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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September 15, 2002                                                                                 Vol. 5 No. 17
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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,

Some of the most beneficial lifestyle changes are also the most difficult to make. How many times have you been advised, directly or indirectly, to eat more sensibly or get off your duff and sweat a little? And what if I were to tell you that these lifestyle changes would not only make you healthier, but also help you sleep better and reduce your blood pressure? A healthy diet and moderate exercise have just become even more important to you the caregiver.

A recent study published in the Journal of Gerontology found that older women caregivers slept better and lowered their blood pressure reactivity in response to stress tests after participating in a moderate exercise program compared to a group of women who only received nutrition counseling. The bottom line is that caregivers who exercised four times a week (such as with 30-40 minutes of brisk walking) showed significant improvements to their health.

Why does all of this matter? Studies show that family caregiving accompanied by emotional strain is an independent risk factor for mortality among older adults – caregiving can kill you! The study gives us some evidence that a self-directed exercise program can reduce stress reactions and perhaps improve the health of caregivers. This pilot intervention trial provides encouraging results and hope for a low-cost, effective means to combat caregiver stress.

Now comes the hard part: Building these changes into your lifestyle. There are a million and one excuses for not making these types of changes. But the first response should be to look for ways to gradually incorporate some positive changes into your lifestyle. Start by walking two days each week and gradually increase the length of time and number of days; substitute low-fat and low-sodium foods; read about better nutrition (and that doesn’t mean fad diets and miracle supplements); talk with your doctor about your special needs and limitations; and above all else, move into it gradually. After a few weeks, you will see results.

I do not believe fad diets, inappropriate supplementation, or instant results. Given the challenges that you are already confronting and mastering as caregivers, I have confidence that each of you will be able to make changes to your lifestyles.

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

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INSIDE THIS ISSUE

Website Improvement Survey: Your Feedback Is Needed
Feature Article: Talking with Aging Parents About Finances by Mark Edinberg, Ph.D.
Coping With Caregiving: Radio Interview Now Available
Caregiver Store: Prism Personal Organizer and Medical Manager Special Edition
Healthy Aging: High Blood Pressure in Older People
Top Alzheimer’s/Caregiving Websites: Beyond Indigo
Our Sponsor: Study of New Device-Based Treatment for Alzheimer’s Disease
ElderCare Forum: Recent Changes and Updates
Chat Schedule: Updates for September
Subscription Information

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WEBSITE IMPROVEMENT SURVEY: Your Feedback Is Needed

Each year I take the pulse of our membership through a short survey. The message board and chatroom serve as dynamic areas for me to get ideas and insights about ways to make the websites more focused on your needs. I think the main reason that ElderCare Online and ALZwell are so popular and well-regarded is that we have such an open and honest relationship with all of our members.

I have composed a short Q&A survey that I need your assistance with. Basically I am trying to compile a handful of basic statistics on who our users are – things like “who are you caring for?,” “what diseases are you concerned about?,” “where does your loved one reside?,” etc. These types of questions may sound nosy, but they will give a lot of insight into the types of articles that we write over the next year, the perspective of these articles (adult caring for parent, caring for spouse, in-home, long distance, etc.). I am also exploring writing some more articles about diseases other than Alzheimer’s Disease, so your input is essential.

Whenever we collect survey information, we keep it completely private. If a company asks us about advertising on the websites, we use the information to tell them what percent of people answered certain questions (74% of caregivers are female, or 23% are caring for a parent, etc.). We only save your e-mail address if you ask that you be added to the newsletter mailing list (which shouldn’t be an issue for you since you are already on the list).

We know your time is valuable! So, as a special “Thank You” for taking the time to answer the survey, we will send ten respondents a copy of a useful caregiving book of their choice. I have a list of available titles and will share it with the winners. An Additional 25 respondents will receive access to the online tutorial version of the Learning Resource Guide of their choice.

To begin taking the survey, please click here http://www.zoomerang.com/survey.zgi?PB7ABEXQNAWXS2DAHPMFY506 … or access it directly from the front page of the website at http://www.ec-online.net

FEATURE ARTICLE: Talking with Aging Parents About Finances by Mark Edinberg, Ph.D.

Some years ago, I would go out to Senior Citizen Centers and have workshops on “You and your middle aged children.” My first question to the group was “What do your (middle aged) children have trouble talking to you about?” The standard answers were (1), money, (2), death, and (3) sex/relationships. Then I would be invited to a group of Junior Citizens (us middle aged people) for a presentation on Aging Parents. I would ask them the same question: “What do your (aging) parents have trouble talking to you about?” and, lo and behold they would give the same answers: money, death, and sex/relationships.

I am not sure why generations have trouble discussing money and finances, but at least from my informal research, money is at or near the top of the list of difficult topics. Many older adults were raised during the Great Depression, where resources were scarce and money very hard to come by. The relative wealth of today’s middle class is new and, for some, uncomfortable. The older generation(s) has different norms about sharing information about its finances than younger members do, although, obviously, families can vary greatly in their initial willingness to discuss finances and financial planning.

To read the complete article that includes tips on how to get the conversation started, as well as what to say and when to say it, go to http://www.ec-online.net/Knowledge/Articles/finances.html

COPING WITH CAREGIVING: Radio Interview Now Available

Last week I was a guest on Jacqueline Marcell’s Internet radio program, “Coping With Caregiving.” Most of you know me through my numerous articles, chat conversations, e-mail replies to your questions, and Forum posts. But few of you have heard me unless you have attended one of my presentations at various conferences that I attend.

Jacqueline and I chatted about the importance of support groups for caregivers, as well as other caregiving topics. I encourage you to visit Jacqueline’s website and listen to my interview as well as the numerous others. This is the only regular radio talk show that speaks directly to and for caregivers. She broadcasts every Saturday, so you can also tune in live. Visit her at http://12.162.161.64/cart/ProductDetail.asp?PR_ProductID=317

CAREGIVER STORE: Prism Personal Organizer and Medical Manager Special Edition

In the last few weeks I have received a handful of very pointed questions about how to best keep track of a loved one’s medical condition, as well as how to insulate oneself from accusations of abuse. Our two workbooks, the Prism Personal Organizer and the Prism Medical Manager are designed to take some of the load off of your back when it comes to record-keeping and the day-to-day management of medical affairs.

Both workbooks offer practical worksheets to collect information that is useful when filling out forms for your loved one, applications for government benefits, hospital records, and the detailed information that your doctor wants you to follow. The Medical Manager also helps you keep track of your loved one’s condition so that you have a record of questions you want to ask the doctor, changes that have occurred over time in your loved one, and issues that need to be raised.

Normally we sell the two workbooks separately, but we have combined them into a Special Edition – what normally would cost you almost $24 is available for $15.95 for a limited time this month. The Special Edition includes the two workbooks, as well as access to a password-protected section of the website that includes new downloadable worksheets.

To place your order in our secure online store, visit us at http://www.ec-online.net/Store/workbooks.htm

HEALTHY AGING: High Blood Pressure in Older People by Rich O’Boyle

When people think of high blood pressure they often envision a stressed out rush hour commuter honking the horn, or a red-faced parent scolding a child. But high blood pressure, or hypertension, commonly has no symptoms, and most people don’t even know that they have it until it has damaged their heart or brain. It is aptly named “the silent killer.”

According to the National Heart, Lung, and Blood Institute, one in four adults, have a continuously elevated pressure of the blood moving through their arteries. For adults aged 70 and older, that number rises dramatically to two out of three. High blood pressure significantly increases your risk for getting heart disease and/or kidney disease, and for having a stroke. While there may be no symptoms, and people affected by high blood pressure may feel fine, some may experience dizziness, palpitations, sweating, and headaches.

To read the complete article, which contains tips on preventing and treating high blood pressure as well as special considerations for the elderly, go to http://www.ec-online.net/Knowledge/Articles/bloodpressure.html

Note: This article is one of the many new features on the subject of “Healthy Aging.” They are intended to be applicable to caring for your loved one as well as yourself, so I hope that you find them doubly useful. Be sure to visit our new and improved “Healthy Aging Channel” at http://www.ec-online.net/longwellchannel.htm for more articles on health, fitness, exercise, nutrition, lifestyles, and emotional well-being for people 50+.

TOP ALZHEIMER’S/CAREGIVING WEBSITES: Beyond Indigo

People start exhibiting signs and symptoms of grief from immediately after the death of a loved one to up to seven years later. However, a person may not realize they are grieving or even know what the signs of grief are. Some individuals ask "I am still crying shouldn't I be over it since the funeral was a week ago?"

Beyond Indigo is here to help you before, during, and after the loss of a loved one. To provide this support, they have launched products and services located at http://www.beyondindigo.com. The website provides:

  • Light A Candle: Light A Candle in love and remembrance of the person you have lost. The candle stays lit on the website and a note is sent to friends and family friends about the candle.
  • 365 Days of Grief Support: Grieving is a full time job. Probably the hardest one you will ever have. They have a full year of grief support that comes to your email box. It is there when you need it.
  • Grieving Information: Articles, Q&A's and first hand stories on grief are at your finger tips. Read others stories and tell your own.
  • Online Memorials: An online scrapbook where your loved one is remembered through a picture, information and online guestbook.

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. Each of our topical Channels includes a few links of “Casey’s Top Picks on the WWW."

OUR SPONSOR: Study of New Device-Based Treatment for Alzheimer’s Disease

An institute near you is investigating a device based treatment for Alzheimer’s Disease.

Alzheimer’s Disease is the primary cause of senile dementia, affecting more than 4.5 million US citizens.  Advancing age is the key risk factor for Alzheimer’s Disease. Unprecedented growth in the aging population will increase the number of individuals afflicted with the disease for which there is no known disease-modifying agent or cure.  Once the disease develops, the remaining life span of an Alzheimer’s sufferer is generally reduced by a third.  Progressive memory loss and changes in personality occur early on. As the disease progresses, the patient becomes immobile and dysfunctional, requiring increasing levels of care. Several drugs, such as Aricept, Reminyl and Exelon, are currently marketed for the treatment of AD symptoms.  About one out of three patients respond and can tolerate the side effects of these treatments. In such patients, these drugs can provide symptomatic benefit, but generally only for 6 to 9 months.

Many avenues are being explored to find new treatments for this debilitating disease.  One approach, being pioneered by the biotechnology company Eunoe, Inc, looks at helping the body restore its own healing properties. The nervous system normally produces cerebrospinal fluid (CSF) that bathes the brain, clears products of brain cell metabolism and provides the optimal environment for brain cell function. In normal aging, CSF production declines.  In Alzheimer’s Disease patients, changes of normal aging may be worsened by amyloid deposition in the cells that produce and clear CSF, leading to marked CSF stagnation. The hypothesis is that impaired clearance and/or diminished production of CSF leads to stagnation of CSF, resulting in accumulation of toxic proteins and inflammatory mediators in the brain. Such accumulated substances play a key role in ongoing brain injury in Alzheimer’s Disease.

The COGNIShunt System, a flow-controlled shunt being developed by Eunoe, Inc., was designed to increase flow of CSF and improve clearance of potential neurotoxins from the fluid bathing the brain without causing overdrainage of CSF.  The placement of this shunt provides a new way for CSF to flow out of the brain’s fluid-filled cavities (ventricles) and into the abdomen, where blood vessels absorb the fluid.  Since the brain continuously generates fresh, toxin-free CSF, the placement of this drainage system should decrease the level of toxins in the fluid bathing the brain, while allowing increased circulation of fresh, toxin-free, CSF. Decreasing the toxins that may damage nerve cells in the brain may slow or stop the mental decline associated with Alzheimer’s Disease.

Although this is a novel, investigative approach to treating Alzheimer’s disease, the surgical procedure called shunting is a common procedure, having been used successfully by neurosurgeons since the 1950’s to treat other conditions such as hydrocephalus (excess fluid around the brain). Every year, approximately 100,000 shunts are placed or revised in hydrocephalus patients.

Data from a Eunoe, Inc. pilot feasibility study in 29 patients with mild to moderate Alzheimer’s Disease, conducted under an FDA-granted Investigational Device Exemption, indicate that the procedure and COGNIShunt System are well tolerated in Alzheimer’s patients.  The data from this feasibility study also show a substantial difference in mental function over time, with better preservation of mental ability in shunted patients versus the control group.   In addition, CSF levels of the potentially neurotoxic proteins found in Alzheimer’s brain lesions, such as Tau and Amyloid, declined in shunted patients and remained lower than their initial levels, even after twelve months.

Based on the encouraging results of the feasibility study, Eunoe, Inc. initiated a pivotal clinical trial that involves 25 sites throughout the U.S.  Those eligible to participate in the study must:

  • Have been diagnosed as having Alzheimer’ Disease
  • Be between 62 and 85 years old
  • Be a suitable candidate for surgical shunt implantation
  • Be able to read, speak, and understand English
  • Have a caregiver available to assist the subject in study participation and to participate in some evaluations (questionnaires)
  • Otherwise be in good health

Patients with onset of Alzheimer’s Disease before age 60, family history of early onset of Alzheimer’s Disease, or those in poor medical health are not eligible to enroll.  Patients with Normal Pressure Hydrocephalus (NPH) or those with other causes of dementia are not eligible to participate in the study.

As with any surgery or procedure requiring general anesthesia, there are risks involved.  In this procedure, the risks are believed to be the same as those for other surgical shunt placements.  For example, risks may include shunt infection, malfunction or failure, as well as risks associated with general anesthesia.

This procedure is not for all Alzheimer’s patients as it is still investigational.  However, Alzheimer’s patients and their families, caregivers, and treating physicians may participate in clinical studies that evaluate new, investigational therapies by making informed decisions based on their individual situation.  Additional information about the study can be found on the Eunoe, Inc. website (www.eunoe-inc.com).  Interested parties may also call 1.888.4MY.MIND (1.888.469.6463). (Participants will be reimbursed for reasonable travel expenses)

Current research centers:

  • Pittsburgh, PA
  • Providence, RI
  • Portland, OR
  • Louisville, KY
  • Springfield, MA
  • Brooklyn, NY
  • Tucson AZ
  • San Antonio, TX
  • La Jolla, CA
  • Scottsdale, AZ
  • Tampa, FL
  • Atlanta, GA
  • Ft. Myers, FL
  • Indianapolis, IN
  • St. Louis, MO
  • San Francisco, CA

Call 1-888-4MY-MIND or 1-888-469-6463 or log on to http://www.eunoe-inc.com to find out about participation.

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).

I want to extend a warm welcome to all of our current members. Just this month we passed a landmark 1,600 registered members. About half of you access the Forum regularly each week. The number of active posters is a bit smaller than that, but what this shows is that there are hundreds of people browsing and “lurking” through the posts… gathering information and ideas.

You don’t have to dive in fully and bare your soul to be a “good citizen.” Just talking the time to read the posts and open your heart and mind is often all the support that some of us need. If you want to join in the conversations, you can jump right in.

We have done a little bit of housekeeping in the Forum based on constructive suggestions from a group of members. We have created a new “Spousal Caregiver’s Meeting Room” for all caregivers who are caring for their significant other. We have also clarified the position of the Early Onset Alzheimer’s Disease room. That room is primarily for people who are caring for a loved one (also usually a spouse) with the rare form of Alzheimer’s Disease that strikes in one’s 40’s and 50’s.

Interestingly, we have seen an uptick in participation by caregivers concerned with less common dementias, such as Lewy Body Disease, Stroke care, and Parkinson’s Disease. We are working to define areas for these caregivers as well. I hope that you will participate in our survey and provide continued feedback.

If you have lost your password and have been unable to get it from the automated software, just send me a direct e-mail to rich@ec-online.net and I will send it out to you immediately.

CHAT SCHEDULE: Updates for September

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.

Most of the chat moderators will be on vacation at some point during the week of July 1 to 6 for the Independence Day holiday. The chatroom will be open, but we will not have facilitators on some days. Please check the schedule. You are welcome to continue to use the chatroom to meet and connect with your caregiving friends.

September 16 (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.”

September 18 (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."

September 18 (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.”

September 18 (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.”

September 19 (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.”

September 23 (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.”

September 24 (Tuesday 9:00 to 11:00PM EST) “Children of Aging Parents:” Host Brian Duke from CAPS leads a discussion for family caregivers seeking understanding and resources.

September 25 (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."

September 25 (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.”

September 25 (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.”

September 26 (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.”

September 30 (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.

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