Volume 5, Issue 21 - The Ribbon Newsletter

Volume 5, Issue 21
October 14, 2001

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

This issue will be a bit short and sweet. My grandmother has now been moved into my home and we are adjusting. This comes after she started a grease fire Thursday evening in her house. Luckily she wasn't hurt and the house wasn't hurt, just a load of smoke to clear out. The monitor between houses worked fine but now it's time for her to have the 24/7 attention.

We knew the time was coming and I had said I wanted to wait until after GOF to do this. The fire let me know that there was no more delay. I am truly grateful that I was able to have my "respite weekend" with all my caregiving friends before the move. I am much more relaxed and I'm able to deal with the problems that are arising.

This issue will be about the "Gathering of Friends" and what it all meant to us. We hope that someday each and every one of you will be able to attend a Gathering.

Jamie

Gathering of Friends
A Huge Success!!!

The weather in Nashville on Friday, October 5th, was not the best. Some flights were delayed because of it but the rain could not dampen the spirits of those arriving for the Second GOF. We put our fears behind us and boarded flights that day. Air traffic and airport security was dealt with and for good reason...we had to go to Nashville!

And once again, we would not trade the experience for anything. We had some new faces, and some familiar ones. There were some surprises...the lady at the phone booth at the airport turned out to be our dear Tracy1952, who flew from Spokane, to surprise Photoljt...and a surprise it was!

The Ribbon Staff ( Karen, Jamie, Linda & Kevin) met for the first time...pictures to follow soon. We are about to begin the 4th year of The Ribbon and this was a thrill for all of us.

On a crisp, fall morning, Saturday, we loaded up and headed to Greer Stadium for the Memory Walk for the Alzheimer's Association. We all had our "Jane's Angels" shirts, banners on the cars....thank you Linda, Teen and Jamie for driving. I must say it was a well organized and well attended Walk. We did 26 laps around the stadium. Thanks to James and Neal for carrying our banner, they were real troopers! To our surprise, we lead the walk....what an honor! In all, over $100,000 was raised that day. We thank all of you who contributed....Jane's Angels donated over $3,000.

Jamie and her family hosted a bar-b-q on Saturday night. Thank you, Nick...you are one awesome chef! Everyone feasted!

As is becoming a tradition...in Jamie's backyard, we released teal balloons...and one purple one, for Jane. This Gathering was Jane's dream and she didn't see it happen but she was with us. For those of you who did not have the privilege of knowing Jane, go to The Ribbon web site, click on "Reading Room", and there you'll find access to a special edition of The Ribbon about Jane, the Caregivers' Caregiver. She was, and will always be, our Special Angel.

Sunday we had a delightful brunch at the OpreyLand Hotel. We spent the day strolling thru the lovely gardens there, taking pictures, talking, and laughing. So much laughter....it was wonderful.

Sunday evening, the first to depart...Kevin and his family...had to say good-bye. That was tough. The time went so fast. After meeting Debbie & Danny we understand why Kevin is the giving, caring young man that he is....great people!

Those are the facts. What I find so hard to describe is the feeling of love that we all shared. So many people think that the Internet is a bad thing but for us, it has been the doorway to an extended family. People from California, Maryland, Texas....so many far off places that we may never see....but this plastic box and it's connection enable us to reach out and become friends, life lines...we are so blessed.

In the weeks to come we will be sharing photos from the GOF. You will be able to put faces to the silly names, and hopefully, share some of the fun we had in Nashville. There will also be some new and exciting additions to The Ribbon web site. We'll keep you informed as they develop.

It was unanimously decided that we will be having a GOF every other year. This time next year, we will begin to plan for GOF'03...to be held ??? Suggestions??? We'd like to hear from you on that. One suggestion was Branson, MO. A fun place, central location...a possibility, for sure.

Words seem so inadequate to describe the feelings we all returned home with. We have all been affected by a terrible tragedy in our lives. We all have loved ones who struggle daily with the ravages of Alzheimer's Disease and yet, because of this tragedy, we have also been so blessed to have found a medium that allows us to reach out and share, to find strength and comfort with people who understand. It is what keeps us strong.

To those who attended the GOF '01, I offer my deep and everlasting gratitude...you have all enriched my life. To those who did not attend....I look forward to meeting you in the future.

Karen

Jamie and Karen:

How can I ever begin to thank you both for coming up with the idea to do the second Gathering of Friends? My head is still spinning from all that happened this weekend. Some of us had been fortunate enough to have met before; it was great being able to reconnect with the old friends. However, it was awesome to make new and lasting bonds with new friends.

All I can say is WOW; this was truly amazing. Even though Mary and I had just spent the majority of the weekend around each other, we spent an hour on the phone Tuesday revisiting all of the fun and hearing what each different event meant to the other. Also hearing Mary's voice full of excitement gave me the proof the weekend was the "medicine" that everyone needed.

There were so many wonderful parts of the weekend; but I think the most special was the Memory Walk on Saturday morning. Even with just trying to narrow it down to the walk, there are so many wonderful stories. There were people who were participating who saw our matching shirts. They read the advertising on the back. They asked about the internet support and were fascinated to learn we had all come togetherfrom different states. We saw a young man and his friend, both 17, take time out of their weekend to support his mother and her friends, what volumes that speaks! But even more special was the Nashville Alzheimer's Association and their generous act of allowing our team, Jane's Angels, to be the lead team, dedicating the honorary lap to us. How special it was to hear the announcer explaining to the crowd about internet care giving and how we had all come from different parts of the country; I am still getting goose bumps.

But wait, maybe the thing that really brought the success of the weekend home was being in the chat room Wednesday night when a new person came in. After getting most of her information, I asked how she found the room? Her response - I saw a sign on a van! Yes! It really does work!

Thank you both again for an absolutely wonderfully warm and loving weekend! Oh and by the way, anyone seen Art? LOL!

Love Always,
Linda
PHOTOLJT
The Gathering Place
Online Alzheimer's
Caregiver Support
http://www.theribbon.com/GatherPlace/

Jamie, Karen and Linda,

Thank you for inviting me to the Gathering of Friends. I did not know what to expect. I am glad for that ....cause never would i have ever been able imagine what those 4 days did for me!!

The Love ..The Caring...The Sharing....it is so wonderful to be able to be with folks that know what you are going thru....or have been thru....say one word and you see the look in the eyes or the nod of the head....yes they have walked in my moccasins!

I think one of the best moments...and there were so many moments that are dear to my heart. But when the lady tapped me on the shoulder and said "my husband has Alzheimers...would you email me ...i have been looking for support". Then i knew why i was there....to Pay it Forward!!

This is the best thing i have ever done for me....thank you for everything!!

LOVE...HUGS...AND SNORTS!!
Mary.....tracy1952

Karen, you probably are looking for stuff we did like the walk, and surprising Linda, driving vans around the lot, the cool BBQ, or the great time of sharing and laughing fellowship in the rooms, but the following is what i keep coming back to as my impressions of GOF. hell of a lot of love...hugs teen

A Hug, A Smile, A Tear, A Laugh

hugs full of love, smiles filled with laughter,
tears of happiness and pain.

a hand held, a nod of knowing, a back patted, love shared.

victories celebrated, a step forward,freedom felt,and
troubles forgotten for a while.

all wrapped in faces to be learned, of hearts already known. surrounded with
loads of laughing, fun and love.

thornygates@hotmail.com (teen thorn)

Karen,
Thanks for everything. I'll try but I'm no writer.

The first night I got to Jamie's home while she was out taking others to their hotel. So here I sat not having met anyone who was coming. Even knowing that these were my friends there was still that feeling of what I am doing here? Then in came Jamie and Kevin and his Mom and Dad. Then here came Karen, Linda and many others. The next thing I knew I was being truly hugged. Our hugs on line help, but getting them in person was the best. Then I knew I was with family If you didn't come this year because you had never meet any of us don't let it keep you away next time. I left Nashville knowing my family had really grown.

A poor Kevin note, Friday night Kevin was about to starve, he wanted a whole pizza for himself. We ordered all of us hungry as could be. The phone rings and we are having so much fun no one answers. No answer no pizza. Poor Kevin, he is a growing boy he needed his pizza, so off to Wendy's Jamie goes. This time Kevin goes along to make sure he will get to eat. This weekend was the best thing I have done for ME in a very long time. Thank you Jamie, Karen, Linda, and Kevin. You worked so hard to make it happen.

Thanks again,
Vickie
VGrgory

Gathering of Friends

There could be no better name for a weekend than this. Even though many of us had not met "face to face"....we were FRIENDS in the truest sense of the word. We were grinning from ear to ear as we greeted one another at the airport...and we shed many tears as we bid farewell on Monday. Each and every one of us was able to take something "home" with us...maybe a physical momento of the weekend, like a tassel, but more than that was the sense that each and every one of us had been able to tap deeper into the well of friendship. A "well" that is bottomless as I have come to learn. For those of you who could not make it....you missed a grand time.....and were missed....but....we will do this again....and I truly look forward to,YES, even the tears shed on departure day. Because that is the truest measure of care....caring enough to let it show!

Fondly,
Donna a.k.a. Fly

Hi Karen,
Wow! What can I write about GOF. It was so much more than we expected. We have never felt so welcomed by so many wonderful people. How can you visit with a group of people for three days and miss them so much when you get home? We are so lucky to be a part of this "family".

My favorite quote of the weekend, though, was when Jamie was getting ready to drive us to the hotel. She just said "I'm going to take y'all to y'alls place now." Priceless!

Debbie
PampMom

To: Gathering of Friends

As the newcomer to this group of wonderful loving people I would like to THANK YOU for giving me the feeling of always belonging. Through a long friendship with Karen many of you are not strangers to me, but now I have faces to go with names. You will be embedded in my memory forever. All of you bring forth a renewed hope that love, caring and support does still exist, and somewhere, someone is out there pouring out rays of sun light to diminish the darkness.

Thank you again, it was a wonderful week-end and I appreciate all that you have given to me.
Micki -slats2@aol.com

There seems to be no words to express the emotion which I felt this past weekend in Nashville. What I noticed mostly, was the love that overflowed from every person there. There was the caring love and the sharing love, the love they showed to each other, and the love they had for the person they were caring for. This devastating disease has brought us all together to form everlasting friendships. We are all different in personality, but our hearts are bonded and have the same purposes.

I want to thank each of you for that love and friendship and for one of the most wonderful times I have had in a long time. I returned home tired, but it was a "good" tired. It wasn't the kind of tired I feel after a stressful day.

You are all special in your own way and each of you have a special place in my heart. I hope each one of you reading this get the opportunity to meet this wonderful group of people in person someday. You will return to your homes with more knowledge, hope, and love than you can ever imagine.

Thank you all.
Sharon (meemawmoe)

Hi Jamie,

thanks again for having my friend and me to your home and for all your work on setting this up.

Thanks, Copper

On behalf of the Alzheimer's Association's Board of Directors, Advisory Council, volunteers, and staff, thank you for making this year's Memory Walk so successful!

As of Saturday, over $116,000 had been raised to support the Alzheimer's Association's programs and services. Attendance totals will be forthcoming.

THANK YOU!

Paula Hathaway
Alzheimer's Association of Middle Tennessee

I am now going to include an excerpt from Jan/Mina's journal. I think she has a great suggestion included.
--Jamie

October 6, 2001
Saturday

Today I had a great day. I, along with over 6,000 others, participated in the Memory Walk for Alzheimer's Disease at the Irvine Spectrum. We walked for an Association that is "Someone to Stand By You" - it has been an honor to stand up in support of them.

Patriotism was the theme of the day evident in the display of "red, white & blue" in clothing, decorations, music and spirit. It was so wonderful to be joined by my family in support - My HUSBAND WADE (with him none of my participation would have been possible), our daughter Tina & her family, Todd, Ashton & Jake, my cousins Colette, Bob, Louise, Peter and his sons Chris & Nick (who carried the banner), Maranda, our friends Barbara and Allan. And in spirit my sponsors: my Mom & Dad, Frank & Jane Thees, Fred Poitras, Mickey Sager, Dr. Bruce Gibson

At earliest count over half a million dollars was raised just at this venue. Part of the proceeds will be donated to the New York Chapter, as their Walk had to be postponed, but not the need for support of those with dementia.

Walks are nationwide and the monies raised stay within each individual community to financially support the myriad of programs and services available for the families dealing with Alzheimer's Disease and dementias in general.

Our local Association here in Orange County is taking that one step more and reaching out to patients globally with their support of Dementia Advocacy and Support Network (DASN) Int'l. I was priviledged to be part of the Association's booth at the Walk and handed out materials specifically aimed at the early stage patient. I spoke from the stage to the crowd and thanked them for making a difference throughout the year - last year we were only taking about and hoping for a vaccine, this year we are in human test trials. The group that gathered in support of the Walk were for the most part recipients of the Alzheimer's Associations continuing services and 24/7 support, and as anxious as I to see an end to the devastation in their lives -- it is empowering to know that for just one day we can join together and make a difference that will affect our local community of over 50,000 people with dementia.

But, today I am also thinking, perhaps I should take one step further - maybe only a little step, but perhaps if others join me it will become a private march. I am going to try and remember when I am sending out my bills to add one more payment - $5.00 every month to the Alzheimer's Association. Yes, I know that is a piddly amount, but doable for me. Now, if ten others join me that will be $600. per year, 100 join me $6,000, a thousand chose to join this private march $60,000 - - a small amount a huge difference . . . I hope you'll consider joining.

From our friends at
ec-online.net

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). 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!

Our current chat schedule is posted in the ElderCare Community Center at http://www.ec-online.net/Community/communit.htm

October 17 (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 17 (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 18 (Thursday 9:00 to 11:00PM EST) "ElderCare Answers:" Host Rich O'Boyle leads a discussion on quality of life for caregivers and care recipients.

October 23 (Tuesday 9:00 to 11:00PM EST) "Parent Caring:" Host Brian Duke leads a discussion group for people caring for aging parents. New session every other Tuesday!

October 24 (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 24 (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 25 (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 31 (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 31 (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."

A major decision came forth at the GOF. The Gathering Place Support has been under The Ribbon umbrella for a while now. We were separate entities under one roof. We are proud to announce we are now one. Linda, will continue to be the Chat Coordinator, Karen and Jamie will still be co-editors of the newsletter, and Kevin continues to be Site Manager. None of that changes...we will be working on a new logo that incorporates the newsletter and the support chat.

There are other changes coming about from great minds and lots of suggestions during the loving as well as productive weekend. We have such terrific readers who always keep us on our toes with their great ideas.

We will keep you posted as things start happening! Remember to go to the website occasionally to see the changes.

www.TheRibbon.com As soon as we can get them organized and up on the site, you will see pictures of GOF 2001.

Remember as always The Gathering Place is open 24/7. It is hosted Monday thru Friday 9-11pm EST. www.TheRibbon.com/GatherPlace
You will meet some wonderful people there.

Hugs and Peace,
Karen and Jamie