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Volume 7, Issue 17
September 7, 2003

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

Gathering of Friends

Memories

We are fast approaching our deadline for GOF '03...SEPTEMBER 10th!!!.....and I realized that there may be those of you who are still unsure about coming to Nashville this year.

This will be our third GOF since the beginning of The Ribbon. GOF was the brainchild of our dear friend, Jane Levy, AKA Alzjane198. Unfortunately, Jane passed away about 6 months before the first GOF happened.You can read about her and what she meant to those she touched in a Special Edition of The Ribbon, Memories of Nora 'Jane' Levy, AlzJane198 - TheRibbon.com.

I know it sounds a little off beat to say that you are flying or driving off to meet with a bunch of people you've never met, who have silly names on the computer. But let me tell you, having been to every one of the GOFs, it can be a truly rewarding weekend. It is a respite time for the caregiver. We have people who fly in from California, New Mexico, New York, Florida and everywhere in between. We have people who have family in the Nashville area and drive there, to meet new friends and reunite with old friends.

We try to make some entertaining plans, like the Grand Ole Opry. You may join in or not, your option. Some of us just truly enjoy being together with others who share our lot in life and truly understand what we are going through. My favorite thing to do is just "hang out"....and be together, sharing stories, getting to know each other.

Check out our Gathering of Friends site for pictures of '99 and 2001. You may bring a friend or your spouse, whoever and whatever makes it a memorable trip for you. Our main goal is to walk together for the Alzheimer's Association Memory Walk and show our support and our commitment.

So as the deadline approaches, please reconsider attending. You will come away with a warm heart and a new appreciation for your fellow caregivers.

See you in Nashville,

Karen

GoF Journal

For those of you attending the Gathering next month, here's your chance to order your very own GoF journal. This will serve as your "yearbook" for all those precious GoF memories. Inside our custom designed cover you'll find a special poem written just for the Gathering by our own Loraine (aka WilloRain). There's plenty of room for recording your thoughts and experiences as well as contact information for all your new Gathering friends. We'll have a special journal signing one evening, where you will receive the perfect gift to compliment your journal. There's more, but we'd like to keep some of this as a surprise!

Journals are being offered at our cost of $5 each. You do not need to pay until GoF weekend, however, journals must be ordered NOW so our cut off date will be September 10 also, so please take time to reserve yours now.

Send an email to Journals@theribbon.com to reserve your GOF Journal!

Memory Walk Donations

For Ribbon members who are not attending GoF: we'll miss you! But there is something you can do now to help. While in Nashville, our Ribbon team will be participating in an Alzheimer's memory walk. Our goal is to help raise as many donations as possible for the Alzheimer's Association. We believe there is strength in numbers, and with our membership now over 700 strong, we hope to really make a difference. Think what it would mean if each member would donate just $1. Wow, that would be a tremendous help! If you can send a little more, great, and if you can't send anything just now, we understand. We're asking you to do whatever you can so that we can all help in finding a cure. Should you wish to donate, you may click on the Jane's Angels secure website and make a donation with a credit card or you may send a check, made payable to The Alzheimer's Association to:

The Ribbon
1104A Murfreesboro Pike
PMB 114
Nashville, TN 37217

My View

Caregivers could use a break now and then

By JACCI D. REED
8/26/2003

I once believed caregiving mainly provided for the physical needs of other people. It meant helping them dress, clean or eat and making sure they were kept in a safe environment. What more could there be? When my husband was diagnosed with Alzheimer's three years ago, I accepted the role of caregiver willingly, knowing the physical demands it would entail. But I never anticipated the emotional impact it would have on me.

The physical part of being a caregiver is, in many ways, the easiest. Physical tasks are routine, and once they have been completed, they are over. It is the emotional side of care-giving that is the hardest.

Those who look after loved ones stricken with a disease quickly learn that the illness is one that, in many ways, is shared. We find ourselves trying to live two lives. We become their eyes, their ears, their memory. We learn to release our loved one from "our world," and we find a place in theirs.

Caregivers learn we are no longer part of our wards' past and cannot be part of their future. We are only their present. That we live in their moment for the moment is all we know for certain.

Caregivers are the ones who handle the difficult decisions. The day the driver's license has to be taken away. The day the contents of the wallet are replaced with monopoly money and "pretend" charge cards. The day when wills are revised and health proxies and power of attorney papers are initiated.

Caregivers learn to accept who their loved one is becoming and allow him to be who he needs to be. If he "needs" to wear a winter knit hat in the middle of July while watching TV, we let him. Is it normal? Perhaps it's not what normal once was to us, but there is a new normality in our life, and this is part of it.

What's normal now is hearing the same conversation 20 times and listening to it every time as if it were the first. Normal is allowing ourselves to be the person our loved one sees us to be at that moment.

Normal is appreciating the simple moments of holding my husband's hand, hearing his laugh, watching him sleep.

Caregiving is understanding we will not have the future we planned. But we have the present, and we must embrace it. As caregivers, we must learn to say goodbye to a little bit more of our loved one every night, and hello to a little bit more of Alzheimer's every morning.

Alzheimer's affects approximately 4 million people in our country. It is estimated that within the next 20 years, that number will grow to more than 14 million. More than 65 percent of those diagnosed are at home and cared for by spouses and family. With those statistics, it is almost impossible not to know a caregiver.

I knew people in my life who were caregivers. I just never knew what they did, how they lived and what they sacrificed.

I don't have the political clout to initiate a National Alzheimer's Caregivers Day. But wouldn't it be nice if people who knew someone who took care of an Alzheimer's patient would offer to step in for the caregivers for a few hours one day? Let them take a walk, breathe the fresh air, go to a movie or drive a country road to escape the heaviness of the load they live 24 hours a day, seven days a week. If you know a caregiver, consider this opportunity. It will be your way of acknowledging your appreciation for them.

From GrammaJ50@aol.com

Sixteen Hours

Aloha Everyone! I apologize for not having anything in the last issue about my fun of meeting Jeanne L. Lee, author of Just Love Me, My Life Turned Upside-Down by Alzheimer's (Jeanne's personal story about her journey through Alzheimer's). However, it did not dawn on me, that our meeting would be taking place on the day that issue was to be published! I really don't know where to start. It was an amazing time that made a huge impact.

When Jamie first sent the email to me about Jeanne, I honestly didn't give it much thought. Thank goodness Jamie was persistent, so much so, Jamie sent her copy of the book for me to read. That worked; I got inspired and went to work promoting the book event with the local media and Alzheimer's Association here in Sacramento.

On August 10th, a little tropical delight, Jeanne (she's just a little thing from Hawaii) and her sister, Carolyn, came to Sacramento. Their total time with me would be less than 16 hours. I was so blown away by the both of them! From the moment I saw Jeanne at the door of Tower Books, I could tell this was going to be special. After big hugs were exchanged, we met the store manager (a prince of a guy who even provided snacks for us) and got right down to business.

After designing a couple of table signs for Jeanne (I commandeered the store manager's computer), it was time for the event. The faces of the folks Jeanne spoke with showed much surprise when she proclaimed she had Alzheimer's. They had no clue until then. One person she spoke with was not looking for anything regarding Alzheimer's. However, by the time they were finished speaking, the lady walked away with a wealth of information and a personally inscribed book in her hand.

As I sat back and watched all of this unfold, it became apparent that Jeanne's message of patient advocacy was so important. The lady who walked away with a book that day, had no intention of discussing how she was experiencing lapses of memory. Doctors, try as they don't sometimes, cannot relate; they simply don't have that kind of time to spend with patients; unless...one of their loved ones had been diagnosed. We, as caregivers, can empathize, but we truly do not know what it is like to be so scared that we don't know where to turn or what to do because the memories we hold dear are slipping away. Maybe, at points in time, we might get a little shook as we walk out of the store and can't find our car. After a brief search, all is forgotten (no pun is intended) and the fear subsides. But because one person diagnosed with Alzheimer's (who has experienced being afraid because those "Kodak moments" are slipping away) took the time to really talk to someone, that person went away feeling like she was not in it alone...someone going through it understood.

The rest of our evening was spent enjoying each other's company. We munched on great ribs at Tony Roma's. There were many hugs exchanged. We also managed to fit in some time to view pictures of the day's fun (digital photography is so cool) and my personal photography and Pepsi collections. And, of course, I had a great time spoiling my two guests rotten. As I drifted off to sleep that night, there was a huge grin on my face as the events from the day replayed in my mind.

After a stay that was all too brief, my guests were up the next morning before the sun, ready to boogie on down the road by 5:30. There were more hugs and, you know me, some tears. As the car backed out of the driveway, I stood there waving to them. I watched the car as it disappeared around the corner. I stood there in the driveway, amazed, with a huge grin on my face. I couldn't help but wonder what unsuspecting person would be touched by my new friend's gentleness, compassion, laughter, spirit, and yes, her eagerness to share her Alzheimer's journey.

Aloha!

Linda@theribbon.com

I could fill your next newsletter with the friendship Linda and I have gained. I thought Hawaiian Hospitality was only done in Hawaii. Well, I was wrong. Linda from the time she set out to help me has been a jewel and overwhelming book of knowledge and love. She began by spreading the word from newspapers to friends. had the book signing ready for us to walk into and proceed. She even helped me with the wording to better the site by having another sign added to the site. Even her can has a sign about me. She and her cousin Pat welcomed us in her home. It was filled with signs of every description making me feel so proud and even one for my dreams. #1 book New York Times. It was funny but she put hours and days into our arrival. Then she spoiled us every minute we were there. She organized my thoughts and plans before I thought of them. No wonder she is a big part of your wonderful organization. She is the type that makes the world a better place to grow and love. AND HER HUGS FEEL GOOD FROM MY HAIR TO MY TOE NAILS. Thank you somebody for putting her in my journey.

Aloha
Jeanne L. Lee

Couple in Love

We have walked a road
we did not choose
our pathway is not clear,

The way is filled
with darkness
and Our destination......Fear.

We've been traveling now
for many years
We're going side by side.

Some days are
filled with sunshine,
some days I want to hide.

It's so hard for me
to watch you die
a little more each day.

But harder still,
I guess, for you---
you don't want to be this way.

I knew you in
a better place
and that's when you knew me.

When our love was young,
before you changed,
and you lost your memory.

But you're still here
and yet, you're gone
in oh so many ways.

If only we
could go back to
those happy, carefree days.

We're walking a road
that's uncertain---
but nothing is "for sure"

I only pray
there will come a day
when there will be a cure.

But until then
I'll run the race
and hold you til the end.

Because I loved you
then and now
and I always will, my friend.

Happy Trails..............Cindy T

From Cyt46@aol.com

Email Bag

From Ellenbabe1@aol.com

Hello To All,

It is hard to believe that it is a little over six months already since I sadly informed you all of the sudden death of my beloved mom, Mary. Although time is certainly flying, the pain from the devastating loss certainly has not begun to lessen any.

You all remain in my thoughts and prayers and I enjoy reading each and every issue. My heart goes out to all those who have suffered losses such as mine.

To help ease the pain, I have begun work on a memorial tribute website to my mom, and it would mean so much to me if you would be so kind as to publish the website URL so that others may visit the site. I am not seeking any glory for what I created...I am seeking to keep the memory of this beautiful woman alive. It will be an ongoing project...an endless labor of love.

Thank you and God bless you all.

Mom's website can be found at: http://www.marysdaughterellen.bravehost.com/

Love and Blessings To All,
Ellen

From Build101@aol.com

Good Morning: Question? How do you really know when it is time for placement? My husband was diagnosed with Dementia in late 1999. We have been evaluated each December and he has severe short term memory loss and now confusion with any details, and even mixed up long term memories. He is in the "stubborn" stage and I have been warned by a social worker that "aggression" is the next stage. He is very ill with other things and now will not cooperate with me in his care. He refuses and argues and has started to yell when I try to do the necessary things. I am confused - do I get placement now and HOW??? I am worn out with work and worry.

Thank You - E.Levine

Responses to Donation Letter

We are thrilled that so many have responded with either a donation or to let us know they are participating in their local Memory Walks. Either way, it is continuing to be paid forward and programs to help us will continue to be made possible through these efforts. Way to Go Gang!!!!

From LinBedell@aol.com

I love you all..But! I am an Activity Associate in Colorado Springs and I'm funding our Team Namaste' Spirit at Centura Senior Services. I had a personal goal for myself as a Team Captain and haven't reached that goal yet! I will keep praying we all meet our dollar amount and be very blessed for what we collect.

Linda
In Colorado Springs

From Hevnsangels3@comcast.net

I always look forward to reading the Ribbon each month. My Mother-in-Law is now in Assisted Living but, I see her at least twice a week and care for her personal supplies etc. She has really advanced since she was placed in the facility. We cherish each and every moment we are with her for special occasions etc. Thank you so very much for enlightning me with all the knowledge you research. I never new the extent of the disease until my Mother-in-Law was diagnosed with Alzheimers. Found your site and have been blessed ever since.

We donate to our local Alzheimers Asociation several times a year and of course
to the yearly walks.

Thank you again for bringing the education of this disease to so many people. I
have tried to spread the word about this site.

Love in Christ,

Julie

From JRNYWMN@aol.com

oh gees you guys....what a way to make us feel crummy (lol). No, really, you can't imagine how much we'd love to come. We just have a problem with the "paid caregiver" thing--trust, you know. We've had several recent disappointments, and are back to some REAL SCRUTINY.

A check will be forthcoming--love to do it. You guys have a great time! Ann, Janalee and Mom

From caring@arkansas.net

I'm on the walk committee in my area, and donate and walk here in NWArkansas. We will be thinking of you folks on your walk also. Sara Tepfer Fayetteville, AR

From bettyp@a-znet.com

KAREN, I DONATED WHAT I COULD TO JANES ANGELS TONIGHT. I ALSO DONATED TO LINDA PERSONALLY WHEN SHE EMAILED A WHILE BACK TO HER WEB PAGE. I SURE WISH I COULD GO. SURE WOULD LIKE TO GO TO THE GRAND OLE OPRY, IF IT WAS THE WEEKEND BEFORE, I COULD GO BUT WE MADE PLANS TO GO TO MYRTLE BEACH THIS YEAR AND ARE LEAVING ON OCT. 10TH FOR A WEEK. I KNOW THIS TIME I WOULD ENJOY THE TRIP CAUSE IM STILL NOT TALKING TO MY SISTERS AND THEY WOULDNT BE BOTHERING ME THIS TIME. I ENJOYED IT SO MUCH 2 YEARS AGO IN SPITE OF EVERYTHING I WAS GOING THROUGH AT THE TIME. I HOPE YOU REACH YOUR GOAL. HAVE A BLAST!

LOVE AND HUGS,

BETTY

Hugs and Peace,

Karen and Jamie