ElderCare Beacon Newsletter


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ElderCare Beacon
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February 15, 2001                                                                      Vol. 4, No. 4
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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,

Many websites contain all of the usual technology (message boards and chatrooms) and therefore consider themselves "communities." A community is a group that shares common interests. Technology in and of itself can only be used to facilitate interaction within the community. For the past 3 years, we have been building a real community online. Yes, we have technology tools, but most importantly we have people: mentors, moderators, experts and frequent visitors who make up the core of our group.

The ElderCare Forum message board has never been busier. We are much more active about responding to queries, posting interesting news items and referring people to practical articles on topics of interest. We have space for you to introduce yourself and get to know other community members. Furthermore, we have made some formatting changes to make it a bit more user-friendly.

Our chatroom has been especially active. We have had several new people join our group. We also have added a few more sessions (Monday nights and Wednesday afternoons). It is always hard for caregivers to carve time out of their busy schedule to attend a chat session. I assure you that it will be worth your time if you can make it to one of these sessions. It is not idle chitchat. We have focused topics and share our ideas and expertise with each other. Where else can you find other people who are also in intense caregiving situations?

Later this month, we will be opening up our community to nursing students from Pace University in New York City. I have been working closely with Dr. Joanne Singleton at Pace for several months now. Our goal is to help educate the nursing students on how technology can help caregivers to maintain quality of life for their loved ones. Please join us later this month in each of our regular chat session – these students will also likely have plenty of good ideas for you.

Kind Regards,
Rich O’Boyle
ElderCare Online

INSIDE THIS ISSUE

Alzheimer’s Answers: Less Common Dementias Transcript Available
ElderCare Forum: News and Research Updates
Hot Topic: Support On and Off the Internet
Respite Rewards: We Laugh to Survive
Feature Articles: Intimacy, Marriage and Alzheimer’s Disease
Solution Sets: Tax Planning 2000
Book Review: My Mother’s Voice by Sally Callahan
Caregiver Support Network: Poems by Dorothy Womack
Live Discussion Groups: Schedule for February
Subscription Information

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ALZHEIMER’S ANSWERS: Less Common Dementias Transcript Available

We had an excellent turn-out for our latest expert chat session on February 8, "Less Common Dementias: Understanding the Differences to Improve Care." Dr. Lawrence Honig, a leading expert on Alzheimer’s Disease research and treatment, answered questions non-stop for an hour, and then responded to all of the emailed questions that we didn’t have time for. Thank you to Dr. Honig and all those at the Taub Institute who make these sessions possible.

You can read the complete transcript at http://www.ec-online.net/Community/transcript20801.htm

ELDERCARE FORUM: News and Research Updates

You will also notice that some categories have been added and that we will be pruning the older discussion threads – the board is getting so full that it is hard to find some topics. Whenever posting to the Forum, try to add on to existing threads rather than starting new ones. It helps to manage the board and makes it easier for caregivers to find things of interest.

One of the newest categories is "News and Research Updates." The moderators and I will be posting press releases, outside articles and other items of interest to the Forum. We hope that it will help you stay up-to-date on scientific and medical advances. I will also be writing some original news articles based on current events. Furthermore, look for interviews with experts in the news.

Click here to go to the ElderCare Forum… http://216.122.139.136/cgi-bin/Ultimate.cgi?action=intro

HOT TOPIC: Support On and Off the Internet

As you can see from the last two newsletters and as you will see in the next four weeks, ElderCare Online continues to grow dramatically. I must admit that I have not been as effective in planning out our monthly Hot Topics. This type of "programming" requires a lot of lead time and coordination. To be honest, I also need some feedback from you folks. What topics would you like to see?

So this month, I am featuring an article I recently wrote on support groups. We will use this as a foundation for our discussions. My goal this month is to steer you individually and in groups to the most appropriate type of support and discussion groups. We have added several more chat groups to this site which compliment the existing Caregiver Support Network and Neighborhood Networks. What more do you need? Please let me know!

Our resources include:

  • Links to Alzheimer’s Disease Support Groups that you can attend in person;
  • Links to other caregiving websites that feature chats and support services;
  • Our own message board and chat schedule;
  • Information on finding the best support services for you; and
  • Mentors who can help to steer you to the right information and support services.

Think of this month’s Hot Topic as a launching point to the numerous support-related resources on ElderCare Online and the many friendly caregiving sites affiliated with the "Top Alzheimer’s/Caregiving Sites" directory. If you have an idea for a new type of resource, please let me know! If you really hit me with a great idea, I will put together a special Care Package as a Thank You.

Visit the ElderCare Community Center… http://www.ec-online.net/Community/communit.htm

Visit the Caregiver Support Network… http://www.ec-online.net/Community/Activists/can.htm

RESPITE REWARDS: "We Laugh to Survive"

In January, we have had one of the busiest months to date in the ElderCare Forum, with approximately a 25% increase in the number of registered users and a similar increase in the number of postings. Please continue to add your stories, questions, responses and insights. This is the heart of our community.

Throughout the month of February, I will select five members who share their stories in the new "We Laugh to Survive" Forum. Just share your anecdotes and humor to the ElderCare Forum, particularly stories about caregiving humor, stories about your loved one and reality vs. unreality.

Click here to go to the ElderCare Forum…http://216.122.139.136/cgi-bin/Ultimate.cgi?action=intro

FEATURE ARTICLE: Intimacy, Marriage and Alzheimer’s Disease

Intimacy, Sexuality and Alzheimer’s Disease by Rich O’Boyle

Talking about intimacy and sexuality is never easy, from the time we are youngsters until we are very old and wise. For some, sex is enjoyable, for others it is embarrassing and for others still it is frightening. Nevertheless, sex is part of our lives, and when combined with Alzheimer’s Disease, it can problematic.

It is important to distinguish the differences between intimacy and sexuality to better address the challenges created by dementia. Intimacy is a "warm friendship," while sexuality is the use of words, gestures, movements or activities that attempt to display physical affection. Sexual activity in healthy relationships helps people to stay in good physical condition and helps to reduce physical and psychological stress.

The article addresses the following topics:

  • Dementia’s Impact on Sexual Relationships
  • Rediscovering Loving Relationships
  • The Power of Touch
  • Additional Readings and Resources

You are encouraged to share your thoughts, experiences and wisdom in the ElderCare Forum. This is a little-discussed subject where we can all benefit from open discussion. You can read the complete article at http://www.ec-online.net/Knowledge/Articles/intimacy.html and link to a discussion topic.

SOLUTION SETS: Tax Planning Assistant 2000

This is that dreaded time of year – we are at the low point of winter AND we have to start organizing our tax return information. Caring to a loved one often means helping with their taxes as well. U.S. individual taxes are due by midnight on Monday, April 16.

ElderCare Online’s Tax Planning Assistant 2000 takes the hassles out of filling out and filing tax returns. Our newest interactive assistant directs you to online resources where you can get the necessary tax forms, instructions and publications. It also includes several time- and money-saving tips for taxpayers directly from the IRS and one of the most prestigious tax and accounting firms, Ernst & Young.

You can fill out and file your taxes the old fashioned way – with pencil and abacus – or you can use planning software purchased from Amazon.com. Since this is the Internet Age, we provide links to the best software packages and access to online reviews and rebates. By buying books and software through ElderCare Online, you help to keep the site free of annoying banner advertisements and support this free newsletter.

The Tax Planning Assistant features:

  • comprehensive packages of U.S. Federal tax forms, instructions and publications that you can easily download and print off for free;
  • forms for home health aids, elderly tax credit and other senior citizen tax issues;
  • easily understood tax tips, common mistakes and overlooked deductions from the experts;
  • state-by-state links to tax agencies for their forms and resources;
  • links to local counseling and assistance programs for elderly taxpayers;
  • online purchasing of software packages and books to speed up your planning and reduce the chances of mistakes;
  • packages of forms and instructions for previous tax years; and
  • additional online resources.

Access the Tax Planning Assistant before April 16 on ElderCare Online at http://www.ec-online.net/Knowledge/SolutionSets/taxplanasst00.htm.

BOOK REVIEW: Featured Book

My Mother’s Voice by Sally Callahan
Review by Phyllis Laudano

My Mother’s Voice is an extraordinary book written by an extraordinary individual. What makes author Sally Callahan so unique is the unconditional and selfless love, which guided and controlled all she did during her agonizing fifteen-year journey as her mother’s primary caregiver-surrogate. It was this love that helped her to focus purely on her mother’s needs and wishes while dealing with the formidable task of caring for her mother. As she helplessly witnessed her mother’s slow deterioration from the ravages of Alzheimer’s disease, she was also suddenly thrust into a world fraught with difficult medical, legal and financial decisions, conflicts with siblings and at time medical professionals, and the physical and emotional exhaustion which plagues the caregiver on a daily basis.

To read the complete review of this book, visit the ElderCare Bookstore at http://www.ec-online.net/Connections/bookstore.htm

CAREGIVER SUPPORT NETWORK: Poems by Dorothy Womack

We have added several more inspirational poems by Dorothy Womack to the Caregiver Support Network. Many caregivers find that her work speaks to them and the spiritual journey that is part of caregiving. You can read her extensive collection of poems and link to her own websites at http://www.ec-online.net/Community/Activists/can.htm.

LIVE DISCUSSION GROUPS: Schedule for February

We have several new chat sessions. Please take a look at our new schedule and join one of the groups if you can work it into your schedule.

NEW Monday Night "Healing Loss:" Julie A. Siri, MA, MSW, LCSW, is our newest chat host. Every other Monday evening, she will leads a discussion group for caregivers who are grieving – either while they are still caring for their loved one, or after s/he has died. It is our intent that you will find this site a place of kindness and understanding. Our mission is to provide comfort and hope to those who are grieving. Julie is in Claremont, CA and operates Healing Loss Bereavement Services (http://www.healingloss.com). Please welcome Julie.

NEW Wednesday Afternoon "Coffee Talk:" Host Rich O’Boyle facilitates a "getting to know you" social group for new and experienced caregivers. This session is for all of you caregivers who find the evening sessions too late and would like to connect with others during the day. While this will be a casual meeting, I do intend to get all of you engaged and talking :-)

February 15 (Thursday 9:00PM to 10:00PM EST) "ALZwell Tonight:" Host Susan Grossman leads a self-help group for dementia caregivers.

February 19 (Monday 9:00 to 11:00PM EST) "Healing Loss:" Host Julie Siri leads a discussion group for people who have lost a loved one to premature death, Alzheimer’s Disease, or other illness. NEW

February 21 (Wednesday 1:00 to 2:00PM EST) "Coffee Talk:" Host Rich O’Boyle welcomes caregivers for a social and networking discussion group on the topic of "Meeting Other Caregivers." NEW

February 21 (Wednesday 9:00 to 11:00PM EST) "ElderCare Answers:" Host Rich O’Boyle hosts a discussion group on the topic of "Financial Planning."

February 22 (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 "Spousal Caregiving"

February 28 (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. From now on, we will only be archiving the transcripts of guest speakers.

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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