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 1, 2001                                                                                 Vol. 4 No. 16
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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, 

Labor Day here in the U.S. is celebrated as a way of honoring the many workers who built the country. Back in the 1940’s and 1950’s after World War II, these were the men and women who built our interstate highway system, assembled cars and trucks, taught the children of the Baby Boomers, and laid the foundations of our international leadership. Fast forward to the 21st century and American “Labor” is more and more service workers, financial professionals, retail sales persons, and healthcare workers.

I would like to dedicate this newsletter to the millions of healthcare workers who get up every morning and attend to our sick loved ones. Some find easy criticism in the healthcare workers who provide care in nursing homes and public hospitals. Indeed, these institutions are strapped for cash and paying their staff decent wages is a constant struggle. Too often, individual members of the staff lose their focus and the quality of care suffers. Deep down, healthcare providers intend to provide the best, most compassionate, and innovative care. But it seems that the deck is stacked against them.

The perverse payments systems and competing financial organizations seem intent on severing the most important link to their customers, the hands-on healthcare providers – the nurses, CNAs, and staffers – who make the difference day-to-day for people in institutional care. It’s no wonder that these healthcare professionals are at odds with their management and are pushing for formal recognition and bargaining power as unionized workers. I just hope that these efforts at unionization continue to have the patient at the center, rather than just desperate grabs for the shrinking pool of money in the healthcare system.

Don’t get me wrong: I am the first to insist on maintaining good relations with all of the healthcare professionals on you and your loved one’s team. But, there comes a time when you have to put your foot down and insist that the staff put aside their grievances with management and focus on quality care. Your best defense against indifferent care is to STAY INVOLVED all the time if your loved one is in the hospital or in a long-term care facility. Don’t be a pest! But make it clear that you are relying on the professionalism of the staff to ensure your loved one’s well-being. Do your part, and they will do theirs.

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

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INSIDE THIS ISSUE

The Forum: Flirting and Casual Conversation
Caregiver Voices: Eleanor Bell’s Story
Activist Alert: Caregiver of the Year
Book Review: Nursing Homes: The Family’s Journey by Peter Silin
Prism Care Card: Healthcare Discount Program Launched
Feature Article: Tips on… Successful “Parentcaring” by Edyth Ann Knox
Research Requests: Canadian Documentary Series
Keepin’ Up With ALZwell: Questions and Answers
Chat Schedule: Updates for September
Subscription Information

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THE FORUM: Flirting and Casual Conversation

The ElderCare Forum Community Message Board is such a dynamic and freeform place. Don’t get me wrong, there is some structure and guidance to it, but basically, we allow our 500+ members to determine the course of conversation, the topics of discussion, and the tenor of the relationships. I feel like I was the one who got the ball rolling, and then stepped aside and let you folks take charge.

I would like to subtly interject a little bit of my preferences into the way that the Forum is evolving. I see so many casual friendships arising – and it is these that are so rewarding to all of us. They help to relieve the isolation of homecare, as well as satisfy our basic human need for connection with others.

Now don’t get me wrong: I am fully supportive of the way the Forum is running. I just am a little concerned that more and more casual conversation is popping up in areas other than “Casual Corner” and the various Caregiver Meeting Rooms. I just ask that we keep more “on topic” by staying in those areas when chatting informally.

When new arrivals look at the active topics, many of them appear to be only casual conversation. The self-help discussions that are so useful from the Homecare, Family Dynamics, and other sections seem to get buried under the friendly banter. Please continue all of your discussions in the most appropriate place!

And a special note on “flirting:” Well, I guess it’s OK if you keep it adult and responsible J You know who you are…

CAREGIVER VOICES: Eleanor Bell’s Story

I wrote a story last year for this section entitled "My Husband of 38 Years." Now here is a brief follow-up story concerning my beloved spouse. No, he isn't dead, but I couldn't be any more devastated if he was. Things got worse with his Alzheimer’s and I had to place him in a long-term care facility. He became so terribly confused and lost touch with reality. How I miss him. Sometimes I can't go on without him, but I realize I must so that I can supervise his care.

I hope that all you caregivers out there will cherish your loved ones while you can, because it is a terrible loss when you have to be torn apart. I remember all the good times we had in our 40 years together, but dear Lord it is not enough to dry the tears that I cry constantly. Our home that he loved so much is so empty without his teasing and laughter. When I go to visit him he doesn't even notice when I leave him. That just tears my heart out. Recently they sent him to a psychiatric hospital when he was terribly agitated and threatening to killed himself. They are now evaluating him and putting him on different medications to assail the demons that torture my beloved's soul. I can't sleep or eat myself for agonizing over my precious Gerald.

I would like all of you to pray for me, to strengthen me for the long and terrible road ahead of me. Let us all pray for a cure for this terrible disease that has wrecked so many of our lives. Anyone who is going through this gut-wrenching ordeal, feel free to e-mail me, perhaps we can comfort each other. God bless all of you!

by Eleanor Bell

You can read additional stories and perspectives of other caregivers on the ALZwell Caregiver Support website at http://www.alzwell.com. To connect and share with other caregivers, you can use the ElderCare Forum Community Message Board at http://216.122.139.136/cgi-bin/ultimatebb.cgi

ACTIVIST ALERT: Caregiver of the Year Award

“Caregiving!” newsletter and Caregiving.com, sponsors of the Seventh Annual Caregiver of the Year Award, proudly announces a call for nominations for its Seventh Annual Family Caregiver of the Year Award. Each year, “Caregiving!” newsletter and Caregiving.com honor five family members who help their aging relatives.

“Caregiving!” newsletter and Caregiving.com hold the annual award in order to recognize and honor the efforts of persons who care for an aging relative. An independent panel of judges chooses five winners; the winners, and their stories, are featured in the December issue of “Caregiving!” newsletter and on Caregiving.com.

This year, Life Alarm, a medical alarm system provider, will award one of the five winners a year of service--at no cost to the winner. "We're thrilled that one of the five award winners will receive such a useful and helpful prize," says Denise Brown, Editor and Publisher, “Caregiving!” newsletter. "We know what a welcome gift this prize will be for one of our winners." The Life Alarm prize will be awarded to one of the winners through a raffle drawing. Other prizes include a subscription to “Caregiving!” newsletter, a monthly publication, for as long as the winners need it.

Anyone caring for an aging relative, friend or neighbor is eligible for the award. Nominations are accepted annually from June 1 through October 15. Family caregivers can be nominated by other caregivers, health care professionals, family, friends, even themselves. An independent panel of judges chooses five winners based on the following criteria:

  • The caregiver's ability to complement their caregiving responsibilities with their own needs and interests;
  • The caregiver's problem-solving techniques;
  • The caregiver's use of community services; and
  • The caregiver's community involvement.

To nominate a family caregiver, simply write an essay describing how that caregiver meets the above criteria. The letter should include the names and addresses of both the nominator and the nominee. Letters can be sent via e-mail to Denise Brown at denise@caregiving.com or via regular mail to Tad Publishing Co., P.O. Box 224, Park Ridge, IL, 60068.

To learn more about the Caregiver of the Year award, please visit the Caregiving web site at http://www.caregiving.com. To learn more about Life Alarm, please call 800-780-5433 or visit its web site at http://www.life-alarm.com. You can also e-mail lifealarm@aol.com for more information.

BOOK REVIEWS: Nursing Homes: The Family’s Journey by Peter Silin

“Nursing Homes: The Family’s Journey” by Peter Silin. This book is tightly focused on the process that families go through when they make decisions about placing a loved one in a facility. This is both a very humanistic book and a very practical one (my favorite combination!). It serves as a guide through the decision-making process, offering assistance on the numerous issues associated with deciding about long-term care. This is a book written with the insight of a sociologist and geriatric care manager, someone who sees the human side of the equation first. On the practical side, the author shares with you the ins and outs of moving into a facility and making life there the best possible. Here you see his years of experience shine through in a reassuring way. Peter is one of ElderCare Online’s community activists and Forum moderators.

You can purchse the book on Amazon.com at http://www.amazon.com/exec/obidos/ASIN/0801866251/eldercareonlinet/102-3830044-7747341,  or browse through other nursing home-related books in the ElderCare Bookstore at http://www.ec-online.net/Connections/bookstore.htm.

PRISM CARE CARD: Healthcare Discount Program Launched

The recent article, “Tips on… Saving Money on Prescription Drugs” stimulated a lot of thought and research on my part. In the course of preparing the article, I conducted some research on Healthcare Discount Benefit Cards. I interviewed the company that administers one of the largest programs in the country. One thing led to another, and I agreed to provide their compelling program directly to our membership.

In partnership with Advantage Benefits and Amerikind, we are making available a custom version of their popular discount program with caregivers and seniors in mind. We have created the “Prism Care Card” that provides substantial discounts on pharmacy, vision care, hearing aids, and other healthcare services. Our Prism PLUS Senior Care Card offers discounted access to long-term care services such as respite and adult day care. These are products and services that Medicare does not pay for (and probably won’t pay for anytime soon).

We wouldn’t need this kind of discount program if Medicare paid for hearing aids, drugs, respite and other necessary eldercare services. Don’t wait for Congress to get off of it’s duff and pass the required legislation. For very modest monthly fees of as low as $9.95, you can get the prescription drug discounts and more. If you pay more than $75 per month on prescription drugs, then the low monthly fee may more than make up for the savings that you will receive.

When talking with Advantage, I was struck by their efforts to NOT overstate the potential savings and to give reasonable expectations on the types of savings that caregivers would actually realize. My first interest was the very real savings that caregivers could get just when using the card for discounts on prescription drugs. I asked Advantage to run a series of scenarios for drugs commonly bought by our membership. The savings averaged about 13% on drugs such as Aricept, Reminyl, Haldol, Ambien, Prozac, and Wellbutrin. And these savings extend to all family members, not just the person paying for the card.

Now you may see other programs that promise “Savings of 60%” or more. That’s hype, pure and simple. I have researched specific drugs and even 13% is a decent savings. I have prepared a worksheet that you can use to conduct your own research on drugs costs. Just contact local pharmacies and then call Advantage and you will be able to see the savings for yourself. I even researched pharmacies in my neighborhood, and the closest ones to my house participated in the program.

The cost-saving program extends beyond just prescription drugs. We also work with Advantage to provide access to eldercare services such as free telephone access to a Service Director who can answer questions that you may have about eldercare assistance and long term care issues. Referrals may be given to agencies in your local area who can provide even more comprehensive assistance. Members are eligible to participate in the Long Term Care Network that offers discounted services through a wide variety of long term care providers such as nursing homes, home care agencies, hospice, durable medical equipment and homemaker services.

I invite you to review the Prism Care Card in our secure online store. We have detailed information on the specific benefits available with each program. You can also download the Cost Comparison Worksheet as well. For a limited time, we will be providing free of charge a copy of our Learning Resource Guide “Managing Medicines Safely” to all new Prism Care Card members ($6.95 value). Please visit our online store at http://www.store.yahoo.com/eldercareonline. If you have specific questions or prefer not to shop online, you may contact our partner Advantage Benefits directly at (800) 544-9505. Just make sure that you are calling about the Prism Care Card from ElderCare Online to ensure that you get the special caregiver discount program.

FEATURE ARTICLE: Tips On… Successful “Parentcaring” by Edyth Ann Knox

Now I can hear each and every one of you say "What the heck is Parentcaring?" Let me explain: When our parents gave birth to us and raised us they exercised "Good Parenting" in the best ways they knew based on their upbringing and their situations as adults. When we grew up and married, we too (or at least many of us) had children and also became concerned with "Good Parenting."

The parental role they played changed over time. When we got older, we no longer had to call our parents to tell them we would be getting home late. We did not have to ask permission to change jobs, to become parents, or for any of the other minor or major decisions in our lives. Yet they remained our parents and we still made efforts to honor their wishes. We rewarded them with the role of "Grandparenting.”

For many of us, our parents have aged and are now in need of our assistance. Many have made the comment that "We now become our parent’s parent." Yet this statement is not really accurate. We are still the children and they are still the parents – our roles have not changed but the function within our roles has changed. As “Baby Boomers” and the “Sandwich Generation” we are increasingly assuming new “parentcaring” functions. Here are some insights to help adult children of aging parents to successfully make manage some common functional transitions.

To read the complete article, click here… http://www.ec-online.net/Knowledge/Articles/parentcaringtips.html

KEEPIN’ UP WITH ALZWELL: Questions & Answers

Our latest batch of questions and answers has been uploaded to the ALZwell Caregiver Support website. Featured Questions & Answers:

- My sister took our mom to the doctor, as she was becoming forgetful. After some testing, she was told our mom has this disease. I realize she might have a problem. I'm not too sure it's Alzheimer’s, though. Has anyone had this problem? I am not in denial, but think my mom is seriously depressed, thus the lack of energy.

- My brothers and I disagree on the effects that moving my dad every 2 weeks will have on the progression of his Alzheimer's. Four families share him 2 weeks at a time.

- Does Alzheimer's go to generation to generation or does it skip a generation? My sister-in-law's mother has it and she would like information.

Visit ALZwell Caregiver Support at http://www.alzwell.com for the answers to these and many other questions, access to The Anger Wall, and caregiver stories.

RESEARCH REQUESTS: Canadian Documentary Series

Breakthrough Films, the Producers of “Little Miracles,” is producing a new documentary series for Canadian television. “The Family Dance: Tales From the Sandwich Generation” is a documentary on women who are caught in between competing responsibilities as members of the Sandwich Generation. The documentary will premiere in the Fall on the Women’s Television Network, a Canadian television channel.

Breakthrough Films is interested in talking to Canadian women doctors, lawyers, and office workers who are part of the Sandwich Generation. If you are part of this generation or know someone who might have a story to tell, please contact Amy Walton at 416-925-0111 or email to familydancer@yahoo.ca. You can also visit their website at http://www.breakthroughfilms.com.

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). Topics are suggested and NOT required. We always focus on the issues and that our members want to discuss.

September 5 (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 5 (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 6 (Thursday 7:00 to 9:00PM EST) “Healing Loss:” Host Julie Siri leads a discussion group for people who have lost a loved one to premature death, Alzheimer’s Disease, or other illness.

September 12 (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 12 (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 13 (Thursday 9:00 to 11:00PM EST) “ElderCare Answers:” Host Rich O’Boyle leads a discussion group for people caring for aging loved ones on the topic of “Quality of Life.”

September 19 (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 19 (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 20 (Thursday 7:00 to 9:00PM EST) “Healing Loss:” Host Julie Siri leads a discussion group for people who have lost a loved one to premature death, Alzheimer’s Disease, or other illness.

September 26 (Wednesday 1:00 to 2:00PM EST) “Sugarlips’ Chatroom:” Host Vicki Gardner welcomes caregivers for a social and networking discussion group on the topic of “Expressing Our Emotions.”

September 26 (Wednesday 9:00 to 11:00PM EST) “Bubblehead’s Chatroom:” Host Edyth Ann Knox leads a supportive chat group for dementia caregivers on the topic of “Caregiving for People with Dementia.”

September 27 (Thursday 9:00 to 11:00PM EST) “ElderCare Answers:” Host Rich O’Boyle leads a discussion group for people caring for aging loved ones on the topic of “Quality of Life.”

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.

You may also go to the main page of the website at http://www.ec-online.net or http://www.alzwell.com and add your e-mail address to the white box and click on the "Subscribe" button (just one click!).

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