The Beacon Newsletter


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The Caregiver’s Beacon (tm)
“Tell me why – Show me how – Hold my hand”
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August 1, 2001                                                                                 Vol. 3 No. 14
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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,

Summer appears to be flying by. It’s August already! We’re all trying to keep cool, relax, and stay on top of things all at the same time. It’s not easy. I received so many comments from the last newsletter, mostly due to the article on saving money on prescription drugs. It also may have been from the little bit of political commentary I made as well. In the interest of fairness (and continued good humor), I am reporting in this issue about the Democrats’ evolving prescription drug relief proposals.

I contacted some of my old sources back in Washington from my days as a Capitol Hill reporter and pieced together a perspective on the other prescription drug relief proposals. Unfortunately, it seems that the Democrats are just about as out of touch with reality as the Republicans are. As with so many of these “Inside the Beltway” issues, you have to double-check your math to make sure that you are not missing a comma or a decimal point. Until very recently, the leading proposal from the Democrats was to charge Medicare beneficiaries something like $53 additionally each month for a benefit that would cover half of the cost of their drugs. There would be some limitations and other fine print, but that’s what it would boil down to.

Now, as you would imagine, that is an eye-popping amount to have to pay out-of-pocket every month in additional to all of your other Medicare costs. I never reveal my sources when they request anonymity, but let’s just say that “a knowledgeable source” said that that initial estimate of $53 per month was no longer on the table. Apparently, congressional staffers had conducted some research with real live seniors and were shocked. Now the staffers are back to the drawing board trying to rejigger their math to lower the monthly cost “down to the low 30s.”

Remember the Old Maid game from last newsletter? Well, this will amount to a reshifting of the costs back to the consumer. If you want lower monthly premiums, then you will have to get reduced benefits. Who knows where the final Democrat proposal will wind up, but I can guarantee that if the monthly cost goes down, then the amount paid for by the Government will also go down. You get what you pay for.

Now that we have that on the table, I want to give you all some good news. Edyth Ann and Doug Keck pulled off the Caregivers FunFest in Burlington Iowa last weekend without a hitch. I have seen some of the pictures, and have encouraged them to post them to the Internet. I will let you all know the address where they are posted as soon as I know it. ElderCare Online and ALZwell’s parent, Prism Innovations is proud to announce that we made a $250 contribution to the Funfest treasury. Those funds will go to help support respite for family caregivers. Thank you to all of our customers who purchased books from our online store – you made the contribution possible.

The next issue of the newsletter will mail out on or about August 18, so I have included the complete chat schedule. We may send out an “emergency update” somewhere in the middle of the month if we are able to schedule the Alzheimer’s Answers discussion group. That chat session will feature a host from the Taub Institute at Columbia University on the topic of Parkinson’s Disease.

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

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INSIDE THIS ISSUE

The Forum: New User’s Guide, New Rooms, New Icons
News & Views: Recent Developments of Interest to Caregivers
Activist Alert: Ageless Design Stamp Petition
Keepin’ Up With ALZwell: Questions & Answers Updated

Feature Article: Promises, Promises by Mark Edinberg, Ph.D.
Caregiving Tips; Saving Money on Prescription Drugs Update
Top Alzheimer’s/Caregiving Sites: Unsung Heroes
Chat Schedule: Updates for August
Subscription Information

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THE FORUM: New User’s Guide, New Rooms, New Icons

We have heard numerous requests for assistance for newcomers. We are listening! I spent a few days last week compiling a brand new Newcomers Posting Guide. The guide walks you through getting started in the Forum, choosing a name, and making your first post, among other topics. It is especially helpful in giving guidance on where to post your topic so that it fits in best. I hope that this becomes an incentive to all of the newcomers who have registered but have not made their first post yet.

We have also added several new icons. We like them because they allow us to add a little bit of humor or creativity to our posts. You are still allowed to add links to your messages, but these add a bit of color. Most of them were requested by our members. We can probably add a few more, but then we will have to start removing others. If you have special requests for new icons, let us know!

Finally, we have added a “New Caregiver’s Meeting Room” in the Alzheimer’s Disease section. This is the third in our popular group of meeting rooms. They tend to spring up spontaneously or with a little collaboration among interested caregivers. We have a “Former Caregiver’s Meeting Room” and a “Spousal Caregiver’s Meeting Room” as well. Again, if you have been reluctant to join in the discussion, or if you are very inexperienced with caregiving, please come right to the New Caregiver’s Meeting Room or contact on of the moderators for a helping hand.

New Caregiver’s Meeting Room: http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=forum&f=40

Spousal Caregiver’s Meeting Room: http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=forum&f=29

Former Caregiver’s Meeting Room: http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=forum&f=38

NEWS & VIEWS: Recent Developments of Interest to Caregivers

Our collection of news articles has been updated. We browse many of the best sources for news available and then collect digests of the articles into The Forum message board. You can read some recent articles dealing with topics such as:

- Down’s Syndrome and Alzheimer’s Disease
- Use of MRIs to detect Alzheimer’s Disease
- Updates on the Alzheimer’s Disease vaccine
- Public opinion polls on stem cell research
- A whole new section on Parkinson’s Disease Updates
- Research updates from scientific journals provided by the Alzheimer Research Forum

You can access the complete article digests in The Forum at http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=forum&f=26

ACTIVIST ALERT: Alzheimer’s Awareness Stamp Petition

Activists are down to the wire on submitting a petition to create an Alzheimer’s Awareness postage stamp. If you haven’t signed the petition already, they need your support!

Ms. Kathy Siggins of Frederick, Maryland, and Ageless Design, Inc., a Florida-based senior service organization, have created a way for people around the country to help promote awareness of Alzheimer's Disease and raise funds for research by petitioning the U.S. Postal Service for an "Alzheimer's Research" stamp. More than four million people in the U.S. have Alzheimer's Disease and an additional 19 million are affected as caregivers. “The only obstacles between us and a cure are funding and awareness,” Siggins said.

To support this drive people can go to http://www.agelessdesign.com/alz-stamp.htm.

KEEPIN’ UP WITH ALZWELL: Questions & Answers Updated

Each month Dr. Franklin Cassel adds the latest responses to questions that have been posed by visitors to our ALZwell Caregiver Support website. We welcome these questions, but also think that visitors can also get a response and support in our chatroom and message board.

You can read the current Questions & Answers at http://www.alzwell.com/alzwellqa.html.

FEATURE ARTICLE: Promises, Promises by Mark Edinberg, Ph.D.

While not necessarily legally binding, promises we make to our family members bind us in many ways. Guilt, poor decisions, potentially harmful decisions, and harm to family members can all come out of promises made in the heat of a crisis, at a moment when one is fearing a greater harm to another family member, or even simply made in ignorance of what the promise might entail in the long run. Not making a promise can be difficult and require forethought about the situation. Reworking a promise once made is also an option to handling these dilemmas. Sometimes, we sometimes need a way to rework a promise when the person who extracted the promise from us is no longer able to understand us or has died.

Some common promises made to older relatives are:

  • Promising to "Never put me in a nursing home."
  • Promising never to sell the family business
  • Promising never to sell the family home
  • Promising to "take care of a handicapped or incapacitated relative
  • Promising to continue a family feud (e.g. "Never talk to cousin Ned because of what he did in 1943, and promise me you will never forgive him or his children.")
  • Promising to not take a specific course of action about a stock or investment (e.g. "Never invest my money in banks").

The list of potentially damaging promises goes on and on.

To read Mark’s complete article, including practical suggestions on dealing with (and keeping) promises, visit http://www.ec-online.net/Knowledge/Articles/promises.html.

Mark is a psychologist, author, and organizational consultant who has been working in the field of Gerontology for 30 years. He has been a professor at the University of Nevada, Reno and the University of Bridgeport, for the last decade, and is in private practice primarily working with older adults and their families.

CAREGIVING TIPS: Saving Money on Prescription Drugs Update

Since we first published our article “Tips on… Saving Money on Prescription Drugs,” we have gotten so many hits on it, requests for reprints, and suggestions. I am adding two more great tips (thanks to our members). The original article has been updated and can be found at http://www.ec-online.net/Knowledge/Articles/drugcosts.html.

Two additional tips:

Split large pills into two doses: Be very cautious about doing this! Many prescription drugs actually cost the same (or very close) regardless of the dosage. So your 20mg. pill may cost the same as a 40mg. pill of the same medication. Ask your doctor if she can prescribe the larger dosage that you will then split in half before taking it. Again, be very cautious doing this. Not all medications are formulated to be split (they may have a special coating, work on a time-release, or be in capsule form). Ask the doctor and pharmacist if you can split the pill. Keep in mind that you now have an added step before giving the medication to your loved one. If you don’t think that you will remember to give the proper dosage, then don’t take the risk. If this is done properly, it can save up to 50% on the specific drug costs!

Go South or North for savings: Here is another cost saving tip that is somewhat risky, but can provide significant savings if done properly. Drug costs are often much lower in Canada and Mexico due to trade laws and lower manufacturing costs in those countries. For years, Americans have been visiting foreign countries to buy prescription drugs that are too expensive or unavailable in the U.S.A. Americans are permitted to import a 90-day supply of approved drugs from these countries for personal use. The Food and Drug Administration and the U.S. Customs Service have a vague policy on the importation of unapproved and experimental drugs. Check with the Food and Drug Administration and your physician before making plans to import foreign drugs. Drugs which are subject to abuse (such as steroids, amphetamines, and some sedatives) are more tightly controlled. Always bring a copy of your doctor’s prescription with you to smooth the way back.
- http://www.fda.gov/ora/import/purchasing_medications.htm
- http://www.fda.gov/ora/import/pipinfo.htm
- http://www.customs.ustreas.gov/travel/travel.htm

There is some controversy about the safety and efficacy of non-U.S. drugs. Drugs made and sold overseas may not adhere to the same manufacturing and storage standards as in the U.S. While most drugs companies are huge multi-nationals, not all of them sell the same drugs in the same countries. Furthermore, the standards for storage and shelf-life may be different, especially if the drugs are stored in a hot place or have expired. Make sure you buy all of your prescription and non-prescription drugs from a reputable pharmacy. Some pharmacies may relabel drugs, sell expired pills, or sell counterfeit pills. Be wary of scams and don’t buy something if it doesn’t seem right.

TOP ALZHEIMER’S/CAREGIVING WEBSITES: Unsung Heroes

We continue our focus on special caregiver websites. This month we highlight “Unsung Heroes,” a compilation of names of individuals who have died from Alzheimer’s Disease. Brenda Race, a prolific poetess and experienced caregiver began building the small but ambitious website as a memorial to her mother and other loved ones of friends.

She writes about the disease that is attacking our loved ones from the inside, rather than the toll the disease takes on the caregivers on the outside. I won’t say that this is a “refreshing” perspective, but it certainly opened my eyes and gave me new insights into the disease. Understanding what is going on inside our loved ones is a powerful weapon against “the unseen enemy.”

Please take some time to visit Brenda’s website, “Unsung Heroes” at http://www.geocities.com/brace03/heros.html. She has generously offered to place the names of other individuals onto her website as a memorial to them.

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.

CHAT SCHEDULE: Updates for August

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.

August 1 (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.”

August 1 (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.”

August 2 (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.”

August 8 (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.”

August 8 (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.”

August 9 (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.

August 9 (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.”

August 15 (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.”

August 15 (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 “Late-Stage Dementia.”

August 16 (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.”

August 22 (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.”

August 22 (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 “Home Care.”

August 23 (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.

August 23 (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.”

August 29 (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.”

August 29 (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 Get a Life!”

August 30 (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 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.

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


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