The Ribbon - Care for Caregivers
Volume 8, Issue 12
October 2, 2004
www.TheRibbon.com(Link: http://www.theribbon.com/ )

1325 Venus Drive
Nashville, TN 37217-1918

Greetings to all our readers!

It's been an eventful summer and I'm now in the mood to get back to doing this newsletter. I had to take the summer off as I was just getting worn down in all ways dealing with and thinking about Alzheimer's or any Dementia.

We've been pretty steadily busy at work which is good for the money but it just breaks my heart sometimes to see so many who have this dreadful disease. I feel so bad for the family members who bring in or visit their loved ones who suddenly became depressed or combative. They seem so lost. Thankfully there are places such as Bridges that are able to take these patients and get meds started or adjusted to help out.

To update you a bit, you all know that Linda's (Photoljt) father passed away. She is back in CA and has just moved into a new home. Karen's (KMenges581) mother is now on Hospice. This was a very hard decision for the family to make. Kevin (Weather91) worked for NASA over the summer and is back at school and should graduate this year. Yea!!! A college graduate!

My family is doing ok. Nick had a few bad spells this summer but he is now on Namenda and it has made a great difference in him. We are deep in the process of getting his Social Security Insurance. What a lot of work that is. I had a bout of strep throat and went back to work too soon and kinda relapsed. It has been a busy summer for all of us, and now The Ribbon Family is ready to get back on track.

In the last issue I mentioned being on the Bridges Memory Walk team. Well our walk was last Saturday and our team won Most Improved! We had a 70% growth in walkers. We raised, I believe, $5572. Our fundraisers at the hospital totaled $3000. That's really awesome since we only have about 150 full time employees. If you haven't had your walk yet, get out there and talk it up!!! Raise some funds!!! It's so very important to so many.

I haven't been doing much research this summer so if anyone has articles, poems, etc that they would like to contribute, please send them to Jamie@theribbon.com (Jamie@theribbon.com). I could really use the help until I get back up and running fast again.

Jamie


Urgent Legislative Alert

Lifespan Respite Care Act (HR 1083, S. 538)

With a Little More Effort This Really Has a Chance of Passing!!!!
Contact the White House Today

The Lifespan Respite Care Act authorizes competitive grants to states to make quality respite available and accessible to family caregivers, regardless of age, disability, or family situation. The bill allows grantees to identify, coordinate and build on federal, state and community-based respite resources and funding streams, and would help support, expand and streamline planned and emergency respite, provider recruitment and training, caregiver training, and evaluation.

Status:

The Senate has passed the Lifespan Respite Care Act (S. 538). The House bill has 134 cosponsors from both parties. Both bills have been referred to the House Energy and Commerce Committee.

White House Action:

Contact the President and urge him to support the Lifespan Respite Care Act. Email Tracy Justesen, Associate Director for White House Domestic Policy at TJustesen@opd.eop.gov or call the White House at 202-456-1414 and urge support for the Lifespan Respite Care Act (HR 1083, S. 538)

To Join the ARCH National Respite Network and keep up to date on the bill and NRC activities, please email mmathers@chtop.org (mmathers@chtop.org), ARCH, Chapel Hill Training-Outreach Project, Inc.

For more information on the legislation, please contact jbkagan@aol.com (jbkagan@aol.com), ARCH National Respite Coalition by email or at 703-256-9578. Visit http://www.archrespite.org/nrc.htm


Dementia Advocacy Support Network International

www.DASNInternational.org

This is a FORMAL INVITATION to join DASNI's camp-conference on the weekend of October 29, 30, 31. Most people will want to come in the night before the conference begins (Oct 28) and leave in the afternoon of the 31st. Plans are coming along nicely. We will probably have at least two speakers from national organizations and whomever else I can get commitments from. Wade has offered a hayride, and we will have a local historian speak to us on the afternoon of the 29th. Marshmallow roasts and sing-alongs will be included, and several DASNI authors will be available for book signings.

The conference is to be held at the Checotah KOA campgrounds. Phone Jan or Wade Phillips (918-473-6511) to reserve space in one of the two cabins (each sleeps 8), or one of the two cottages, each of which sleeps 4. RV-ers and other campers can reserve spaces with Jan. It may be that we will have to have a girls cabin and a guys cabin to make maximum use of the space, so stay flexible. People who fly in and cannot bring camping gear will get first crack at the cabins and cottages.

People wishing to stay at a motel can make their own arrangements with the DAYS INN Eufaula (918-689-3999) Please mention that you are with the DASN International group, so that we can all get discounts there if we fill 10 or more rooms.

There is also a LAKE EUFAULA INN ((918) 473-2376) within four miles of the camp grounds. Please make your arrangements directly with this motel.

If you go to our http://www.dasninternational.org web site, Lynn will soon have posted a downloadable and printable letter you can present to any potential donors in your area to see if you can get a little assistance financially for your trip. Donors who send donations in your name to DASNI will receive a receipt for tax deduction purposes from DASNI.

Please let tiger@pcis.net (tiger@pcis.net) know of your plans (how many, which nights), and your names, address, phone and email. There is a $20 conference fee to be mailed to DASN International,. P.O. Box 1645, Mariposa, CA 95338.

This is an opportunity not to miss! If you can find it in your budget, we need you there!

csmbase@sbcglobal.net (csmbase@sbcglobal.net)


Creative Memories

Hello Family and Friends,

I just got home from our Showcase Convention and it was awesome! I had a great time. As most of you know Creative Memories is truly dedicated to the fight against Alzheimer's disease. They have made our Triumph Album 12x12 this year! That is so great. It let's you put more pictures and tell more stories about our loved ones. I can't express enough how much this means to have after they are gone. We lost my husband's mother a couple years ago to this dreadful disease and a very close friend of mine lost her husband last year at a very early age. I am sending you my web address so you can go look at it and I am giving you a chance to order yours. I will be glad to mail it to you.

Also Creative Memories has their FIRST magazine! Yes, it is awesome!!

Name: Lasting moments. 72 pages, full color,six times a year.

Available to customers by annual subscription: $23.97

(all issues include): feature stories and album instruction that celebrate seasons, connections, traditions, travel, hobbies, heritage and more. Lasting Moments will also contain photo taking tips, technology information, success stories, new products, and a fun section called "One page three ways."

Something else that sets it apart from all other scrapbook magazines on the market: NO OUTSIDE advertising. It's chockfull of useful information an stories to enhance the service and product you already have.

Each paid subscriber will receive a Free thank-you gift: a pack of two sunwashed sticker sheet, two journaling boxes and a block sticker strip in a clear envelope with a printed insert sheet.

Premier issue: Nov./Dec. 2004

Please let me know if I can help you anyway.

Becky Creative
Memories Unit Leader

http://www.creativememories.com/beckyarnold

P.S. - The patina leatherette cover has a timeless double square border in silver matte foil, our 12x12 triumph album may not be listed until next month but keep checking as I have three of them here. I got to order when I came home from showcase. (this is a limited-edition) so order yours soon.


Remembrance

Good Morning all,

August 13, 2004

Fourteen years ago today I started this journal. It starts this way; August 13, 1990 "I have started this to keep a record of those people and things that I pray for, and to remind myself of things to do and things I have done." It has become a book of remembrance of the good, the bad, times of great sweetness, and times of very deep sorrow. But as I have leafed through several pages of the record, I find a central theme in the writing the grace of God to me and my family. All other things are over shadowed by the great mystery of God's love and mercy to this man. Why among the most undeserving of all men did He call me to be one of His elect? Yet, forty-eight years ago God did call me to Himself. And this past fourteen years, I have had a closer walk than I could have ever imagined possible. So, today my heart if full, and as is my practice at such times I have written a poem, this time about remembrance.


Remembrance
by Doug Thompson

A plea to remembrance
A play on words in time
The burden of ramblings
The anguish of rhyme

What is its beauty?
To remember past time
A record of duty
A luxury of mind

A surprise of magic favor
To inspire a lonely day
An event in life to savor
To keep all fear at bay

Of what import is it?
To write of mundane life
And play with one's wit
On the poverty in life's strife

Oh, remembrance of life beautiful
Oh, song sung in the highest art
To dream of everlasting goodness
Transcending all sorrows and woes

Let not the poet grow weary
Sing praises to memories past
To the height of immoral worthiness
By His grace the soul will last!

Oh thought, oh wonder, the grace of God
No remembrance, no words can digest
To feed the thoughts of the Master's love
And fill the heart with His Eternal Word.

"Dum Spiro spero- While I breathe, I hope!

In His Great Love,

Doug Thompson


Helpful Hints

  1. Use concrete, literal, positive phrases.
  2. Give one step instructions.
  3. Always use a calm voice.
  4. Limit options - too many choices can overwhelm.
  5. Ask one question at a time and WAIT for an answer.
  6. Refrain from arguing or trying to use logic when the person is incorrect.
  7. Be honest. Limit promises to the ones you can keep.
  8. Validate their feelings about losses or frustrations.
  9. Don't stop trying.
  10. Limit wording. Too many words are confusing.
  11. Make your verbal and non-verbal messages the same. People read non-verbal languagevery well.
  12. Move slowly. Sudden movements may frighten them.
  13. Stand or sit in front and make eye contact before speaking.
  14. Use gestures and movements to supplement your point.
  15. Make tasks fun. Use singing, joking and silliness.
  16. Allow the person to say "no". Then reapproach later.
  17. Don't control or power struggle. Go with the flow.
  18. Ask for help. If you are tired and stressed the person will feel this and react negatively.

Compliments of Barton House(Link: http://www.thebartonhouse.com/ ).


Email Bag

From Dzyizy@aol.com (Dzyizy)

I care for my husband of 51 years. We have been married 28 years. We had always done everything together. Since 1998, he became ill and our lives changed dramatically. I initially went through shock, grief, anger and fright that I had never experienced before. Even when my mother passed away in 1985, I was deeply grieved but my ever patient husband was there with me every day. Since he became ill, he has never been the same. I have had to accept that he would never be and I still struggle with this acceptance today. I came across your newsletter and really appreciated the Caregiver's Bill of Rights(Link: http://www.theribbon.com/articles/billofrights.php ). I, along with my two adult children (a third is away at school) are his only caregivers. We try to keep things as normal as possible, but no matter what there is always a level of stress that comes from trying to do our best to care for him. I printed the Bill of Rights and placed it on our refrigerator as a reminder that it is o.k. to want to continue to invest in ourselves. I will continue to check in. Maybe I can find more helpful hints............


From JRNYWMN@aol.com (Ann)

A Mom Story

I just got Mom ready for bed, then took her into the living room. I put on a movie on TV ("While You Were Sleeping"). At the same time, I've been printing a bible quiz for a guy at work (loves this stuff), and the question at the moment was "who was Abraham's son?" I couldn't remember, so I walked into the living room, got to eye level with her and asked "who was Abraham's son?"

Right then, in the movie, someone said the name of one of the guys "Jack".

Mom said "Jack Sprat".

I cracked up. After regaining my composure (because she's NOT in a good mood after brushing her teeth), I asked again.

Her response? "Jack". She was quite serious.

[I'm still cracking up just writing this.]

I gave it one last shot. [Just at that moment in the movie, they were talking about a baby.]

I said "who was Abraham's son". Mom said "Jack, and he's pregnant."

NO LIE!!!!!! I'm still cracking up! Yes, there are good times with this lousy disease. Ann


you're gonna love this one just as much...(cont'd from previous email)

Right after I gave up laughing hysterically, I realized I still didn't have the answer. I had to look it up. Yep, pulled out the bible and started flipping through. Miraculously, I went to a "good" page and came up with what could be a possible answer. I turned to Mom, beaming, and asked her if she knew who Abraham's son was. She said "he's dead."

Yep, put me right back into the hysterics.

Oh, and, yes, I came up with the right answer. :) Ann


From lyno55@hotmail.com (Lynn)

Hi Everyone, Just wanted to share some good news. We had a GREAT turn out for our memory walk yesterday.........Love to all, Lynn


Subject: Total $$$ from Memory Walk

Date: Sat, 11 Sep 2004 19:02:00 -0500

THANK YOU for your commitment to Alzheimer's.

Our biggest year ever at Memory Walk:

300 volunteers

Over 1,500 participants

And $125,000 raised

...until Alzheimer's is just a memory, we will continue our work with your support

Highest regards,

Susan Toth, Chey Green and Janet Kolb

Alzheimer's Association Staff/Colorado Springs office


Bruce Schwartz Donates All His Author's Royalties to Alzheimer's

Bruce Schwartz, author of the hit novel The Twenty-First Century , recently lost both of his parents to Alzheimer's disease, the number three killer in the United States. Being the main caregiver, he saw first-hand the heartbreaking effects this devastating disease has on the victim and those caring for their loved one. After years of watching his parents lose their minds and physical functions, waste away to skin and bones, and die an undignified, horrendous death, at a cost of hundreds of thousands of dollars, Bruce is on a crusade to help other families who are living through this Hell. This is why he has made the commitment to donate all of his author's royalties ($10.00 per book) from now till the end of the year to the Alzheimer's Association. He hopes for this New Year, that you will help him help others.

As it happened to Bruce (who never expected it, especially to both parents), it may very well happen to you, as there are 4.5 million Alzheimer victims in the United States and 18 million worldwide. Studies say that if we don't find a cure, Alzheimer's disease will triple in the next twenty years. What a frightening probability. Will your parents or grandparents, or loved ones, be next? The statistics are not in your favor. This has become a terrorist war we're fighting (Alzheimer's is the worst terror one can imagine), and presently we're losing. To win, we must all be our brother's (and sister's) keeper.

If you sign on to http://www.thetwentyfirstcentury.com/ and order a copy of the book, Bruce Schwartz and his legal advisors will make sure the $10.00 from each book gets to the Alzheimer's Association (50% to National HQ for research, and 50% to each state's chapter to directly help those in need). The news that all the author's profits from this book will be going to help defeat this killer will hopefully spread worldwide on the Internet, and people everywhere will participate so we can find a cure for this horrific disease.

Please copy this letter to an email, write in the 'Subject Line' A Life-Saving Request from (your name), and send it to everyone you know. There's not a moment to lose!

Thank you, Park Avenue Press, 303 Park Avenue S #1223, New York, NY 10010.

"A cautionary book in the company of Charles Dickens and Jonathan Swift. The best thriller of the year so far."
-- Ed Jones, KBEM/National Public Radio

Hugs and Peace,

Jamie and Karen

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