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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October 15, 2001                                                                                 Vol. 4 No. 19
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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,

Caregiving challenges each of us to be a more caring and compassionate person in the face of dire human situations. Whether you are dealing with internal family problems, your loved one’s medical crisis or your own feeling of anger or grief, you still must manage the day-to-day personal chores and responsibilities. No one has an easy solution to how to balance the extremes – but the wisdom and insight of other caregivers provides a well that you can go to for refreshment and nourishment.

Where does one start after a diagnosis when all seems so dark and futile? How do some people do it year after year? All journeys have a starting place. That beginning often serves as a touchstone to help you along the way. Start with a foundation and return to that foundation when the road is dark or the burden too heavy. The foundation of caregiving and all human relationships is one of Love and Respect for yourself and your care recipient.

Loving and Respecting yourself means recognizing your limitations and asking for help BEFORE you need it. Loving and Respecting your care recipient means empowering him/her to care for themselves, making the most of their remaining abilities and easing medical problems. Love and Respect are the foundation of a healthy caregiving relationship. I hope that this simple insight combined with your own positive energy and spiritual strength can help you during difficult times.

This newsletter is fairly short – I have been focused on working with several writers to develop new articles for the site and they are gradually coming together. If you have suggestions on articles that you can not find anywhere else, please submit those suggestions directly to me. I want to make sure that the knowledge throughout the website represents what you caregivers really need.

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

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INSIDE THIS ISSUE

The Forum: Your Input Requested
Caregiver Voices: Submissions From Our Members
Alzheimer’s Answers: Transcript Available for Parkinson’s Disease Q&A
Grief and Caregiving: Chat Session Scheduled
Our Sponsor: Free Flowers With Any Purchase at Our Online Store
Solution Sets: Neighborhood Networks and Glossary of Eldercare Terminology Updated
Top Alzheimer’s/Caregiving Websites: Ageless Design Store
Chat Schedule: Updates for October
Subscription Information

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THE FORUM: Saving Money on Homecare Supplies: Your Input Requested

Here is an opportunity to get involved in our community and help out with the development of a very useful article that I am writing. I have gotten some feedback requesting more information about how caregivers can manage financial stresses better (a follow-on to the article “Tips on… Saving Money on Prescription Drugs).

I am writing an article on "Tips on... Saving Money on Homecare Supplies." The running idea behind the article is to give guidance and practical suggestions on where caregivers can save money without skimping on quality or comfort. A good approach is to look at what supplies you use most often:
   - adult diapers
   - latex gloves

   - handiwipes
   - disinfectant
   - bandages and wound dressings
   - laundry detergent
   - etc. and etc.

Then we can start to come up with ideas and strategies for reducing costs for the products that you use for them. Low-cost products are a good start, but so are techniques for reusing and strategies for eliminating the problem all together. Come on folks, let’s get creative!

As an added incentive, I will be highlighting the top five responses (either most $ saved or most creative) and rewarding the submitter with a package of beautiful iris flower bulbs for Fall planting. I have a few packages remaining from our online store promotion.

You can mail your ideas to me at rich@ec-online.net or post them directly to the Forum at http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=get_topic&f=3&t=000037. All ideas are worthy, no matter how much money they save. As we all know, every little bit counts! Save $1.00 a day or week and that adds up pretty quickly. I think the best way to save money is to quit smoking ($4.00 a day or more), but that is a totally different article… : )

CAREGIVER VOICES: Submissions From Our Members

Louisa Pomeroy provided this caregiving tip submission:

One time when I took my husband to be evaluated by a doctor, I didn't like how the doctor asked me the questions when my husband was sitting right next to me in his wheel chair. When we returned home I wrote the doctor telling him I thought he had been very rude to ignore my husband the way he did. If my husband weren't able to answer his questions, then and only then would I reply for him. The doctor called me to say he was sorry for the way the evaluation was handled but given the short time he is given for each patient, he thought that was the best way to do it.

About a week before my husband's next appointment with his family doctor, I would write the doctor a letter with information about how my husband was really doing at home. When the doctor came in the room he would already know how my husband was doing. The doctor thought this was a good idea of my writing him in advance of an appointment. So that is my tip, I am sure doctors would like more time to talk to the patients, but since they can't, this is the next best thing. I hope this tip will help.

God Bless all you Caregiver's! Warmest Regards, Louisa F. Pomeroy

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A new poem by Dorothy Womack:

BY YOUR SIDE:

Twyla told Craig - On their wedding day
Wherever you go - By your side, I will stay
For these vows are sacred - Spoken in love
Witnessed by people, angels and God

My love is growing, each day that we live
To you and you only, my heart I now give
The future awaiting is not ours to see
But always know this - By your side, I will be!!

Craig said to Twyla - I take you, my wife
Sharing my feelings, my soul and my life
Learning how two spirits transform into one
Realizing our adventure has only begun --

I cannot provide you with answers, always
But, be assured - By your side, I will stay
Whether storms or sunshine are found as our part
We'll stand together - United in heart

Our future's uncertain - Our past, now behind
The present moment holds treasures, to find
Love everlasting - Unconditional - Free
Descending from God - Imparted, so we

Know that life is too precious to waste any day
So, Twyla, remember - By your side, I will stay
She nodded - agreeing with all that he'd said
Together, each promised these vows as they wed
 

By your side - In the morning, when you open your eyes
In the daytime - contemplate me there by your side
When evening falls - In confidence, abide
Never fear for anything ---
For I'm right here ---
By your side.............

(c) 2001 Dorothy Womack **Written for Craig & Twyla

GRIEF AND CAREGIVING: Chat Session Scheduled

What is grief? Do people only grieve when their loved one dies? What is the relationship between grief and well-being? How do we better grieve and improve our quality of life?

I apologize for the short notice: In collaboration with the Alzheimer Research Forum, ElderCare Online will host a live chat with Dr. Tom Meuser of Washington University, St. Louis. Dr. Meuser is an authority on the psychosocial effects of providing care for Alzheimer patients. Join us on Monday, October 15 at 12noon to 1PM EST for the chat session. Despite the short advance notice, we will be taking advance questions for Dr. Meuser. Please e-mail them to rich@ec-online.net.

Alzheimer's Disease involves a series of losses, as pieces of a loved one's abilities, memories and identity vanish one by one before physical death occurs. Recent research by Dr. Meuser and a colleague suggests that caregivers who can grieve over these losses as they occur are less likely to suffer from depression after their loved one's death. Unfortunately, many caregivers are too overwhelmed by caregiving to grieve along the way, and then are crushed by their loss afterward. Join Dr. Meuser to learn about the effects of grief and coping with grief, ask questions, and share your experiences.

Dr. Meuser recently published the results of a study in the Gerontologist, a respected journal. His findings indicate that from the earliest stage of care providing, there are fundamental differences in the grief responses of adult-child and spouse caregivers. Adult-child caregivers experience a height of grief during the year or two prior to nursing home placement, whereas spousal caregivers experience their most intense feelings following nursing home placement. Anticipatory grieving may help lessen post-death emotional upset, but this really depends on the individual and where that person is in the dementia process. Adult-children seem to move towards grief resolution earlier than their spouse caregiver counterparts. These and other findings have clear implications for intervention and support. To learn more about the Caregiver Grief Study, visit Dr. Meuser's website at: http://alzheimer.wustl.edu/adrc2/CGStudy.htm.

Dr. Meuser is not just a respected researcher with strong academic credentials. He has extensive experience working directly with family caregivers throughout the course of the study. He is also known to many of us online as the head of the project that manages the Alzheimer List at Washington University. This list-serv is the “Grand Mother” of online communities and a point of reference for so many hands-on caregivers.

ALZHEIMER’S ANSWERS: Transcript Available for Parkinson’s Disease Q&A

Last week our Ask the Expert chat session with Dr. Lucien Côté from Columbia University went very well. The attendance allowed just enough time for the questions of attendees and a few advance questions submitted by e-mail. Parkinson’s Disease is not among the topics that we usually discuss on the websites, but I thought it would be of particular interest to a few people who have mentioned that their loved ones have the disease. The transcript is available at http://www.ec-online.net/Community/transcript101001.htm.

Dr. Côté is a renowned clinician-researcher who specializes in Parkinson's Disease. His early research focused on the basic neurochemistry of the basal ganglia. While he has a strong clinical research background, he also works closely with patients and their families on a daily basis. His research is focused on clinical pharmacology and clinical trials of new agents for Parkinson's Disease.

This session is a continuation of the program co-sponsored by ElderCare Online and Columbia University’s Taub Institute for Research on Alzheimer’s Disease and the Aging Brain. Previous chats in the series have focused on less common dementias, issues associated with diagnosing dementia, and research advances. Please visit the homepage for “Alzheimer’s Answers” at http://www.ec-online.net/Knowledge/SolutionSets/alzanswers.htm or the Taub Institute at http://www.alzheimercenter.org for additional information.

OUR SPONSOR: Free Flowers With Any Purchase at Our Online Store

To celebrate our 4th Anniversary and our theme of “Growth,” we are offering a free gardening package for all customers at the ElderCare Online store throughout the month of October. I would normally like to surprise our customers, but I will tell you that the Fall Planting Package includes some iris bulbs that you can plant this season and enjoy in the Spring. The package also includes a coupon good toward future purchases on the website.

While we have had a good number of customers come through our doors, I fear that the word hasn’t gotten out. Don’t be turned of by the online store. We have not “sold out” or “gone commercial.” It is just a way for us to provide our top-notch booklets directly to you without taking on the costs of publishing them and distributing them to bookstores and Amazon.com. Not that there is anything wrong with that – it just raises the cost of the booklets and makes them too expensive for many of you.

Our practical guides in the Caregiver Education Series include:
- Coping With Alzheimer’s Disease
- Understanding Incontinence
- Talking With Your Doctor
- Managing Medicines Safely

You may order the booklets in printed format or as online tutorials. Our eldercare workbooks are essential tools for caregivers who are beginning to take on responsibility for aging loved ones. These workbooks help you to save time with medical appointments and information gathering. Additionally, we sell the Prism Care Card that gives members discounts on prescription drugs.

I encourage you to revisit the store. Many of our items are as low as $3.95. Having these booklets available will help you over the long run to build a firm foundation of knowledge and expertise. Access the online store at http://www.store.yahoo.com/eldercareonline and receive your free Fall Planting Package. Yahoo! hosts our store, ensuring that it is safe, reliable, and private.

SOLUTION SETS: Neighborhood Networks and Glossary of Eldercare Terminology Updated

ElderCare Online isn’t just a great place to find useful articles and support caregivers. It is a great place to do research and find resources. Our database of resources includes the state-by-state Neighborhood Networks of state and local services for caregivers and the Glossary of Eldercare Terminology of words and terms you encounter on a daily basis.

Our Neighborhood Networks include updated links to all fifty state in the USA. We have collected the most helpful websites of government information, county services, aging organizations, support groups, and Alzheimer’s Disease services. If you are looking for state healthcare services, information on filing Medicare or Medicaid claims, local Meals on Wheels programs, county aging resources, or an Alzheimer’s Disease support group, we have thousands of resources for you to browse through. And they are not just plopped down into an endless page of links – they are organized, checked, and selected for their usefulness. You can access the Neighborhood Networks directory at http://www.ec-online.net/Community/Neighborhood/neighborhood.html

Our Glossary of Eldercare Terminology is a free online dictionary that includes hundreds of listings. It helps you to quickly get handle on some of those complicated terms that healthcare professionals toss around so freely. We specialize in Medicare and Medicaid terms that government bureaucrats use constantly (and seemingly intended to confuse us even more). You can access the complete glossary at http://www.ec-online.net/Assistants/glossary.htm

Do you have an idea for another type of online tool or informational service? We would love your feedback! E-mail us at rich@ec-online.net.

TOP ALZHEIMER’S/CAREGIVING WEBSITES: Ageless Design Store

E-commerce outfits on the Internet are a dime a dozen. It seems that so many of these stores popped up with a goal to dominate a specific retail segment – to be a “category killer.” But where does that leave dementia caregivers? You and I know that caregivers fall through the cracks in so many areas – the financial system, social networks, political advocacy areas, and just about everywhere else. Only a few companies and organizations really seem to understand what caregivers are concerned about and what they REALLY want. A massive store selling products made for “the normals” ends up being disappointing. Through ElderCare Online and ALZwell Caregiver Support you are connected to a network of companies, organizations and professionals who really do understand the needs and concerns of you as an Alzheimer’s and elder caregiver.

This month I am featuring Ageless Design because they have created a new resource, an online store that has brought together a unique collection of products expressly for dementia caregivers. Mark and Ellen Warner have their heart in the business of helping caregivers. They maintain the Ageless Design website, publish the “Complete Guide to Alzheimer’s Proofing Your Home,” and now they operate the Alzheimers Store.

The Alzheimers Store is unique because it offers carefully selected products for people with Alzheimer’s Disease and their caregivers. Mark and Ellen’s professional expertise comes in handy because they offer advice on which products are most useful based on the stage of the disease that your loved one is in, solve specific problems, and have creative applications for caregivers. You will find many products in categories such as Safety, Wandering, Incontinence, Falls, Caregiving, and Activities of Daily Living. The store is easy to navigate, secure, and fast to load. Even hard-to-find products are reasonably priced.

Most importantly, you can trust the Warner’s professional judgment and credibility. This is not another fly-by-night dot.com. Ageless Design has been around for years and will continue to be a crucial information resource for caregivers. I highly recommend the Alzheimers Store, not just for dementia caregivers, but also for people caring for any homebound loved one. You can access the store directly at http://www.thealzheimersstore.com, or first go to the main Ageless Design website at http://www.agelessdesign.com.

CHAT SCHEDULE: Updates for October

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. Please remember that we have a new chatroom. If you had trouble using the old one, please give it another try!

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.

October 15 (Monday 12:00 to 1:00PM EST) “ElderCare Answers:” Guest Host Tom Meuser hosts a discussion of “Grief and Caregiving.” Please send advance questions to rich@ec-online.net.

October 17 (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.”

October 17 (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.”

October 18 (Thursday 9:00 to 11:00PM EST) “ElderCare Answers:” Host Rich O’Boyle leads a discussion on quality of life for caregivers and care recipients.

October 23 (Tuesday 9:00 to 11:00PM EST) “Parent Caring:” Host Brian Duke leads a discussion group for people caring for aging parents. New session every other Tuesday!

October 24 (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.”

October 24 (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.”

October 25 (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.”

October 31 (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.”

October 31 (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.”

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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