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 1, 2002                                                                                 Vol. 5 No. 18
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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,

Last week was quite a whirlwind for me and my family. As many of you know, my father has lived with leukemia for about six years. His treatment was progressing well, but about two weeks ago he developed a complication from his chemotherapy. Last Wednesday he died after a few days of seriously declining health.

I often prepare this newsletter a week or ten days in advance, so it is fairly easy to get it proofread and e-mailed by deadline. The welcome letter is usually the hardest part. There has been so much running through my head and heart these last several days. I wish that I could get it down on paper because his passing has given me such clarity of thought and emotion. In coming newsletters, I will be writing about my personal experiences, as well as practical matters that I have come into contact over the last few years. But right now I have to spend time with my mother and brothers.

One thought/feeling that has been with me throughout my father’s illness has been the importance of open relationships. My father’s cancer diagnosis has given my whole family the Gift of Time… to cut through a lot of the BS, to speak frankly and sincerely, to share experiences. That gift has been so precious to me personally. In his passing, I have no anger or fear. I know that he was at peace with God and his family on so many levels.

Every moment that we spent together – even the last 20 minutes in the hospital when he was dying, and the 20 minutes by his bedside after his death – has a certain positivity. I know that not every one has the opportunity for such complete closure. But if one lesson is apparent (and I learned this accidentally) it is to take the opportunity of a terminal diagnosis and use the remaining time to enjoy your loved one’s presence.

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: Final Call for Feedback
Feature Article: “Influenza and Pneumonia in Older Adults” by Rich O’Boyle
ElderCare Bookstore: New Books by Friends of ECO/ALZwell
My Parents, Myself: A Monthly Column by Phyllis Kramer Kramer Hirschkop
Five Minutes With… Harry (Rick) Moody on Spirituality and Aging
Our Sponsor: Study of New Device-Based Treatment for Alzheimer’s Disease
ElderCare Forum: Jim Kallio is Our Newest Moderator
Chat Schedule: Updates for October
Subscription Information

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WEBSITE IMPROVEMENT SURVEY: Final Call for Your Feedback

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. All respondents will receive access to the online tutorial version of the “Managing Medicines Safely” Learning Resource Guide.

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: “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 

ELDERCARE BOOKSTORE: New Books by Friends of ECO/ALZwell

We have updated the Eldercare Bookstore to include a new list of top books as ranked by the number of purchases by our members in the month of September. We have also featured two new books by two “Friends of ElderCare Online and ALZwell Caregiver Support,” Brenda Parris Sibley and Dorothy Womack.

Evoking both tears and laughter, all of the emotions of Alzheimer's care giving are expressed in this chronicle, through moving poetry, journal entries, and photos from family albums through the years. From the creator of the award-winning website, "A Year to Remember...with My Mother and Alzheimer's Disease," this book brings together Brenda Parris Sibley's poetry, her caregiving journal, and cherished photographs from family albums through the years. It provides helpful information for coping with caregiving, including a bibliography of suggested books for both adults and children, and a webliography of recommended Web sites by organizations, professionals, caregivers, and early-onset Alzheimer's patients.

Waiting for the Morning: A Mother and Daughter's Journey Through Alzheimer's Disease by Brenda Parris Sibley http://www.amazon.com/exec/obidos/ASIN/059518782X/eldercareonlinet

Dorothy Womack’s collection of poems is both insightful and inspirational. She has always been a popular contributor to leading websites and publications, including ElderCare Online. Her poetry appeals to both devout Christians, as well as spiritually conscious individuals.

Alzheimer's Angels: A Compilation of Poetry Honoring Caregivers and Victims of Alzheimer’s Disease by Dorothy Womack http://www.amazon.com/exec/obidos/ASIN/0595245501/eldercareonlinet

For more books on caregiving, healthy aging, and Alzheimer’s Disease, visit the Eldercare Bookstore at http://www.ec-online.net/Connections/bookstore.htm 

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

Dear Phyllis:

My parents, who are in poor health, have problems with alcohol abuse and poor hygiene. They live in their own home but can’t do the things that are needed to maintain themselves and their home.

I am the only one of three children who seems to care about their alcoholism and deteriorating living conditions. I can’t afford to help them financially nor tolerate the idea of them living with me. They deny all problems. I just wait for the next crisis to occur.

Can you offer any suggestions?

Betty G.

Dear Betty:

It’s common for alcoholics, young and old, to deny their problem and therefore refuse treatment. Unfortunately, their problems, as you’ve found out, become more acute with age and affect not just themselves but others around them.

Not surprisingly either, there’s an increase in the number of elderly people admitted to hospital emergency rooms because of excessive drinking. A lot of their difficulties are due to impaired physical and intellectual functioning. They arrive with hip fractures due to falls, injuries from auto accidents, and the serious side effects of mixing alcohol and medication. As you fear, your parents may soon be among them.

The first thing to do is call your local alcohol treatment center and tell its staff members the problem you face. Ask them if they can direct you to available community resources.

For example:

Ask them whom to contact at the city or county department of aging to discuss the resources available to you and your parents, including financial advice, physical care, and psychological counseling to help you deal with your parents’ problem.

Ask them whom to contact at your local agency that provides protective services to people in difficulty or your local health department to explore the possibility of an investigator who will go to your parents’ home to assess their situation.

Ask them how to find out about specialists who conduct interventions. Such a professional will help a group of family and friends to confront your parents with the impact of their drinking on others in an attempt to convince them to enter treatment.

I also suggest that you call AL-ANON for yourself. This is a family component of Alcoholics Anonymous. Its purpose is to help someone in your situation deal with alcoholic family members. AL-ANON is likely to be listed in your local phone book.

It’s important that you get help because you can’t provide all your parents needs by yourself, and it’s understandable that you don’t in any case want to do that. Remember that taking care of yourself is the first step to effective caregiving.

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

FIVE MINUTES WITH… Harry (Rick) Moody on Spirituality and Aging

Harry (Rick) Moody is the Director of the Institute for Human Values in Aging, affiliated with the International Longevity Center. Moody is the author of over 80 scholarly articles, as well as a number of books, including "Ethics in an Aging Society" and "The Five Stages of the Soul." He has served in numerous academic and research capacities. He is known nationally for his work in older adult education and is currently Chairman of the Board of Elder Hostel. He is the Editor of the "Human Values in Aging UPDATE" e-mail newsletter and "Aging and the Human Spirit" print newsletter published by the University of Texas Medical Branch.

To read the complete interview, visit http://www.ec-online.net/Knowledge/Articles/rickmoody.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: Jim Kallio is Our Newest Moderator

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).

Please welcome our newest Moderator, Jim Kallio. Jim is a caregiver for his 90 year-old mother who has been diagnosed with Alzheimer’s Disease since March of 1996. She has been under constant supervision since she fell and broke her arm in September 1998. She was at the point then where she could not function safely alone anymore. He has been involved in her care since June of 1998, and was appointed her guardian and conservator in March of 1999.

His mother is currently in the moderate stage of AD, can still ambulate well, but needs help with just about all of her activities of daily living. She still eats well, speaks well and appears to follow conversations but will not initiate conversation to any degree. She currently lives in a dementia specific group home, a regular house that is home to 7 other people.

Jim was born and raised in the Northern Virginia suburbs of Washington D.C. and has been there for 50 some odd years. He was trained as a mechanical engineer, a position he held for 39 years and is now looking for other avenues of expression. He’s currently getting oriented to retirement life. His main interest is in surviving caregiving in the best way possible. He participates in two online caregiver help groups and attends many of the local Alzheimer Association caregiver functions. In his down time he enjoys reading and listening to music.

Please welcome Jim to his new role in our support community. Our Moderators are people who have either been through long spans of caregiving, or are currently going through the journey. While we may not hold degrees in medicine, law, or social work, we feel that we hold “Ph.D.’s in Life.” This real life experience is a critical piece of knowledge that should be combined with advice and input from your healthcare and legal teams.

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 2 (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 2 (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 2 (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 3 (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 7 (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 8 (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 9 (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 9 (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 9 (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 10 (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 14 (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 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.

SUBSCRIPTION INFORMATION

The Caregiver’s Beacon is published bimonthly by ElderCare Online and ALZwell Caregiver Support. To subscribe to this free newsletter, visit the subscription information page at http://www.ec-online.net/Knowledge/Newsletters/subscribe.htm.

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