Volume 5, Issue 10 - The Ribbon Newsletter

Symbolizing the way we are all woven together
in our fight against Alzheimer's Disease

Volume 5, Issue 10
May 13, 2001
www.TheRibbon.com
1104A Murfreesboro Pike PMB 114
Nashville, TN 37217-1918

Happy Mother's Day

I found this article and thought it was a lovely idea. It's a little late for Mother's Day which is a fine occasion to use it but maybe you can use it for a birthday this year.

Dear Heloise: Recently, on my 61st birthday, I gave my 92-year-old mother, Edna Melrose, a Birthing Day party. In the twilight of her life, what better way for a grateful daughter to say thank you.

She received a floral bouquet and a birthday-cake-and-coffee party in the nursing home where she now resides. She was surprised, and she loved the party in her honor. Many of the residents and staff thought it was a wonderful idea. It's the best way to honor her I can think of, since I live 1,000 miles away and couldn't be with her on my birthday. What does one give an elderly parent in a nursing home? Give a party!
--Myrna Ridings, Richardson, TX

How delightful! You're right - a party for a family member in an assisted-living or nursing home is a wonderful way to make his or her day!
--Heloise

From the April 1, 2001 issue of The Tennessean

A Change of Seasons

For visitors to The Ribbon website, The Dedication Garden has been a pleasant place to discover the feeling and emotions of other caregivers and family members. I used to visit it often myself, amazed at how eloquently these people expressed themselves.

So it was very disappointing recently to discover that the Dedication Garden link was not functioning properly. It's a long, technical explanation of why this occurred. Bottom line is that the Dedication Garden prior to May 1, 2001, will shortly become "Archived". At this moment, they are unavailable. But through the efforts of our talented web master, Kevin, it will be available soon. We'll keep you posted.

In the meantime, and again through Kevin's hard work, the "new" Dedication Garden is up and running. We invite all of you to take a few minutes to make a dedication to your loved one who needs care, to the caregiver who gives you respite, to an angel friend who gives you support. Share your thoughts and feelings and then make The Dedication Garden a regular stop on your list of www sites.

Kevin has outlined the site so that it is easy to use. Just follow his instructions. If you incur any difficulty please notify Kevin at weather91@aol.com.

--Karen
The Ribbon

We are so proud!!!

We are extremely proud to announce the pending new success of one of The Ribbon staff. Kevin, AKA weather91, our resident site guru, is about to graduate from high school!!!

Kevin has been with The Ribbon since it's humble beginnings and has been the driving force behind the web site. It has been because of his hard work that we have received awards and reached out to over 15,000 people. We would not be here if not for him.

He has always amazed us...right from the time we realized what a "young" man we were working with, to the present day when we realize that he is at a new place, going off to college (on a FULL scholarship, thank you very much!). We hope you will all join us in wishing Kevin the very best. If he continues to embrace life with the open heart he has shared with us, he can only be a success.

Karen & Jamie

A Secret Communication - Between the Young & Infirm
by Mary Emma Allen

A special bond has always existed between my grandson and my mom who had Alzheimer's. When Alex was two, they seemed to be at the same point in their lives. I'd watch amazed as Mother and Alex revealed similar capabilities while feeding themselves, communicating, and comprehending. Alex touched my mom's arm with his hand. Mother smiled and patted his head.

Alex sat in her wheel chair with her. Mother jabbered in contentment, while Alex looked into her face. Mother began to need someone to feed her. Alex was starting to feed himself competently. Mother continued to grow backward and Alex moved forward. However, Alex has always told us Great Grandma DeeDee was talking to him when she made unintelligible (to us) sounds not words. When she smiled, he insisted it was a smile for him.

Could they communicate? We don't know, but Alex seemed to comfort and calm the older woman, and his world was brightened when she smiled and made sounds. He played contentedly around her room at the nursing home whenever we visited, sometimes with his older sister, sometimes alone. He hardly ever declined an invitation to accompany me. Alex is now nearly six years old. During his last visit, Mother, who hardly ever responded to us anymore, was having one of her better days and made sounds. Alex said she was talking with him. He also insisted she was humming to the music playing on the radio in her room.

He has that memory to carry him along since her death a month ago. For he seems to miss her more than anyone. We discuss Grandma DeeDee and recall our visits with her. "She talked to me", Alex recalls and smiles as we put together a memory book of this lady who, unknowingly, has played such an important role in his young life.

Mary Emma Allen lives in a multi-generational household with husband, daughter, son-in-law, and two grandchildren. Visits to two great grandmothers rounded out their family circle. Mary has written a book, "When We Become the Parent to Our Parents", about her mother's journey through Alzheimer's. For more information, visit her web site:
http://homepage.fcgnetworks.net/jetent/mea

In Passing: Those We Must Remember

From dpintar@CIWMB.ca.gov
Dated 4-30-2001

Thank you for forwarding The Ribbon to me for all these months. My mother passed away last October, so please take me off the mailing list.
Thank you

Links

AOL News: Gene Therapy Used in Alzheimer's Treatment (AOL Users Only)
TIME.com: Health -- The Nun Study

Sent in by Lilmoose53

Editor's note: I read this article while sitting in the Dr's waiting room, where else? LOL The most interesting thing I found was that some of the Nuns had Alzheimer's according to the autopsy but they showed no signs. This was attributed to the fact that they had kept their brain active with crosswords, puzzles, scrabble, etc. It is an article well worth reading.

Email Bag

Re: Article in Issue 9
From grm4love@care-givers.com

Editor's note: We will not print who this was in response to as it could pertain to more than one person. We think the reply was pertinent but not to whom it was addressed.

Thank you for your response. I understand how you are viewing it. The truth is that no matter how we perceive someone in the final stages of AD, there is still a soul that resides within. The body closes down slowly, a little at a time, no differently then any other body that is moving through an extended period of dying and passing on. Yes their minds may not be coherent and able to communicate and express to us. Perhaps that is because we are wanting them to still be a part of our world...but their mind is functioning in it's own capacity, for which we can't even begin to comprehend at this time.

I do truly understand what you are saying though for if someone is passing from another illness, with more mental clarity they experience things in an entirely different way. The purpose of my article was more for the caregiver to get in touch with their own feelings about death and dying. I am sure you can remember when your loved one first entered the stages of AD that there was confusion, and when their was clarity there were still the same feelings of loss or whatver that they were experiencing which was very unique for them. With AD it may seem more difficult because their mind goes way before the body shuts down. Yet there is still a soul and a mind functioning on it's own levels from within.

I hope this clarifies it a bit for you.

Richest blessings
Gail
Gail R. Mitchell
grm4love@care-givers.com
Empowering Caregivers
Choices * Healing * Love
http://www.care-givers.com
Empowering Caregivers Newsletter: To Subscribe
empoweringcaregivers-subscribe@yahoogroups.com

Re: Issue 8
From wallaces@maine.rr.com

Toileting: Thanks for this letter which teaches so basically to avoid the pitfalls and unnecessary struggles involved with toiling, bathing and dealing with incontinence (the inevitable). Our father is almost totally blind due to failed laser surgery which destroyed his vision in one eye and then he had a cholesterol shower in the other eye. He is the sole caregiver for our mother, 82 years old (he is 83). They are in their own home of 30 years with upstairs bedrooms and bath and laundry in the basement(2 sets of stairs -3 floors to use). What a valiant life they both lead! We struggle to back off and try to read his signals of when he needs respite. We help w/ weekly groceries (they both shop while we transport) and send over meals a few times weekly and get them out to some social community events(concerts, restaurants, church). During the day, he is IT! Mom is mimicking his words and sometimes is quite disagreeable (has shoved a few times, he said), but so far they seem to be "making it". We think the day will come when mom will require in home care and even if only to relieve him of the constant vigilance. He will not agree to hiring a person or agency to come in on a weekly basis to shower mom. There is no insurance for this and Medicaid has no provisions for care, either.

A terrifying question is "wandering": Do all with AD wander? He will not be able to notice that is he is doing the laundry downstairs, or steps out to the garage with the re-cycling. He denies that this might happen! we are scared!

She is not cooking, but helps load the dishwasher and fold clothes with prompting. This is beginning, we know-last Dr visit said "mild-moderate". How soon before advanced?

thanks for the Ribbon-this is the first time we have commented and it just seemed to hit home, this time

From JDunn56760

I have finally decided to share my life. I always was the giver and living alone now has been an experience that I am putting to rest. I have adopted a dog from the Pound. I have saved a life by doing this and possibly my own by having a living animal that needs me in my home. I did have the neighborhood cat but being wild he wasn't always here for me.

This little "Abe", is as new to me as I'm to him and one thing we both feel is we have love and someone to share it with. I miss my husband with all of my heart but there is room to give a bit more. love to all of you. Jan

From DKThomp

May 4, 2001. The apple tree in front of the house is in full white flower, the azaleas are blooming, and all the other flowers are coming up again. It has been over 80 degrees the past two days and we are in for a nice spring weekend.

I was very busy yesterday; I mowed the lawn, spent two hours at the Faith Baptist Community Center on East 55th Street (I was asked to rejoin the area committee again), I when to church twice first to take part in the National Day of Prayer for our nation, and then after an excellent dinner with Cal and Lorraine, I went back in the evening to church for a Sunday School Teacher's meeting. Very busy yes, but my mind was full of Ann. Remembering some very wonderful things about her and things that we did together. And too, as you remember, it was eleven weeks ago yesterday that she went to glory-not gone just gone ahead as the poem said that our dear Kailyn so gracefully read.

Before we were married remembered how she made me promise that I would bring her a fresh yellow daisy each day. In my young and rash love for her, I told her I would give her the moon, sun, and the stars with a fence around them if she so desired. I wondered at the time if she was trying to put that proverbial ring in this man's nose. She obviously asked in jest and my answer was just as silly; however, there was just a hint of seriousness in her request. What she was really asking me to do was to bring her a new, fresh, and living love to her each day. It was a tall order, but who was I to refuse my lovely maiden her heart's desire?

We had so many good times together and those thoughts and memories simply crowded out all the business of yesterday. I read until past midnight then going to bed I was still thinking of all those good things. I tossed and turned for an hour and couldn't go to sleep. The memories were simply overcoming my need for rest. I was not distressed in any way, there was no vexation of my soul or spirit; rather there was a marvelous joy in remembering her flashing eyes, her gentle and teasing way, her effortless elegance, her love of the all the wonder in life.

So after the clock tolled two, I got back up and came to my den and tried to put together the love she had for the simple daisy and her demand that I love her in a new fresh way each and every day of our life. It took me more than an hour to write it, but the expression of this connection was well worth the time and lost sleep. I hope you enjoy it too.

A Daisy Each Day

When love was tender and spring was new.
We two became one without much ado.
But you must promise me along life's way,
To bring me a fresh yellow daisy each day.

Our summer of love was so full of life.
She was now mother as well as a wife.
The promise was kept while the children did play.
Remembering to give her a yellow daisy each day.

Maturing of love colorful as the autumn hues.
We walked hand in hand sharing daily news.
Promise not forgotten in the path of life's way.
I sought out a fresh yellow daisy each day.

The winter brought illness that left her frail.
I loved and cared for her through this long vale.
The promise still fresh while light turned gray.
I brought with care a yellow daisy each day.

Now alone I ponder what will be life's new way.
My heart still full of love as if it were that first May.
The promise alive in the quiet place where she lay.
I kneel down and leave a yellow daisy each day.

In His Great Love,
Doug

From PHOTOLJT

I just had to take a minute to drop you all a note. If you remember I sent you an article a little while ago about how much I have derived from having "connected" with all of my online friends. I would like to share with you how even more special the "connection" has become.

As you know I run The Gathering Place. In chat one night, I was again amazed at how the online support room works. One of our guests, Carol, had to place her Father. It was a very heart-wrenching decision. The day Carol took her Father to the home, she felt like her world had fallen apart. And just when Carol thought things were the worst they could possibly be...a lady walked past the door of her Father's room. And guess who it was? It was another lady from The Gathering Place, Andy. They had met in person and been in contact via phone for a long while. However, what are the odds, that in the darkest hour you have faced in a very long time, that a kind, familiar face would come around a corner and be your redeeming grace? How absolutely wonderful to have someone who has been there and lived it! How great it was that Andy could be there to give Carol the live hugs and support she needed to make it through this difficult time. Both ladies told me they feel the chance meeting was "heaven sent." It brings tears to my eyes and goosebumps to my arms. It further validates that our support system works and I am so thrilled for that. And, it shows me, there are angels among us!

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

P.S.: I must take a quick minute to add, I was very fortunate to have been able to have my dear friend Mary, or Tracy1952, visit this past weekend. Mary was needing just a bit of TLC after the death of her Mother. The whole weekend, Mary would catch me shaking my head and asked what was up. I told Mary I was still amazed beyond belief at how the Internet could have brought 2 folks so close together. The 4.5 days we shared were all to short, but there was so much love and meaning in them; we laughed, cried, hugged and became so much closer. It was as if we had been siblings all along. I think my point to these 2 stories is...just when you think the world is so dark and lonely...and there isn't anyone around who cares, tap on a computer screen, you will be utterly amazed at what you will find!

From Datel123

The Answer's No

Am I ready for her to go beyond this vale of tears and woe?
Am I ready to say good-bye, to say, "Dear God, release her soul?"
My heart tells me it's better, for her to leave this life.
But my emotions are all tangled, and there's still a lot of strife.

Each day's a brand new journey, and the path is still unknown.
And Lord you've been beside me and I know that I have grown.
I've bathed and clothed and fed her. I've stood close to guide her feet.
And yes to be quite honest, there are days when I am beat.

To listen to her talk can sometimes drive me up a wall.
I long to hear the phone ring, just to hear a friendly call.
This lady is my mother, who along with my dear dad,
To bring us up the right way, they gave everything they had.

And now I watch her daily, always with a broken heart.
This terrible disease has pulled us ever so far apart.
The world in which she's captive, is from the distant past.
And I can't help but wonder, how much longer must it last?

Yes, I know it would be better, if God would let her go.
But I have to face the question, am I ready? The answer's no.

© 1998, Jerry Ham
wordman@asaccess.com

The Answer is Yes

I offer this prayer Lord, just a simple request,
And I can't help but hope that the answer is yes.
I ask that You act, out of mercy and love,
And call your child home to Heaven above.

Lord, she is tired, and has been through so much,
Please ease her suffering with your kind gentle touch.
I once asked the question, was I ready to let go?
I responded quite strongly, the answer was no.

But Lord, things have changed; it's just not the same.
She is close to the end of playing life's game.
Her parents and husband have gone on ahead,
I know she would rather be there instead.

There's no quality of life, except what we give,
And Lord, I do think this is no way to live.
So I offer this prayer Lord, just a simple request.
Should You ask if I'm ready, the answer is yes.

© 2001, Jerry Ham

Thank you all for your contributions and for continuing to help The Ribbon grow and reach more caregivers and those who have been diagnosed with Early Onset AD. The best "Mother's Day" gift Karen and I received is seeing the website get over 15,000 hits. We can't put into words how much we appreciate the help you, the readers give us. Y'all are all so very special to us.

Hugs and Peace,
Karen and Jamie