the Family Caregiver Support Program from the federal government and extensive outreach by local Alzheimer’s support groups like the Long Island Alzheimer’s Foundation). Much of the impetus behind these larger actions has been grassroots activism by Ageless Design (the Alzheimer’s Stamp Petition) and the Caregiver’s Army (Congressional testimony).

Another grassroots network has sprung up dedicated to increasing awareness of dementia and caregiving, “The Awareness Mission Group” with the MSN Support Community. Their purpose is to work to heighten awareness of care giving issues and dementia. They feel that in-depth presentations of the cold hard facts of the impacts of dementia on caregivers are in order. The personal demands on caregivers, disruptions of normal lives and resulting financial strains can be disastrous.

A major project for the "Awareness Mission Group" is an e-mail and letter writing campaign to Dateline NBC, the weekly nighttime news magazine. The goal is to flood the producers with mail asking them to produce a show or series of shows on this disease that affects millions and is expected to reach epidemic level in the near future. The e-mails started on May 27, 2002. All concerned citizens are invited to join in this campaign. Simply send your caregiving story to dateline@nbc.com with a request for a feature on issues related to dementia/care giving.

Like all good activist groups, they make participation by the rest of the population as easy as possible. They have prepared some sample letters that you can add some details and then just e-mail it to Dateline. For more information, visit http://communities.msn.com/AlzheimersSupport/awarenessmission.msnw

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.

CAREGIVING STORE: Buy Two, Get Seven Free!

Each of the seven titles in our Caregiver Education Series is available as a bound and printed booklet or as an online tutorial. We also make the information available on a CD-Rom as well.

For a limited time, we are offering unrestricted access to all of our online tutorials with the purchase of any two of our caregiving booklets. For $13.90, you can have any two booklets, plus access to the other five in the series. That is a $39.55 value for only $13.90… and that is just the cash value… When you consider the time and money that this information can save you, the value is incalculable.

Our available titles include:

  • Coping With Alzheimer’s Disease (Revised and Expanded in April 2002)
  • Choosing a Nursing Home
  • Managing Medicines Safely
  • Preventing Frauds and Scams
  • Recovering From a Stroke
  • Talking With Your Doctor
  • Understanding Incontinence

If you order any one of our record-keeping workbooks, we will also include access to all of the tutorials. Both of the workbooks are designed to help you keep track of personal information and medical affairs so that you can avoid financial stress and – worst of all – medical emergencies.

Visit ElderCare Online’s secure Caregiving Store at http://www.ec-online.net/Store/lrg.htm for product details and to place your order. Remember: All you have to do is order two of our high-quality printed booklets to receive unlimited access to the whole series on the Internet. You will receive a password and access link as soon as your order is processed.

Special for Professionals and Aging Services Organizations: Would you like to provide unlimited access to the tutorials as a benefit to your clients and the community that you serve? Contact Rich O’Boyle, Publisher for extremely cost-effective rates. Why incur exorbitant printing and mailing costs when you can direct your clients to a secure user-friendly website. We can also import all of the materials onto your website. Ask for our special non-profit rate: rich@ec-online.net

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

Casual Corner: “Growing Things:” It’s the time of year where those of us with green thumbs revel in the warmer days and dark dirt. If you enjoy gardening, join in this discussion at http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=get_topic&f=20&t=000029

Daily Challenges: “The Medication Merry-Go-Round:” Over the past few months, I have noticed a fair amount of discussion around the topic of whether, and how much, to medicate our loved ones. Member Semper Fi has started a thread where I hope we can have a frank discussion of the pros, cons, and unknowns of this important topic at http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=get_topic&f=1&t=000228

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

Early Onset Alzheimer’s Disease: “Spousal Caregivers Meeting Room:” You don’t have to be coping with Early Onset Alzheimer’s Disease to appreciate the tight friendships and support that our members share here. The issues that spouses face are different from those of adult children, so we carved out a place just for them at http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=get_topic&f=29&t=000081

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

Individuals Affected by Dementia: “Newbie Blues and Lewy Body Disease:” We have frequent discussions of less common dementias, especially Lewy Body Disease. Here is a new thread with some excellent links and resources. If you are also a Lewy Body Disease caregiver, please join in at http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=get_topic&f=27&t=000029

New Caregiver’s Meeting Room: “Rapid Progression of Alzheimer’s:” If you are caring for a loved one with Alzheimer’s Disease, nothing can be as frightening as the occasional “cliffs” that your loved one falls down. For many months they may remain stable and seem to stay well, but from time to time they may progress rapidly. Join a caregiver discussion at http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=get_topic&f=40&t=000036

Family Dynamics: In recognition of the newest articles on the website that deal with personality types and sibling issues, take a look at the numerous discussion threads on the topic of Family Dynamics. There are very few places on the Internet where you can actually connect with others in a safe and supportive environment to discuss these issues. http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=forum&f=2

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 June

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.

June 1 (Saturday 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."

June 3 (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.”

June 5 (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."

June 5 (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.”

June 5 (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.”

June 6 (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.”

June 10 (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.”

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

June 12 (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."

June 12 (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.”

June 12 (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.”

June 13 (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.”

June 17 (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.”

June 19 (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."

June 19 (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.”

June 19 (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.”

June 20 (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.”

June 24 (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.”

June 25 (Tuesday 9:00 to 11:00PM EST) “Children of Aging Parents:” Host Brian Duke from CAPS and the Institute for Aging at the University of Pennsylvania leads a discussion for family caregivers seeking understanding and resources.

June 26 (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."

June 26 (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.”

June 26 (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.”

June 27 (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.”

July 1 (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.”

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

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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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