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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January 1, 2002                                                                                 Vol. 5 No. 1
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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, 

I apologize for the delay in getting this newsletter out to you. No, I have not been hung over for the last three days! Our office has moved into a slightly larger and more comfortable location. Change of any kind is not easy – even if it means moving just down the street. The phones are still not hooked up and I only just straightened up our Internet connection. So if you have been trying to call, send an e-mail instead, at least until the 10th or 11th of this month.

Every year that passes serves to inspire our mission, even if the inspiration comes from conflict or criticism.

Two weeks ago I received an angry message from a newsletter subscriber berating me for advertising our booklets, healthcare discount card, and bookstore through the newsletter and websites. The author called into question my intentions, saying that websites were inexpensive to operate and that I didn’t need to advertise or sell anything (so I must be preying on financially strapped caregivers). The website had lost its heart and soul, she implied. She cancelled her subscription to this newsletter and poked her finger in my eye (in a metaphorical sense).

I am always open to criticism, even if it is misguided and seemingly petty as there is a pearl of wisdom to be plucked from every gnarly oyster. Some (many?) of you may feel the same way as her. I just present this situation as a way for me to better communicate with our entire membership.

Since its inception in 1997, ElderCare Online has been a free informational resource that hosts chats and a message board. Our goal has always been to be an essential resource for family caregivers, especially those coping with dementia. Over the years, our library of articles has grown, our active membership has soared, and our partnerships have expanded. Needless to say all of the people, products, and services that go into making this online community happen cost money. No, it’s not a “little” bit. There is one full-time employee (me), and between four and seven part-timers at any given time (writers, mentors, and programmers). While I must admit that we run a tight financial ship, it is not inexpensive.

Furthermore, the websites can not go on forever as a charity with me as the chief contributor. Over the last 18 months we have put more of an emphasis on creating revenue from the websites so that we can sustain our mission. That has meant:
- putting more paid advertising into the free newsletter
- compiling our articles into booklets and selling them through the website
- marketing caregiving products made by our partners
- promoting our bookstore affiliation with Amazon.com
- talking with corporations about educational grants for the websites
- licensing our articles to large corporate websites

The last thing that has happened is that this organization has lost its heart and soul. Quite the contrary, the components of the website that represent the supportive interactions of our members have grown enormously. Our heart and soul have grown even as we have spent more time on business affairs.

I am not going to apologize for trying to earn an income for myself and the numerous people who work with me. Something of this scale can not effectively be run as a hobby or part-time job. Too many caregiving resources on the Internet have disappeared because they were not structured properly (in a financial or marketing sense). Caregiverzone, Care There, and Web of Care (to name the largest) are all out of business. ElderCare Online and ALZwell.com are NOT going to join them.

We are going to continue our honorable mission. And to that end, I ask your continued support – not just to consider the products we offer and the advertisers we work with – but to contribute to our community and provide the support that we all need because that is the core of our mission. The money will follow.

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

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INSIDE THIS ISSUE

Feature Article: Helping Loved Ones Grieve by Jan Allen
ElderCare Forum: Latest Postings
Top Alzheimer’s/Caregiving Sites: Dr. Stall’s Geriatrics Web Page
Prism Caregiving Store: Prism Pharmacy Discount Card
Keepin’ Up With ALZwell: New Questions and Answers Added
Caregiver Support Network: Poems by Dorothy Womack
Chat Schedule: Updates for January
Subscription Information

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FEATURE ARTICLE: Helping Loved Ones Grieve by Jan Allen

Jan Allen provides a novel insight into the stages of grieving beyond the traditional approaches most of us have heard about. Her analogy to the seasons of the year may provide you with a more appropriate way of managing your grief or the grief of a loved one.

Most of us live in parts of the country where there is a distinct change of seasons. Winter, Spring, Summer and Fall each have their own unique qualities. Grieving is also like the seasons – there are a variety of events that we experience as we grieve, much as we experience a series of events as the seasons change.

So, as we explore these seasons of grief, let us turn our reflections to the power of these seasons of grief – pre-grief, a time to grieve, a time to heal and renewal.

Most of us have someone who we had a meaningful relationship with who is no longer with us. This may be due to death or other factors. When a parent leaves the home through divorce or when spouses part ways, these can be very profound times of loss and grief. So, for those of you who have the distinction of remembering a past relationship – please take a moment to reflect on the importance of a past connection or time of life. Please take just a few moments to remember a fond time with that loved one. No sadness. Just a happy time. A time of joy. A time of satisfaction. A time of peace that you shared with that loved one.

You can read the complete article at http://www.ec-online.net/Community/Activists/griefhelp.htm

Jan Allen is a clinical social worker with years of experience working with families and individuals with Alzheimer’s Disease. She has managed adult day health centers and consulted with aging service providers. Visit her personal pages (including other articles that she has written) in our Caregiver Support Network at http://www.ec-online.net/Community/Activists/can.htm. For additional articles on grief, bereavement, death, and dying, visit the Transitions & Spirituality Channel at http://www.ec-online.net/transchannel.htm.

ELDERCARE FORUM: Latest Postings

Our Forum message board has been busier than ever. I will just highlight a few of the more interesting posts in the last few days. Anyone can read and browse through the Forum, but only registered members may post to the message board. The chatroom is a different area, and you do not need to be registered to enter the chatroom.

If you would like to register, please follow this link: http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=agree. Please excuse any little error messages that you may receive. We are working to resolve a software glitch. I will manually send your registration information and password. Just fill out the information and wait. I will get it to you in less than a day (probably within 15 minutes).

(Note: Some of these links may not transfer correctly via e-mail. In that case, just go to the Forum at http://216.122.139.136/cgi-bin/ultimatebb.cgi or read this newsletter off of the website at http://www.ec-online.net/Knowledge/Newsletters/beacon120101.htm).

Casual Corner: Something to Think About: Every now and then we each need something warm to think about. Sugarlips and others have added some inspirational pieces at http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=forum&f=20

News and Research: Caregiver Online Survey: Jan Colvin is writing her Ph.D. dissertation on the use of online support groups. Please help her with her research by filling out her brief survey at http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=forum&f=26. We also have new clinical research updates from the Alzheimer Research Forum.

Early Onset Alzheimer’s Disease: Spousal Caregivers Meeting Room: You don’t have to be coping with Early Onset Alzheimer’s Disease to appreciate the tight friendships and support that our members share here. The issues that spouses face are different from those of adult children, so we carved out a place just for them at http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=forum&f=29.

New Caregiver’s Meeting Room: A Problem Shared…: Unfortunately this is a common issues that affects many caregivers who hire in-home assistance – is your loved one getting the aide’s full attention? Join the conversation at http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=forum&f=40.

Family Dynamics: Siblings!: Always a popular topic. Please join in and help out member Otan with this frustrating situation at http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=forum&f=2.

Less Common Dementias: Lewy Body Disease: Alzheimer’s Disease is the most prevalent form of dementia, but certainly not the only one. Lewy Body Dementia strikes hundreds of thousands (perhaps millions) of individuals with its unique form of dementia. Join others who are coping with this disease at http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=forum&f=34.

I, Caregiver: Burnout: How do we get through the days and nights? Why am I putting myself through all of this? I feel so alone. These are some of the warning signs of burnout. Talk with others before you lose direction and strength at http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=forum&f=19

We have literally hundreds of other discussions going on in the Forum. Please come by to browse and read. We cover so many of the issues that all caregivers encounter. Just reading the stories and comments can help you learn. If you have specific questions or feel that you need the support of others just like you, please sign up and join us. Visit the Forum at http://216.122.139.136/cgi-bin/ultimatebb.cgi.

TOP ALZHEIMER’S/CAREGIVING SITES: Dr. Stall’s Geriatrics Web Page

Dr. Robert Stall has maintained his online office for about four or five years as far as I can tell. That makes him one of the pioneers helping caregivers on the Internet. Over the years, his straight-forward website has grown with outstanding professional insight, and now, some educational slide shows. 

For those of you who are critical of the way that the medical profession has consigned the elderly and those affected by dementia to the fringes of treatment, you will be pleased with Dr. Stall’s specialized approach to the aging. He brings not only clinical rigor, but also compassion and wit. The medical profession needs more people like Dr. Stall.

You can visit his website directly at http://www.acsu.buffalo.edu/~drstall/ or access it through the ElderCare Online front page at http://new.topsitelists.com/topsites.cgi?ID=1&user=bpsibley&area=bests (this will tally a vote for ElderCare Online as a Top Alzheimer’s/Caregiving website).

For additional Alzheimer’s and Caregiving websites, Brenda Parris Sibley has established one of the best clearinghouses on the Internet. She has contacted and worked with a variety of websites to collect them into a directory with rankings showing which are the most popular. Brenda and the other webmasters and webmistresses have done an excellent job of creating unique and compelling sites that speak directly to family caregivers. In each issue of this newsletter, we will mention one of the many sites that comprise the Top AD/Caregiving Sites List.

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.

KEEPIN’ UP WITH ALZWELL: New Questions and Answers Added

Every month we upload the newest questions and the responses provided by Dr. Franklin Cassel and other members of the ElderCare Online and ALZwell Caregiver Support staff. We receive about 100 new questions every month, so it is impossible to reply to them all. Answers to many of them can be found within the Frequently Asked Questions (FAQs) section of the ALZwell website or in the dozens of caregiving articles on ElderCare Online. I encourage anyone who has a question to first look through the websites and then to go to the ElderCare Forum message board. The Forum is a great place to get quick responses and connect with others who have similar issues.

This month, our newest Questions and Answers include the following:
- Parkinson’s Disease and dementia
- Intervening when the caregiver is in denial
- Adult day care services
- Helping your loved one sleep at night

The complete list of Questions and Answers can be found at http://www.alzwell.com/alzwellqa.html

PRISM CAREGIVING STORE: Prism Pharmacy Discount Card

Throughout the months of December and January we are featuring the Prism Pharmacy Card. This discount card saves you about 15% on all prescription drugs that you purchase through participating pharmacies. Just show your card to the cashier at the pharmacy, and they will charge you a lower rate. Our partner, Advantage Benefits, Inc. negotiates lower drug prices for you in exchange for encouraging you to use a pharmacy from the preferred list.

Markups on prescription drugs are so steep that these pharmacies can afford to give you a small discount. They also hope that you will buy personal care products and other items while you are filling your prescriptions. You can save even more money (about 30%) by using the affiliated online pharmacy for recurring prescriptions.

Advantage Benefits guarantees your satisfaction for 60 days. If you are not satisfied that you are saving more than you pay for the card, you can return it for a full refund. Prism Innovations will add on a complimentary copy of our booklet “Managing Medicines Safely.” We place your health and wellbeing (physical and financial) as our top priorities.

Consider this simple scenario: an individual is taking three different prescription drugs (for dementia, a heart condition, and arthritis). Each of these drugs may cost her $100 each per month (I am being very generous here, you know many are even more expensive). That’s $300 per month CASH out of pocket. Using the Prism Pharmacy Card, she could shave off 15% from her costs, or about $45 per month.

In the first month alone, our sample customer could pay for a year’s worth of drug savings. That’s eleven months of discounted prescription drugs of almost $500 in savings. That is savings that would have been cash out of pocket.

For an annual fee of $49.95, you can join or network of consumers saving substantial amounts on prescription drugs. This is substantially lower than many other products on the market. Review our list of providers and savings and order the Prism Pharmacy Care Card at http://www.ec-online.net/Store/carecard.htm.

CAREGIVER SUPPORT NETWORK: Poems by Dorothy Womack

Dorothy Womack was the sole caregiver to her mother 24/7 for a period of almost 4 years, up until she died in her home. She lived with Dorothy and her husband for 14 years prior to that time, and she had the occasion to watch her progressive decline until the very end. Her mother endured great hardship and showed enormous bravery and tenacity in the face of it all.

Dorothy’s greatest goal is to reach those who are caring for their own loved ones with the truth, informing them of what to expect during the end stages and to help them transform their guilt before it becomes destructive to their own well-being. She is also a strong believer that we all have a spirit, and that it truly survives the disintegration of the body.

Dorothy has written numerous inspirational and spiritual articles and poems. These are included on her personal pages in ElderCare Online’s Caregiver Support Network as well as her own websites. You can access her personal pages at http://www.ec-online.net/Community/Activists/can.htm where we have posted some new poems for 2002.

CHAT SCHEDULE: Updates for January

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). We have begun to provide chats that are hosted by caregivers in Australia. Australian times are GMT +10. Hopefully this will not cause a great deal of confusion and instead give us more opportunities to connect with each other.

Topics are suggested and NOT required. We always focus on the issues and that our members want to discuss. Please remember that we have a new chatroom. If you had trouble using the old one, please give it another try! Please note the new sessions added on Monday evenings, Wednesday mornings, and Saturday afternoons.

Our current chat schedule is posted in the ElderCare Community Center at http://www.ec-online.net/Community/communit.htm as well as at the end of this newsletter.

January 7 Monday (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 “Caregiving for People with Dementia.”

January 8 (Tuesday 9:00 to 11:00PM EST) “Children of Aging Parents:” Host Brian Duke from CAPS and the Institute for Aging at the University of Pennsylvania leads a discussion for family caregivers seeking understanding and resources.

January 9 (Wednesday 5:00 to 7:00AM EST) “Ozcarers' Chatroom (or Pong's Place):" Hosts Pongfoot (David) and Splash (Edith) welcome caregivers from around the world to drop in and put their feet up for a while, chat with other caregivers and "Take a Break."

January 9 (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.”

January 9 (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 “Caregiving for People with Dementia.”

January 10 (Thursday 9:00 to 11:00PM EST) “Sugarlips’ Chatroom:” Host Vicki Gardner welcomes caregivers for a social and networking discussion group on the topic of “Expressing Our Emotions.”

January 12 (Saturday 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.”

January 14 (Monday 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 “Caregiving for People with Dementia.”

January 16 (Wednesday 5:00 to 7:00AM EST) “Ozcarers' Chatroom (or Pong's Place):" Hosts Pongfoot (David) and Splash (Edith) welcome caregivers from around the world to drop in and put their feet up for a while, chat with other caregivers and "Take a Break."

January 16 (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.”

January 16 (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 “Caregiving for People with Dementia.”

January 17 (Thursday 9:00 to 11:00PM EST) “Sugarlips’ Chatroom:” Host Vicki Gardner welcomes caregivers for a social and networking discussion group on the topic of “Expressing Our Emotions.”

January 19 (Saturday 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.”

January 21 (Monday 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 “Caregiving for People with Dementia.”

January 22 (Tuesday 9:00 to 11:00PM EST) “Children of Aging Parents:” Host Brian Duke from CAPS and the Institute for Aging at the University of Pennsylvania leads a discussion for family caregivers seeking understanding and resources.

January 23 (Wednesday 5:00 to 7:00AM EST) “Ozcarers' Chatroom (or Pong's Place):" Hosts Pongfoot (David) and Splash (Edith) welcome caregivers from around the world to drop in and put their feet up for a while, chat with other caregivers and "Take a Break."

January 23 (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.”

January 23 (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 “Caregiving for People with Dementia.”

January 24 (Thursday 9:00 to 11:00PM EST) “Sugarlips’ Chatroom:” Host Vicki Gardner welcomes caregivers for a social and networking discussion group on the topic of “Expressing Our Emotions.”

January 26 (Saturday 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.”

January 28 (Monday 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 “Caregiving for People with Dementia.”

January 30 (Wednesday 5:00 to 7:00AM EST) “Ozcarers' Chatroom (or Pong's Place):" Hosts Pongfoot (David) and Splash (Edith) welcome caregivers from around the world to drop in and put their feet up for a while, chat with other caregivers and "Take a Break."

January 30 (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.”

January 30 (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 “Caregiving for People with Dementia.”

January 31 (Thursday 9:00 to 11:00PM EST) “Sugarlips’ Chatroom:” Host Vicki Gardner welcomes caregivers for a social and networking discussion group on the topic of “Expressing Our Emotions.”

February 2 (Saturday 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.”

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

SUBSCRIPTION INFORMATION

The Caregiver’s Beacon is published bimonthly by ElderCare Online and ALZwell Caregiver Support. To subscribe to this free newsletter, visit the subscription information page at http://www.ec-online.net/Knowledge/Newsletters/subscribe.htm.

You may also go to the main page of the website at http://www.ec-online.net or http://www.alzwell.com and add your e-mail address to the white box and click on the "Subscribe" button (just one click!)

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(c) 2002 Prism Innovations, Inc. All Rights Reserved.

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