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 15, 2002                                                                                     Vol. 5 No. 2
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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,

ElderCare Online is designed as an in-depth informational website for those caring for aging individuals. Our sister website, ALZwell Caregiver Support, solidly covers Alzheimer's Disease and many aspects of dementia care. However, I recognize that we have some gaps that need to be filled. I am disappointed whenever we lose subscribers or visitors who see us as too narrowly focused on dementia.

Our coverage of general eldercare topics is comprehensive and getting stronger month by month. Yet our specialized medical content is lacking, except where it relates to Alzheimer's Disease. Parkinson's Disease, Stroke, and less common forms of dementia seem to be the most popular medical conditions requested by our members.

Please give me some feedback on topics, article ideas, chat sessions, and other ways to suit the website more to your needs. For example, should we set up a weekly chat session for Parkinson's Disease caregivers? Maybe we should develop a meeting room for Stroke caregivers in the Forum? Do I have any community volunteers who can give me some insights? Are there any valuable targeted websites that we should consider partnering with?

I welcome your input and dialogue on these types of questions. Please forward information and requests to me at rich@ec-online.net so that I can better understand your needs. This is a preliminary request. In February I will be launching our annual Website Improvement Survey with more detailed questions. This early input will help me to create a more useful survey next month.

Thank you for all of your positive feedback and support regarding my previous welcome letter where I discussed our advertising policy. I received numerous messages and welcomed them all. I admit that it is a delicate balance where your Trust and our Mission walk side by side. I will continue my open and sincere communication with you, and ask that you do the same with me.

I have added several new books to the "I, Caregiver" section of the bookstore and created a new Stroke Care Bookshelf. I recognize increasingly that we reach a more diverse community of caregivers and we need to offer more resources (while retaining our vision and focus). In many ways, the ElderCare Bookstore complements our website content: we can't be all things to all people, but we certainly can steer you to other informational resources that we think you would benefit from. I'm considering additional topical sections for the bookstore relating to hobbies and healthy aging. Please take a look at the bookstore at http://www.ec-online.net/Connections/bookstore.htm.  

Finally, I have noted a huge increase in the number of registered Forum members. If you registered for the Forum message board, but have not posted any comments, I encourage you to get more active. The software has a minor glitch that requires me to manually send your password to you. I have sent all of them to date, but if you would like it resent, please just ask me at rich@ec-online.net.

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

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INSIDE THIS ISSUE

Feature Article: Long-Term Care Insurance: The Basics
ElderCare Forum: Latest Postings
Top Alzheimer's/Caregiving Sites: Unsung Heroes
Prism Caregiving Store: Prism Pharmacy Discount Card
Alzheimer's Answers: Transitioning into the Role of the Caregiver
Chat Schedule: Updates for January
Subscription Information

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FEATURE ARTICLE: Long-Term Care Insurance: The Basics

Few individuals or families actually plan for disability and dependence in later life. Sadly, the lack of planning and self-education often results in lost opportunities to prepare for potential disability. Without the planning and discussion of these issues, we are often forced to learn quickly about available options after a traumatic accident, diagnosis of dementia, or loss of ability to care for oneself. While many of us are emotionally resilient, we usually are not financially resilient.

It's surprising that so few families plan for long-term care given the high probability that our aging loved ones will ultimately need it. Perhaps it has been out of mind because it has been out of sight. With the wave of aging parents of Baby Boomers, it will finally come into focus. Consider that two in ten people over age 50 will require long-term care, four in ten people over age 65, and seven in ten people over age 75.

Individuals planning for future long-term care needs (either because they have seen a loved one require expensive care, or because they have a comprehensive financial plan in place) have four options:
1. Hope that the federal government will change course and design a long-term care program that fills the gaps in Medicare and Medicaid;
2. Put aside additional personal savings to pay for care when required;
3. Prepare an estate plan that allows them to creatively shift assets in order to qualify for Medicaid; or
4. Purchase a long-term care insurance policy through an employer or private company.

You can read the complete article that describes different types of long-term care insurance policies, provides tips on what to look for in an insurance company, and key items to watch out for in a policy at http://www.ec-online.net/Knowledge/Articles/ltcinsurance.html. Numerous other articles on Medicare, Medicaid, Medigap, and other insurance matters are included in the Insurance Coverage Channel at http://www.ec-online.net/inschannel.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: Poetry: When confronted with the life-changing role of becoming a caregiver, many individuals find that they have hidden talents. It's only through the course of the caregiving journey that they are revealed. Several members have begun to post their poetry in our community forum to let their voices be heard. JanieR has even been approached about having hers published! Read the poems of our members, or share your own at http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=get_topic&f=20&t=000069

Daily Challenges: Caring for Both Parents: Quite a few of our members have the doubly challenging responsibility of caring for both parents. We have two discussion threads where caregivers are sharing their thoughts and experiences. Join them at http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=forum&f=1.

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: I'm at My Wit's End by Wehnonah. How does one cope with a loved one's delusions when they strike too deeply emotionally? It's more than just an inconvenience - it hurts. Knowing that others have similar experiences can help with understanding. Join the conversation at http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=get_topic&f=40&t=000023

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: Keep Me Positive: One of our newest members, Jody from Michigan, shares her family experience and the pain of seeing her grandfather decline in a nursing home and her decision to move him into her household. Now she is sharing her experiences with an intergenerational household. Read her story and share your experiences 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: Unsung Heroes

Brenda Race's website, Unsung Heroes, is a dedication to the individuals who have passed after battling Alzheimer's Disease. She says, they "fought a war of their own ... who may not have conquered lands and enemies along the way ... but instead touched hearts and forever changed them." Brenda notes insightfully that the individuals who passed away "gave each of their caregivers much more than they ever took from them, and continue to live on in the memories of those who were left behind."

It's a positive message that individuals still coping with dementia can look forward to. Maybe these rewards are not apparent right now, but may be in the near future after having the opportunity to reflect on the caregiving journey. Brenda offers a Victory Garden of sorts: red roses that memorialize individuals who have passed from dementia. Individuals may contact her directly and ask that she "plant a rose" for their loved one.

You can visit Brenda Race's Unsung Heroes website (and follow her links to online poetry resources) at http://www.geocities.com/brace03/heros.html.  

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.

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.

ALZHEIMER'S ANSWERS: Transitioning into the Role of the Caregiver

Our series of "ask the expert" chat session, Alzheimer's Answers, continues next week with a discussion primarily for new caregivers: "Transitioning Into the Role of the Caregiver" with Dr. Edward Zamrini on Monday, January 28, from 1:00 to 2:00PM EST. Experienced and former caregivers are also invited to share their experiences, insights, and comments.

The chatroom is accessible at http://www.ec-online.net/chat.htm.

The transformation of the needs and abilities of the patient with Alzheimer's Disease can exert significant stresses on relationships with others. The individual affected by Alzheimer's Disease patient can become dependent, needy, anxious, and depressed. They may become disinhibited, more irritable, agitated, and even aggressive at times. The friend, child, or spouse now has to deal with an evolving new person in a way different from what they have been used to and expected.

Because of what the disease does to the victim's brain, the patient can no longer be held responsible to maintain the previous relationship. Now, the full burden lies with their loved ones. The partner/caregiver now has to learn a new set of relationship dos and don'ts and has to shoulder much more responsibility than they may have imagined.

Initially, there is strong resistance to facing the problem of deteriorating cognition. Once the problem is recognized, multiple, often subconscious, levels of resistance crop up to the ongoing change in the patient and the increasing demand on the caregiver. What used to be an equitable or agreeable partnership shifts to greater and greater responsibility for the caregiver.

How can one cope with all this? Part of the answer is through a paradigm shift. The paradigm shift allows one to view a problem from a different perspective. This new perspective can lead to a previously unseen desired solution - e.g. maintaining a loving relationship with a cherished person whose mind and personality are changing. Many spontaneously go through a transformation of discovery and care. Most need some form of help including education, support, respite, and self-affirmation.

Dr. Edward Zamrini is an assistant professor in the Department of Neurology at the University of Alabama at Birmingham. He is head of the Information Transfer Core in the UAB Alzheimer's Disease Research Center, one of the leading institutions of its kind. His primary clinical interest is early detection of Alzheimer's Disease and its treatment, although he has a great interest in the way that knowledge is shared by professionals with families. Before joining UAB, Dr. Zamrini served as associate professor of neurology and psychiatry at the Medical College of Georgia, as well as acting chief of the dementia/Alzheimer's program and director of the geriatric neuropsychiatry program at the Veterans Affairs Medical Center in Augusta. You can read more about Dr. Zamrini and the University of Alabama at Birmingham at http://www.health.uab.edu/show.asp?durki=29851&site=46&return=9885? and http://main.uab.edu/show.asp?durki=11627.

The session is produced in cooperation with the Alzheimer Research Forum, a non-profit knowledge exchange that serves the scientific and research communities. Their website offers readable research and clinical updates on Alzheimer's Disease at http://www.alzforum.org. Columbia University's Taub Institute for Research on Alzheimer's Disease and the Aging Brain contributes to other Alzheimer's Answers sessions as well.

While this session is geared toward dementia caregivers, anyone caring for a loved one with intensive needs should benefit from the concepts and strategies that will be discussed. We will be accepting advance questions at rich@ec-online.net. We will also save the chat transcript and provide it on the website within a day or two after it runs. Previous Alzheimer's Answers chat sessions are archived at http://www.ec-online.net/Knowledge/SolutionSets/alzanswers.htm.

The chatroom is accessible at http://www.ec-online.net/chat.htm.

Throughout January and February we have several exciting interactive sessions planned. Please return to the website and read the newsletter for details.

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 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!).

To unsubscribe from this list, follow the customized link that is provided below by our ListBuilder software. You may also customize your profile and sign up for additional monthly News Briefs on special topics.

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

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