The Ribbon - Care for Caregivers
Volume 7, Issue 8
May 4, 2003

www.TheRibbon.com(Link: http://www.theribbon.com/ )

1104A Murfreesboro Pike
PMB 114
Nashville, TN 37217-1918

Happy May!!! I'm so happy to see some real Spring weather! Flowers and trees are blooming all over. It seems the colors are very vivid this year. I'm taking way too much time stopping to smell the roses. I've come to the conclusion that I'm entitled this year as who knows what the future may bring. I've taken over mowing the front lawn. My son was doing it with the riding lawnmower but I think it looks prettier when I do it with the push mower. I cheat though, I have a self-propelled one thanks to Nanny who mowed her yard until she turned 81. I love the outdoors in the Spring and the Fall. This is MY time of year!

Next weekend is Mother's Day. I know that it will be very hard this year. I went to the cemetary last weekend to put new flowers on the graves. I got overwhelmed when I realized that this is all I will ever be able to do for Mama from now on. I cried for a bit as I was putting the flowers in the vases but then I straightened my spine and decided that I can do a lot of things for Mama.

I can make sure my grandchildren are loved and spoiled a bit. I can keep in touch with my brothers and my sister. I can rejoice when a new baby is born into the family. I can continue to help whenever and whomever as I can. I can continue to be the "Mama" that I am to my family, my siblings and families, and to my friends. What a legacy I can live for Mama. I don't think she would ask for any more.

All my brothers and my sister are going to take over my brother, Andy and his wife, Sam's house next weekend. We've all decided we did not want to be without each other on the first Mother's Day without Mama. It's all too fresh and instead of feeling blue and just having to call each other, we decided we wanted to be together. My sister and I just kind of sprang this on Andy and Sam. Sam, being the gracious sister-in-law that she is agreed. She is truly special to me.

An update on Nick is as follows, he was having some shortness of breath, feeling very tired all the time, and fluid retention. His doctor took a chest x-ray and thought his heart was enlarged. Now that scared me to death because that is a sign of Congestive Heart Failure. The doctor sent him to the hospital to have an Echocardiogram. It showed no enlargement. We now will be going to the Cardiologist on the 14th for him to schedule a chemical stress test or an arteriogram to see if there is another blockage or if the previous stent has become blocked. I think I can handle another angioplasty rather than the congestive heart failure. I sure am counting my blessings here.

Hugs,

Jamie


Get Into Their World

from alzheimers-tips.com

by Risa Levovsky

For many adults, the issues faced by their aging parents are still a mystery. As children, they knew their grandparents, but were often far removed from the situation. They had other priorities such as sports, music, art, and movies or even the latest fashion trends. As a result, many caregivers are baffled when they are faced with the challenge of caring for their aging parents.

Recently, I spoke to caregivers at a support group. A participant asked me a very important question. How do I help my aging parents remain in their home? They refuse to move and I cannot force them.

Pride, fear of the unknown, loss of independence, and impaired judgment due to memory loss are some of the reasons for their resistance. As people age, many are too proud to admit that need help to remain at home independently. Although they face many challenges, they are afraid to make changes in their lives.

Asking for your help may symbolize a loss of independence. People with memory loss experience impaired judgment and lack safety awareness. As a result, they cannot identify dangerous situations.

Conduct a simple home safety evaluation. Walk through the house with the more receptive parent. Gently, point out the hazards you see, explain the dangers and offer simple solutions. Provide reassurance that your efforts are designed to enable them to remain living independently in there home.

See how Risa Levovsky can teach you how to become a successful caregiver.


www.alzheimers-tips.com(Link: http://www.alzheimers-tips.com/ )

Risa Levovsky - After ten years of research on the front lines, I have developed a simple program that teaches both caregivers and professionals exactly how to provide quality care to individuals with Alzheimer's disease and other forms of memory loss. I am not new to this cause. My research was discussed on ABCNews.com in an article entitled 'One Caregiver's Struggle with Alzheimer's disease. I also wrote a column entitled 'The Caregiver's Corner, for Southern Lifestyles Magazine. for ten years, I worked on the front lines. My most recent position was The Center Manager at the award winning Weinstein Center For adult Day Services in Dunwoody Georgia. Now I devote 100% of my time to promoting my first book and to fundraising for caregivers. In an effort to raise funds for caregivers, I donate 50% of the proceeds to any organization that promotes my new book entitled 'Alzheimer's Tips Revealed: Successful Caregiving in the 21st Century'. Visit the author's web site at www.alzheimers-tips.com(Link: http://www.alzheimers-tips.com/ ).

Copyright Notice: It is illegal to reprint articles, in any format (including emails, web sites, etc.), without explicit written permission from the author of this article.


Gathering of Friends '03

It's Time! The official date will be the weekend of October 10, 11, 12. That again will be Columbus Day weekend. Most people will arrive on Friday Oct 10 and will leave on Monday Oct 13. Start discussing this now with family and friends. Give your replacement caregiver plenty of notice and start making your plans. Soon we will be asking you to send an email letting us know if you are interested so we will have an idea of how many will be attending in order to get hotel rates.

We will again be attending the Middle Tennessee Chapter of the Alzheimer's Association Memory Walk. Start thinking of who you want to ask to sponsor you. Two years ago our group, Jane's Angels raised $3000. This was from those of us who walked and had sponsors and from many of our readers who couldn't attend but sent in contributions. This year we would really like to beat that amount! Paula Hathaway with the Association says that they hope to have a link on their website where people can donate to the Jane's Angels team as well as any other team that is walking.

Do you want to see pictures of the previous GOF's? Click here for our GoF 2001 photo album!(Link: http://www.theribbon.com/gof/ ) There's even a countdown clock! Just click on the links on the left side of the page for GOF 2001 or GOF 1999.

We have a special treat this year. We have an official mascot. She's GOFie and she will be attending some of our events.

Words cannot describe the emotions and the love you will feel when you meet someone whose words you have read in The Ribbon or whom you have talked to at <% NLTheGatheringPlace ); ?>. Maybe you have been talking to someone through email or Instant Message, what a chance to meet them in person. True friendship bonds are formed at The Gathering of Friends!

Start thinking and planning! It will be here sooner than you think!


Alzheimer's Requires a Lot of Understanding, From Both Sides of the Disease

Special Discount Price Below!

Just Love Me reveals the thoughts and emotions of a woman struggling with a life that suddenly becomes unmanageable—hospitalizations, suicide attempts, and finally with an arduous search for an accurate diagnosis. Doctors never suspected the cause of her problems to be Alzheimer's Disease — but it was the culprit. Lee's very personal, candid description of her life experiences before, approaching and during the early stages of Alzheimer's enables readers to better understand people with dementia. By getting inside the mind of the author and experiencing with her worries and frustrations that tormented her then and now, the symptoms of Alzheimer's become less enigmatic for the reader.Intended not only for those who have, or think they have Alzheimer's, Just Love Me is also essential for those who may be interacting with such a person. Alzheimer's requires a lot of understanding, from both sides of the disease.

Just Love Me: My Life Turned Upside-Down by Alzheimer's
by Jeanne Lee

6 x 9,
148 Pages - Paperback,
$15.95
ISBN 1-55753-298-2
Order via telephone, 1-800-247-6553, and receive a 20% Discount when you mention the code PUP26. This offer is good until June 30, 2003.

Editor's note: Jeanne Lee has contributed to The Ribbon on occasion and is also a member of DASNI. She is a real advocate and is a helpful friend to all.


ASA Members Invited to Test IBM Technology

Web Adaptation Makes the Internet More Accessible for Older Adults

ASA members and the older adults they serve now can benefit from a revolutionary technology developed by IBM to make the World Wide Web accessible to many people who previously have not had the chance, including people who have visual limitations that make it difficult or impossible to see a webpage or those who have motor impairments, such as tremors, that make it difficult to type or use a mouse. The product has been well-received in pilot tests by SeniorNet, which partnered with IBM in testing and adapting the technology.

As part of its involvement in this project, ASA is making the technology available to members. Agencies that serve frail or disabled elders will be given first priority in receiving the free technology and the training needed to install and use it.

Customized Features Meet Individual Needs

With the IBM Web Adaptation Technology, individuals can increase the size of the text on the web pages they access, quiet a distracting background, turn off flashing images, change the color for better contrast, adjust the keyboard to intentionally overlook typing errors, and avoid features that can make the Internet hostile territory for older adults or people with disabilities. (For a more complete description of features, visit http://www.asaging.org/ibm.)

Users can try out their preferences on any webpage they choose and can immediately see the effect of changes in text or image sizes or colors. Once they are happy with their choices, users can save their preferences so that all the webpages they visit from that point on are reformatted to be displayed as they have requested.

The technology combines unique features with useful but hard-to-find settings options from the browser software and operating system, creating a single, easy-to-use screen appropriate for even the most novice user. As breakthroughs in usability technology are made, the technology will automatically incorporate them.

If you would like to participate, please complete the interest form located at http://www.asaging.org/ibm. For more information, please contact me.

Regards,

Valerie Jones
Project Coordinator
American Society on Aging
(415) 974-9602
vjones@asaging.org (vjones@asaging.org)


Clinical Trial

From CAREVOICE@aol.com (Brenda Avadian)

Do you or someone you know have moderate to severe Alzheimer's disease? If so, you or your loved one may be eligible to participate in a clinical trial that could play an important role in providing a more effective treatment option.

A clinical trial is now testing the safety and efficacy of an investigational drug called neramexane. This trial will investigate whether neramexane can help improve patients' abilities to understand and retain information and perform daily tasks.

Potential participants must be 50 years of age or older and cannot be on a cholinesterase inhibitor. Participants currently on these medications, but wishing to seek an alternative treatment, may be eligible. Participants also must have a knowledgeable and reliable caregiver who will accompany the patient to all clinical visits during the study period. To learn more about this study, call 1-800-59-STUDY.

Les Plooster
Program Associate
National Alliance for Caregiving
4720 Montgomery Lane, Suite 642
Bethesda, MD 20814
301.718.8444
301.652.7711 (fax)
http://www.caregiving.org/


Pharmaceutical Industry Launches HelpingPatients.org

New Database Will Help Needy Patients Get Free Medicines

Washington, DC - A new online database will help patients without prescription drug coverage access user friendly information about more than 1,400 medicines offered free through patient assistance programs sponsored by the pharmaceutical industry and others, the Pharmaceutical Research and Manufacturers of America (PhRMA) announced today. People who need help in obtaining medicines can log on to http://www.helpingpatients.org/, fill out an online form and receive a list of programs for which they may qualify. "The pharmaceutical industry has a long practice of providing prescription medicines free of charge to patients who might not be able to afford them. In 2002 alone, our companies have helped more than five million patients get the medicines they need," said PhRMA President Alan F. Holmer. "We are also committed to a long-term solution to ensure seniors and the disabled have access to the medicines they need. That's why we strongly support meaningful prescription drug coverage under Medicare." "Medicare beneficiaries without drug coverage fill fewer prescriptions which not only hurt patients but ends up costing the health care system more in the long run," stated Holmer. "Seniors need and deserve high-quality prescription drug coverage," said Holmer. "To fill the need until Congress enacts this coverage — and to take care of the millions of younger people who lack prescription drug insurance — the pharmaceutical industry is putting out the welcome mat for its long-standing patient assistance programs. Helpingpatients.org streamlines the process of finding out about and applying for this assistance. We believe the new website will enable more patients to take advantage of these programs." The Pharmaceutical Research and Manufacturers of America (PhRMA) represents the country's leading research-based pharmaceutical and biotechnology companies, which are devoted to inventing medicines that allow patients to live longer, healthier, and more productive lives. The industry invested an estimated $32 billion in 2002 in discovering and developing new medicines. PhRMA companies are leading the way in the search for new cures.


From the Recipe Corner

It's taken a long time to have this computer back and working. I appreciate the your patience and concern.

Have been watching the food channel, and found a show, which I think is wonderful. "30 Minute Meals". It will add that much more to your list of menu's that are fast without giving up good taste.

Please remember we are still looking for recipes, kitchen tips, and gift ideas. Send them to Micki@theribbon.com (Micki@theribbon.com).

Look for the new recipe Chicken Piccata now on Recipe Corner(Link: http://www.theribbon.com/recipes/ ) Site.

Micki, Food Editor
TheRibbon.com(Link: http://www.theribbon.com/ )


Links

Gero-Resources now has a website. There are great articles there written by our monthly contributor Mary C. Fridley, RN BC. Check it out!

http://www.Gero-Resources.com(Link: http://www.theribbon.com/ )


Email Bag

From RdHdSan@aol.com (Copper)

As you know, I lost my husband on March 24, 2003, from Alzheimer and other medical conditions. We became aware of the AZ about seven years ago and it progressed very slowly. The last year was most trying with his being more feeble, less control of his bowels, walking with a walker became much more difficult so I used the wheel chair when we left our home. Every morning started with his needs and ended with his needs. The one blessing that made it possible for me to keep him at home the whole time was that he would go to bed about 6:30p.m. and not get up until about 8:00a.m. I would go out with friends for a movie or dinner, knowing that he would be asleep. Only twice during the last year did he get up and luckily, nothing happened. I knew when I went out that I could come home to a disaster but I also knew if I did not get out some, I would have no choice but to put him in a home. Please do not feel guilty about stealing time for yourself if you are going to make it through this dreadful disease. I now know he is at peace and yes, I am too.

I just want all of you to know that I truly understand what you are going through and my thoughts are with you. I miss my husband very much but like you have heard before, I really lost him several years ago. I am enjoying life, traveling and doing so many things that I never had time for. If any of you have any questions or concerns that I might help you with, please e-mail me any time. Prayers for each of you caretakers it is the hardest job in the world.

Copper
RdHdSan@aol.com


From Mvictoria82@aol.com (Vicky)

my mother is driving me nuts with her lying.
tried to get some help here but so far nothing.

really need a friend to just talk to her. she is 91 years old. i need to go to my house for my mail. but how can i get someone to sit with her so i can go is a mystery to me. also is getting food in this house. i have to leave her alone so i can even go to the store.

guess i am not the only one with this problem. i got no brothers or sisters. and my children live in california. no help there. i am in penna.

i called the alzhimer's, they sent me to visiting nurse. at least she got me a doctor to come to the house. for my mother. and the nurse also gave me a card for another doctor to cut her toe nails. he came to the house.

where do i find help. i do not know.

i will not shove her into a nursing home to die like (the family did to my aunt.)

do not know what to do.

vicky


Second Home

When our loved one is first diagnosed,
we feel that all of our hope is lost.
Wondering what kind of life will remain
and will our home be normal again?

Alzheimer's is a cruel disease,
taking away their mind with ease.
Soon they begin to fade away
and we must watch day after day

Feeling the need for more information,
we search the net for any explanation.
One link that comes right out of space,
takes us straight to The Gathering Place.

Once we are there, we read and browse.
That first page gives us the operating hours.
We sign up for The Ribbon newsletter.
So much info, we start feeling better.

Finally we reach The Gathering Place.
The only thing missing is seeing a face.
Everyone there is so friendly and kind.
Helping us, is foremost on their minds.

Now we know that we aren't alone,
with our new family and our second home.
Love, friendship and support to embrace.
The best medicine we've found is The Gathering Place.

Marcia Arnold


Happy Mother's Day!

Hugs and Peace,
Karen and Jamie

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