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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February 15, 2002                                                                                 Vol. 5 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,

The Chinese ideogram for “crisis” is composed of two characters: one for “danger” and one for “opportunity.” As with crisis situations, we often do not see the second. We are too focused on the imminent danger. Unfortunately, the very nature of a crisis situation limits our ability to step back and think creatively.

When terrorists struck New York City and Washington, D.C. on September 11, few people were positioned to think positively about the situation. I know that I was aghast at the loss of live and threat to our national security. But after the immediate shock of the acts, we started to see something different and unexpected: an outpouring of patriotic concern for the rescue workers, lost, and injured that is extending to a better sense of unity in our country.

Don’t think me glib or disrespectful: Remember the final scene in the old Grinch cartoon when he steals the entire town’s Christmas presents, but nevertheless, the residents gather to celebrate. They are demonstrating that in the face of loss we can often find that true core thing that represents the real meaning and importance. In this case it is the Spirit of Giving, not the gift itself.

So how does this impact the caregiver? Many caregivers enter the role with the onset of a medical crisis. Perhaps it’s a diagnosis of dementia, a stroke, a serious fall, or the death of an elder’s spouse. Dealing with emergency rooms, hospital bureaucrats, and homecare arrangements would overwhelm most people.

Where does one find that power for revelation? Each of us has to find that power within ourselves to break away from the crisis at hand (while not neglecting the immediate danger), and open up to the opportunity for personal growth. It’s not going to be the same journey for each of us. Maybe one will find strength in a loved one’s nursing home placement (now you can serve as an emotional support, rather than being consumed with daily personal care tasks); perhaps the loss of one parent enables a mature and honest exchange of family issues and grievances; or finally, a visit to the emergency room may turn up unknown medical conditions or home situations that can be alleviated.

Remaining positive in a dangerous situation is a matter of perspective. I’m not delusional when I say that it is possible to find joy, wisdom, and personal growth from a caregiving crisis. Sometimes the key is to actively believe that events will turn out for the best. You must search for the silver lining because it is always obscured by the immediate danger.

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

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INSIDE THIS ISSUE

Feature Article: Moving Into a Nursing Home: A Guide for Families by Peter Silin
Feature Article #2: Good Relationships: A Recipe by Tom Schumacher
Book Review: Nursing Homes: The Family’s Journey by Peter Silin
Alzheimer’s Disease Research: Studies at the Goldman Institute
Caregiver Education: Free Online Courses for Caregivers
Top Alzheimer’s/Caregiving Sites: Brenda Parris Sibley at Suite 101
ElderCare Forum: Latest Postings
Chat Schedule: Updates for February
Subscription Information

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FEATURE ARTICLE: Moving Into a Nursing Home: A Guide for Families by Peter Silin

The move to a nursing home is more like a journey than an event, for both the resident and the family. By that I mean that the actual admission day is one step in a process. If you think of it like that, you can think of moving in as three steps — pre-admission, admission day itself, and post admission adjustment. This will also help you figure out how to face it.

The article includes insights into the role of the caregiver in the elderly person’s move, emotional preparation, and admission day. To read the complete article, go to http://www.ec-online.net/Knowledge/Articles/nursinghomemove.html

Peter S. Silin is a geriatric care manager in Vancouver, Canada and the author of "Nursing Homes: A Family's Journey." He is a geriatric social worker and individual and couple therapist. Peter has worked in all areas of eldercare, including the British Columbia long-term care community system, nursing homes, extended care units, geriatric assessment and medicine units, acute care, in-patient and outpatient hospital units, and various family therapy settings. He is also a participant in the ElderCare Forum community message board.

FEATURE ARTICLE #2: Good Relationships: A Recipe by Tom Schumacher

Why do people fall in love … and then out of love? What makes a great friendship? How can you develop good relationships with your coworkers and clients? How well do you get along with your siblings and parents? Is there a key ingredient that makes relationships work well?

Although we are dealing with a complex set of dynamics, the short answer is “Yes” -- there is a key ingredient that usually harbors well for all types of relationships. The key ingredient is: The other person sees you, treats you, and feels about you, as you would like to be seen, treated, and felt about. To the degree that their view of you is in sync with the view you would like them to have, to that degree you will feel good both about them and yourself.

Dr. Schumacher’s complete article is available at http://www.ec-online.net/Knowledge/Articles/relationshiprecipe.html. Dr. Thomas J. Schumacher is a pshychotherapist who specializes in individual, couple, and marital counseling. He maintains practices in New York City and Long Island.

BOOK REVIEW: NURSING HOMES: The Family’s Journey by Peter Silin

“Nursing Homes: The Family’s Journey” by Peter Silin is tightly focused on the process that families go through when they make decisions about placing a loved one in a facility. This is both a very humanistic book and a very practical one (my favorite combination!). It serves as a guide through the decision-making process, offering assistance on the numerous issues associated with deciding about long-term care. This is a book written with the insight of a sociologist and geriatric care manager, someone who sees the human side of the equation first. On the practical side, the author shares with you the ins and outs of moving into a facility and making life there the best possible. Here you see his years of experience shine through in a reassuring way. Peter is one of ElderCare Online’s community activists and Forum moderators.

The book is available in our ElderCare Bookstore at http://www.ec-online.net/Connections/bookstore.htm (in association with Amazon.com). Peter has contributed an excellent article on “Moving Into a Nursing Home: A Guide for Families” in this issue of the newsletter. If you find his article helpful, I’m sure that you will also appreciate his book.

ALZHEIMER’S DISEASE RESEARCH: Clinical Studies at the Goldman Institute

From time to time I receive requests to provide our members with information on new drug studies for Alzheimer’s Disease and other aging disorders. I agreed to provide this information on two studies being conducted by the Goldman Institute in San Francisco because they exhibit a commitment to providing a range of care and services for the elderly.

If you live in the San Francisco Bay area, I encourage you to contact the Institute. Alzheimer’s Disease is incurable at this time and the existing medications are only the beginning of what we need to improve our loved one’s health. Please take a look at our related articles in our Medical Research Assistant at http://www.ec-online.net/Assistants/medresassistant.htm, and especially the article on “Participating in Clinical Trials: What You Need to Know” at http://www.ec-online.net/Knowledge/Articles/clinicaltrials.html.

Alzheimer's Drug Treatment Study: Do you know someone who has mild to moderate Alzheimer's disease? He/she may be eligible to participate in an experimental drug research program that may help improve the symptoms of Alzheimer's disease. Qualified participants will receive study-related testing and medication at no cost. For more information, please call The Institute on Aging Research Center at (415) 386-3100.

Are You Concerned About Memory Loss?: If you're concerned about memory loss or the possibility that you or a loved one may have Alzheimer's disease, there is a special program available to help you. Participation in this program is limited to Brown & Toland members and is designed to improve the care of persons with memory loss and support family members who help them. To inquire about participation in this free program, call Susan Roth, MS, RN at (415) 750-4180, extension 180. Please note: This program is for Brown & Toland members only.

The Goldman Research Center (http://www.gioa.org), founded in 1988, links the research, clinical and health service experts of the Goldman Institute on Aging and the University of California, San Francisco. This partnership of academic excellence, clinical and research expertise, creates the foundation for applied research in health care. The Center also works in partnership with the health care industry to conduct rigorous clinical research on new treatments for a variety of illnesses and diseases.

Research studies at the Center focus on issues of practical importance to the health and well-being of elders. Their work seeks to develop interventions that enhance independence and functional ability. They emphasize conducting research that can be directly translated into improving the day-to-day lives of older adults. This research approach, combined with the expertise and experience of their faculty, provides a unique contribution to the community.

CAREGIVER EDUCATION: Free Online Courses for Caregivers

Our three goals at Prism Innovations are to provide family caregivers with Information, Education, and Support. For years we have been offering an enormous (and growing) library of articles, resources, and knowledge. We have also been providing intensive emotional and personal support through our chatroom and message board.

Over the last year or so, I have been intent on making our websites as educational as possible. That means we have stepped up our Alzheimer’s Answers chat sessions, printed our educational booklets and workbooks, and explored innovative ways to channel knowledge and wisdom to you via the Internet.

Recently, I started exploring providers of online educational services. One such provider, UliveandLearn, has really stepped up to demonstrate their commitment to providing user-friendly and valuable courses to the Internet audience. Through diligence and networking, they have assembled world-class coaches, consultants, educators, trainers, companies, and organizations to share their experience, knowledge and best practices.

Lessons for Living and Learning” is a series of free introductory courses that give you a feel for the valuable material that is offered deeper inside their online university. While much of the courses are intended for business professionals, I have selected a few free classes that may be of interest to you. You may also visit the UliveandLearn  home page at http://www.uliveandlearn.com to view the full range of courses.

 - Making a Book on Tape for your Grandchild http://www.uliveandlearn.com/lessons/lesson.cfm?lesid=96&pg=1
 - Promoting Literacy at Home
http://www.uliveandlearn.com/lessons/lesson.cfm?lesid=111&pg=1
 - Senior Living
http://www.uliveandlearn.com/lessons/lesson.cfm?lesid=210&pg=1

I welcome your feedback on the value of these courses. Would you be interested in purchasing eldercare classes that include educational articles, booklets, and resources, including audio and video clips, slide shows, and expert responses to your questions? E-mail me at rich@ec-online.net with your thoughts.

TOP ALZHEIMER’S/CAREGIVING SITES: Brenda Parris Sibley at Suite 101

I need to give special recognition this month to one of the few remaining portal-type sites for Alzheimer’s Disease caregivers. Years ago, we saw the blossoming of numerous general interest portals that promised to offer extensive articles and resources on every imaginable topic. One such portal, Suite 101, is still up and running and presenting great material for caregivers.

The website uses human editors to collect and present relevant articles, rather than allowing a search engine or impersonal directory to do the work. With the Suite 101 Alzheimer’s Disease portal, you know that the articles, links, and resources have been carefully chosen because it has Brenda Parris Sibley at the helm. Many of you know Brenda as the author of the “A Year to Remember” website which includes her journals and articles that relate to her caregiving experience for her mother who had Alzheimer’s Disease. Brenda knows the Internet AND Alzheimer’s Disease, so you can trust that she will steer you right. I give this website my highest recommendation, especially for new caregivers.

You can visit the Suite 101 Alzheimer’s Disease website at http://www.suite101.com/welcome.cfm/alzheimers_disease.

For additional Alzheimer’s and Caregiving websites, Brenda Parris Sibley has established one of the best clearinghouses 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.

ELDERCARE FORUM: Latest Postings

Recently I have seen an uptick in the amount of tense postings in the Forum. Most of us are stressed out for one reason or another. Please be careful about venting against each other. We all have individual opinions and perspectives, and they are all valid. It’s painful to see the venting directed at individuals rather than the disease.

I want to ask everyone to be more open to other’s perspectives. Share your opinions and vent when necessary. But please be understanding that everyone’s journey is different. You may not agree with everyone, but you can empathize with them and see where they are coming from.

If you would like to register, please follow this link: http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=agree. Please excuse any little error messages that you may receive. We are working to resolve a software glitch. I will manually send your registration information and password. Just fill out the information and wait. I will get it to you in less than a day (probably within 15 minutes).

(Note: Some of these links may not transfer correctly via e-mail. In that case, just go to the Forum at http://216.122.139.136/cgi-bin/ultimatebb.cgi or read this newsletter off of the website at http://www.ec-online.net/Knowledge/Newsletters/beacon021502.htm).

We Laugh to Survive: Jokes posted by our members. Be careful, some of these are really dumb or really racy… http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=forum&f=21

News and Research: Two very important studies were recently announced that are giving researchers a better understanding of the mechanisms and risk factors of Alzheimer’s Disease… http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=forum&f=26

Daily Challenges: We have several new discussion threads that cover questions frequently asked by caregivers, including reluctance to bathe or shower, orienting an individual with dementia, and inappropriate sexual conduct… http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=forum&f=1

Early Onset Alzheimer’s Disease: Spousal Caregivers Meeting Room: You don’t have to be coping with Early Onset Alzheimer’s Disease to appreciate the tight friendships and support that our members share here. The issues that spouses face are different from those of adult children, so we carved out a place just for them at http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=get_topic&f=29&t=000064.

New Caregiver’s Meeting Room: Great Success: Join in this exchange of ideas and tips for traveling with your loved one if they have dementia. It’s threads like this that stimulate an exchange of those pearls of wisdom… http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=get_topic&f=40&t=000027

Homecare & Independent Living: Helping the Caregiver Get Help: This is a common concern of many adult children who see their aging parents struggling to care for each other. Follow the discussion as our members share their experiences and “what works” … http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=get_topic&f=3&t=000043

I, Caregiver: Treats for the Caregiver: When was the last time you took some real respite? Are you too concerned about how the temporary care worker will perform that you resist taking time for yourself?… http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=get_topic&f=19&t=000049

We have literally hundreds of other discussions going on in the Forum. Please come by to browse and read. We cover so many of the issues that all caregivers encounter. Just reading the stories and comments can help you learn. If you have specific questions or feel that you need the support of others just like you, please sign up and join us. Visit the Forum at http://216.122.139.136/cgi-bin/ultimatebb.cgi.

CHAT SCHEDULE: Updates for February

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). We have begun to provide chats that are hosted by caregivers in Australia. Australian times are GMT +10. Hopefully this will not cause a great deal of confusion and instead give us more opportunities to connect with each other.

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 note the new sessions added on Monday evenings, Wednesday mornings, and Saturday afternoons.

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.

February 18 (Monday 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."

February 19 (Tuesday 9:00 to 11:00PM EST) “Children of Aging Parents:” Host Brian Duke from CAPS and the Institute for Aging at the University of Pennsylvania leads a discussion for family caregivers seeking understanding and resources.

February 20 (Wednesday 5:00 to 7:00AM EST) “Ozcarers' Chatroom (or Pong's Place):" Hosts Pongfoot (David) and Splash (Edith) welcome caregivers from around the world to drop in and put their feet up for a while, chat with other caregivers and "Take a Break."

February 20 (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.”

February 20 (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.”

February 21 (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.”

February 23 (Saturday 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.”

February 25 (Monday 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.”

February 27 (Wednesday 5:00 to 7:00AM EST) “Ozcarers' Chatroom (or Pong's Place):" Hosts Pongfoot (David) and Splash (Edith) welcome caregivers from around the world to drop in and put their feet up for a while, chat with other caregivers and "Take a Break."

February 27 (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."

February 27 (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.”

February 28 (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.”

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) 2002 Prism Innovations, Inc. All Rights Reserved.

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