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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March 15, 2002                                                                                 Vol. 5 No. 6
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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,

It was hard not to miss the news reports on nursing home abuses that came out of Washington, D.C. earlier this month. A Senate committee (http://aging.senate.gov/whatsnew.htm) probing the long-term care industry featured the heart-wrenching testimony of several family members whose loved ones have been the victims of physical and sexual abuse. Anyone who is concerned with social issues of aging by virtue of being old themselves or of being a professional in the field, should be outraged by these revelations.

But how revelatory are these stories? Didn’t we always know that nursing homes were the residences of last resort for aging and frail elders? Didn’t we silently acquiesce and accept the bureaucratic and impersonal conditions that so many nursing homes offered, largely because there were no alternatives? No, we never accepted abuse, neglect, or criminal activity. But did we really think that humane care could flourish in anything more than a handful of these facilities?

I don’t want this letter to be perceived as an indictment of the nursing home industry as bankrupt of compassion, or a criticism of family members as unloving. Every family member who we come into contact with on ElderCare Online and ALZwell Caregiver Support agonizes over the placement decision. Every eldercare professional I meet genuinely expresses a desire to help the aging residents under their care. But why do these abuses continue, and get worse still?

Academics, researchers, and analysts have been poring over data, benchmarks, and quality information for years, and they still haven’t come up with the solution to the problem: How do we deliver loving care within a government-directed, state-legislated, and financially unsound system? Those of us who have aging loved ones in nursing homes will attest to the daily compassion and assistance that caregivers in the facilities have given their loved ones. Most will come to agree (maybe with some time), that the placement decision was in the best interest of both the elder and the family caregiver. But no one will ever forgive themselves if their loved one becomes the victim of abuse.

Family caregivers have been on their own to learn ways to work within the system to get the best care possible for their loved ones. Sadly, many people who have been the victims of abuse were abused in spite of the best practices of their family members. Within a broken system, horror stories can happen to anyone. Many aging experts have come to believe that the best strategy is to overhaul the system, rather than tinker around the edges, optimize systems and processes, or fiddle with regulations.

Family members are caught in the downward spiral of a slowly crumbling long-term care system. Despite trepidation about placing a loved one, many still must make the transition to institutional living. Despite fear of abuse and neglect, those at risk must still be placed into a stranger’s care. Despite financially unsound practices, our country must continue to feed the Medicaid beast.

But I am an optimist because in my years in the aging field I have come in contact with enough family members and professionals who care enough to make a difference. Even if it means starting a revolution.

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

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INSIDE THIS ISSUE

A Personal Note
Feature Article: Tai Chi for Health and Fitness by Rich O’Boyle
News & Research: Eli Lilly Announces Drug Price Reduction Program
”Five Minutes With…” Bill Keane Discusses the Future of Nursing Homes
Caregiver Store: “Show Them That We Care” Video and Handbook
My Parents, Myself: A Monthly Column by Phyllis Kramer Hirschkop
For Professionals: The Pioneer Network
Top Alzheimer’s/Caregiving Sites: Bigtreemurphy.com
ElderCare Forum: Latest Postings
Chat Schedule: Updates for March
Subscription Information

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A PERSONAL NOTE

Thank you for all of the information and support that you all sent me regarding my father’s condition. I now have several resources to tap into and will be sharing them with my family members and parents. Thank you.

FEATURE ARTICLE: Tai Chi for Health and Fitness by Rich O’Boyle

The ancient Chinese martial art of tai chi has gained interest in the last few years as a preventative to falls that often lead to broken bones in the frail elderly. Researchers think that the emphasis on swaying and other choreographed movements may help individuals to improve their balance, enhance blood circulation, and ease the pain of arthritis. As an aerobic exercise, it has the added benefit of increasing muscle strength and tone.

Tai chi, also known as “shadow boxing,” combines routines of deep breathing, posturing, stretching, swaying, and other controlled movements combined with meditation. While it is related to martial arts such as karate, it is often called an “internal martial art” because it is graceful and soft, rather than hard and gymnastic. Tai chi is often practiced in groups, so it has the added benefit of increasing socialization.

Tai chi and other exercise routines are not just for seniors: caregivers and people of all ages can benefit from some form of regular exercise. You don’t have to bounce up and down on a Stair Master or pump iron to get lasting health benefits.

Read more about the health and fitness benefits of tai chi at http://www.ec-online.net/Knowledge/Articles/taichi.html.

NEWS & RESEARCH: Eli Lilly Announces Drug Price Reduction Program

I have updated our recent article on “New Programs for Reducing Drug Costs” with information about Eli Lilly’s prescription drug savings program. The new Lilly program covers drugs such as Evista® for osteoporosis, Humulin® and Humalog® for diabetes, Prozac® for depression, and Zyprexa® for schizophrenia. You can read the complete article at http://www.ec-online.net/Knowledge/Articles/drugcosts2.html 

I have also added several new research and news updates to the ElderCare Forum along our regular topics of caregiving, Alzheimer’s Disease, healthy aging, Parkinson’s Disease, and stroke. Recent news items are published at http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=forum&f=26.

”FIVE MINUTES WITH…” Bill Keane Discusses the Future of Nursing Homes

We continue our occasional series of interviews with provocative professionals in the field of aging with our latest installment of “Five Minutes With…” Of course five minutes isn’t much time to discuss these important issues, but it does give us an opportunity to start to think of them on our own and with fellow caregivers.

I spoke with Bill Keane on March 14 about the origins of the current crisis in nursing home care and the vision that activists like himself have for the future of nursing homes. Bill is the Director of Dementia Services at the Mather Institute on Aging (affiliated with Mather LifeWays retirement communities http://www.matherlifeways.com). He is also a member of the Board of Directors at the Pioneer Network (http://www.pioneernetwork.org), an organization dedicated to stimulating a positive culture of aging in America, including the transformation of nursing homes.

You can read the complete interview at http://www.ec-online.net/Knowledge/Articles/keaneinterview.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.”

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

Dear Phyllis:
My mother’s neighbor called last week to say that my mother fell without being able to get up. I called mother and asked her why she hadn’t called and made it clear that she simply couldn’t live alone anymore. My mother replied that it was her life and she’d do what she wants. I’m at my wit’s end! What should I do? Mary T. 

Dear Mary:
Your exasperation is understandable. But let’s assume that behind your mother’s bravado is someone scared because she feels she’s losing more and more control of her life. When you approach her with exasperation and talk to her as if she were a child, her immediate response is to act like one and dig in her heels. However, knowing how she might be feeling may make it possible to approach her with some sympathy and understanding. 

For example, you might say how sorry you are that she’s fallen and how frightening it must be to just feel her legs give out under her.  In this way, you’re conveying an expression of concern and understanding.

Something else you want her to know is that you worry about her living alone and think about what can happen if she isn’t able to drag herself to the phone. There’s a good chance then that she’ll acknowledge your worry but still insist that she wants to stay in her own home. This will hopefully be the beginning of a discussion about how you can both work together to figure out what kinds of help and support would make this possible. If she’s willing to let you be involved in helping her this way, you’ve made great strides toward insuring her safety and your peace of mind.

Maybe it will help you to know that children’s exasperation at their parents’ rejection of their well-intentioned help is a familiar story. It’s important to remember that whether you like your mother’s decision or not, as long as she’s capable of making decisions, they’re hers to make. Her health and safety, while primary, need to be managed together with her in the driver’s seat. P.K.H.

Phyllis Kramer Hirschkop is a trained social worker and has practiced as a psychotherapist for 26 years. He has also received training in coaching. 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. Her website is http://www.our-aging-parents.com.

©2002 Phyllis Kramer Hirschkop. Reprinted With Permission

FOR PROFESSIONALS: The Pioneer Network

There's good news for everyone who wants to change and transform the culture of aging in America, whether your interests are home and community care, retirement housing, assisted living, nursing homes or anywhere that elders may be living.  It is possible to change the culture of aging! The potential for culture change is alive within you and within your organization.

It is ironic that as America's elders live longer, they are often forced to surrender freedom and control in order to get the fundamental human support and services they need. The more elders become physically dependent, the more individuality they are forced to give up. Society views aging as a process of diminishment, so our elders enter a new phase of living in a world that is often uninterested in them as individuals and unreceptive to their unique gifts and needs. This experience can reach its ultimate expression in the traditional nursing home and in other institutions, places where our elders can no longer control their basic pleasures and rights.

You are invited to join the Pioneer Network and learn how you can make a difference. We are a network of people dedicated to supporting elders and those who work with them.  We are elders, family members, administrators, nurses, certified nursing assistants, resident assistants, physicians, social workers, educators, researchers, ombudsmen, advocates, regulators and architects.  We are creating a better culture in all settings where elders live, with the intention of building loving, elder-directed communities.

Where are Pioneers speaking? For more information on these events, contact the Pioneer Network at (716) 244-8400 ext. 115 or visit the Pioneer Network website at http://www.pioneernetwork.org.

April 2, 2002
“Pioneering Approaches in Long Term Care”
Denver, Colorado
Contact:  Carmen Bowman, Colorado Dept. of Public Health and Environment
carmen.bowman@state.co.us

April 4-7, 2002
“Creating Person-Directed Care: A Workshop for Organizational Transformation”
2002 Joint Conference of NCOA-ASA
Denver, Colorado
Contact:  http://www.agingconference.org

April 9, 2002
“Pioneering Approaches in Long Term Care”
Butte, Montana
Contact:  Rose Hughes, Montana Health Care Association, 406-443-2876

April 10, 2002
“Building the New Culture of Long Term Care”
Life Services Network Annual Conference
Chicago, Illinois
Contact:  Bill Keane, Mather Institute on Aging, 847-492-6819,
bkeane@matherlifeways.com 

April 18, 2002
“Transforming the Culture of Long Term Care”
Wyndemere Life Care
Wheaton, Illinois
Contact:  Liz Summers, 630-829-6230
 

April 24-25, 2002
“Pioneering Approaches in Long Term Care”
Topeka, Kansas
Contact:  Letty Seidl, Kansas Association of Homes and Services for the Aging
Seidl@kahsa.org

May 29, 2002
“Champions of Culture Change in Long Term Care”
Ithaca, New York
Contact:  Pam Mayberry, 607-274-1607
 

August 14-17, 2002
“Becoming a Champion of Change”
Pioneer Network Third National Conference
Oak Brook, Illinois
Contact:  RoseMarie.Fagan@PioneerNetwork.net
 

TOP ALZHEIMER’S/CAREGIVING SITES: Bigtreemurphy.com

I have known Beverly Bigtree Murphy for a few years now. When I first came across her website, I was so impressed with her straight-forward attention to the ethical, emotional, and physical care issues associated with Alzheimer’s Disease. She was out first featured author, and still one of the most popular writers on our websites.

Her voice and style is unique. She has been through the trenches. Not only has she lived to tell about it, she has more ideas and wisdom to impart than any of the other caregiving authors. He book “he used to be somebody” is always on my recommended reading list for new and experienced caregivers.

Her website offers numerous articles on such topics as “Challenging Bias and Negative Attitudes on Alzheimer’s Disease,” “The Team Approach to Caregiving,” and “Turning the Home into a More User-Friendly Environment.” You can visit Beverly’s website at http://www.bigtreemurphy.com. You can also read additional articles by Beverly on our Alzheimer’s & Dementia Care Channel at http://www.ec-online.net/alzchannel.htm.

Additional caregiver websites are listed in our Caregiver Support Center at http://www.ec-online.net/Community/communit.htm. E-mail Rich at rich@ec-online.net to submit your personal website to our growing list.

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.

ELDERCARE FORUM: Latest Postings

Recently I have seen an uptick in the amount of tense postings in the Forum. Most of us are stressed out for one reason or another. Please be careful about venting against each other. We all have individual opinions and perspectives, and they are all valid. It’s painful to see the venting directed at individuals rather than the disease.

I want to ask everyone to be more open to other’s perspectives. Share your opinions and vent when necessary. But please be understanding that everyone’s journey is different. You may not agree with everyone, but you can empathize with them and see where they are coming from.

If you would like to register, please follow this link: http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=agree. Please excuse any little error messages that you may receive. We are working to resolve a software glitch. I will manually send your registration information and password. Just fill out the information and wait. I will get it to you in less than a day (probably within 15 minutes).

(Note: Some of these links may not transfer correctly via e-mail. In that case, just go to the Forum at http://216.122.139.136/cgi-bin/ultimatebb.cgi or read this newsletter off of the website at http://www.ec-online.net/Knowledge/Newsletters/beacon021502.htm).

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

About Our Community: “Who Helps the Moderators?:” Learn a little more about the individuals who help to keep the website and support groups up and running at http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=get_topic&f=30&t=000036

News and Research: Several items have been added on general health topics of interest to women and caregivers, as well as our regular updates on Alzheimer’s Disease, Parkinson’s Disease, and stroke… http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=forum&f=26

Casual Corner: “Something to Think About:” Our member shave been posting inspirational and thoughtful stories here for the past month or so. I’m sure that you will find many of them inspirational even if you have heard them before…http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=get_topic&f=20&t=000042

Daily Challenges: “Mother is MORE Than Awake:” New member “frazzled” has joined our Forum and needs some advice and support. Her mother is in a nursing home and has been improving gradually. Can you relate to her story? http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=get_topic&f=1&t=000192

Early Onset Alzheimer’s Disease: “Spousal Caregivers Meeting Room:” You don’t have to be coping with Early Onset Alzheimer’s Disease to appreciate the tight friendships and support that our members share here. The issues that spouses face are different from those of adult children, so we carved out a place just for them at http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=get_topic&f=29&t=000064.

New Caregiver’s Meeting Room: “We Thought It Was Stress:” Member Joan Marie got a load off of her chest when she vented about some recent bad times. The Forum is a safe place where you can express your feeling without judgment or criticism… http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=get_topic&f=40&t=000031

I, Caregiver: “Burnout:” This is a good place to grab a cup of coffee. It is turning into another of our comfortable Meeting Rooms. Catch up with other members on what’s going on with your day… http://216.122.139.136/cgi-bin/ultimatebb.cgi?ubb=get_topic&f=19&t=000037.

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 March

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.

March 16 (Saturday 1:00 to 2:00PM EST) “Sugarlips’ Chatroom:” Host Vicki Gardner welcomes caregivers for a social and networking discussion group on the topic of “Expressing Our Emotions.”

March 18 (Monday 9:00 to 11:00PM EST) “Bubblehead’s Chatroom:” Host Edyth Ann Knox leads a supportive chat group for dementia caregivers on the topic of “Caregiving for People with Dementia.”

March 19 (Tuesday 9:00 to 11:00PM EST) “Children of Aging Parents:” Host Brian Duke from CAPS and the Institute for Aging at the University of Pennsylvania leads a discussion for family caregivers seeking understanding and resources.

March 20 (Wednesday 5:00 to 7:00AM EST) “Ozcarers' Chatroom (or Pong's Place):" Hosts Pongfoot (David) and Splash (Edith) welcome caregivers from around the world to drop in and put their feet up for a while, chat with other caregivers and "Take a Break."

March 20 (Wednesday 1:00 to 2:00PM EST) “Sugarlips’ Chatroom:” Host Vicki Gardner welcomes caregivers for a social and networking discussion group on the topic of “Expressing Our Emotions.”

March 20 (Wednesday 9:00 to 11:00PM EST) “Bubblehead’s Chatroom:” Host Edyth Ann Knox leads a supportive chat group for dementia caregivers on the topic of “Caregiving for People with Dementia.”

March 21 (Thursday 9:00 to 11:00PM EST) “Sugarlips’ Chatroom:” Host Vicki Gardner welcomes caregivers for a social and networking discussion group on the topic of “Expressing Our Emotions.”

March 23 (Saturday 1:00 to 2:00PM EST) “Sugarlips’ Chatroom:” Host Vicki Gardner welcomes caregivers for a social and networking discussion group on the topic of “Expressing Our Emotions.”

March 25 (Monday 9:00 to 11:00PM EST) “Bubblehead’s Chatroom:” Host Edyth Ann Knox leads a supportive chat group for dementia caregivers on the topic of “Caregiving for People with Dementia.”

March 27 (Wednesday 5:00 to 7:00AM EST) “Ozcarers' Chatroom (or Pong's Place):" Hosts Pongfoot (David) and Splash (Edith) welcome caregivers from around the world to drop in and put their feet up for a while, chat with other caregivers and "Take a Break."

March 27 (Wednesday 1:00 to 2:00PM EST) “Sugarlips’ Chatroom:” Host Vicki Gardner welcomes caregivers for a social and networking discussion group on the topic of “Expressing Our Emotions.”

March 27 (Wednesday 9:00 to 11:00PM EST) “Bubblehead’s Chatroom:” Host Edyth Ann Knox leads a supportive chat group for dementia caregivers on the topic of “Caregiving for People with Dementia.”

March 28 (Thursday 9:00 to 11:00PM EST) “Sugarlips’ Chatroom:” Host Vicki Gardner welcomes caregivers for a social and networking discussion group on the topic of “Expressing Our Emotions.”

March 30 (Saturday 1:00 to 2:00PM EST) “Sugarlips’ Chatroom:” Host Vicki Gardner welcomes caregivers for a social and networking discussion group on the topic of “Expressing Our Emotions.”

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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