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 15, 2001                                                                                 Vol. 3 No. 13
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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,

Medicare is an insurance policy for seniors with two gaping holes: it lacks coverage for long-term care and prescription drugs. It finally looks like something may get done about one of those holes when last week, President Bush announced a long-awaited program to help seniors pay for prescription drugs. He said that the program, which would encourage individuals to buy private prescription drug discount benefit cards, would be in place by November.

But don’t be surprised if absolutely nothing comes of this proposal.

We all know that seniors need help paying for prescription drugs more than anyone else. People over 55 make up the largest group of customers for drug companies, with some seniors taking four or five medications every single day. Drug companies are among the most profitable businesses in the world; they are also among the most research and investment intensive, employing thousands of scientists and medical analysts. Prescription drug coverage was a red hot issue in the November 2000 election campaign, with both George W. Bush and Al Gore promising to give seniors some relief.

The problem with healthcare costs is that ultimately someone has to pay for it. Either it is the insurance company, the government, the consumer, the drug company, the hospital, the doctor, the pharmacy, or any of the numerous “players” in the system. And the way the game gets played is that everyone tries to shift the costs to someone else – sort of like a game of “Old Maid.” In the case of prescription drug costs, nobody wants to get caught with the Old Maid – drug costs are high now, and they keep rising, so you are pretty much guaranteed pain today and even more pain every day in the future.

Which leads us to the current situation: seniors and their families basically pay for all of their prescription drugs out of their own pocketbooks. You do see a small number of seniors who are in managed care plans who have some drug coverage. The drug companies are holding a Royal Flush, the government has a handful of jokers (I couldn’t resist), insurance companies have been dealt a Full House (aces high), and the rest of the payers have better hands than the consumer, who is left with the Old Maid.

From what I can make of the current Bush proposal, he is going to have the federal government endorse certain drug discount membership cards and set some minimum rules and standards for these cards to follow. You may have seen these advertised on the Internet or offered through large membership organizations such as AARP and WalMart. They charge an annual fee of about $100 and then send you a card that you can use for discounts at pharmacies, health facilities, medical supply stores, and the like. Some promise discounts of 65-85%, but my research shows that people can expect about 15-20% savings on name-brand drugs through specific pharmacies. In the interest of full disclosure, ElderCare Online is considering working with one of the largest card issuers to provide caregivers with a specialized senior/eldercare discount card.

These cards are NOT a cure-all or solution to the overall inequities in healthcare financing. Essentially, these cards give consumers an added edge in reducing their out-of-pocket drug and healthcare costs. Now, if these cards are a good idea for consumers (and they tend to benefit those who have significant out-of-pocket costs for name brand drugs and drugs that must be taken every day for a long period of time), why do I say that I think that Bush’s proposal probably won’t come to fruition? Consumers are getting a little boost with this proposal, but it comes at the expense of the large pharmacies like CVS and Walgreens. In the end, someone is going to have to foot the bill for the drugs, and if consumers spend 15% less, it is going to have to come out of someone else’s pocket. It looks like the pharmacies are going to sue the government and get their backers in Congress to stop the program from moving forward.

So where does this leave us as caregivers? These discount cards are still available to consumers. They are legal, useful, and readily available. To be honest, if a 15% savings is all that George Bush can give consumers in the name of “Medicare Reform,” then I think he should be ashamed (especially if it is savings that they can already get without his help). It proved to be prophetic earlier this month when I wrote a Caregiving Tip about Saving Money on Prescription Drugs (which is repeated this issue). The fact is that consumers should look at every opportunity to save money on drugs. Think of it as a game of Old Maid – you can go head-to-head with the big players in healthcare and save a significant amount of money.

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: Free Preview One Week Only
The Forum: Faith and Belief in the Caregiver Role
Guest Column: Chip Gerber’s Journal
Feature Article: Tips on… Saving Money on Prescription Drugs
Top Alzheimer’s/Caregiving Sites: Dementia Advocacy and Support Network
Activist Alert!: CareGivers FunFest
Chat Schedule: Updates for July
Subscription Information

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CAREGIVER EDUCATION SERIES: Free Preview One Week Only

I would like to provide all of our loyal newsletter subscribers with a free peek at some of the caregiving booklets that we have in our online store. Through the end of the month (until July 31st 1) you may access two of our informative Learning Resource Guides free of charge.

Just go to http://www.ec-online.net/cgeaccess.htm and enter the following:
- Username: promo
- Password: g7r3k2

This gives you free access to the online versions of the booklets “Preventing Frauds and Scams” and “Understanding Incontinence” until July 31. It is my hope that you will see how informative these booklets are and order permanent access to them online or hardcopy printed booklets. You can shop in our online store for these and other educational products at http://www.store.yahoo.com/eldercareonline. We use Yahoo! As our e-commerce partner because they provided us with the highest level of security and reliability. We chose not to make the investment in flashy software and graphic design. We prefer to rest on our belief that quality content is better than glitz and flash. The not-so deep dark secret is that ultimately YOU the consumer pay for that glitz and flash.

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!

THE FORUM: Faith and Belief in the Caregiving Role

What helps you through the tough times? For some it is humor. For others, it is the prospect of some type of relief or reward. For others, it is the belief that their caregiving role is more than assisting someone with activities of daily living; that caregiving is noble and has a deeply spiritual basis. Forum Moderator Bubblehead/Edyth Ann Knox recently started a discussion thread that many members fill find to be a resource and a place to share their own spiritual and religious insights into caregiving.

“Faith and Belief in the Caregiving Role” is a place where you can share your personal experiences, favorite Bible passages, inspirational books, and poetry. We are not promoting one religion over another. This is an area where we can discuss all aspects of Faith with the hope that we can learn from and support each other.

You can visit the Forum message board at  http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=get_topic&f=1&t=000082. 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.

FEATURE ARTICLE: Tips on… 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. The following article includes a dozen tips that can save you substantial money on recurring drug costs. You can read the entire article at http://www.ec-online.net/Knowledge/Articles/drugcosts.html.

GUEST COLUMN: Chip Gerber’s Journal

Chip keeps a daily online journal about his daily experiences as a person affected by Alzheimer’s Disease. Since he received his diagnosis in 1997, he has been chronicling his thoughts and experiences daily. His unique perspective is online at http://www.zarcrom.com/users/alzheimers/chip.html.

Jun 5, 2001

I decided that I would trim my hedges on my property where I live. Due to all the rain that we have been having here in Ohio, the hedges were looking like they needed to be trimmed. I had about half of the hedge done and was feeling rather good about it. I was really pushing myself to get the remainder done when all of a sudden I took a nice gash out of my finger with the trimmer. Ouch! Now to get the blood flow under control and also to sit down because I had gotten over heated while trying to finish my task, and I was feeling like I had better stop and sit down, or else.....

Thinking back on the incident, I have decided that I in no way should have hedge trimmers in my hands. I can think of many reasons. The main reason is that I am dangerous. Lots of laughs. I don't always see what is before me and I can no longer measure distances with my eyes. My rate of thinking and responding has slowed down considerably and I have poor judgment.

Although I know these things about myself, I still make poor decisions in some of my projects that I do around the home. There are always other ways to get the jobs accomplished, however. I have decided to look into getting outside help to trim the hedges the next time they need trimmed. By making plans ahead of time, I will not feel the need to get out there and do it myself. Planning ahead of time with the help of my wife, Sharon. This is so important in keeping me out of trouble. I've decided that it is worth the time.


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Jun 10, 2001


I am not ashamed of having Early Onset Alzheimer's Disease. Why should I be? I did not ask for the disease, or do anything to cause it. What do I have to be ashamed of? Why hide the fact that I have dementia? I am not proud of the fact, but neither am I ashamed of the fact. The certainty of the matter is that it is a fact and therefore I will share that fact. I do not fixate on it, or give it my whole life, although it will take my whole life in time. But this is something that has happened to me and is a reality in my life every moment of every day, I feel I have every right to explore it openly, to share it, and to deal with it in whatever way I choose.

There are some that I know that deal with it privately and I give them that right. I deal with my disease openly and find it to be very healthy for me, even resulting in some healing for me. I share because it is good for me and I hope that it touches many other lives.

No, I am not ashamed that I have a disease called Alzheimer's Disease. But now that I have it, my life will go on. I have yet many miles to travel, and by sharing, those miles for me will be much more blessed than by me being silent.

TOP ALZHEIMER’S/CAREGIVING WEBSITES: Dementia Advocacy and Support Network

The Dementia Advocacy and Support Network is a group of individuals diagnosed with dementia. They have come together to empower each other to grow and learn from each other’s strengths. By working together, they strive to promote respect and dignity for persons with dementia and to encourage support services.

I recommend their website because it offers some of the same types of community features and interactive support services that I have seen benefit so many of our caregiver members. Mary Lockhart, who is affect by dementia, leads a chat session specifically for people with the disease. I encourage you and your loved ones to take a look at this website and participate in the support network they offer. You can visit the DASN website at http://www.dasn.org/.

Brenda Parris Sibley has established one of the best clearinghouses for Alzheimer's Disease and caregiving sites 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.

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.

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.

SUBSCRIPTION INFORMATION

The 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.

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(c) 2001 Prism Innovations, Inc. All Rights Reserved.


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