< Volume 7, Issue 12 - The Ribbon Newsletter - TheRibbon.com

Volume 7, Issue 12
June 28, 2003

www.TheRibbon.com(Link: http://www.theribbon.com/ )
1104A Murfreesboro Pike
PMB 114
Nashville, TN 37217-1918

Dear TheRibbon Readers:

Alrighty now, I can finally spill the beans...

I have been so excited for so long and now...

Finally, finally, finally...

I get to tell y'all why I have been bouncing off the walls...

Why I have been teasing you so much...

So do you really want to know?

Of course you do!

So here's what I have been waiting to tell you:

On June 19, 2003, our very own Jamie Aguilar, coeditor of TheRibbon, received a very prestigious award from Tennessee's Mid South Chapter of the Alzheimer's Association. What award you ask? Jamie was honored in front of her family and friends as the 2003 Family Caregiver of the Year!

This marvelous honor was bestowed on Jamie during an elegant fundraising evening coined "The Laughter Remedy" at The Factory at Franklin, in Franklin,
Tennessee.

The evening began with cocktails and a silent auction. A wonderful buffet dinner was served and then it was on to the awards. Two awards were announced; Jane Wright, a very dear lady, was announced as the Professional Caregiver of the Year.

Then...then...it was announced ...Jamie Aguilar, the Family Caregiver of the Year. The cheers and applause were thunderous with Jamie receiving a standing ovation!

Jamie was so modest, yet so very deserving! Let me share with you why! She was nominated due to the vast amount of caregiving done in the last 10 years. Jamie cared for her paternal grandfather, who passed away in March of 2000; her maternal and paternal grandmothers, who passed away within two days of the other in September 2002; and her most recent loss, her Mother, who passed away in March of 2003. (At one point in time she was caring for three individuals at one time.) All of these caregiving experiences involved Alzheimer's and/or some form of dementia. The caregiving road will not be over as Jamie's husband has early onset MID and heart problems.

The nomination was not solely based on caregiving. Jamie and Karen have worked since 1998 to put together the biweekly editions of TheRibbon to assist caregivers in their quest for information so they can attempt to care for their loved ones in a more informed manner.

As the nomination stated it was felt there was no one more deserving than Jamie; that if the panel were to remember how difficult it was to care for one individual, let alone care for four family members, and now a fifth; they would come to the automatic conclusion Jamie would be their winner.

The evening was concluded with entertainment from Andy Andrews who was a marvelous comedian and a great local band, Romie Smith and the Little Big Band, for dancing. What a spectacular evening!

Jamie, on behalf of Karen, Kevin, Micki, me, TheRibbon readers, and all you unknowingly touch, congratulations! Know in your heart that Bree, Nanny, Granny, Mama and our Jane are even more proud of you than we are! There is no one who deserves it more!

JAMIE AGUILAR
THE 2003 CAREGIVER OF THE YEAR

P. S. Oh, one more thing! I am off to another fantastic event! On June 28th, the pre-launch of the newest best seller: Finding the JOY in Alzheimer's ~ Volume 2: When Tears are Dried with Laughter(Link: http://www.thecaregiversvoice.com/books/joy_alzhei mers_2.asp ) will take place in Lancaster, California. I submitted a story and a poem which were chosen by Brenda Avadian, M.A., for inclusion.

Additionally, our very own Kevin@theribbon.com (Kevin@theribbon.com), TheRibbon.com webmaster, will have a major part in this event as he and Brenda will be unveiling Brenda's new Internet website, TheCaregiversVoice.com(Link: http://www.thecaregiversvoice.com/ ).

In the next issue, I will let you know all the fun that took place. I can't wait! Until then, big hugs to y'all!

Love Always,
Linda
www.TheRibbon.com/GatheringPlace(Link: http://www.theribbon.com/GatherPlace/ )

Now you all know why Linda and I have been bursting at the seams. I am so thrilled and honored to have been acknowledged in such a grand way. It was a spectacular evening and I was blessed to have 12 of my family and friends to attend with me.

Linda, my kids and their spouses, my brother and his wife, my sister, and my other sister-in-law and my niece pulled such a surprise on me. When it was time to all go load up in the vehicles, I walked outside and there in the road was this looooong black Humvee. I couldn't believe it...a stretch Hummer! All 13 of us fit in there without being very crowded and the family broke out the champagne and sparkling cider. They had also made a banner to attach to the side of the Humvee.

What makes this so awesome is that it's very rare that anyone can pull anything over on me. I usually know what I'm getting for Christmas and it drives everyone nuts. This is one that they got over on me. They have really rubbed it in.

The sweetest part of the whole evening was meeting Jane Wright, the Professional Caregiver of the Year. Jane has been a professional caregiver for 26 years. She started out working with chronically mentally ill individuals and had to quit to take care of her mother who was diagnosed with Alzheimer's Disease. It was because of that experience that Jane chose to work as a nurse tech for Alzheimer's patients on the Bridges unit at Nashville Rehabilitation Hospital.

Jane is a very sweet woman and you can tell she loves people. When she was asked why she continues to work as a tech with Alzheimer's patients she says.."it's my calling".

Now I know that some of you will not remember Jane Levy. Jane was our Caregiver to the Caregivers..she was someone you could turn to for a few kinds words and some great advice. I got the feeling that Jane Wright would be the same kind of person. She impressed me and brought back some wonderful memories of Jane Levy.

I did not read the speech I wrote. Jane said she was going to speak from the heart and so I did also. I could not tell you what I said off the top of my head. (smiling) I do want to write here what I had at the end of my prepared speech.

This award is something every caregiver should receive. Too many times the primary caregiver is never validated for their work. I would like to encourage you all to take the time to ask a family member, friend, or acquaintance caring for a loved one how THEY feel and listen closely to what is said. Many times there are unspoken messages. The caregiver is simply needing validation to know that what they are doing matters, that they are doing a great job, and most of all someone cares.

Jamie

A Book for Spouses of Dementia Victims

by Mary Emma Allen

Since a number of you have shared that you're caring for a spouse with some form of dementia, I wanted to let you know about a book for spouses. A Glass Full of Tears, Dementia Day-By-Day by June Lund Shiplett, with foreword by David S. Geldmacher, M.D. gives insight into a spouse caring for a spouse.

June is the author of numerous romance novels and kept a journal of her experiences while caring for her husband. The Shipletts were looking forward to their "golden" years when Charlie developed multi-infarct dementia. In her journal, June shares her experiences and feelings and the emotional turmoil that resulted.

She cared for Charlie at home for 2 1/2 years before she needed the assistance of a nursing home. June mentions about her journal: "I started it because I didn't know what was happening to us and felt that I should have a record....After Charlie was diagnosed, I kept writing it for myself because by putting it all down on paper, I was able to purge my heart from the terror of it all."

Even though, in my case, it was my mom and aunt who had dementia, I found that by reading June's book, I was able to gain insight into their situations. June's book, written from a spouse's viewpoint should be of great help to those who must care for a husband or wife.

A Glass Full of Tears is published by Writer's World Press. If you cannot find it, e-mail me and I'll see what I can do. (E-mail: me.allen@juno.com (me.allen@juno.com))

(Mary Emma Allen is the author of When We Become the Parent to Our Parents; web site: http://homepage.fcgnetworks.net/jetent/mea)

Gathering of Friends

October 10-13, 2003

The first tentative deadline is upon us. We have had a few people respond letting us know they will possibly attending. We want to hear from YOU.

We would like to clarify something. We know that some people aren't physically able to walk and that is okay. We will be at Greer Stadium which is the stadium for the Nashville Sounds. We have the stadium seats to sit in if we don't feel like walking. So if that has been one of the things holding you back, then go ahead and plan to come!

We do give out contact phone numbers so that should an emergency arise you can be reached. You do not have to worry about transportation it will be provided. We live about 10 minutes from the airport so if you have to leave on the Sunday we can get you there without any trouble. Everything we do, we try to keep cost in mind as we know just the trip itself is expensive. We want everyone to enjoy themselves!

We would like to meet more new people and see dear friends. If you are nervous about meeting "Internet" people, then put your mind to rest. Please take a moment to read what was written after GOF '01(Link: http://www.theribbon.com/issues/vol5issue21.asp ). You will see that our "Internet" people are some of the most loving, caring and sharing people you can meet.

Just send an email to GOF Info@aol.com (GOF Info@aol.com)and let us know you are interested. Tell us how many people will be coming and how many hotel rooms you will need. This is not a definite Yes on your part. This is just to give us a general idea of how many people MAY come. We need this first little bit of information by July 15th.

Those who receive The Ribbon via USPS you can jot a note with your particulars and send it to The Ribbon, 1104A Murfreesboro Pike, PMB 114, Nashville, TN 37217-1918

Hoping to see many of you in October!

From TheRibbon.com Bookstore

The House on Beartown Road, A Memoir of Learning and Forgetting

by Elizabeth Cohen

I wanted to recommend a book for your website: The House on Beartown Road, A Memoir of Learning and Forgetting , by Elizabeth Cohen.

I write to honor my sister and to my father who is in late stage ALZ, Our Journey is similar to others I have encountered, the fear, the heartwrenching decisions, the family feuds about the choices we face. What makes my sister special is she chronicled one year in which she was caring for my father and her one year old daughter. The book is called The House on Beartown Road, A Memoir of Learning and Forgetting by Elizabeth Cohen. (it is excerpted very nicely in the June 2003 Readers Digest if the book is cost prohibitive).

I am very proud of my sister for having the courage to journal her story. When I sent her my father from NM as I could no longer care for both my mother with COPD and my two little kids and my fathers failing mind, she had just moved to upstate NY in the country with her husband and New Baby. Well, her husband leaves immediately and so her memorable winter begins. The parallels she draws as her daughter learns and my father forgets are intriguing. She extrapolates humor at every corner and as the NY Times review and others say what could have been a scathing self pity party is actually a lovely story of courage, memories and hope. I share this message because it is our story. I have also found there are many recent publications of memoirs from caregivers which provide the readers with perspective that reminds us we are not alone.

My father had a Ph.D. in Economics and is a Professor Emeritus from NM, Dr. Sanford Cohen. This message is honor of him.
Thanks for letting me share.

Melanie
Melajessi@aol.com

Links

From jleehawaii@aol.com (Jeanne L. Lee)

A wonderful site from Scotland about driving and info for people with dementia: Driving and dementia(Link: http://www.alzscot.org/info/driving.html )

From kevin@theribbon.com (Kevin)

Check out Mind Games Help Fight Alzheimer's(Link: http://www.charleston.net/stories/062103/wor_21alz .shtml )

--Kevin
Site Manager, TheRibbon.com
Care for Caregivers

Jeanne L. Lee author of Just Love Me, My Life Turned Upside-down by Alzheimer's has been featured on the Coping With Caregiving internet show on Saturday June 28th. The show can be heard in the Archives on Monday June 30th.

Coping with Caregiving on wsRadio.com(Link: http://www.wsradio.com/copingwithcaregiving/ )

The Bells Are Ringing!

Are you someone who loves music and believes in its healing power? IF YOU HAVE a basic musical background, you can teach people who have dementia a magical new way to experience music. The ringing of bells is an ancient practice and resonates with a language that requires no words but provides wonderful emotional expression for those that cannot communicate verbally or have no musical experience. Handchimes are a high-quality type of handbell that have a beautiful tone and are easy for people with special needs to manage.

The Bells Are Ringing! is a unique and exciting approach to making music with people living with dementia and related disorders, but can also be used with others as well. Author Kristine Theurer's guide is for professionals and laypeople. It is a practical and inspiring "how to" manual, with photographs demonstrating the techniques and step-by-step instructions with plenty of humour and warmth.

Kristine Theurer
http://www.kristine.ca/music_therapy/

Email Bag

From chsix.veatch@verizon.net (Chuck)

Hello, Karen. Re your problem with returned issues. You may already know this, but the cause of some of these may be the aggressive stance that many ISPs have taken in an attempt to curtail the SPAN scourge that is upon us.

A year ago, I was getting maybe 4-5 spam a day. By early spring it was up to an average of 60. My ISP is running spam detection on all incoming and doing a pretty good job. However. my inbox fills rapidly, and,if I don't empty after about 36 hours, they will msg me to either empty it or THEY MUST START RETURNING MSGS TO SENDERS. This doesn't mean that they have categorized The Ribbon as SPAM - it's just that good and bad mail fill the inbox together.

My wife is in a NH, has advanced Alz which first hit her in 1992, and I go there to feed her daily. Therefore, I simply go nowhere elseand am able to easily climb onto the computer every day and cull my inbox. But lots of people receiving The Ribbon may be very much tied up with housework/caregiving/etc at home (and I've flown that mission) and can't boot up every day. You may well recognize all the above but I hate to see anyone have his/her subscription cut off from a finepublication that is so important to people in the Alzheimer "family."

You gals do a wonderful job.

Sincerely,

Chuck

From hotcake@iopener.net (Marylou)

Hi Jamie... thanks so much for the wonderful newsletter... I lost my husband of 22 years, on June 2, 03 and just have not been able to get my self together enough to write and say thank you so much for all the information I have gotten from the newsletters.. they have been a God send to me... My husband was at home on Hospice.. and St. Mary's Hospice here in Carson City, NV have been a blessing to me... He passed away of Alzheimer's, and had it since 1991... at least that's when I began noticing things different of him... Diagnosis was made in 1998.... and also since I am not 65 yet, I cannot collect all of his Social Security, although I do get a percentage of it... He (Rocky) was 79, and looked very good up until the last two weeks... He was my honey, and he will always be with me... so when I see clouds, and there's a break in them, he can come thru and check on me, and know the Love I still have for him... To me, he was just precious.. I've had so many Guardian Angels surrounding me here from neighbors, and e-mail I know I am not alone... and also I am getting a locket necklace with some of his ashes in it and it will be sealed.. see, He'll always be by my heart....

So many wonderful blessings and prayers for all you have done and continue to do... I shall keep up my Alzheimer's support Group, books, web-sites and what ever is out there....

Again, THANK YOU FOR BEING THERE with Prayers Marylou

From thornygates@hotmail.com (Teen)

i need to share and need ideas if you have any. i have learned much from the support of others in the gathering place. have heard great idea's and learned froom my fellow caregivers. i have my mom living with me now and though i don't know she has been dianosed with alzhiemers i can see much of the things listed in the stages. one area i haven't heard much about is how to we help our loved ones fears?

my mom and i have been having a good time swing every day on the porch.we can laugh and cut up.but she loses everything. doesn't remember what she is going to say halfway through. she doesn't remember what she does most of the day.she can't comprehend reading very much at all. the thing is she knows all this is going on and she is scared. i knew she was worried and thought maybe she was scared. but tonight she cried and we talked some about it. she is scared about ' losing her mind' her words. what could i say.i understand being scared and said so. i huged her and told her i loved her. she cried but what could i say? what can i do. how can i help her. i'm scared too. mom asked me the other day ' i wonder what happens when you die' told her i have always wondered that too. she changed the subject fast and said ' well i will just have to call you once i get there.' and then went onto something else real fast. she seems to need to talk and i am willing to listen. i just don't know how to help.maybe it was just a bad day but there will be more. do i tell her i am scared too? how can i comfort her. lie and say your not losing your mind. i try to be supportive but maybe i'm not being so. i don't know. i don't know how to help.

thanks for listening. teen

Have a Safe and Happy 4th of July!!!

Hugs and Peace,
Jamie and Karen