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 1, 2002                                                                                 Vol. 5 No. 3
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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, 

Please forgive me for this shortened welcome letter. I have been very busy working on the Alzheimer’s Answers chat sessions as well as an innovative webcast in cooperation with the public broadcaster in Philadelphia, WHYY.

I encourage all of you to visit the WHYY website and register for the webcast. It will be an exciting and insightful experience. Join us on Monday, February 4 from 7:00 to 9:00PM EST for a Town Meeting with host Dr. Dan Gottlieb on the topic of “What is a Good Death?” It sounds like a morbid topic, but last year a stirring of discussion arose with the airing of Bill Moyers’s “On Our Own Terms.” We are continuing the dialogue on Monday with the goal of providing a forum where caregivers can constructively share their experiences, insights, fears, and opinions.

The webcast will be conducted live from the studios at WHYY in Philadelphia and broadcast over the Internet. By registering and visiting the designated website, you can listen to the live audio portion and watch video, slides, and web pages throughout the broadcast. While it’s a far cry from live television, but it is the most innovative webcasting service around. You can chat live throughout the broadcast as well as after the session.

This newsletter includes a variety of articles, topics, and information of interest to all elder caregivers, not just those coping with Alzheimer’s Disease. Please continue to offer your suggestions to making this website serve all of your caregiving needs.

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

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INSIDE THIS ISSUE

Feature Article: Tips on… Home Safety and Modifications
ElderCare Forum: Latest Postings
Wider Horizons: “What is a Good Death?” Webcast for Caregivers
Other Webcasts: Beth Israel Medical Center
News You Can Use: New Programs that Save Money on Prescription Drugs
Alzheimer’s Answers: “Practical Dementia Care” with Constantine Lyketsos
Chat Schedule: Updates for February
Subscription Information

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FEATURE ARTICLE: Tips on… Home Safety and Modifications

As an individual ages, her ability to live independently is severely restricted. And once an aging individual shows signs that they are in danger of falling, or that they can’t navigate their home any longer, that a nursing home is the safest option. Or at least that is the common perceptions.

With careful consideration and some creative thinking, families can make some modest changes to a home that will make it safer and easier for their loved one to stay there longer. In many cases, minimal changes to the home environment can have a significant impact on independence.

Most injuries occur in one of three primary places within the home: the bedroom, the bathroom, or in the hallway. So it’s important to look at these areas and reduce or eliminate the aspects that can contribute to falls, reduce mobility, or limited access to features (such as showers and toilets).

Read the complete article with tips on safe flooring, lighting, and bathrooms at http://www.ec-online.net/Knowledge/Articles/homesafety.html. This article is intended for individuals caring for all frail or home-bound elderly, not just those with Alzheimer’s Disease.

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/beacon120101.htm).

Casual Corner: Reflections: Poetry and inspiration from our members… http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=get_topic&f=20&t=000051

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

Daily Challenges: Mommy, Would You Want to Be Put Into a Care Facility?: This is a very difficult, but very real topic. As a caregiver seeing the ups and downs first hand, how would you want to be cared for? http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=get_topic&f=1&t=000161

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.

I, Caregiver: Keep Me Positive: One of our newest members, Jody from Michigan, shares her family experience and the pain of seeing her grandfather decline in a nursing home and her decision to move him into her household. Now she is sharing her experiences with an intergenerational household. Read her story and share your experiences at http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=forum&f=19.

Homecare & Independent Living: Grandfather Won’t Get Help: Share your supportive thoughts and experiences with one of our new members who is having trouble getting her grandfather to accept help. http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=get_topic&f=3&t=000042.

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.

WIDER HORIZONS: “What is a Good Death?” Webcast for Caregivers

I am very excited to announce the production of an innovative webcast in cooperation with WHYY public broadcasting. For years we have produced real-time chat session in our chatroom, as well as “Ask the Expert” seminars. WHYY and ElderCare Online are taking this concept a step further and integrating live audio/radio with the presentation of video, graphics, chat, and hosted web pages.

Join us on Monday, February 4 from 7:00 to 9:00PM EST for a Town Meeting with host Dr. Dan Gottlieb on the topic of “What is a Good Death?” It sounds like a morbid topic, but last year a stirring of discussion arose with the airing of Bill Moyers’s “On Our Own Terms.” We are continuing the dialogue on Monday with the goal of providing a forum where caregivers can constructively share their experiences, insights, fears, and opinions.

The webcast will be conducted live from the studios at WHYY in Philadelphia and broadcast over the Internet. By registering and visiting the designated website, you can listen to the live audio portion and watch video, slides, and web pages throughout the broadcast. While it’s a far cry from live television, but it is the most innovative webcasting service around. You can chat live throughout the broadcast as well as after the session.

Panelists include Suzanne Mintz, President and Founder, National Family Caregivers Association and James Plumb, Director, Center for Palliative Care, Thomas Jefferson University. Rich O’Boyle will act as Associate Producer, assisting with the delivery of relevant articles, websites, panelist biographies, and chat hosting. Dr. Dan Gottlieb is host of WHYY-91FM's “Voices in the Family” radio program.

Wider Horizons from WHYY is a creative network of professionals who are intent on taking traditional public broadcasting into the new millennium. WHYY is developing an information and entertainment service to address the needs and interests of those planning their retirement, active retirees, children of aging parents, the homebound, and everyone interested in living a satisfying life enhanced by intellectual stimulation, lifelong learning and a continuing connection to the things and places they love. WHYY maintains a substantial resource center on death and dying on their website.

Please register in advance at the WHYY website. After filling out the registration information, you will be asked to walk through a simple step-by-step guide that will make sure that your computer is enabled to receive the webcast. You will likely have to just click on yes/no buttons rather than have to configure your computer. I strongly suggest that you take care of this today (Sunday) or Monday morning so that you are not delayed in attending the webcast. You do not need at speedy modem… a standard 56k modem is sufficient.

An archive will be maintained, but I invite you to attend the live webcast to enjoy the full interactive experience. Register now at http://www.widerhorizons.org/townmeeting.html

OTHER WEBCASTS: Beth Israel Medical Center

This is a just a quick announcement about another series of webcasts being produced by Beth Israel Medical Center in New York.

The Department of Pain Medicine and Palliative Care at Beth Israel Medical Center is offering a new, free, weekly telephone support group for caregivers of patients with advanced medical illness.   The ten-session group, being conducted on Tuesday evenings from 5:00-6:00pm, from January 15th through March 19th, will address the many concerns that caregivers of the medically ill face on a daily basis.   Helpful tools, such as communication, relaxation, education and stress management will be covered.

The next session is on February 12, 1:00-2:00PM EST: “Managing Pain and Other Symptoms at Home: What Caregivers Want to Know;” presented by Russell K. Portenoy, MD, chairman, Department of Pain Medicine and Palliative Care at Beth Israel Medical Center.

March 12, 1:00-2:00PM EST: “Making Treatment Plans and Decisions: Caregivers’ Roles and Rights;” presented by Karen Orloff Kaplan, MPH, SCD, president and CEO, Partnership for Caring; national program director, Last Acts.

Pre-registration, at least one week prior to each session, is required by contacting Ann Goelitz, CSW, at agoelitz@bethisraelny.org or (212) 844-1502.  Each session also will be archived for sixty days for convenient accessing at http://www.StopPain.org.

NEWS YOU CAN USE: New Programs for Reducing Drug Costs

This is NOT an advertisement… If you or your loved one take drugs made by Pfizer (Aricept), Novartis (Exelon), or GlaxoSmithKline (Wellbutrin), of if you live in the state of Illinois, you now have access to new programs that can substantially reduce your out-of-pocket drug costs.

Seniors will have to wait a bit longer for the federal government to help them take a serious bite out of the costs of prescription drugs, but they can take advantage of some small programs that have recently become available. Generally, individuals need to be very close to poverty to be eligible for existing benefit programs, but these new programs are available to seniors who have incomes ranging from about $17,000 to $26,000 per year.

Our newest article on saving money on prescription drugs details these programs, lists drugs that are covered, and provides tips on filing your applications. These are legitimate free programs that you should seriously consider applying for. Read the complete article at http://www.ec-online.net/Knowledge/Articles/drugcosts2.html.

Prism Innovations, Inc., the publisher of ElderCare Online and ALZwell Caregiver Support has not taken any consideration, sponsorship, or advertising fees from the pharmaceutical companies mentioned in this article. For that matter, Prism has not made or accepted contributions from politicians or political parties.

We have an additional update on the status of the Alzheimer’s Disease vaccine. Unfortunately, the vaccine trial conducted by Elan has been suspended due to dangerous side effects. The trial has not been cancelled outright, but researchers will have to careful study their data to see if and when they can continue. Read the complete article at http://www.ec-online.net/Knowledge/Articles/vaccineupdate.html.

ALZHEIMER’S ANSWERS: “Practical Dementia Care” with Dr. Constantine Lyketsos

Our series of “ask the expert” chat session, Alzheimer’s Answers, continues this week with a discussion on “Practical Dementia Care” with Dr. Constantine Lyketsos on Tuesday, February 5, from 1:00 to 2:00PM EST. Experienced and former caregivers are also invited to share their experiences, insights, and comments.

The chatroom is accessible at http://www.ec-online.net/chat.htm.

Constantine G. Lyketsos, MD, MHS is a Professor in the Department of Psychiatry, School of Medicine The Johns Hopkins University in Baltimore, Maryland. He is a board certified geriatric psychiatrist who directs the Johns Hopkins Neuropsychiatry Service and the Comprehensive Alzheimer Program (CAP). Dr. Lyketsos is an active clinician with an expertise in dementia and Alzheimer disease. With Peter Rabins and Cindy Steele he is an author of Practical Dementia Care (Oxford University Press, 1999).

He has contributed over 120 publications to the international scientific literature on dementia, geriatrics, depression, neuropsychiatry, Alzheimer's disease, and HIV/AIDS. His ongoing research focuses on the impact and treatment of psychiatric disturbances in Alzheimer's disease, on the prevention of Alzheimer's disease, on the epidemiology of cognitive decline and dementia, on the diagnosis of Alzheimer's disease, and on the care of persons with dementia. He was recently cited in Best Doctors in America.

He has special expertise in the design and conduct of clinical epidemiological and intervention studies. Dr. Lyketsos is Principal Investigator of the Depression in Alzheimer's Disease Study (1R01-MH56511), the Maryland Study of Assisted Living (1R01-MH60626), the Clinical Assessment and Validation of the Experimental Alkon Test (CAVEAT), and Baltimore site director for the Alzheimer's disease Anti-inflammatory Prevention Trial (ADAPT; 1R01-AG15477). He is also an investigator in the follow-up study of the Baltimore Epidemiologic Catchment Area study (1R01-MH47447), and the Cache County Study of Memory in Aging (1R01-MH11380). Dr. Lyketsos lectures internationally on most of the above topics. After receiving a BA degree from Northwestern University, he completed an MD degree at Washington University in St. Louis, followed by psychiatric residency and fellowship at Johns Hopkins School of Medicine. He concurrently obtained an MHS degree from Johns Hopkins School of Public Health with a focus on clinical epidemiology.

Advance questions may be submitted to askcasey@ec-online.net. Every effort will be made to submit the questions to Dr. Lyketsos during the chat session. You are strongly encouraged to join in at the designated 1:00PM EST time. In the event that you can not make it, please read the transcript that will be posted shortly after the chat session.

The transcript from Dr. Edward Zamrini’s January 28 chat on “Transitioning Into the Caregiver Role” is available at http://www.ec-online.net/Community/transcript012802.htm. Previous Alzheimer’s Answers chat sessions are archived at http://www.ec-online.net/Knowledge/SolutionSets/alzanswers.htm

The session is produced in cooperation with the Alzheimer Research Forum, a non-profit knowledge exchange that serves the scientific and research communities. Their website offers readable research and clinical updates on Alzheimer’s Disease at http://www.alzforum.org. Columbia University’s Taub Institute for Research on Alzheimer’s Disease and the Aging Brain contributes to other Alzheimer’s Answers sessions as well.

The chatroom is accessible at http://www.ec-online.net/chat.htm.

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 2 (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 4 (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 5 (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 6 (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 6 (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 6 (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 7 (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 9 (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 11 (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 13 (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 13 (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 13 (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 14 (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 16 (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 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.

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