ElderCare Beacon Newsletter

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ElderCare Beacon
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August 1, 2000                                                                                           Vol. 3, No. 14
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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,

For almost three years we have been working to build this clunky website into a dynamic community for people caring for aging loved ones. It has grown from a guy and a cat into a guy, three cats (!), four Mentors, three Contributing Editors, a professional Forum Moderator and a Staff Writer. This isn’t a microwaved "dot.com" start-up. This is a small business dedicated to serving dementias caregivers so they can improve quality of life for themselves and their aging loved ones.

ElderCare Online will continue be a leader in service to dementia caregivers by recognizing your hard work, deepening our understanding of your challenges and providing information, education and support that allows you to give better care to yourself and your loved one.

Information: You probably noticed the addition of more and more professional writers to the site. In the past, I have done most of the writing (using my experience as a health care journalist). But increasingly we are tapping into a network of professionals who recognize that ElderCare Online is the kind of website where they want to be published. The vision and voice of ElderCare Online reflects a positive experience that acknowledges the challenges of caregiving, without making it sound like a chore. We also have very limited commercial activities on the website, unlike many health and medical sites that are trying to sell you something at every opportunity.

Education: This month we will be starting to promote our "Hot Topics" more fully. We are fine-tuning a new educational approach for the Internet. Each month we will feature a challenging topic for discussion by our members. We will provide interactive discussions with experts in both the chat room and the message board. Also, we will publish a series of articles, book reviews and resources to help you see the challenge holistically. Just look for the new Hot Topic logo on the front page – it is a red match.

Support: Our discussion groups have a minimum of chit-chat – we recognize that you have limited time and often have very specific questions. That doesn’t mean that we don’t get to know each other, support each other and have an occasional laugh or two. Don’t be turned off but your own "lack of Internet experience." The chatroom is easy to use, friendly and NOT full of perverts! I will be selecting three new participants (and three old participants) this month to receive a helpful caregiving book, compliments of ElderCare Online. I believe that once you join a discussion group, you will find camaraderie with other caregivers.

I want to warmly thank all of you for your support, advice and input since I started this site in 1997. Your encouragement and gracious Thank You’s have been such an inspiration.

Kind Regards,
Rich O’Boyle
ElderCare Online

INSIDE THIS ISSUE

ElderCare Forum: Bathroom Dysfunction
Hot Topic: Talking With Aging Parents
Feature Article: Promises, Promises by Mark Edinberg, PhD.
Caregiving Tip: Financial Assistance Available to Alzheimer’s Caregivers
Caregiver Support Network: New Poetry from Dorothy Womack
Respite Rewards: Promotion Recipients for July
Live Discussion Groups: Schedule for August
Subscription Information

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ELDERCARE FORUM: Bathroom Dysfunction

Many caregivers can relate to the common problem of dysfunctional bathroom behavior. This is a kind way of saying that you may find yourself cleaning up poop and urine in the most unconventional places – in potted plants, corners of rooms or even neatly tucked away in drawers. While we may shudder when we hear other people’s stories, it truly doesn’t hit home until our loved one leaves us a little gift. YUCK!

Not long ago, MJS posted in the ElderCare Forum her personal story of inappropriate toileting behavior. Several of you posted responses, as did our Alzheimer’s & Dementia Care moderator, Barbara Bridges. I would like to encourage you to review the comments in the Forum and post your own examples of solutions to the problem. Remember, this is a key area where other caregivers need your help. Incontinence and dysfunctional bathroom behavior frequently lead to caregiver stress and burnout, and ultimately to early placement in a nursing home for the loved one.

You can review the discussion at http://www.ec-online.net/ubb/Forum1/HTML/000018.html. I will be offering a Respite Reward to two individuals who post to this discussion thread as a way of thanking you for your time and input.

HOT TOPIC: Talking With Your Aging Parents

Throughout the month of August, we will be featuring a series of articles and interactive discussions on ElderCare Online the hot topic of "Talking With Your Aging Parents." All too often we find it next to impossible to start a conversation with our aging parents about difficult issues. Maybe we are concerned with our loved one’s health, or we see what we think are the early signs of memory loss. Perhaps we think our loved one is making some risky financial planning decisions. Sometimes, we just don’t have the communication skills or guts to raise the topics.

Mark Edinberg, PhD., who you have seen on the site before as an author and Contributing Editor, will host a real-time discussion on the topic of "Making and Keeping Promises to Your Aging Loved Ones." Join us on Wednesday, August 2 from 9:00PM to 11:00PM http://www.ec-online.net/chat.htm. Bring your questions, comments and experiences dealing with issues such as "promising never to put your loved one in a nursing home." While we will focus on "promises," all topics related to the Hot Topic are open for discussion.

We will also be featuring several articles and book reviews on our Hot Topic. Our first article, "Promises, Promises," is featured in this newsletter (see below). Be sure to read it before joining the chat session! Additionally, our newest Staff Writer, Phyllis Laudano, will be reviewing the popular book, Coping With Your Difficult Older Parent by Grace LeBow (available next week). Members like you will be sharing their insights, challenges and stories in the ElderCare Forum.

Additionally, Mark will be our guest moderator in the ElderCare Forum message board. He will respond to your posted questions and comments. Note: Mark is a practicing psychologist and counselor, so he can not answer your personal questions directly on the Internet. However, he can talk about the general issues that you raise and show you some techniques for addressing them.

Please post your experiences and questions to the ElderCare Forum to help other caregivers in this particularly painful challenge at http://www.ec-online.net/cgi-bin/ubb/Ultimate.cgi?action=intro. As a special incentive, one respondent will receive a reward from ElderCare Online (usually a caregiving book or free gift from one of our sponsors).

FEATURE ARTICLE: Promises, Promises by Mark Edinberg, PhD.

While not necessarily legally binding, promises we make to our family members bind us in many ways. Guilt, poor decisions, potentially harmful decisions, and harm to family members can all come out of promises made in the heat of a crisis, at a moment when one is fearing a greater harm to another family member, or even simply made in ignorance of what the promise might entail in the long run. Not making a promise can be difficult and require forethought about the situation. Reworking a promise once made is also an option to handling these dilemmas. Sometimes, we sometimes need a way to rework a promise when the person who extracted the promise from us is no longer able to understand us or has died.

Some common promises made to older relatives are:

  • Promising to "Never put me in a nursing home."
  • Promising never to sell the family business
  • Promising never to sell the family home
  • Promising to "take care of a handicapped or incapacitated relative
  • Promising to continue a family feud (e.g. "Never talk to cousin Ned because of what he did in 1943, and promise me you will never forgive him or his children.")
  • Promising to not take a specific course of action about a stock or investment (e.g. "Never invest my money in banks").

You can read the entire article (and others on the general topic of "Talking to Your Aging Parents") in the Family Dynamics section of the Home Care & Independent Living Channel at http://www.ec-online.net/homechannel.htm.

Mark Edinberg, PhD. is a psychologist, author, organizational consultant, and part-time jazz pianist who has been working in the field of Gerontology for 30 years. He has been a professor at the University of Nevada, Reno and the University of Bridgeport, for the last decade, and is in private practice primarily working with older adults and their families. Currently he maintains a private practice in Fairfield, CT, consults with nursing homes, organizations and families on a range of topics. He teaches part-time at Fairfield University. Mark is an expert in Intergenerational Mediation – working with families on matters ranging from health to asset transfers). He also works in the fields of sports psychology and organizational training. Mark is the author of three books, including "Talking with Your Aging Parents."

CAREGIVING TIP: Financial Assistance Available to Alzheimer’s Caregivers

The American Health Assistance Foundation (AHAF) has established the Alzheimer's Family Relief Program (AFRP) to provide direct financial assistance and resources for the continued care and support of the Alzheimer's patients and their caregivers. Caregivers can apply for a no-strings grant of up to $500 for expenses such as short-term nursing care, home health care, respite care, adult day care, medications, medical or personal hygiene supplies, transportation, and other expenses related to care for a patient with Alzheimer's Disease.

  • Applications are funded based on established need and on a first-come, first-served basis. First-time applicants will receive priority treatment.
  • Liquid assets (which include cash, checking and savings accounts, money market accounts, stocks, bonds, and mutual funds) of the patient (or patient and caregiver if the patient is the caregiver's dependent) may not exceed $10,000. Liquid assets do not include the patient's car or house. However, all of the patient's assets will be taken into consideration in determining the urgency of need.
  • Applications must include original signature and a corroborating statement from the patient's physician, health professional or social worker before they are presented to the AFRP Review Committee for consideration for funding.
  • The extent to which assistance can be provided, as well as the number of patients who can be helped, is determined by the availability of funds. At times, it may be necessary to place an approved request on a waiting list until funds become available.

For more information and an application, please visit the AHAF website at http://www.ahaf.org or contact Jarmel Wilson, LSWA, AFRP Manager, at jwilson@ahaf.org or call 1-800-437-2423.

CAREGIVER SUPPORT NETWORK: New Poetry from Dorothy Womack

ElderCare Online Mentor Dorothy Womack has added several new poems to her personal pages in the Caregiver Support Network. Dorothy is a noted poet who creates beautiful inspirational pieces based on her experience as an Alzheimer’s caregiver.

The Caregiver Support Network includes access to the ElderCare Forum message board, links to the personal pages of our mentors, a directory of mailing list support groups and a link to "Ask Casey" a caregiving question. Visit the personal pages of all of our caregiving Mentors in the Caregiver Support Network at http://www.ec-online.net/Community/Activists/can.htm.

LIVE DISCUSSION GROUPS: Schedule for August

Our discussion groups have a minimum of chit-chat – we recognize that you have limited time and often have very specific questions. That doesn’t mean that we don’t get to know each other, support each other and have an occasional laugh or two. Don’t be turned off but your own "lack of Internet experience." The chatroom is easy to use, friendly and NOT full of perverts! I will be selecting three new participants (and three old participants) this month to receive a helpful caregiving book, compliments of ElderCare Online. I believe that once you join a discussion group, you will find camaraderie with other caregivers and make it a part of your schedule to attend.

August 2 (Wednesday 9:00PM to 11:00PM EST) "ElderCare Answers:" Special Guest Mark Edinberg, PhD. Will lead a discussion on "Making and Keeping Promises to Your Aging Loved Ones." We will discuss the issue of promising your loved one that you will never put them into a nursing home and other common promises that should be clarified and may need to be revisited.

August 3 (Thursday 9:00 to 11:00PM EST) Host ZuZu leads a self-help group that emphasizes sharing experiences and best practices. This week’s topic is: "Food tips." Share your ideas for making nutritional milkshakes, managing swallowing difficulties and small portions, etc.)"

August 9 (Wednesday 9:00PM to 11:00PM EST) "ALZWell Tonight:" Host Susan Grossman leads a self-help group for caregivers.

August 10 (Thursday 9:00 to 11:00PM EST) Host ZuZu leads a self-help group that emphasizes sharing experiences and best practices.

Transcripts from previous discussion groups 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 eldercareonline@hotmail.com. 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.

RESPITE REWARDS: Promotion Recipients for July

Each month we offer our valued community members useful caregiving books and products from our sponsors. The Respite Rewards are our way of saying Thank You for sharing your wisdom and joining our community.

Some of you have received the e-mail notice that you won, but never responded! You have one month to claim your reward. If you don’t, then I will be forced to donate the book to another caregiver or caregiving organization J

Newsletter Subscribers:

  1. Joseph M., New York, NY
  2. Joanne G., Mountain Home, ID
  3. Liz W., Silverton, OR

Forum Participants:

  1. mimi
  2. mjs

SUBSCRIPTION INFORMATION

The ElderCare Beacon is published bi-weekly by ElderCare Online. To subscribe to this free newsletter, go to the main page of the website at http://www.ec-online.net and click on the button on the right hand side of the page. Add your e-mail address to the ListBot box and then fill out the basic demographic information. You do not need to include information that you think is too personal. A confirmation e-mail will be sent to you. Please reply to it to complete your subscription.

To unsubscribe from this list, simply (1) reply to this email message with the word "UNSUBSCRIBE" in the Subject: line, and (2) include your e-mail address in the body of the message. Many e-mail programs do not put your complete name@ISP.com in the To: line, so it is impossible to track down your address.

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