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 1, 2001                                                                           Vol. 4 No. 18
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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,

All too often we focus on the challenges, burdens and tasks associated with our caregiving responsibilities. Sure, it is difficult, especially the added pain of Alzheimer's Disease or end-of-life caregiving. But there is something missing from the discussion of caregiving (even on this website). There are rewards and benefits to being a caregiver. By refocusing the discussion to emphasize the benefits of caregiving, hopefully we can come to accept these changes and learn and grow from the experience.

I will be the first to admit that ElderCare Online has a heavy focus on the practical aspects of caregiving - and these necessarily deal with managing problem behaviors or coping with difficult issues. Nevertheless, we strive to emphasize positive ways to improve quality of life. As a caregiver to a parent or spouse you have the opportunity to grow through your experience. Each of us can make the choice about whether to make the best of a situation or to focus on the negative. Too often, there is family and emotional baggage that push us down the wrong path. Regardless, there are benefits to caregiving: One can reconcile oneself for past failures within the time allotted while your loved one is still alive; one can reach a greater self-understanding by being open to healing rifts and examining oneself; and one can complete the cultural cycle within a family of caring for a dependent loved one.

I recently attended a conference for professional caregivers. One speaker shared a quote on cancer caregiving that I thought was very appropriate for our members. And I think it is especially powerful for Alzheimer's caregivers. "Cancer offers the gift of time, its only kindness." We know that our loved one will pass away - but as their caregiver, we have the opportunity to make the most of that time. Time truly is a gift, but we have to use it wisely.

I don't want to sound naïve or out of touch: the pain and sacrifice do not go away completely. It just allows the caregiver to manage day-by-day with an improved frame of mind. Sharing one's emotions with family and friends and connecting with other caregivers can enhance the experience even more.

Finally, I am happy to say that this month we celebrate the 4th Anniversary of the birth of ElderCare Online. It seems like just yesterday that I posted the first few articles and message board up on a tiny homespun website. A lot of water has flowed under the bridge for me and some of the first members and visitors. I know that I have grown enormously in so many ways. The theme for this fourth year will be GROWTH. Not necessarily about growth in traffic or revenue or membership (we welcome all of those), but more importantly in personal and spiritual growth.

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

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INSIDE THIS ISSUE

The Forum: We Laugh to Survive
Book Review: My Mother's Voice by Sally Callahan
Alzheimer's Answers: "Parkinson's Disease Q&A" with Dr. Lucien Côté
Our Sponsor: Free Flowers With Any Purchase at Our Online Store
Partners in Excellence: Children of Aging Parents, Inc.
Keepin' Up With ALZwell: Questions & Answers Updated
Feature Article: Where Is the Joy in Alzheimer's Caregiving? By Beverly Bigtree Murphy
Chat Schedule: Updates for October
Subscription Information

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THE FORUM: We Laugh to Survive

We all need a good laugh at least once a day. Some medical researcher didn't say that... I did! Many people find it difficult to find humor when they feel so crushed by illness or numerous responsibilities. But the wisest among us are still able to see a glimmer of absurdity in painful circumstances, or a reason for a good belly laugh when pressures become too much. I recall seeing a documentary on an isolated tribe where part of their funeral ritual is to all laugh loud and hard. They say it is to scare away the demons. It is the same for us... a good hearty laugh can often dispel fears and concerns, at least for a little while.

The "We Laugh to Survive" section within our ElderCare Forum contains some racy jokes, a handful of Blonde jokes (apologies to Vicki), and plenty of good clean fun. We even have a section for caregiver jokes and funny anecdotes. The first rule of the Joke section is "Don't get offended!" We put the adult humor is one area in case you are prim and proper. As for the blonde jokes, I guess you can be creative and insert whatever minority or ethnic group of your choice. I often add a few jokes every month, but I encourage you to add your favorites as well.

You can access the joke section at http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=forum&f=21

BOOK REVIEWS: My Mother's Voice by Sally Callahan

In a very honest and poignant manner the author shares her experiences and the knowledge she gained while serving as her mother's primary caregiver for more than ten years. It is an invaluable source for information, short "to do" lists and guidance for anyone who has a loved one that has been diagnosed with Alzheimer's Disease, but it's particular strengths are legal and end-of-life issues.

"My Mother's Voice" is an extraordinary book written by an extraordinary individual. What makes author Sally Callahan so unique is the unconditional and selfless love, which guided and controlled all she did during her agonizing fifteen-year journey as her mother's primary caregiver-surrogate. It was this love that helped her to focus purely on her mother's needs and wishes while dealing with the formidable task of caring for her mother. As she helplessly witnessed her mother's slow deterioration from the ravages of Alzheimer's Disease, she was also suddenly thrust into a world fraught with difficult medical, legal and financial decisions, conflicts with siblings and at time medical professionals, and the physical and emotional exhaustion which plagues the caregiver on a daily basis.

You can read the complete review at http://www.ec-online.net/Knowledge/BookReviews/callahanvoice.htm. You may purchase the book on Amazon.com or browse through other caregiving books, reviews and excerpts in the ElderCare Bookstore at http://www.ec-online.net/Connections/bookstore.htm.

ALZHEIMER'S ANSWERS: Parkinson's Disease Q&A with Dr. Lucien Côté

Our ongoing series of Ask the Expert chat sessions continues on Wednesday, October 10 with a discussion of "Parkinson's Disease Q&A." Dr. Lucien Côté, MD, an associate professor of neurology from Columbia University in New York, will lead the discussion and take questions from attendees. Advance questions submitted by e-mail to rich@ec-online.net will also be accepted.

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.

We will have a second Ask the Expert session in October, but have not scheduled that date yet.

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.

PARTNERS IN EXCELLENCE: Children of Aging Parents, Inc.

I pride our websites on the partnerships that we have developed over these last four years. These aren't advertising swaps or paid promotions that you see on our websites. Our "Partners in Excellence" program is the result of years of collaboration and mutually respectful relationships.

Our newest partner is Children of Aging Parents, Inc., (CAPS) a non-profit foundation dedicated to supporting adults who are caring for their aging parents. What started about 25 years ago as a "coffee clatch" for like-minded caregivers has grown over the years into an organization that provides information and support to families in 16 states. The organization, headed by Brian Duke, is dedicated to a long-term mission of understanding the needs of caregivers and providing them information and support through whichever channels are available.

Our relationship brings together the strengths of each of our organizations - CAPS provides in-person information and support, while ElderCare Online and ALZwell.com provide virtual support and information. It is a natural for each of us to help the other with our respective strengths. Brian and I will be working closely to share our own knowledge and wisdom, and to facilitate that same sharing among our members.

Beginning this month, Brian will host a new bimonthly chat session on Tuesday nights specifically for children with aging parents. These "Parent Caring" chats will follow in the tradition of our regular chat sessions with friendship, wisdom, support, and knowledge being the prime objectives. Brian is not only a non-profit executive, he has serious experience under his belt as the caregiver for his mother who was affected by Alzheimer's Disease. As if that weren't enough, Brian also directs healthy aging projects at the University of Pennsylvania. In November and beyond, I will be working with CAPS to make presentations at their conferences and provide knowledge from our extensive eldercare library to their newsletter, The CAPSule.

I encourage you to visit the CAPS website at http://www.caps4caregivers.org and to participate in their support groups if they offer them locally. Links to CAPS are included throughout the ElderCare Online community areas, as well as the Neighborhood Networks of state and local resources.

KEEPIN' UP WITH ALZWELL: Questions & Answers Updated

Our latest batch of questions and answers has been uploaded to the ALZwell Caregiver Support website. Featured Questions & Answers:
- My 83 year old mother has problems remembering if she has taken her daily medications for that day of the week. Is there a technique being used that we can adopt to help her determine if she has already taken her daily medication?
- I have an aunt with Alzheimer's Disease. How many stages are there? My family and I would like to know.
- I am 47 years of age and am worried about that fact that I might be a victim of Alzheimer's Disease. My father had it and by all accounts my Grandmother as well. Can u help?
- My Grandmother has late stage Alzheimer's/dementia. Is this swallowing problem common in these late stages? Any suggestions on how to stimulate swallowing?

Visit ALZwell Caregiver Support at http://www.alzwell.com for the answers to these and many other questions, access to The Anger Wall, and caregiver stories.

FEATURE ARTICLE: Where Is the Joy in Alzheimer's Caregiving? By Beverly Bigtree Murphy

The author took care of her husband at home through the duration of his years with Alzheimer's. she did it with private home health care, respite breaks for short vacations, and what amounted to a great deal of personal determination.

She writes, "While everyone expressed concern with my health, they all seemed to miss the point that Tom and I were going to be the ones living with the decisions, not them. As for Tom, once his disease became apparent, he ceased to have any real value outside of our immediate circle. He became a non-person who was nothing but a burden in the eyes of everyone around him."

"We quickly learned that once cognitive functions become affected, you are not only avoided, you are in a very real sense despised, because your very presence points out how fallible we humans really are. For some reason, keeping Tom home was to invite a psychiatric classification and when I didn't roll over and assume the victim stance, I was labeled as overtly controlling, unrealistic and finally, an extremist. I wondered when 'commitment' and 'obligation' became expressions of emotional decay."

Beverly writes eloquently about her challenges to grow within her relationship with her husband even in the face of intensive caregiving responsibilities for her husband and negativity from those around her. Her story is an inspiration that "it can be done" and that there truly is JOY to be found in the most trying of circumstances.

You can read the complete article at http://www.ec-online.net/Knowledge/Articles/joymurphy.html

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!

Please respond to our Chat Preferences survey at http://www.zoomerang.com/survey.zgi?5BQTRNNMPPW9S92RJPR5VDCW. If you have trouble using that link, you may access the survey from the website front page under "What's New." Your input is essential to help us improve the quality and value of our chat sessions.

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 3 (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 3 (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 4 (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 9 (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 10 (Wednesday 1:00 to 2:00PM EST) "Alzheimer's Answers:" Host Lucien Côté, MD, from Columbia University answers questions and leads a discussion on "Parkinson's Disease." E-mail your advance questions to rich@ec-online.net, and stay tuned for the transcript (posted the following day).

October 10 (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 11 (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 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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