ElderCare Beacon Newsletter

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ElderCare Beacon
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February 1, 2001                                                                        Vol. 4, No. 3
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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,

This issue of the newsletter is focused on Our Community. From Day One, we have strived to make ElderCare Online an innovative support system. I think that we have largely succeeded. The Internet has changed the way that caregivers relate to each other and to their caregiving journey. Not too long ago, caregivers could only contact each other through support groups or chance encounters at Church or through neighbors. Alzheimer’s Disease caregivers tended to have better support systems through local chapters of the Alzheimer’s Association and smaller organizations dedicated to helping those touched by the disease.

Our support system of message boards, chatrooms, newsletters and guest speakers is reaching out to those caregivers who have Internet access. But we still have a long way to go since not everyone has a computer or the time to visit with us here. We also know that the Internet does not meet all support needs – we still need to connect in person.

Throughout the month, we will focus on "Support On and Off the Internet" as our Hot Topic. To be honest, much of what we will highlight will be online services. However, we can point people to great resources through local Alzheimer’s Disease support groups and our Neighborhood Networks of local services. As always, you are encouraged to share ideas that may help other find the support and resources they need.

I am pleased to welcome another Community Moderator to the ElderCare Forum. Sharon Shaw, known in many places on the net as Puffin, is a college administrator and public relations professional who has worked on the Internet for years as a virtual community builder, a host in virtual communities, and as a trainer of hosts. For the past year and a half she hosted and consulted for PlanetRx, building an Alzheimer's caregiver and affected forum. "My experience working with caregivers and with Alzheimer's patients has been one of the most important experiences of my life," she says. "These heroic men and women have taught me a great deal about living, laughing, and learning how to manage when things seem most grim." Sharon joins me, Barbara Bridges and Edyth Ann Knox in hosting the message boards.

Our chatroom will be particularly busy this month. We are adding about five more sessions throughout the month, including a daytime session on Wednesdays and another evening session on Mondays. See below for information on the latest production of "Alzheimer’s Answers" with Dr. Lawrence Honig from Columbia University’s Taub Institute. The topic is "Less Common Dementias: Understanding the Differences to Improve Care," and will surely prove to be useful to those coping with rarer dementias such as Pick’s Disease or those who have questions about Alzheimer’s Disease.

Our Monday night discussion session will be hosted by Julie Siri, a grief and bereavement specialist from Healing Loss Bereavement Services (http://www.healingloss.com). I am so happy that Julie sent me an e-mail one afternoon – from there we struck up a friendship and will be working on some great projects for caregivers. Starting this month, Julie will host a bimonthly chat on Grief and Bereavement Issues. You can read more about Julie below in our discussion group schedule.

Finally, we will be inviting a group of nursing students from Pace University to participate and observe in our chatroom and message board. Our collaboration with Pace is intended to give these future nurses insight into what life is like outside the four walls of a hospital. Please welcome them during our chat sessions. I will also be joining them in their classes to share our experiences of how the Internet is used to improve care for people who are homebound with chronic illnesses. This type of partnership is unique among caregiving sites and serves to elevate the quality of the support system that we are building.

Kind Regards,
Rich O’Boyle
ElderCare Online

INSIDE THIS ISSUE

ElderCare Forum: We Laugh to Survive
Hot Topic: Support On and Off the Internet
Respite Rewards: Caregiving Book Recipients
Caregiving Tip: Sundowning by Edyth Ann Knox
Feature Articles: Support Groups Are Essential to Caregiver Wellbeing
Alzheimer’s Answers: Less Common Dementias: Understanding the Differences to Improve Care
Top AD/Caregiving Sites: Leave ‘Em Laughin’ Darlin’ by Brenda Race
Live Discussion Groups: Schedule for February
Subscription Information

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ELDERCARE FORUM: "We Laugh to Survive"

We have added a new section to the ElderCare Forum: "We Laugh to Survive." This is a casual place for us to post funny anecdotes about our loved ones, jokes (sometimes off-color) and just about anything that makes you laugh during the course of the day.

Some ground rules:

  • nothing racist, misogynist or bigoted
  • nothing pornographic (I’ll know it when I see it!)
  • mark all "adult theme" jokes with XXX in the title
  • use your best judgment

When posting anecdotes about our loved ones, please keep in mind that the purpose is NOT to mock or laugh at them and their disease. So many caregivers have related funny stores – acknowledging the silliness that we encounter in the course of the thirty-six hour day can help us find light in darkness and a smile in sadness. Use your best judgment about posting your story AND responding to other caregiver stories. Flaming and harassment will not be tolerated.

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

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.

Click here to go to the ElderCare Forum…

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...
Visit the Caregiver Support Network...

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.

I am rewarding five new members and five previous members with copies of Beth Witrogen McLeod’s acclaimed book "Caregiving: The Spiritual Journey of Love, Loss and Renewal." Please reply to rich@ec-online.net within the next ten days to receive your copy. I will need your mailing address and e-mail address to confirm your book. Congratulations!

  • Kathleen, Petersburg, IN
  • Ces, TN
  • Judy, Portage, IN
  • Sugarlips, Fremont, CA
  • Dry
  • SarahB, Chocowinity, NC
  • Sherrie
  • Juneb
  • Mark, Jacksonville, FL
  • Penelope90, Grapevine, TX

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…

CAREGIVING TIP: Sundowning by Edyth Ann Knox

ElderCare Online Mentor Edyth Ann Knox has written another practical tip for people caring for loved ones with dementia. "Tips on… Sundowning" will come in handy if your loved one starts to experience agitation, pacing and frustration at the end of the day. Sundowning used to cause consternation among caregivers because it was so poorly understood. Now we have a better understanding of the causes and potential solutions to this syndrome.

You can access the Caregiving Tip at in the Alzheimer's & Dementia Care Channel.

FEATURE ARTICLE: Support Groups

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

ALZHEIMER’S ANSWERS: Less Common Dementias: Understanding the Differences to Improve Care

The Taub Institute for Research on Alzheimer’s Disease and the Aging Brain and ElderCare Online are collaborating to provide caregivers with the latest production in our year-long series of online educational sessions on dementia topics. Each month, ElderCare Online (http://www.ec-online.net) will produce an hour-long 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.

This month’s session will be conducted on Thursday, February 8 from 1PM to 2PM on the topic of "Less Common Dementias: Understanding the Differences to Improve Care." Dr. Lawrence Honig, 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 askcasey@ec-online.net or read the transcript of the session the following day. Future topics and group leaders will be announced in this newsletter.

Topics to be addressed include (but may not be limited to):

- Fronto-temporal dementias (Pick's Disease), stroke-related dementia, parkinsonian syndromes (Dementia with Lewy Bodies)
- Differences in treatments and responses to therapies
- Differences in pathology
- Differences in disease history and progression

Lawrence Honig, M.D., Ph.D. is an Associate Professor of Clinical Neurology at Columbia University College of Physicians and Surgeons (New York, NY). He is affiliated with the Alzheimer’s Disease Research Center of Columbia University which hosts the Taub Institute for Research on Alzheimer’s Disease and the Aging Brain at the Gertrude H. Sergievsky Center. He is also works in the Department of Neurology (Division of Aging and Dementia).

Dr. Honig moved to Columbia University in Fall 2000, where he is actively involved in the Alzheimer’s Disease Research Center. His activities include patient care, clinical research, and laboratory-based research addressing nervous system degeneration. Previously, he was in the Department of Neurology at the University of Texas Southwestern Medical Center in Dallas, where he was also a senior investigator in the Dallas Alzheimer’s Disease Center. He obtained his medical degree from the University of Miami (Florida), his Ph.D. from the University of California at Berkeley, and underwent medical internship and neurology residency training at Stanford University Medical Center (California).

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.

Send in advance questions to askcasey@ec-online.net

TOP AD/CAREGIVING SITES: Leave’em Laughin’ Darlin’ by Brenda Race

In keeping with the addition of our new ElderCare Forum topical area and our emphasis on support services this month, I have selected a humorous caregiving site for honorable mention in this issue.

"Leave’em Laughin’ Darlin’" is a welcome walk on the wild side for caregivers. So many personal sites are rich in tips, information, human interest and referral links. But too few of them really tickle your funny bone. Brenda has done a great job with her too-small website. I wish she would post more stories!

My favorite story on her site is "The Couch Fluffer." How many of us have had a similar experience with a loved one with dementia (or just too many cocktails)?

Don’t waste any more time. Visit Brenda’s site at http://www.geocities.com/brace03/giggles.html. You are then welcome to share your own stories in the ElderCare Forum’s "We Laugh to Survive" section at http://216.122.139.136/cgi-bin/Ultimate.cgi?action=intro.

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 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 1 (Thursday 9:00PM to 11:00PM EST) "ElderCare Answers:" Host Rich O’Boyle hosts a discussion group on the topic of "Incontinence & Hygiene."

February 5 (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 7 (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 "Welcome New Caregivers."

February 8 (Thursday 1:00 to 2:00PM EST) "Alzheimer’s Answers:" Dr. Lawrence Honig, M.D., Ph.d., from Columbia University’s Taub Institute leads a question and answer forum on "Less Common Dementias: Understanding the Differences to Improve Care." You may submit advance questions to askcasey@ec-online.net. NEW

February 8 (Thursday 9:00PM to 11:00PM EST) "ElderCare Answers:" Host Rich O’Boyle hosts a discussion group on the topic of "Identifying Support Resources"

February 14 (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 14 (Wednesday 9:00 to 11:00PM EST) "ElderCare Answers:" Host Rich O’Boyle hosts a discussion group on the topic of "The Greatest Love of All."

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.

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