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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July 1, 2001                                                                                 Vol. 3 No. 12
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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,

Who am I and why am I here?

We have had such an increase in the number of new members and newsletter subscribers that I thought it would be a good idea to reintroduce myself and some of the people who make ElderCare Online and ALZwell Caregiver Support possible. For those of you who know us already, please continue reading or pop down to the bottom of the welcome letter for some quick announcements.

I am the founder of ElderCare Online and its parent publishing company, Prism Innovations, Inc. Earlier this year, Prism took over responsibility for maintaining and publishing the ALZwell Caregiver Support website as well. Prism also publishes the Caregiver Education Series and products for eldercare professionals. In the future you will be hearing more about Prism Innovations. Prism is the umbrella under which we provide our various published and media services. In other products created by Prism, you will find the same quality and enthusiasm that you find in the ElderCare Online and ALZwell websites. It is the same people with the same vision. Our goal has always been to provide caregivers with the information, education and support that they need to improve quality of life for themselves and their aging loved ones. You have heard that slogan over and over – I stay completely focused on it every day.

The name “Prism” relates to our vision that the websites and products that we create can serve as a way to bring together diverse people and elements into a greater whole. The idea that the colors of the spectrum can be combined to create pure white light; and that the pure white light can be broken down into unique and beautiful elements.

As the publisher of our websites, I oversee the style and voice of this newsletter and the numerous articles and booklets that we publish. I am also the website designer and updater. I have a background as a journalist and technology consultant. We have several writers who contribute regularly to our library, including caregivers and professionals like Beverly Bigtree Murphy, Mark Edinberg, Joanne Singleton, Nancy Bryce, and Avrene Brandt, among others. Chip Gerber writes a regular column for the newsletter. Franklin Cassel and Edyth Ann Knox provide answers to caregiver questions and insightful caregiving tips.

Our community activists really make our websites the amazing support system that they are. Our Forum moderators, Vicki Gardner AKA Sugarlips, Edyth Ann Knox AKA Bubblehead, Julie Siri AKA BlueFeather, and Peter Silin, provide a sincere and supportive foundation on which our community has been built. The professionals from Columbia University who host the Alzheimer’s Answers chat sessions are to be commended for their professionalism and generous community outreach. Sharon Shaw AKA Puffin and Barbara Bridges gave our community a jump-start and helped set the tone as casual, fun, supportive, and informative. The positive energy in the Forum and in the chatroom is hard to find elsewhere on the Internet.

Our members (those who subscribe to this newsletter, those who post to the Forum, and those who surf through anonymously every day) are our top priority. We channel all of our energies into serving your needs and creating this oasis on the Internet. It is all of these people – as individuals and as a group – who make such a high-tech medium like the Internet actually feel more like an in-person support group or a group of old friends having coffee.

We are making some changes to our chat schedule to offer more opportunities to connect with our mentors and other caregivers. The schedule is a little bit more complicated, but it actually offers two additional sessions every month. We welcome Vicki Gardner (AKA Sugarlips) as our newest hostess. She will continue to serve as moderator of the Forum, but will also host a chat session. Everyone else will continue to host their regular sessions (but at different times). I will host a few less each month to give others the chance and to spend more time on the publishing side of the business.

I want to thank everyone who participated in our website improvement survey. Your responses were enlightening to say the least. There was so much positive feedback, as well as targeted suggestions for improvement. In the coming weeks and months you will see them implemented. I have sent out notices to those of you who will receive your complimentary music CDs. Some of you are probably listening to the music right now.

For some reason, this is a particularly long newsletter. If your email program breaks it apart and you don’t receive the entire issue, just go to the front page of ElderCare Online where you can read the entire newsletter online.

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

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INSIDE THIS ISSUE

Caregiver Education Series: Improving the Doctor-Patient Relationship
Caregiving Tip: Saving Money on Prescription Drugs
The Forum: Caregiver Meeting Rooms
Keepin’ Up With ALZwell: New Questions and Answers, Stories
Top Alzheimer’s/Caregiving Websites: Ageless Design Store
Feature Article: Estate Planning: The Basics
Book Reviews: Nursing Home Books
Activist Alert!: CareGivers FunFest
Chat Schedule: Updates for July
Subscription Information

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CAREGIVER EDUCATION SERIES: Improving the Doctor-Patient Relationship

Doctors have always held an almost mythological position within our society as “all-knowing” and powerful professionals. This perception has created a barrier to a positive relationship between medical doctors and family members. A recent study of caregivers found that family members with Alzheimer's disease are not receiving all the information they want from primary-care physicians as they deal with the challenges of caring for a loved one who has Alzheimer's Disease.

Not having all the information they need decreases their ability to make sure family members are receiving the most effective treatment and care, and increases their guilt and frustration as they try to figure out how to cope with the disease. To make matters worse, doctors think they are providing caregivers the information they want and need. Something in the communication process is hindering caregivers from getting the information in a way that is useful to them.

(see http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=get_topic&f=26&t=000007 for more details of the survey).

Prism Innovations and ElderCare Online have developed a series of guides and workbooks that are designed to improve the relationship between the caregiver and the doctor. The “Talking With Your Doctor” Learning Resource Guide and the “Prism Medical Manager” workbook are two essential tools for the family caregiver. The Guide is a 20+ page booklet that provides practical advice and ideas on working with medical doctors, including tips on discussing sensitive subjects, finding the right doctor for you and your loved one, and making the most of the precious little time that they spend with you. The Workbook is a handy tool to help you keep track of medical appointments, doctor’s orders, questions you have, and medication schedules.

Our booklets and workbooks are intended to help you strengthen your relationship with your healthcare providers. These booklets and workbooks can save you time and money and improve your loved one’s quality of care by making you better prepared. Costly or fatal medical errors can be avoided with our tools by helping you to manage healthcare prescriptions and instructions. For only a few dollars, you can get the peace of mind that only the mastery of your loved one’s medical condition can bring.

The “Medical Care Companion” offers two guides (“Talking With Your Doctor” and “Managing Medicines Safely”) and the Prism Medical Manager workbook for only $19.95. If you order before July 15, we will include a free copy of the “Preventing Frauds and Scams” Learning Resource Guide.

You can order in our secure online store at http://www.store.yahoo.com/eldercareonline/medicalmanager.html

Prism’s Caregiver Education Series is a set of seven booklets and two workbooks. Our Learning Resource Guides have been developed with the goal of enhancing your understanding of the numerous complex area of caregiving. We believe that if you have a greater sense of mastery over the skills of caregiving, you can reduce stress and improve quality of life for both yourself and your aging loved one.

The Prism Care Assistant Workbooks have been designed to reduce the complications of managing a loved one's personal affairs. By minimizing the distractions associated with handling someone else's day-to-day affairs, you can spend more quality time with your loved one and their healthcare professionals and less time trying to juggle too many responsibilities.

Please visit our online store at http://www.store.yahoo.com/eldercareonline for ordering information. Remember that 20% of all purchases through July 31, 2001 will result in a donation to the CareGiver’s FunFest!

CAREGIVING TIP: Saving Money on Prescription Drugs

There has been a lot of discussion about adding a prescription drug benefit to Medicare. But if I were you, I wouldn’t hold my breath. I began to do some research into prescription drug assistance programs managed by each of the states in the US. I started to build my own directory, but then stumbled across this outstanding resource maintained by the National Council of State Legislatures.

At least 28 states now have established or authorized some type of program to provide pharmaceutical coverage or assistance, primarily to low-income elderly or persons with disabilities who do not qualify for Medicaid. Most programs utilize state funds to subsidize a portion of the costs, usually for a defined population that meets enrollment criteria.

These state programs help people pay for the astronomical costs of prescription drugs. Unfortunately, not every state maintains a strong program. I have added the directory to the Medical Research Assistant at http://www.ec-online.net/Assistants/medresassistant.htm. You will also find a directory of pharmaceutical companies that offer assistance.

State drug assistance programs and programs managed by the drug makers themselves are two key ways to help reduce the costs of prescription drugs. You can also save money on drugs by:

- Shop around at different pharmacies for the lowest price but don’t skimp on service and personalized attention. The value of a door-to-door delivery service may be worth a few dollars each month;

- Consider a mail order prescription drug program for medications that you take over long periods of time. These can be automatically updated so that you never run out, and may also be less expensive when purchased in bulk month-to-month;

- Ask your doctor or the pharmacist if there is a lower cost generic drug available. Generic drugs are the exact same chemical as the “name brand” but cost less;

- Talk to your doctor to see if you still need to take all of the medications you have. Eliminating a drug from your regimen that is no longer useful not only saves you money, but may also eliminate side effects;

- Look into healthcare benefit discount programs offered by reputable organizations and companies. These “discount cards” often offer significant savings on drugs and other healthcare services for a modest monthly or annual fee. Make sure that you are dealing with a company you trust and check on the actual savings that they promise;

- Ask your pharmacy if they offer a senior citizen discount, or other discounts from organizations you may belong to (such as AARP). Consider all of these discounts when comparing various pharmacies;

- It may make sense to purchase different drugs from different pharmacies. Be very careful if you do this because you may add on additional hassles and potentially lose track of prescriptions;

- Ask your doctor for some “free samples” of drugs. Use your best judgment and don’t ask every time that you see him/her;

- If you have some type of prescription drug coverage, you might ask your doctor to give you a prescription version of a product that you might normally buy over-the-counter. This may be more cost effective than buying the product at the drug store.

THE FORUM: Caregiver Meeting Rooms

Our homespun message board continues to serve as a support network for our members. Every week we enroll about a dozen new members who are looking for a sense of community and understanding. It’s not easy to find an open, supportive and sincere group of people who you can trust and feel comfortable with. And it is doubly hard to find them on the Internet where there is so much “flotsam and jetsam” – not to mention spammers, scammers and marketers.

The moderators and I strive to create a place where you can find the support that you need. We always listen to your input. At times, the Forum grows organically. In this case, we have seen the evolution of the Forum to provide a few “Caregiver Meeting Rooms.” These are distinct areas of the message board that serve primarily as social areas. There are already a few dozen pre-established areas for focused discussions. But these new areas serve as entry points for new members and people looking for a social outlet to relieve the isolation of caregiving.

Our first Meeting Room is for Spousal Caregivers. Too often the term “eldercare” only attracts people caring for their aging parents. I know that it is a fault of the website, but so many of you understand this and see beyond it. About 30% of our members are caring for their spouse, and they have distinct needs and concerns. So we have allowed this area to blossom. The Spousal Caregivers Meeting Room is buried a little bit in the Early Onset Alzheimer’s Disease topic area. But once you get there, it is hard to miss it. You can enter the Spousal Caregivers Meeting Room at http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=forum&f=29.

We just started an area for “Former Caregivers” as a way to help ease the transition from the caregiving role back into “The Real World” (as some people refer to it). It is brand new, so we will see how it evolves. I just know from my heart that this will prove to be a source of support for our members as they move onward in their life’s journey. You can access the Former Caregivers Meeting Room in the Wings topic area at http://216.122.139.136/cgi-bin/ultimatebb.cgi?category=5.

I don’t want these separate Meeting Rooms to end up segregating our members. There really aren’t so many of us that we can afford to have numerous rooms (or else we will each be sitting all alone in a quiet room). I am toying with the idea of building a “Men’s Room” for male caregivers; a “Teen Meeting Room” for youth who are living in a caregiving household; and a “Stroke Caregivers Meeting Room” for people caring for loved ones with brain injuries. So what do you think? Post your comments in the Forum under Announcements in “About Our Forums” at http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=forum&f=30.

You can visit the Forum message board at http://216.122.139.136/cgi-bin/ultimatebb.cgi. Remember that you don’t have to actually register to participate. It just opens up some tools that help you use the Forum better. For example, the Forum will mark which messages you have not already read, allow you to communicate by private, secure e-mail with other members, and become eligible for free caregiving books.

KEEPIN’ UP WITH ALZWELL: New Questions and Answers, Stories

Franklin Cassel continues to log in the hours replying to the numerous questions that are posted to the ALZwell website. We get about one a day, every day of the week. I try to get them all formatted and posted to the website on a bi-weekly basis, but I often fall behind. I am starting to reformat some of the web pages, so it is a good idea to double-check any bookmarks that you use to get to the website. The Questions and Answers are now on a new page at http://www.alzwell.com/alzwellqa.html. Please use that page whenever you access the questions and answers. I have a link back to the archived Q&A.

Franklin Cassel has dedicated his life to helping patients and caregivers cope with Alzheimer’s Disease. He cared for his wife, Peggy, for eight years before she passed away from the disease. He is a retired physician who spends his time with his church and advocating for a cure for Alzheimer’s Disease. “From my experience I say the most important thing for the patient is to be made to feel loved and still important,” Franklin says.

The Caregiver Stories are among the most insightful and heartfelt components of our websites. These stories talk about the challenges and victories of caregiving in their own words. Few, if any, of these people are professional writers. But that makes them all the more powerful. These stories are conversational, casual and HONEST. I encourage all of you to write down your caregiving observations and stories. Write them for yourself in a journal, or share them with others in our Forums. This month we have added about a half dozen new stories. You can read them at http://www.alzwell.com/Thisweek.html.

Please visit the main page of the ALZwell Caregiver Support website at http://www.alzwell.com for access to all of the interactive and community features.

TOP ALZHEIMER’S/CAREGIVING WEBSITES: Ageless Design Store

E-commerce outfits on the Internet are a dime a dozen. It seems that so many of these stores popped up with a goal to dominate a specific retail segment – to be a “category killer.” But where does that leave dementia caregivers? You and I know that caregivers fall through the cracks in so many areas – the financial system, social networks, political advocacy areas, and just about everywhere else. Only a few companies and organizations really seem to understand what caregivers are concerned about and what they REALLY want. A massive store selling products made for “the normals” ends up being disappointing. Through ElderCare Online and ALZwell Caregiver Support you are connected to a network of companies, organizations and professionals who really do understand the needs and concerns of you as an Alzheimer’s and elder caregiver.

This month I am featuring Ageless Design because they have created a new resource, an online store that has brought together a unique collection of products expressly for dementia caregivers. Mark and Ellen Warner have their heart in the business of helping caregivers. They maintain the Ageless Design website, publish the “Complete Guide to Alzheimer’s Proofing Your Home,” and now they operate the Alzheimers Store.

The Alzheimers Store is unique because it offers carefully selected products for people with Alzheimer’s Disease and their caregivers. Mark and Ellen’s professional expertise comes in handy because they offer advice on which products are most useful based on the stage of the disease that your loved one is in, solve specific problems, and have creative applications for caregivers. You will find many products in categories such as Safety, Wandering, Incontinence, Falls, Caregiving, and Activities of Daily Living. The store is easy to navigate, secure, and fast to load. Even hard-to-find products are reasonably priced.

Most importantly, you can trust the Warner’s professional judgment and credibility. This is not another fly-by-night dot.com. Ageless Design has been around for years and will continue to be a crucial information resource for caregivers. I highly recommend the Alzheimers Store, not just for dementia caregivers, but also for people caring for any homebound loved one. You can access the store directly at http://www.thealzheimersstore.com, or first go to the main Ageless Design website at http://www.agelessdesign.com.

FEATURE ARTICLE: Estate Planning: The Basics

What happens to your hard-earned savings when you need long-term care? How are you going to protect your house, your doll collection, and your heirlooms when you or your spouse has to move into a costly nursing home? People of modest means find out, sometimes painfully, that they are required to foot the bill for long-term healthcare. Medicare only pays a very limited amount of nursing home expenses. And Medicaid is difficult to qualify for since you have to already have spent away your hard-earned savings.

Most people assume that either they will not have to enter a nursing facility, or that once they do, "The Government" (i.e., Medicare or Medicaid) will pick up the tab. The first assumption is a form of denial, and the second assumption is only true in the worst scenarios. The fact is, as people age, they have a greater and greater probability of requiring some form of skilled care. Fortunately, more and more skilled care can be provided in the home, but nursing homes are still a reality for millions of elderly, especially those with dementia. The Government helps to pay for short-term care through Medicare, but only pays for people with very limited finances through Medicaid.

You can read the complete article, which includes an overview of options for paying for long-term care and several estate planning strategies at http://www.ec-online.net/Knowledge/Articles/estate.html.

BOOK REVIEWS: Nursing Home Books

I have put together a reading list of great books on nursing homes and long-term care. Many books deal with broad eldercare issues, but precious few actually deal with the myriad issues (not just legal and financial, but also emotional) that arise when considering placing a loved one into a long-term care facility. Many of you relate to me the pressures that you feel to keep your loved one at home (your own pressures, your loved one’s pressures, and your family’s pressures). But the fact is, many times a nursing home is the best option for getting the skilled care that some people need later in life. So while staying at home may be the preferred option, sometimes a nursing home is the best option.

“The Home: A Brief Moment in Time” by Marion Caryl Somers. The book is a novel rather than a self-help guide, so it allows not only some “artistic liberties,” but also the opportunity for the writer and reader to connect on an emotional and experiential level. This book allows the reader to delve into the experience of living in a nursing home from the perspective of the resident, the staff, and the family member. I like this book because it gives the family member an idea of the reality of what to expect. Marion, who I am pleased to say is one of my mentors, has a wealth of experience and credentials in care management, nursing home administration, and gerontology. You can order the book in several formats from http://www.1stbooks.com (including downloadable e-book format, paperback or hardcover).

“Beat the Nursing Home Trap: A Consumer’s Guide to Assisted Living and Long-Term Care” by Joseph Matthews. This is one of those invaluable handbooks that help families with a range of practical eldercare issues. It does an excellent job of discussing various long-term care housing options, including some of the family issues associated with making these difficult decisions. But the book also covers many legal, financial and insurance issues as well. It is difficult to write about these issues since laws can vary considerably from state-to-state, and since rules may become outdated or superceded.

“Nursing Homes: The Family’s Journey” by Peter Silin. This book is tightly focused on the process that families go through when they make decisions about placing a loved one in a facility. This is both a very humanistic book and a very practical one (my favorite combination!). It serves as a guide through the decision-making process, offering assistance on the numerous issues associated with deciding about long-term care. This is a book written with the insight of a sociologist and geriatric care manager, someone who sees the human side of the equation first. On the practical side, the author shares with you the ins and outs of moving into a facility and making life there the best possible. Here you see his years of experience shine through in a reassuring way. Peter is one of ElderCare Online’s community activists and Forum moderators.

“Nursing Homes: Getting Good Care There” by Sarah Greene Burger, et al. This slim book is one of my favorites. It has a “take no prisoners” attitude that always puts the resident first. Perhaps that is also its weak point, since it has the voice of an aggressive advocate that sees many of the flaws of long-term care facilities. A key trait for the family caregiver is knowing when to you’re your battles with the staff to ensure that your loved one gets the best possible care. This book offers numerous real-life strategies, including checklists and questions to ask for those difficult times.

“The New Nursing Homes: A 20-Minute Way to Find Great Long-Term Care” by Marilyn Rantz and Lori Popejoy. Lori recently hosted a special educational chat session about long-term care (transcript link). The book that she and her colleague wrote is another in the collection of books for people concerned about nursing home placement. What I like best about this book are the tools and checklists used for determining which nursing home is best. Many books and websites offer similar tools (including ElderCare Online), but their really are the most sensitive. The authors’ experience on the front lines as nursing home administrators gives them unique credentials and insights.

You can read more reviews of each of these books in the Eldercare Bookstore. We also have numerous featured books, interviews, excerpts, and specialty bookshelves for a variety of topics. By purchasing a book through our bookstore, you help us earn a small (but useful) commission. This helps us to continue our good work and to keep our website free. You can access the ElderCare Bookstore at http://www.ec-online.net/Connections/bookstore.htm.

ACTIVIST ALERT!: CareGivers FunFest

We are now all familiar with the typical fund-raising activities of organizations serving people in need: dinner dances, marathons, bike races, 50-50 raffles, and numerous other time-tested approaches. But this year, be prepared for a different kind of fund-raiser that will help to provide respite for caregivers to individuals affected by dementia.

A group of dedicated dementia caregivers have planned a “CareGivers FunFest” for July 28th and 29th in Burlington, Iowa. The FunFest will give caregivers to loved ones with Alzheimer’s Disease, Pick’s Disease and other related dementias a much needed weekend of respite while enjoying the company of other caregivers and their friends. It will also raise funds to fight Alzheimer’s Disease, Pick's Disease, and to assist needy families with children at Christmastime.

You will recognize a few of the organizers: Edyth Ann Knox (AKA Bubblehead) and Doug Keck (from the CANDID chatroom) will be the leaders of the event. FUN is the main theme of the weekend:

- Edyth Ann has volunteered herself for a light-hearted class on “How to Bathe a Caregiver.” Attendees may purchase water balloons to toss at her while she participates (in a bikini?) in the bathtub race;

- Attendees are welcome to attend a walk/run to raise money for the causes; and

- Attendees may play Bingo or visit the flea market.

The events are sure to raise awareness about the needs and issues that caregivers face. We all know the importance of good humor and respite: these events bring that point home. It is an event as much for caregivers to take a break, as much as it is for raising money.

ElderCare Online and ALZwell Caregiver Support will donate 20% of the proceeds from sales of the Prism Caregiver Education Series from May 15 through July 31 in support of this event. You can browse through our store at http://www.store.yahoo.com/eldercareonline.

For more information about the FunFest, visit http://www.angelfire.com/ia/dougkeck/funfest.html. Or contact Doug (dougkeck@home.com) or Edyth Ann (edythann@netzero.net).

CHAT SCHEDULE: Updates for July

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). Topics are suggested and NOT required. We always focus on the issues and that our members want to discuss.

Please note that due to the Independence Day holiday in the US, we will not hold chat session on July 4 and July 5.

July 11 (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.”

July 11 (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 “Caregiver Respite.”

July 12 (Thursday 7:00 to 9:00PM 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.

July 12 (Thursday 9:00 to 11:00PM EST) “ElderCare Answers:” Host Rich O’Boyle leads a discussion group for people caring for aging loved ones on the topic of “Quality of Life.”

July 18 (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.”

July 18 (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 “Eating Tips for People with Dementia.”

July 19 (Thursday 7:00 to 9:00PM EST) “Sugarlips’ Chatroom:” Host Vicki Gardner welcomes caregivers for a social and networking discussion group on the topic of “Expressing Our Emotions.”

July 25 (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 “Relieving Isolation.”

July 25 (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 “Caregiver Respite.”

July 26 (Thursday 7:00 to 9:00PM 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.

July 26 (Thursday 9:00 to 11:00PM EST) “ElderCare Answers:” Host Rich O’Boyle leads a discussion group for people caring for aging loved ones on the topic of “Quality of Life.”

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

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