Volume 6, Issue 6 - The Ribbon Newsletter

Volume 6, Issue 6
March 24, 2002

www.TheRibbon.com
1104A Murfreesboro Pike
PMB 114
Nashville, TN 37217-1918

Another Milestone

This past week The Ribbon passed another milestone....22,000 hits on our web site.....www.theribbon.com. In just a little over 4 years, that many people have viewed the web site, contributed articles and e-mails about themselves, their loved ones and their struggles with caregiving. Our subscribers to The Ribbon has grown to almost 400.

When you read your newly sent copy of The Ribbon, think of the other caregivers who are also sitting in front of their computers, reading the same thing. It's a large community. You are not alone.

We hope you will continue to visit the web site, continue to write sweet, touching and informative articles, visit the Book Store, come to the chat room.... The Gathering Place ...and be a part of The Ribbon Family.

YOU are The Ribbon!

From the Archives

As caregivers, we often get caught up in the day to day care of our loved ones, forgetting that our own well-being is critical. It is important to our loved one that we do this responsibly because if we fail ourselves, in turn we fail our loved one. A caregiver who is stressed to the limit, worn out, and perhaps even ill, cannot do an effective job.

We need to remember that caregivers have rights too. Take these rights to heart....heed them...and be responsible to yourself.

Caregiver's Bill of Rights

I have the right...

To take care of myself. This is not an act of selfishness. It will give me the capability of taking better care of my relative.

To seek help from others even though my relatives may object. I recognize the limits of my own endurance and strength.

To maintain facets of my own life that do not include the person I care for, just as I would if he or she were healthy. I know that I do everything that I reasonably can for this person, and I have the right to do some things just for myself.

To get angry, be depressed, and express other difficult feelings occasionally.

To reject any attempts by my relative (either conscious or unconscious) to manipulate me through guilt, and / or depression.

To receive consideration, affection, forgiveness, and acceptance for what I do from my loved one for as long as I offer these qualities in return.

To take pride in what I am accomplishing and to applaud the courage it has sometimes taken to meet the needs of my relative.

To protect my individuality and my right to make a life for myself that will sustain me in the time when my relative no longer needs my full-time help.

To expect and demand that as new strides are made in finding resources to aid physically and mentally impaired persons in our country, similar strides will be made towards aiding and supporting Caregivers.

--- Author Unknown

Writing a Book About Alzheimer's
by Mary Emma Allen

"Why write about Alzheimer's?" I'm often asked. So many people want to run from the disease when a family member is stricken.

However, you can't escape it and right now can't prevent nor cure it. Yes, some family members do cut off their relationship with the person afflicted. But that person...father, mother, spouse, sister, brother...needs care and love. Even though they eventually don't know you, they have feelings and make some response to loving gestures and attention, I've discovered, after caring for my mom and my aunt.

So I began writing about this disease in order to help others cope, to let them know there is still some value to this person. I collected my essays (previously published in newspapers and magazines) into a book, "When We Become the Parent to Our Parents".

Brenda Avadian, who'd written about her father, saw some of my articles on "The Ribbon" and asked me to contribute to her book, "Finding the Joy in Alzheimer's," in which caregivers share the more positive experiences. Published by North Star Books, the profits from this book are donated to aid Alzheimer's research, in hopes we will find a cure or prevention.

This print book was released in September 2001. Throughout it, you can find encouragement and comfort for the experience you and your loved one are going through. You learn to laugh with them, comfort them, and bring joy to them in a world that may be different from the one you would have wished for, but is one you can't ignore.

My wish is that you'll find understanding and comfort by reading these books.

(Mary Emma Allen writes for children as well as adults and speaks to groups about Alzheimer's. She also writes newspaper and online columns, including "Country Kitchen," and "Vagabond Traveler." Visit her web site at: http://homepage.fcgnetworks.net/jetent/mea; e-mail: me.allen@juno.com)

Community News
Conference and Book Signing

For those of you interested, April 4-7, 2002, at the Adam's Mark Hotel, Denver Colorado, the 2002 Joint Conference of The National Council on Aging and the American Society on Aging will be holding a 4-day conference. (2002 NCOA-ASA Joint Conference or http://www.agingconference.org/). Our very own CAREVOICE, Brenda Avadian, author of "Where's My Shoes?" My Father's Walk Through Alzheimer's and Finding the Joy in Alzheimer's: Caregivers Share the JOYFUL Times, and PHOTOLJT - Linda from The Gathering Place, will be in attendance.

In addition, CAREVOICE and PHOTOLJT will be doing two presentations and book signings while in Denver. The events will be on Saturday, April 6 from 3:00 until 4:30 at Barnes and Noble, 8136 W. Bowles Avenue in Littleton, 303-948-9565, and from 6-8 p.m. at Full Moon Books and Coffees, 9108 W. 6th Avenue, Lakewood 303-233-6666.

For those of you who are in the Denver area; please try to make time in your busy day to attend one of these events. CAREVOICE is a dynamic speaker! If any of you have had a chance to speak with either of these two ladies online, it will be a wonderful opportunity to finally be able to put a face to the name and get a live hug! Don't be bashful either! They aren't!

Public Policy Forum

I wanted to write and let all of you know about the upcoming Public Policy Forum that will be held in Washington DC April 27th - 30th. It has become an annual event to meet and let our Congress know the importance of their continued funding for research for dementia through personal testimonials by carepartners and PWiDs.

This year Morris Friedell and I have been asked, because of our affiliation with DASN International to be part of the conference, to speak and giving workshops on advocacy. This may a great opportunity for us to meet some of you who will be attending the conference. If you do plan on attending, or will be in the DC area at that time, please contact me so that we can arrange to meet -- I look forward to the opportunity to meet my cyber-friends in person.

JanMina.com
* click on either link to visit *
DASN: Dementia Advocacy and Support Network International

In Passing: Those We Must Remember

From wolfsprg@zianet.com

I know it's been a long time since I wrote to you and Karen, hope you remember me. This is Roberta in New Mexico, and you guys helped me through some really rough times with my Grandmother. I just wanted to let you know that she passed February 22. She is no longer in pain and is with my Grandfather, where she has wanted to be ever since we took her in four years ago.

I still read the Ribbon when I get it and if I can ever be of any help to other caregivers, I'd be happy to do whatever I can.

All My Love,
Roberta

From Lynsjag
Dated 3-11-02

Hi there. Just a note to say thank you for the several years of Ribbons we have been receiving. My mother in law was a dimentia patient for the last 6 years, and we have found your newsletter to be so very helpful. We can not express our appreciation adequately. Though we have never posted, we have felt such a bond with the posters, and have prayed for their strength and peace.

Helen passed away last week, so we will no longer need to receive your newsletter, but please know that we will still keep you and everyone in our prayers. Again, thank you so much for helping to make our lives easier, and for helping us to make Helen's life more bearable and enjoyable.

Sincerely, Lynda & Charlie

From PatMackie

Just a note after I wrote you last, my mother Virginia McIntyre passed away on March 16th. Thank you again for your newsletter and all the support it has brought my family, as many have said, it's difficult to express just how much it helped

From JRNYWMN

I'm so sorry that you brought up the statistic of caregiver death....my 52-yr-old brother died March 4, 2002 of full cardiac arrest. He always supported Janalee and I in caring for Mom, yet he did it with his wife for the 2 years before us and never complained (except that he had to drive so far--you know California).

Editor's note: There is more to this letter in the EMAIL BAG.

Links

These are on AOL only

AOL News: Cholesterol May Be Linked to Alzheimer's

AOL News: Blood Test May Identify Alzheimer's

AOL News: Boomer Demands Reshape Adult Care Market

New Trial

Prevention of Alzheimer's Disease by Vitamin E and Selenium

OFFICIAL TITLE
Prevention of Alzheimer's Disease by Vitamin
E and Selenium

SPONORING AGENCY:
National Institute on Aging
National Cancer Institute

PRINCIPAL INVESTIGATOR
Dr William Markesbery
Dr Frederick Schmitt
Dr Richard Kryscio Sanders-Brown Center on
Aging

DRUG(S) (GENERIC NAME [BRAND NAME]):
Vitamin E
Selenium

INCLUSION CRITERIA
1. Participating in SELECT prevention study.
2. 62 years or older, or 60 years or older if African-American or Hispanic.
3. General good health with no neurological or psychiatric illness

INCLUSION SEX
Male

DESCRIPTION FOR THE PUBLIC
The Prevention of Alzheimer's Disease with Vitamin E and Selenium (PREADVISE) trial is an important addition to the Selenium and Vitamin E Cancer Prevention Trial (SELECT). As a prevention trial, PREADVISE is trying to find out if taking selenium and/or vitamin E supplements can help to prevent memory loss and dementia such as Alzheimer's disease.

TRIAL SITES:
For trial sites for the SELECT and PREADVISE trials, please visit http://www.swog.org and read the information on the SELECT study.

Email Bag

From JRNYWMN

I only want to admonish ANYONE who cares for someone better than themselves--you still have a life, and hopefully you will have one after your loved one has passed. You'll be no good for anyone if you don't pay attention and listen to your body. This type of surprise is debilitating for everyone around you, and you'll have nothing to say about what happens to your loved one.

For any of you without insurance, please do not let that stop you--he had none, but refused to ask for any help from Mom, because "that money was for Mom." Wrong! Look at the consequences, please.

Oh, we won't be telling Mom. For her, Tom will live on physically ("he just moved"); and he will live on in our hearts and minds.

Trust me, I'm pretty healthy, but next week I'm making an appointment for a routine checkup!

Love to you all,
Ann, Janalee and Mom

From Damit2

Another ribbon well done as usual

From PatMackie

Just a note to pass on -- do go see the movie "Iris". The description provided by the cinema tells the story of acclaimed British novelist Iris Murdoch and is based on memoirs by her husband, John Bayley. Murdoch's battle with Alzheimer's disease, Bayley's attempts to care for her, and flashbacks of their courtship and early life together comprise the story.

It hit so close to home as you watch first the denial, the fear, the anger, the condition of their home as it deteriorated with the disease. Incredible movie!

Let me also add a thank you for The Ribbon, I am one of the ones who has received it for many years, but repeats are always worth reading. I think I started when Mother was bouncing between a level 5 and 6, now at 85 she is at a definate level 7 where there is no quality of life. As I received each issue of The Ribbon I would print them and read to my Dad who would not consider a support group, but was consoled by hearing about others who experienced much the same experiences he did from their spouses. In the end, The Ribbon became his support group as I suspect he reread them over again. In the last year Dad (age 90) finally consented to placement for her at a skilled nursing facility. Thank you as always for being here and offering other choices for those that can't reach out to the traditional support groups.

Editor's Note: "Iris" will be available soon on VHS and DVD.

Happy Easter to All

Peace and Hugs,
Jamie and Karen