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ElderCare Beaconä
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June 1, 2000                                                                                                                Vol. 3, No. 10
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Dear Friends,

ElderCare Online has been growing steadily for almost 3 years, as many of you know. Thank you for being such a loyal and dedicated group of caregivers. Our community is poised for even more extensive growth: we are building relationships with some of the most trusted health, aging, women and caregiving sites on the Internet. This is a testament to the high-quality knowledge and passionate community that we have built since 1997.

But our website is not just about high quality information. It is also about the real-time support, learning and sharing in our weekly discussion groups and the daily activity in the ElderCare Forum message board. It is a real confirmation to me that the bonding and community building activities that we support here are having a positive effect for so many individuals. Anyone who has joined our Wednesday night discussion groups can vouch for the positive energy and free flow of valuable information. Our new "Hot Topic" discussion threads in the Forum will help to continue these discussions throughout the week.

While we continue to gain recognition among our peer websites, we are also gaining recognition from product and service providers. I frequently get advertising and marketing requests from companies who want to be associated with our tight-knit community. To be honest, I usually reply to them with a kind "Thanks, but no thanks." I am not willing to sell off our private membership list or allow them to target you with "special offers." I have made this commitment to you many times: your privacy is secure with ElderCare Online.

But every now and then a few compatible service providers do come along. I have agreed to work with AgelessCare, an innovative healthcare company that is committed to helping caregivers improve quality of life. The agreement that we worked out over several phone calls and emails ensures that our community members – individually and as a group – will receive fair prices and benefits. No, of course I did not sell the mailing list, and he did not offer to buy it! You will see some small advertisements on the website and are encouraged to respond if you are interested in AgelessCare’s 24-hour telephone nursing services. In return, ElderCare Online members are eligible for free memberships for actively participating in our community, and the website will receive a small referral fee if you do make a purchase (to help keep the site free of charge).

I look forward to expanding the distribution of our high-quality knowledge, the communion of caregivers in real-time and threaded discussion groups and enhanced the opportunities for you to access top notch products and services. Our mission at ElderCare Online has been – and always will be – to provide a safe and secure environment where you can find information, education and support to improve quality of life for yourself and your aging loved ones.

Kind Regards,
Rich O’Boyle
ElderCare Online

INSIDE THIS ISSUE

ElderCare Forum Hot Topic: Discussing the Alzheimer’s Diagnosis With Your Loved One
Ageless Care and ElderCare Online Announce Partnership
Feature Article: Late Stage Alzheimer’s Disease
Caregiving Tip: Overcoming Isolation
Live Discussion Groups for June: ElderCare Answers and ALZwell Tonight
Subscription Information

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ELDERCARE FORUM HOT TOPIC: Discussing the Alzheimer’s Diagnosis With Your Loved One

To encourage participation in the ElderCare Forum, we have modified the software to allow non-registered users to post discussion topics and responses. I have to admit, I am a bit uneasy about this because it makes it easier for spammers and hucksters to take advantage of our members and possibly violate our privacy. But as someone once said: "The price of liberty is eternal vigilance." I will keep my eyes open for any inappropriate activity and stop it before it gets too crazy.

I still encourage you to register as a member – registered members can receive private email message from other members and will be notified when their topic is responded to. Also, only registered members are eligible for special rewards for active participation. To participate, simply register as a Forum member and join the discussion. Remember, all personal information that you provide (namely your email address) is kept confidential and is not viewable by anyone but the website administrator. If you decide not to register, do not include your email address in the text of your message if you want to remain private.

Our newest feature for the ElderCare Forum is a bi-weekly focused discussion or "Hot Topic." Important and difficult topics frequently arise during our real-time discussion groups and no one has all of the answers. Now we can use both the real-time discussion groups and the Forum message board to hold extended discussions on these topics.

Hot Topic for June 1: Discussing the Alzheimer’s Diagnosis With Your Loved One

When you receive a dreaded diagnosis of Alzheimer's Disease (or related dementia) it may force you and your family to make significant changes in your life plans and living arrangements. Sometimes your loved one is in the early stages of the disease and may not be aware that anything is wrong, or they may be in the middle stages and in denial.

Whether your loved one is a parent or spouse, it raises the difficult question of whether you should tell them of the diagnosis and prognosis.

Many of you have faced this challenge. How did you decide whether to hold that conversation with your loved one? What factors played into it and helped or hindered your decision-making? How did your loved one react if you told him/her? How did you react (guilt?) if you decided not to tell him/her?

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.

Three new Forum members from the month of May will be receiving copies of caregiving books by Pauline Sheehan (Hugs for Caregivers) or Beth Witrogen McLeod (Caregiving: The Spiritual Journey of Love, Loss and Renewal)

1. Louise, North Chelmsford, MA
2. MarylinM, Salt Lake City UT
3. Heidiiiii, New London CT

Each month we give away three free books to new Forum registrants (in addition to rewards for responding to the Hot Topic). I encourage you to register to post in the Forum – doing so allows the software to tell you which posts are new and to allow private automatic e-mails to be sent when a fellow member responds to your post. Your e-mail address is secure and never viewable by other members, so you can be sure that we are respecting your privacy.

AGELESSCARE AND ELDERCARE ONLINE ANNOUNCE PARTNERSHIP

I am very proud to announce a new affiliate partnership between AgelessCare and ElderCare Online. Both of our companies are committed to providing caregivers with information and services that enhance quality of life for both the caregiver and the care recipient. AgelessCare provides us with a commission if you purchase one of their life enhancing healthcare products or services. These referral fees help keep ElderCare Online free to all members.

AgelessCare is an Internet-based healthcare company that provides a variety of consultation services, 24-hour illness support, and other quality products for mature adult consumers, including but not limited to:

• Family caregivers
• Those with illness and chronic disease
• Those who are actively involved in their healthcare

OUR PURPOSE

With the increasing incidence of disease and stress-induced illnesses in our culture, combined with the aging of our parents, it's clear that many families are struggling to maintain stability and independence. In the United States alone, there are more than 50 million family caregivers and their care recipients who suffer from chronic diseases, aging disabilities, and other problems. AgelessCare was designed to provide holistic social, healthcare, and financial products and services to support adults of all ages, family caregivers and their family members everywhere.

OUR MEMBERS

ALL FAMILIES can benefit from our products and services. Take a look at our membership programs to learn more about AgelessCare advantages!

- To access our online store and basic services, ElderCare Online members can sign up for FREE Bronze Membership!

- Upgrade to the Silver Membership for just a few dollars per month and get FREE 24-hour peace of mind with a toll-free nurse advice hotline! Plus, get regular discounts and coupons at our online store!

- The Gold Membership includes AgelessCare 24, toll-free nurse advice service PLUS a leading national healthcare discount program, including more than 70,000 participating pharmacy, dental, and vision providers! Plus, get regular discounts and coupons at our online store!

Alzheimer’s Disease: The Late Stage is the third of three core articles on early, middle and late stage Alzheimer’s Disease. Each of these core articles includes possible behavior problems, solutions and communication tips.

Seventeen articles dealing with the medical aspects of Alzheimer’s Disease, the stages of AD, behavior problems and caregiving day-by-day appear in the Alzheimer’s & Dementia Care Channel at http://www.ec-online.net/alzchannel.htm.

CAREGIVING TIP: Overcoming Isolation

Research findings indicate that social support is a human necessity. People who are socially isolated, without meaningful relationships, are at increased risk for physical deterioration, mental illness, and even death. The term "loneliness" can mean more than one thing. Social loneliness has to do with quantity of contacts: not having enough people or enough activity in one’s life. But emotional loneliness is about quality of contacts, not having a close, intimate relationship with one other person – in other words, being "lonely in a crowd."

This Caregiving Tip includes a partial list of interventions for helping elders overcome limitations and make new friends. This is not a definitive list but it is a start. Let it help you begin thinking of what you could do at home, in an adult day care program or in a residential facility. Post other ideas and "what has worked for you" in the ElderCare Forum or share them during real-time discussion groups.

1. For the visually impaired

• Finding a "seeing-eye friend" to read to them, write letters for them, guide them through unfamiliar places, as necessary
• Teaching others to identify themselves when coming into the visually impaired person’s company
• Giving point-of-the-clock directions. "The door is at two o’clock."
• Providing lots of activities that require listening and little seeing (music, lectures, etc.)

2. For the hearing impaired

• Understanding hearing aids so that you can help your elder use theirs well
• Talking slowly enough, with a lower tone. Keeping your face turned toward the hearing-impaired person. Being sure that your face is not obscured by your hand or hair, or back-lit and in shadows.
• Providing lots of visual activities that require little hearing (crafts, closed captioned television, exercise)

3. For those with difficulty walking, climbing (if your elder lives in a care facility)

• Arranging for another resident to accompany the frail person to events if he/she needs an arm to be steady.
• Going yourself or asking another staff person to help the person get to activities.
• Be sure the resident understands the uses of the phone system: to call to find out times of activities, to chat on the phone with other residents.
• Locating some activities in the Great Rooms near the person’s apartment (e.g. a foursome for cards, a committee meeting, etc.)

4. For those with poor memory

• Asking another resident to stop by for the person on the way to an activity that you know he/she wants to attend
• Seating the forgetful person near another forgetful person who is, perhaps, less likely to be frustrated by repeated stories

5. For the shy, fearful, reclusive

• Establishing a trusting relationship with the person yourself first, before trying to introduce the person to others.
• Trying to match people who have similar backgrounds and interests.
• Building the person’s acquaintances one or two people at a time, not expecting larger groups to accomplish much bonding for shy people.
• Seating two people together in a small, quiet room instead of a large, bustling one.
• Taking care to introduce people well, giving enough background so that they can easily discover things they have in common as topics for conversation.
• Staying in the conversation yourself for a couple of minutes, in order to help them achieve some comfort before you leave.
• Finding or creating unthreatening, simple occasions for the person to spend a little time with one or two other people (walking to a meal together or walking for exercise; sitting down with two people in a Great Room or other sitting place and starting a conversation topic before leaving; inviting two people in your neighborhood to watch your "favorite program" for you and tell you about it later, etc.)
• Putting items conducive to activity in the Great Rooms to encourage involvement: large print books, picture books, magazines, games, jigsaw puzzles.

6. For the sociable, outgoing

• Being aware of their interests and trying to create opportunities for them to pursue those interests with others.
• Encouraging them to take leadership roles; then following through once you have mentioned a possibility.

LIVE DISCUSSION GROUPS FOR JUNE

This month we are beginning a new series of moderated self-help discussion sessions: ALZwell Tonight, hosted by ElderCare Online Mentor Susan Grossman. Rich O’Boyle will continue to host the popular ElderCare Answers sessions for new caregivers.

June 7 (Wednesday 9:00 to 11:00PM EST): "ElderCare Answers:" Host Rich O’Boyle leads a discussion group on the topic of "Overcoming Isolation." Isolation affects both the caregiver and the elderly care recipient. Join other caregivers to discuss ways to improve quality if life by reducing isolation.

June 14 (Wednesday 9:00 to 10:00PM EST): "ALZWell Tonight:" Host Susan Grossman leads a self-help group for caregivers, especially those dealing with dementia on the topic "Ways to make and take time for the caregiver." This topic recognizes how important it is to "get a life" for yourself and maintain your sense of well-being and balance.

June 21 (Wednesday 9:00 to 11:00PM EST): "ElderCare Answers:" Host Rich O’Boyle leads a discussion group on the topic of "Discussing the Alzheimer’s Diagnosis With Your Loved One." Caregivers are encouraged to share their experiences and weigh the pros and cons of this difficult subject.

June 28 (Wednesday 9:00 to 10:00PM EST): "ALZWell Tonight:" Host Susan Grossman leads a self-help group for caregivers on the topic of "The Hard Questions and Decisions." Topics discussed will include feeding tubes, death at home, mortuaries, calling 911, etc.

Transcripts from previous chat sessions and support 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.

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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