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, 2004                                                                                 Vol. 7 No. 4
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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 7 th 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.

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INSIDE THIS ISSUE

Feature Article: Where Is the Joy in Alzheimer’s Caregiving? By Beverly Bigtree Murphy
Book Review: My Mother’s Voice by Sally Callahan
Caregiver Store: “Elder Care: Balancing Work and Family” + Buy One, Get One Free
Alzheimer’s Answers: “Parkinson’s Disease Q&A” with Dr. Lucien Côté
Subscription Information

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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

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.

CAREGIVER STORE: “Elder Care: Balancing Work and Family” + Buy One, Get One Free

There are literally hundreds of books that have been written to guide families through the caregiving journey. Many of them are exceptional – but you probably only need to buy or read four or five of them, depending on your specific needs.

If you are working full-time (like most caregivers), John Paul Marosy’s practical book, “Elder Care: A Six Step Guide to Balancing Work and Family” should be on your reading list.

John Paul’s hands-on book is the only resource of its kind that I am aware of. It is the only book that addresses some very difficult issues that caregivers with conflicting responsibilities at home and in the office regularly face. For example, detailed questionnaires that help to assess how your eldercare situation is impacting work. It also gives you insights on what to say – and what NOT to say to your supervisor.

The book includes information, tips, worksheets, and wisdom on the following topics:

  • Assessing your situation at work: the impact your elder is having on your work, the level of trust between you and your supervisor, etc.
  • Assessing your eldercare situation: feelings and concerns, holding family meetings, setting up an information folder, etc.
  • Learning about resources at work
  • Weighing options and implementing a plan
  • Long-Distance caregiving
  • Eldercare Resources

John Paul’s book is available directly from ElderCare Online’s secure caregiving store at http://www.ec-online.net/Store/store.htm

We are offering a special bonus: If you buy ANY product from our store (including John Paul Marosy’s book) we will give you free lifetime access to our “Managing Medicines Safely” online tutorial.

We offer informational booklets, videos, and audio cassettes in our store, including:

  • “Coping With Alzheimer’s Disease” Learning Resource Guide (booklet)
  • Seven educational booklets (cd-rom)
  • “Prism Personal Planner and Organizer Special Edition” (workbook)
  • “Show Them That We Care: A Nine-Step Guide to Visiting Residents in Nursing Homes” (video and handbook)
  • “Elder Care: A Six Step Guide to Balancing Work and Family” by John Paul Marosy (book/workbook)
  • “Surviving the Holidays and Special Occasions” (audio cassette)

Visit our store now and claim your free “Managing Medicines Safely” online tutorial at http://www.ec-online.net/Store/store.htm. You can order online with our secure credit card processor, or call us at 1-888-774-7655 to place your order.

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.

SUBSCRIPTION INFORMATION

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