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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June 15, 2002                                                                                 Vol. 5 No. 12
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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,

Yikes! This newsletter is already one week late. I apologize to all of our readers who have been waiting for it to arrive. I actually received a handful of e-mails asking if everything is OK.

I have had a series of meetings, business trips, and family functions that had me totally distracted. I did manage to compile a solid newsletter, but have skimped on this Welcome Letter. I promise to write a more diverse issue for July 1.

In the meantime, enjoy this issue and the first hot days of summer.

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

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INSIDE THIS ISSUE

Feature Article: Identifying and Reducing Stress in Your Life
Top Alzheimer’s/Caregiving Websites: Partnership for Caring
Partners in Excellence: The Caregiver’s Marketplace
Caregiving Tip: Good Computer Hygiene
My Parents, Myself: Monthly Column from Phyllis Hirschkop
ElderCare Forum: Latest Postings
Chat Schedule: Updates for June
Subscription Information

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FEATURE ARTICLE: “Identifying and Reducing Stress in Your Life” by Shirlee Ann Stokes, RN, EdD, FAAN and Susan E. Gordon, RN, EdD

We all experience stress in our lives. Sometimes we feel more stressed than at other times. Stress is anything that the person sees as stressful. It is like pain, if an individual states they have pain, then they have pain. If an individual perceives a situation as stressful, then it is stressful. Stress is self-defined.

Stress is associated with difficult events or situations. Events such as loss of a driver’s license, death of a loved one, and being hospitalized are indeed stressful events or stressors. In these instances stress is associated with negative situations. But remember: stress can be elicited from happy occasions as well. Going on vacation, moving to a retirement community, or visits from family can also produce stress. These times might be happily anticipated, but can be fraught with feelings of anxiety and stress. Will everything go well? Are all the plans set? Have I packed everything I need?

We all know that big events in our lives can be stressful. Death of a child or being audited by the IRS are strong and well understood stressors. These stressors mark profound changes in our lives to which we must adjust. Along with the big stressors, the little daily hassles can also take their tool. Situations such as, being a passenger in a car with an erratic driver, having your refrigerator breakdown, getting an unexpected bill, suffering from chronic discomfort or pain, completing the myriad number of forms needed for Medicare, taxes, and insurance are everyday stresses we all face. These smaller chronic, long term stressors can be just as debilitating as a single large event.

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

Dr. Shirlee Ann Stokes received her Bachelors and Masters degrees from Ohio State University. She earned her doctorate from Teachers College, Columbia University. Dr. Stokes' clinical specialty area is adult and gerontologic nursing and her major research area has been stress and aging. With Dr. Susan Gordon, they have developed a tool to measure level of stress in individuals 65 years of ages and over. Currently, Drs. Gordon and Stokes are conducting studies related to stress in the elderly, including the development of an Instrument (Health Diary) to Measure Health in the Elderly.

TOP ALZHEIMERS/CAREGIVING WEBSITES: Partnership for Caring

Partnership for Caring is a national not-for-profit organization that created the first living wills over 30 years ago.  It has extensive expertise in the issues that surround tough end-of-life decisions and provides a many extremely useful services and resources.  Bookmark this site for you may want to return for help with a variety of issues.

You can download at no charge state-specific advance directives (living wills and health care proxies).  In the resource section you can find articles and fact sheets that deal with difficult decision making issues such as the use of artificial nutrition and hydration and “do-not-resuscitate” decisions.  There are articles about the importance of planning for end-of-life decisions, the value of palliative care and hospice. Question and answer booklets on subjects such as dying at home, appointing and being a health care agent, advance directives and more in-depth discussions of artificial nutrition and hydration and cardio-pulmonary resuscitation are available for purchase and can be ordered on line or by calling the 800 number.

Partnership provides human support as well as web support.  A hotline (800) 989-9455 connects people to staff that can answer questions related to advance directives, patients rights to consent and refuse medical care, and the rights of family members and health care agents.  For individuals dealing with specific end-of-life issues, counselors will explore options, provide information related to relevant state law, suggest questions to ask doctors and other health care providers and suggest strategies for dealing with conflicts. They also will help people think through issues that should be addressed when planning for end-of-life decisions.

You can sign up for their monthly e-newletter that highlights current news, legal and policy developments relevant to end-of-life care, and resources such as web sites, books and even music.  The e-newsletters are archived on the site for future reference.  To sign up go to the web site www.partnershipforcaring.org.

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.

PARTNERS IN EXCELLENCE: The Caregiver’s Marketplace

The Caregivers Marketplace(tm) is the first nationwide group-purchasing program specifically for family caregivers. Through rebates and discounts, the Marketplace will save those "who give, get and need care" from 5% to 15% on a wide range of goods and services used daily, including nutrition, incontinence, aids to daily living and bathing supplies, as well as mobility and home modification equipment.

The Marketplace was welcomed by national organizations that represent caregivers at a preview of the service for media attending the recent 2002 Joint Conference of the National Council on the Aging and the American Society on Aging in Denver. Voicing support were the National Alliance for Caregiving, the National Family Caregivers Association and Children of Aging Parents.

“This service benefits both caregivers and those who receive care, putting money back in their pockets,” said Paul Alper, co-founder of the Marketplace. “Family caregivers spend more than $2,000 per year for products and services that are not covered by insurance or Medicare, and these costs are not tax-deductible. Incontinence products alone can cost as much as $1,500.”

Individuals can enroll - for free and confidentially-- in The Caregivers Marketplace on-line at http://www.caregiversmarketplace.com or by calling 866-327-8340. The Marketplace negotiates with manufacturers to get rebates and discounts and then makes them available to those who sign up to participate, Alper said. “Privacy is guaranteed,” Alper added. “The Caregivers Marketplace will not rent or sell its list to anyone. Nor will we ever telemarket those who enroll.”

Enrollees are mailed a Caregivers Marketplace Savings Card, the Marketplace Savings Catalog of products eligible for rebates, including a directory of where they can be purchased, and rebate forms. The Catalog also lists companies that offer discounts to those with the Marketplace Savings Card. Participants fill in the rebate forms and return them to The Caregivers Marketplace with proof of purchase to receive the cash rebates. The rebates are valid throughout the year and there is no limit on the number of times they can be used.

The Marketplace website includes enrollment information, an up-to-date catalog, rebate forms and basic facts and information about the service. The site also has a growing compilation of caregiver education and skills training resources.

In addition to working with manufacturers of products needed by “those who give, get and need care,” Alper said the Marketplace has formed collaborative relationships with organizations like the Visiting Nurse Associations of America (VNAA), Ceridian Corporation, USA Insurance Marketing, and United Behavioral Health (a unit of United Health Group). These organizations serve large segments of the U.S. population and will make the Marketplace benefits available to the individuals they serve.

Alper said that discussions are in progress with other organizations like voluntary health agencies that are interested in offering the Marketplace benefits to their constituencies. As of April 15, the Marketplace has negotiated rebates or discounts with the following manufacturers and products: Ensure(R) Brand from Ross Products; TENA(R) and Dry Comfort(TM) Brand incontinence products from SCA Incontinence Care; Boost(R) Brand from Mead Johnson Nutritionals; Tranquility(R) and Select(R) Brand incontinence products from Professional Business Enterprises (PBE); Comfort Personal Cleansing(TM) Brand products from Sage Products Inc.; power mobility equipment from Hoveround Corporation; Waffle(R) Brand seating, bedding and positioning products for comfort and wound prevention from EHOB, Inc.; assistive-technology products from Mobility, Inc.; walk-in bath tubs from Safety Bath Inc.; and ABLEWARE(R) home healthcare and aids to daily living products from Maddak.

The Marketplace also offers discounts on consumer and caregiver education videos from Lifeview(TM) Resources, Inc. and AYA, Inc. Home Nursing Videos. Alper said the Marketplace is negotiating with other manufacturers, and is committed to expanding and diversifying the range of products and services offered.

You can visit The Caregivers Marketplace and our other “Partners in Excellence” on the main page of ElderCare Online at http://www.ec-online.net, or go directly to the website at http://www.caregiversmarketplace.com.

CAREGIVING STORE: Online Tutorials On Sale Now

Each of the seven titles in our Caregiver Education Series is available as a bound and printed booklet or as an online tutorial. We also make the information available on a CD-Rom as well.

For a limited time, we are offering unrestricted access to all of our online tutorials with the purchase of any two of our caregiving booklets. For $13.90, you can have any two booklets, plus access to the other five in the series. That is a $39.55 value for only $13.90… and that is just the cash value… When you consider the time and money that this information can save you, the value is incalculable.

Our available titles include:

  • Coping With Alzheimer’s Disease (Revised and Expanded in April 2002)
  • Choosing a Nursing Home
  • Managing Medicines Safely
  • Preventing Frauds and Scams
  • Recovering From a Stroke
  • Talking With Your Doctor
  • Understanding Incontinence

If you order any one of our record-keeping workbooks, we will also include access to all of the tutorials. Both of the workbooks are designed to help you keep track of personal information and medical affairs so that you can avoid financial stress and – worst of all – medical emergencies.

Visit ElderCare Online’s secure Caregiving Store at http://www.ec-online.net/Store/lrg.htm for product details and to place your order. Remember: All you have to do is order two of our high-quality printed booklets to receive unlimited access to the whole series on the Internet. You will receive a password and access link as soon as your order is processed.

Special for Professionals and Aging Services Organizations: Would you like to provide unlimited access to the tutorials as a benefit to your clients and the community that you serve? Contact Rich O’Boyle, Publisher for extremely cost-effective rates. Why incur exorbitant printing and mailing costs when you can direct your clients to a secure user-friendly website. We can also import all of the materials onto your website. Ask for our special non-profit rate: rich@ec-online.net

CAREGIVING TIP: Good Computer Hygiene

Over the past several weeks I have also been inundated with virus attachments in my mailbox. I have a fairly wide network of friends, caregivers, and colleagues, so I feel that I am particularly vulnerable to attacks. Yesterday I received two e-mails from friends saying that they have also been receiving viruses... and one had my name as the sender! I spent a good two hours yesterday running scans on my mailbox and hard-drive (I even reloaded my mail software and upgraded my security settings)

I feel confident that I am not sending out the virus, nor is the virus running out of the Forum member list, or our newsletter subscription list. What probably happened is that someone in our community contracted one of those clever viruses that copies out random names from the address book and then spreads itself.

Here are some steps that you can take to prevent and cure viruses:

  • Use an anti-virus software package such as Norton or McAfee. This is money well-spent! You can purchase the software from any computer or office supply store, as well as from many online providers. You can find links to purchase the software (including rebate information) in the ElderCare Bookstore at http://www.ec-online.net/Connections/bookstore.htm.
  • The Norton website (http://www.symantec.com) has free downloads of emergency virus cleaning applications. The Klez virus seems to be the culprit here... search for Klez on the Norton website for a free diagnostic and patch.
  • Do not open e-mail attachments EVEN IF you know the sender. You should be especially wary of attachments that end in .pif, .vbs, .bat, .scr, .exe, and other computerese endings. Some .doc and .xls files may also have viruses, but those are very uncommon these days. If someone sends you an attachment that you were not expecting, email them back and make certain.
  • Set E-mail security options for "high-alert" or "most secure." Depending on what email package you use, you will have to configure it yourself. Outlook Express and Outlook (both made by Microsoft) are notorious for their vulnerability. If you have the option, select a different package. You can also visit http://www.microsoft.com for updates and security "patches" that are designed to counter new viruses. I will not be the first to say that the Microsoft website is not user-friendly. But you have to live with it.
  • Make a backup of your files. It is a wise practice to save a copy of your most commonly used files onto a Zip disk or a CD-rom every month or so (I do it every two weeks). This way if you do get a major virus, you can always reload your files. Also, save all of the CDs and packaging from software that you purchase so that you can reload programs.

I hope that we all make our way through this recent wave of viruses. With a little preparation and street smarts, we can be safe and secure.

MY PARENTS, MYSELF: A Monthly Column by Phyllis Kramer Hirschkop

Dear Phyllis:

My mother, a retired librarian is in her mid 80’s. She has many physical problems that make her very frail. She refuses to accept the fact that she can no longer do the things she used to do and so she attempts to do them without success. My mother is an accident waiting to happen! What can I do to help her accept her limitations and find activities that will satisfy her and fill her days? Judy G.

Dear Judy:

Your worry about your mother’s safety is real. However, she doesn’t evince any behavior that says she shares your worries. In fact, she’s still trying to do the things she has always done, albeit without success.

There are two issues here. The first is how to help her accept her current state of health and the limitations it places on her, and the second is how you can help her find substitute activities that are satisfying.

It’s important to look at what’s behind her resistance to letting go of the things she can no longer do. I’m assuming that your mother has been an independent and self-sufficient person for most of her life and that by accepting her limitations she feels that she’s giving up her independence, which is surely an important part of her self-image. No wonder she resists change!                                                                                                           

The first thing to do is talk with your mother about your concerns for her safety. For example, if her vision or hearing is impaired, you see her becoming upset because she can no longer prepare a meal, read a book, or listen to music.

Tell her that it saddens you to see her struggling to do things that are hard for her to do. Assure her that you can understand how frustrating it must be to no longer be able to do what she’s always done. Ask her if she’d like to talk about these frustrations with you or perhaps a minister, a friend, or someone who specializes in working with the problems of older people.

Once you begin to see evidence of her accepting some limitations, begin talking with her about finding new activities that she might enjoy. If you have some ideas, suggest them.  For example, since she was a librarian and loves books, you could find a volunteer to read to her. If she’s lonely and wants companionship, perhaps a companion could be found for a few hours a week. It’s important that she be an integral part of the solution because you can’t impose activities on her and expect her to be accepting of things she had little or no part in choosing.

To find resources, check with your local office on aging, the county’s senior centers, or local churches or synagogues. Talk with other family members, friends, and neighbors who may have useful suggestions.

Whatever you do, remember that the state of your mother’s health determines what she can do and that this will change over time. This means that you need to remain open to her increasing limitations, which will inevitably necessitate changes in her activities and perhaps your responsibilities toward her.

Regards,
Phyllis 

Phyllis Kramer Hirschkop is a trained social worker who has practiced as a psychotherapist for 26 years. She has also received training in coaching. Over the past few years, she has focused her practice on working with adult children with elderly parents and the problems that arise as the parents become more and more needy. If you have a question you'd like answered, please e-mail Phyllis at hirschkop@erols.com and perhaps she'll choose your letter to respond to in the next newsletter. Her website is located at http://www.our-aging-parents.com.

ELDERCARE FORUM: Latest Postings

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).

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

Casual Corner: “Growing Things:” It’s the time of year where those of us with green thumbs revel in the warmer days and dark dirt. If you enjoy gardening, join in this discussion at http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=get_topic&f=20&t=000029

Daily Challenges: “The Medication Merry-Go-Round:” Over the past few months, I have noticed a fair amount of discussion around the topic of whether, and how much, to medicate our loved ones. Member Semper Fi has started a thread where I hope we can have a frank discussion of the pros, cons, and unknowns of this important topic at http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=get_topic&f=1&t=000228

Daily Challenges: “Help With Prescription Drug Costs:” We have posted several links and suggestions on how caregivers can get a handle on drug costs. These approaches include finding programs in your area that you can sign up for (usually at no cost), as well as state programs for the needy. http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=get_topic&f=1&t=000227

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=000081

Less Common Dementias: We have an entire discussion board for those caregivers who find their loved ones have one of the rare forms of dementia, including Lewy Body Disease, Normal Pressure Hydrocephalus, or Pick’s Disease, among others. This is a great place to link up with those far-flung caregivers who share your particular concerns. http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=forum&f=34

Individuals Affected by Dementia: “Newbie Blues and Lewy Body Disease:” We have frequent discussions of less common dementias, especially Lewy Body Disease. Here is a new thread with some excellent links and resources. If you are also a Lewy Body Disease caregiver, please join in at http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=get_topic&f=27&t=000029

New Caregiver’s Meeting Room: “Rapid Progression of Alzheimer’s:” If you are caring for a loved one with Alzheimer’s Disease, nothing can be as frightening as the occasional “cliffs” that your loved one falls down. For many months they may remain stable and seem to stay well, but from time to time they may progress rapidly. Join a caregiver discussion at http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=get_topic&f=40&t=000036

Family Dynamics: In recognition of the newest articles on the website that deal with personality types and sibling issues, take a look at the numerous discussion threads on the topic of Family Dynamics. There are very few places on the Internet where you can actually connect with others in a safe and supportive environment to discuss these issues. http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=forum&f=2

I, Caregiver: “CGs Health and Survival:” Forum Moderator Edyth Ann has shared some personal reflections on the importance of caring for oneself. Please take the time to read her comments at http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=get_topic&f=19&t=000055.

Former Caregivers Meeting Room: For those of us who have moved forward from our caregiving responsibilities, or see light at the end of the tunnel, we have a special section of discussion threads at http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=forum&f=38.

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 June

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.

June 20 (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.”

June 24 (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.”

June 25 (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.

June 26 (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."

June 26 (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.”

June 26 (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.”

June 27 (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.”

July 1 (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.”

Enter the chatroom from the front page of either website or at http://www.ec-online.net/chat.htm.

SUBSCRIPTION INFORMATION

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