The Caregiver's Beacon Newsletter

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The Caregiver’s Beacon (tm)
“Tell me why – Show me how – Hold my hand”
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October 15, 2002                                                                                 Vol. 5 No. 19
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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,

Most of us have gotten used to coming down with at least one bad cold each winter. Suffering through the sniffles, coughs, and fatigue for anywhere from a few days to a few weeks. But for the elderly, winter maladies such as a bad cold, the flu, or pneumonia can be deadly.

Influenza, commonly call “the flu,” is a contagious disease that is caused by a virus that attacks the nose, throat, and lungs. The flu is spread when an infected person coughs, sneezes, or speaks and sends flu virus into the air, and other people inhale the virus. Flu may, less often, be spread when a person touches a surface that has flu viruses on it – a door handle, for instance – and then touches his or her nose or mouth. It’s a good idea to steer clear of people who have the flu or recently got over an infection. It also makes sense to keep your hands clean.

Now is the time of year to get a flu and pneumonia shot… for both your aging loved one and yourself. Read the complete article on flu and pneumonia at http://www.ec-online.net/Knowledge/Articles/flu.html. It gives a great deal of information on the shots, as well as places where you can get one. October is the ideal month to get a shot, so do it as soon as possible.

It is somewhat short notice, but I want to invite all of you to attend a live dementia care webcast produced by our friends at Wider Horizons and WHYY public broadcasting in Philadelphia. The latest information on Alzheimer’s Disease, will be presented in a live WHYY webcast Friday, October 18 from 9 a.m. to 5 p.m. To access the webcast visit WHYY’s Wider Horizons website at http://www.widerhorizons.org.

Pre-registration prior to the webcast is HIGHLY RECOMMENDED to ensure your computer has the right settings to receive the webcast. It is quick and easy, even for the least computer literate!

The webcast presents the first dementia care conference organized by The University of Pennsylvania’s Alzheimer’s Disease Center, “Dementia Care: Living for Today and Planning for Tomorrow.” The conference is designed especially for individuals with dementia in the early stage and family members who care for someone at any stage. Conference speakers are drawn from Philadelphia’s nationally known leaders in aging and dementia care. They bring cutting edge information on dementia with a focus on day-to-day care and planning for the future. Topics include a research update, community and financial resources, making end-of-life care choices, understanding behavior, and much more.

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

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INSIDE THIS ISSUE

Feature Article: “Bed, Bath, and Between: Tips on Home Safety and Modifications” by Rich O’Boyle
Caregiver Store: “Show Them That We Care” Video and Handbook
Dementia Webcast: “Dementia Care: Living for Today and Planning for Tomorrow”
Monthly Column: “Getting Elders to Attend Adult Day Care” by Jacqueline Marcell
Healthy Aging: “Influenza and Pneumonia in Older People” by Rich O’Boyle
Our Sponsor: Study of New Device-Based Treatment for Alzheimer’s Disease
ElderCare Forum: Latest Posts
Chat Schedule: Updates for October
Subscription Information

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FEATURE ARTICLE: “Bed, Bath, and Between: Tips on Home Safety and Modifications” by Rich O’Boyle

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 perception.

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).

The complete article with numerous life-saving tips can be found at http://www.ec-online.net/Knowledge/Articles/homesafety.html

CAREGIVER STORE: “Show Them That We Care” Video and Handbook

Very few of us plan to place a loved one in a nursing home... It all happens so suddenly. An injury, an illness, a stroke, or just old age convinces their doctor, and you, that a nursing home is the best place for them. Now you find yourself in a totally new situation...one you have probably never imagined: visiting a nursing home on a regular basis.

The purpose of the video and handbook is to show and explain how to make visits to any nursing home more enjoyable for both you and the one you are visiting.

Topics Covered:

  • Classifications of residents
  • Cautions to be taken
  • Comfort for the resident
  • Companionship
  • Conveniences
  • Cleanliness
  • Courtesy
  • Communication
  • Common sense

Ron and Susan Stauffer are the owners of Stauffer Video Services, Inc., and are both caregivers. Susan has been a caregiver to her Downs Syndrome daughter for over 30 years and works part time for the Franklin County Program for the Mentally Retarded. Ron is a caregiver to their daughter and has also spent 5 years caring for his parents who were residents in a nursing home.

The video is 26 minutes long, and the handbook is 40 pages long. It is available from ElderCare Online for $24.95 + $4.00 S&H in our online store at http://www.ec-online.net/Store/media.htm. All purchases of the video/handbook product include free access to our online tutorial “Choosing a Nursing Home.”

DEMENTIA WEBCAST: “Dementia Care: Living for Today and Planning for Tomorrow”

The latest information on Alzheimer’s Disease, which affects at least four million Americans, will be presented in a live WHYY webcast Friday, October 18 from 9 a.m. to 5 p.m. To access the webcast visit WHYY’s Wider Horizons website at http://www.widerhorizons.org.

The webcast presents the first dementia care conference organized by The University of Pennsylvania’s Alzheimer’s Disease Center, “Dementia Care: Living for Today and Planning for Tomorrow.” The conference is designed especially for individuals with dementia in the early stage and family members who care for someone at any stage.  Most people with Alzheimer’s Disease live at home and are cared for by family members.

Conference speakers are drawn from Philadelphia’s nationally known leaders in aging and dementia care. They bring cutting edge information on dementia with a focus on day-to-day care and planning for the future. Topics include a research update, community and financial resources, making end-of-life care choices, understanding behavior and much more.

To bring this valuable information to a national and international audience the Alzheimer’s Disease Center has partnered with WHYY’s Wider Horizons to offer the live webcast of the conference. This exciting technology will allow audio of the conference proceedings, accompanied by website content, to be broadcast to an Internet audience. The live webcast will include a chat room enabling the Internet audience to participate in the conference by asking questions through a moderator. This is one in a series of interactive webcasts hosted by WHYY, the Philadelphia region’s prime public broadcasting station, with its technology partner ULiveandLearn.

An added benefit is that the live webcast will be archived so that people around the world can view the conference at any time in the future.

The Conference is sponsored in part by generous grants from the National Institutes of Health/National Institute on Aging, John A. Hartford Center of Geriatric Nursing Excellence, Nastech Pharmaceutical Company Inc., and the University of Pennsylvania Health System's Board of Women Visitors.

The webcast is made possible by a generous grant from the Novartis Foundation for Gerontology. More information is available at http://www.healthandage.com. Pre-registration prior to the webcast is recommended to ensure your computer has the right settings to receive the webcast.

MONTHLY COLUMN: “Getting Elders to Attend Adult Day Care” by Jacqueline Marcell

After giving up my life completely for nearly a year to go care for my elderly parents, trying to get control over my extremely rebellious father, I was advised to get them enrolled in Adult Day Care. I had absolutely no idea what that was, having no experience in eldercare, thinking it was a glorified nursing home or something. Even though my parents were still together after 58 years of marriage and in their own home with full-time care, I didn't realize that they needed much more daily stimulation. They'd want to sleep all day and then my father would be up all night, reeking havoc, making everyone miserable. The Alzheimer's Association helped me understand how important it was to give them something to do outside of lying in bed 23 hours a day—waiting to die. Oh-kay, but how in the world was I going to get them to consent to go there?

My father fought us about it for weeks, yelling that he would, “not go, NO, nooope, not going, just forget it!” and he refused to take a shower or change his filthy coveralls for over a week. We persisted and finally got my parents there for their first day. My mother loved it, but my father was completely repulsive and tried to sabotage it. The Day Care staff kept trying to separate them because he wouldn’t leave her alone, holding on to her too tight and touching her inappropriately. Then, he threw his lunch on the floor in a raging top-of-his-lungs temper tantrum, and when that didn’t make them let Mom be with him, he went into the bathroom and tried to escape out the window. When he couldn’t get out he came out of the restroom with his coveralls unzipped exposing himself. Then, he even messed in his own pants and threw another swearing temper tantrum when they made him sit away from everyone because he smelled so bad. Four hours later when we arrived to pick them up, the social workers were completely exhausted and fed up with him, saying that he could not return because he was so disruptive.

It was no small feat and months later, but we finally got my father to accept the routine of going to Day Care. No one was more surprised than I when my parents became such shining success stories, progressing so dramatically in their behavior and strength. They are better now than they've been for many years and they sleep peacefully through the night, which is a blessing for everyone. The morning brings daily excitement to see the shuttle and their favorite driver come pick them up to go see all their friends. They finally have someplace to go, people to see and fun things to do.

Now that I have solved the complex mystery of managing "challenging" elders and written a book about it, I understand that any kind of change can be terribly frightening for many elders. Had the Day Care staff taken a little extra time to help me know what to do and coached me how to do it, we could have made a difficult, scary transition happen with a lot less aggravation. Ah, hindsight—it's always 20/20!

First, I'd have a social worker call my father a few times and develop a relationship with him over the phone. Then I'd have her "drop in" to say hello because she was "in the neighborhood." Then, after taking my parents out to a relaxing lunch, I'd casually drive by the Day Care center and say, "Why don't we drop in and say hello to that nice lady, Mary, who was so sweet to stop by the other day?" I'd have an appointment already set up so we could take a tour and meet the rest of the staff and other seniors. Then, a few days later, I'd go with my parents to lunch at the center and help the social workers make them feel comfortable. Yes, a gradual transition would have saved us all a lot of heartache.

Day Care administrators and social workers can make a huge difference to first-time caregiving adult children and spouses who are unaware of how to handle all the eldercare issues they are faced with. They are usually in a crisis, trying to manage it all, and may not be thinking clearly. Had I been told that all the daily activities would tire my parents out during the day so they'd sleep through the night, I'd have tried to get them there a lot sooner. It seems obvious to me now, but at the time it just didn't occur to me.

Now I tell everyone who struggles to manage their elderly parents about the tremendous value of Adult Day Care. I smile each time I heard the same reluctance: “They would never go there, Jacqueline.” The negative stereotype of Day Care needs a major PR campaign—and the caregiving professionals who take a little extra time to educate and comfort struggling families are really the ones who can make a significant difference in the lives of the patients as well as their overwhelmed caregivers.

Jacqueline Marcell is a former television executive, who after the experience of caring for her aging parents has become an author, publisher, radio host, national speaker, and advocate for eldercare awareness and reform--presenting real solutions for effective management, medically and behaviorally, of elderly loved ones who resist care. She is the author of “Elder Rage or, Take My Father… Please! How To Survive Caring For aging Parents.” Her radio show is “Coping with Caregiving” http://www.elderrage.com

HEALTHY AGING: “Influenza and Pneumonia in Older People” by Rich O’Boyle

Most of us have gotten used to coming down with at least one bad cold each winter. Suffering through the sniffles, coughs, and fatigue for anywhere from a few days to a few weeks. But for the elderly, winter maladies such as a bad cold, the flu, or pneumonia can be deadly.

Influenza, commonly call “the flu,” is a contagious disease that is caused by a virus that attacks the nose, throat, and lungs. The flu is spread when an infected person coughs, sneezes, or speaks and sends flu virus into the air, and other people inhale the virus. Flu may, less often, be spread when a person touches a surface that has flu viruses on it – a door handle, for instance – and then touches his or her nose or mouth. It’s a good idea to steer clear of people who have the flu or recently got over an infection. It also makes sense to keep your hands clean.

To read the complete article, go to http://www.ec-online.net/Knowledge/Articles/flu.html

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 Posts

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).

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 October

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 and Wednesday mornings.

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.

October 16 (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."

October 16 (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.”

October 16 (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.”

October 17 (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.”

October 21 (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.”

October 22 (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.

October 23 (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."

October 23 (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.”

October 23 (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.”

October 24 (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.”

October 28 (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.”

October 30 (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."

October 30 (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.”

October 30 (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.”

October 31 (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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