The Beacon Newsletter


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The Beacon (tm)
“Tell me why – Show me how – Hold my hand”
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May 15, 2001                                                                                 Vol. 3 No. 9
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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 would like to dedicate this issue of the Beacon newsletter to all of you who are caring for a spouse. I hope that the phrase “eldercare” doesn’t upset you. I use it generically: I know that many of you are in your 50s and even if you are older than that, you don’t consider yourself “elderly.” I try to break away from it from time to time, so please excuse me if it pops up too often.

Spousal caregivers have a difficult role to fill. Much to your credit, you take on the responsibility for your loved one after decades of a caring relationship. It is never easy to assume the caregiving role, but somehow those decades make it seem more purposeful. Many adult children who take on responsibility for their parents have distance (physical and emotional) that they need to overcome. For a caring spouse, it may only be emotional.

That is not to say that it is easy. The role is still fraught with painful emotions, negative attitudes and physical stress. We have two items in this newsletter that I hope will make the transition from caring spouse to “caregiving spouse” easier. Edyth Ann’s tips and Lousia’s poem are two permanent resources now available on our website.

Speaking of Edyth Ann: I am pleased to announce that she and Doug Keck (who cares for his wife with Pick’s Disease) are promoting a benefit for dementia caregivers. The “CareGivers Fun Fest” brings together a worthy cause and some good humor. Read more about it below. In honor of the two organizers, ElderCare Online and ALZwell Caregiver Support will donate 20% of the proceeds from online sales of its Prism Caregiver Education Series (sales from May 15 through July 31). Please browse through the store and help support the FunFest.

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

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INSIDE THIS ISSUE

News and Views: Alzheimer’s Disease Research Updates
Prism Caregiver Education Series: Swing Music Promotion
“Waiting:” A Poem by Louisa Pomeroy
Alzheimer’s Answers: Diagnosing Alzheimer’s Disease: Tests, Processes and Issues
Activist Alert!: CareGivers FunFest
Featured Article: Tips on… Spousal Caregiving
Keepin’ Up With ALZwell: Recognition, Questions & Answers, Caregiver Stories
Chat Schedule: Updates for May
Subscription Information

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NEWS AND VIEWS: Alzheimer’s Disease Research Updates

We have added several new articles and news clips regarding recent scientific updates on Alzheimer’s Disease. We have been working closely with the Alzheimer Research Forum (http://www.alzforum.org) to bring you this breaking news. We also cull through numerous clipping services and publications to bring you well-written and insightful material.

We are very cautious about the articles that we add to our clipping service. Many times you will see self-serving press releases masquerading as “news.” Keep in mind that press releases are ALWAYS one-sided and OFTEN intended to pump up a company’s stock price or to sell their products. We will note every item that we post that is a press release. Having said that, some press releases are useful and interesting. Be an alert reader!

PRISM CAREGIVER EDUCATION SERIES: Swing Music Promotion

We are proud to offer our educational series of booklets, workbooks and multimedia tools, "The Prism Caregiver Education Series" through our caregiving websites, ElderCare Online and ALZwell Caregiver Support. We offer our educational materials in a variety of formats: printed booklets, portable CD-Roms, or online. -- choose the format that works best for you!

Over the last 3 1/2 years we have been able to provide our valuable booklets and tools to you free of charge. But as costs have risen to maintain the website, I have had to make the difficult decision to charge for these publications. Over the next two weeks, I am offering them at a reduced price as a "Thank You" to current newsletter subscribers. Use coupon number SUBS5101 when ordering for a 20% discount.

In addition, four new customers this month will receive a complimentary copy of a great music CD: “Swing City” or “Swing & Company: Live in Concert.” I loved these CDs when I first bought them. The music is uplifting and familiar to most people. I think the music is appropriate for a caregiver or an individual with dementia.

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. We carry seven titles, including:
     - Choosing a Nursing Home
     - Coping With Alzheimer’s Disease
     - Managing Medicines Safely

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.

The Custom Packages that we developed demonstrate our understanding of the issues and needs that our community members face. They are intended to help you deal with specific issues. We all like some savings, so we reduced the cost by 25% for each of these packages.

Visit our secure online shop to browse through our titles at http://store.yahoo.com/eldercareonline/.

Remember, for the next two weeks we will be offering our loyal newsletter subscribers a 20% discount. Use coupon number SUBS5101 when ordering!

WAITING: A Poem by Louisa Pomeroy

Louisa wrote me recently and shared this touching poem.

“I like to write Poetry during emotional times and at my husband's Funeral Service, my Minister read one I wrote, I would like to share it with you, if you don't mind.”

Waiting

I am waiting for a Telephone call,
That will change my life,
It will tell me that I am
Now a Widow and not a Wife.

My husband of forty-two years,
Lies in a Nursing Home bed,
With slippers of his feet and
Pillows surrounding his head.

Oh, how I wish I could get his
Clothes and take him home with me.
But, everyone says that would be wrong,
That he should stay in this Facility.

It is because I can't lift him any more,
Or do the other things that has to be done,
When the Nurse's take care of him,
I can see it take's more than one.

So, I sit here writing this
Poem and feeling numb,
I had hoped and prayed,
This day would never come...

(I wrote this Poem three days before my husband died.)

Thanks again for being so nice.

With warmest regards,
Louisa Fidencia Pomeroy

ALZHEIMER’S ANSWERS: Diagnosing Alzheimer’s Disease: Tests, Procedures, and Issues

Last week we continued our popular Alzheimer’s Answers series with a special presentation by Dr. Scott Small on the topic of “Diagnosing Alzheimer’s Disease: Tests, Procedures, and Issues.” Dr. Small is from the Taub Institute for Alzheimer’s Disease and the Aging Brain at Columbia University.

The casual but highly informative session covered topics such as:
     - Which tests and procedures are used to diagnose Alzheimer’s Disease?
     - Who is best able to provide a reliable diagnosis?
     - Why is an early diagnosis so important?
     - What changes now that you know?

The transcript for the chat session is now available. Click here to access it: http://www.ec-online.net/Community/transcript051101.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@aol.com) or Edyth Ann (edythann@netzero.net).

FEATURED ARTICLE: Tips on… Spousal Caregiving

When the loved one who a person is caring for is one’s spouse, there is often a lot of misunderstanding about what the role of “caregiver” is and what it means. Children do not often have any idea or inkling of how it affects both parents, and the parents often have a hard time understanding their children and their role. Often these misunderstandings can cause great strain between parents and adult children.

You can read the complete set of ten insightful tips at: http://www.ec-online.net/Knowledge/Articles/spousetips.html,

Edyth Ann has written a series of practical tips for caregivers. They are posted to the Alzheimer’s & Dementia Care Channel at http://www.ec-online.net/alzchannel.htm.

KEEPIN’ UP WITH ALZWELL: Recognition, Questions & Answers, and Caregiver Stories

The National Alliance for Caregiving recently ranked ALZwell among the top caregiving websites, saying, “There is so much here, it is truly a unique and valuable site where caregivers feel warmly welcomed and listened to.” That is such a great compliment to Susan Grossman’s work. I strive to continue to build and grow on her foundation to make ALZwell a responsive support service that meets the needs of dementia caregivers.

Dr. Franklin Cassel and I recently updated the Questions & Answers section of the ALZwell Caregiver Support website. We also added some very personal stories and the reflections of other caregivers. I see these features of ALZwell as two complimentary resources: one that focuses on very practical issues and needs; and the other that serves to unite caregivers in a common journey.

I welcome each of you to submit your own stories to the website and the Anger Wall as a way of releasing internal feelings and as a way to share with other caregivers who may feel alone or misunderstood.

Visit ALZwell Caregiver Support at http://www.alzwell.com.

CHAT SCHEDULE: Updates for May

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

May 16 (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.”

May 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 “Eating Tips.”

May 17 (Thursday 9:00 to 11:00PM EST) “ElderCare Answers:” Host Rich O’Boyle leads a self-help group for caregivers on the topic of “Understanding Geriatric Depression.”

May 23 (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.”

May 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 “Spousal Caregivers Unite!”

May 24 (Thursday 9:00 to 11:00PM 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.

May 30 (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.”

May 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 “Caregiver Emotions and Attitudes”

May 31 (Thursday 9:00 to 11:00PM 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.

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.

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, simply (1) reply to this email message with the word "UNSUBSCRIBE" in the Subject: line, and (2) include your e-mail address in the body of the message. Many e-mail programs do not put your complete name@ISP.com in the To: line, so it is impossible to track down your address.

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

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