The Ribbon - Care for Caregivers
Volume 5, Issue 14
July 10, 2001
www.TheRibbon.com
1104A Murfreesboro Pike PMB 114
Nashville, TN 37217-1918

Karen and I have been talking again. We'd like to have another Gathering of Friends in Nashville, TN. We had such a wonderful time at the last Gathering and hope it will work out to have another.

We'd like to shoot for the weekend of Oct. 6, 7, and 8th, 2001. That's this October.

It is Columbus Day Weekend. If you would like to attend please let us know so that we can get arrangements made. We've made new friends, have lots of "old" friends, and will continue to make even more friends. We hope you will consider coming as we always love to meet everyone.

-- Jamie and Karen


Web Site Update

The Ribbon web site has been up and running for a couple of weeks now, we are happy to report. Because of the difficulties we had over the last month, there are still gaps but, for the most part, we are back to normal. We would like to remind everyone how important your individual contributions to The Ribbon are.

Message Board: This is a place where you can ask questions, leave comments for others to read or respond to. Subjects currently on the Message Board are EOAD, Books on Caregiving, and New Caregivers, to mention a few.

Dedication Garden: This has always been a treasured part of The Ribbon web site. Unfortunately, at the present time, we do not have access to Dedications left there prior to June 1, 2001. This is the place to leave a Dedication to your loved one or someone who cares for your loved one, for all to see. It is easy to use, and creates a lasting tribute.

Top Alzheimer's/Caregiving Site: The logo on the main page of The Ribbon web site takes you to this site where each time you go to The Ribbon you are casting a "vote" for The Ribbon. We have been honored three times to be included in the Top 4. This site grows almost daily as more and more sites become available with information on Caregiving. Do check it out!

Please keep in mind that sharing is the key to caregiving. Share with others, helping both them and you.


Book Nook

As a person diagnosed with the early stages of Frontotemporal Dementia, I found the book "Who Will I Be When I Die" by Christine Boden, very insightful into the journey that a person takes from before diagnosis of a dementing illness to diagnosis and beyond. It was like reading about my own journey. I am sure that it is the journey of many others as I have heard the same comments from other persons diagnosed with dementia after they read Christine's book.

I found it very helpful to share this book with my family members and friends so that they could have a better understanding about how and what I was/am feeling. They see me "looking" like a "normal" person (most of the time), but the fact is I have been diagosed with a dementing illness and if it wasnt for the help of pharmacological treatment, I would be much worse off.

Christine, while writing this book was diagnosed with Alzheimer's Disease. Her diagnosis has since been changed to Frontotemporal Dementia.

This enlightening autobiography can only be purchased though Australia Harper Collins Publisher. It can be bought easily on the web at http://www.angusrobertson.com.au/. A search of the name or author will get you to the book. Please note too that prices are quoted in Australian dollars. The U.S. dollar is worth about two times what an Australian dollar is worth, so the U.S. price will be about half of what is quoted.

Lynn Jackson
lynn.jackson@home.com


New Group Yields Big Ideas
by Carole Mulliken

The Dementia Advocacy and Support Network (DASN) held its second annual meeting in Montana last month. On a farm surrounded by horses, dogs and skunks, roughly a dozen people with dementia (PWiDs) from three countries met. Members reported on advocacy achievements "back home" such as books published, videos made about their lives, and support groups they have led. They quickly became friends as they blazed a new, international trail for advocacy and support. A vital, young activist from Honolulu described the group as "my new best friends."

In formal sessions, the Board of Directors approved a series of recommendations to be presented to Alzheimer's Disease International (ADI) which meets this October in New Zealand. The DASN board applauded some of the ADI's new Charter of Principles, and discussed concerns about others. The board also unanimously approved three recommendations to ADI.

"DASN looks forward to participating fully in Plenary Sessions, workshops, and Poster Displays at ADI," comments Phil Hardt, DASN's new president.

DASN participant Christine Bryden, author of Who Will I Be When I Die? summarizes DASN's position,

"We recommend nothing less than a new paradigm for the development of ADI's strategies, based on the stages of all the diseases that cause dementia." Bryden's book is currently available only in Australia from Harper Collins Publishers.

DASN has members in the United States, Brazil, Canada, Australia, New Zealand and the United Kingdom. Currently, more than one hundred members range in age from 24 to 74.

For more information about DASN, please visit the web site, www.DASN.org, or write DASN c/o Carole Mulliken, 620 Elm Street, Washington, MO 63090.


Before I Forget

Alan Gibbs from New Zealand sent this to the DASN group and gave permission for us to reprint it. It is meant to be printed and folded as a handout. Carole was kind enough to send it to me as an attachment that prints wonderfully. If you are interested, you may send an email to DrMOM1955@aol.com and I will send the attachment to you for easier printing.

Note: This article has been posted in PDF format in our Reading Room for printing.
Click here to view this article in PDF format.
Click here to download Adobe Acrobat Reader free.

(This space can be used to write the name and address)

Prepared by & used with permission of
Memory Group,
ADARDS,
Tauranga, N.Z.

TO PEOPLE IMPORTANT TO ME

Dear _________

You are a friend to whom I would like to acknowledge my memory loss.

If you know and understand, this will encourage and support me and my family. It will also improve community acceptance and understanding of memory loss.

While it may appear that I have no disability, memory loss does affect me in my daily activities.

It is an illness over which I have no control and which I did not precipitate by any action or omission on my or anyone else's part.

Over the page are guidelines to help us all.


Memory loss affects my thought processing ability
I need you to:

  • Continue to include me in conversations and activities
  • Give me time to remember and respond
  • Focus on the things I am still able to achieve and enjoy
  • At times, take the initiative and then I will be able to join in
  • Write important details down for me using established support systems (eg. diaries, calendar)
  • Accept that repetition is a part of the illness
  • Speak to me directly - not through another person
  • Treat me with the same respect and dignity as other people, for I still have adult thoughts and feelings

It will be helpful to you if you understand that:

  • Recent memories or instructions are the most difficult to recall
  • New ideas are difficult to learn
  • Routine is important for me in managing my days
  • Big group settings make me feel more vulnerable
  • Role changes may be necessary and may have already occurred
  • When I forget, it is the nature of memory loss, it's not my fault
  • The ADARDS office has books and videos which will help you learn more about the condition

I need lots of encouragement.
Keep a sense of humour, :) laugh with me!

As you will be well aware, I also have impaired hearing - loud discordant sounds full of audio distortion such as shouting, large gatherings, white noise such as wind and vehicle noise are particularly bothersome. You can help our communication by facing me and drawing my attention to the subject matter as you begin speaking.

For my part I will endeavour to make your interaction with me a pleasant and meaningful experience in response to your efforts.

It is not the end of the road in life's journey for me - it means the road has narrowed, both figuratively and literally - I have given up driving and probably will have to curtail activities involving risk and hazards in the future. Please continue to journey with me.

Thank you for taking time to read this letter.

Regards from,

____________


Links

This was shared by one of our members on DASN, thought you might like the info as well - Mina Cwadephill

PS - thanks for inviting me to be part of your discussion forum!

http://www.benefitscheckup.org/

Welcome to BenefitsCheckUp - a free, easy-to-use service that identifies federal and state assistance programs for older Americans. Researching these programs used to be a time-consuming, frustrating experience. But no longer.

The National Council on the Aging created BenefitsCheckUp to help older adults to quickly identify programs that may improve the quality of their lives. Family and friends can also obtain facts about benefits that their loved ones may qualify for. Chances are, you will be surprised to learn what benefits are available to you, regardless of your income.

Here's how it works: You take 10 or 15 minutes to enter information about your financial situation into an online questionnaire. Then, BenefitsCheckUp explains what benefit programs you may be eligible for and how to apply for them.

Rest assured that BenefitsCheckUp is completely confidential. It does not require your name, address, phone number, Social Security number, or other information that could be used to identify you. You enter simple information, such as your age, income, and ZIP code, and BenefitsCheckUp identifies programs you might qualify for.


I thought you all might find this helpful when you or your loved one is facing testing. This web site gives names for almost every test out there as well as a description of the proceedure, Prepping before, what results could possibly mean and reasons for the test. Enjoy

HOST iVH Dizzy & HOST iVH Kat

Complete Guide to Medical Tests: Test By Name
www.testuniverse.com/testbyname


When children become the caretakers -- As the boomers hit their 50s, increasingly they find themselves helping out aging parents who are running out of money before they run out of breath. These stories will help you and your parents plan for a comfortable glide into their golden years.

You can read this story on Bankrate.com at http://www.bankrate.com/brm/news/special/20001201a.asp


FDA APPROVES ORAL SOLUTION OF JANSSEN'S ALZHEIMER'S DRUG REMINYL

Janssen Pharmaceutical Products, a wholly owned subsidiary of Johnson & Johnson, said on Tuesday that the US Food and Drug Administration (FDA) has approved a new oral solution formulation of its Alzheimer's disease therapy Reminyl.

http://neurology.medscape.com/39607.rhtml?srcmp=neur-062901


NATIONAL POST ONLINE | Arts and Life Story
www.nationalpost.com/artslife/life/health/story.html?f=/stories/20010703/60796

On this site there are self portraits done by an artist as he progressed with Alzheimer's Disease. I found it interesting. There was a lot of discussion about this by members of DASN who are diagnoised with a dementia.


Drug therapy for Alzheimer's patients

Doctors are testing a new drug therapy to see if it slows the progression of the disease. It's an exciting thought, a drug that regenerates parts of the brain and protects parts not yet affected by the disease.

Can it really help? Doctors are putting the medication to the test.

The drug is called Neotrofin, a combination of two chemicals found in the body.

WGN-TV: News At Nine
http://sns.wgntv.com/news/local/evening/wgntv070701medicalwatch.story


Email Bag

From CAREVOICE

How touched I am by your comments in The Ribbon, Dean. While John is still alive continue to write and keep a copy of your thoughts. I was fortunate to receive your initial thoughts in the mail about a year or more ago. It is difficult putting a salable book together--Finding the JOY in Alzheimer's is my sixth. Also, too many caregivers write about their loved ones AFTER their lived ones have passed on. I felt fortunate to have been able to complete two books while my father was alive (SLEEP? WHAT SLEEP?) He even read pages of one of them and commented upon them--these comments I've included in "Where's my shoes?" I find a special poignancy when we write about caring for our loved ones while they are still living. Once they have passed on...our stories can still be compelling, but ...?

So, please Dean ...if you wish to share the details with the world, try to complete as much as you can while John is alive.

Genuinely Yours,
Brenda Avadian, M.A.
The Caregiver's Voice
Speaker and Author, "Where's my shoes?" My Father's Walk Through Alzheimer's (NOW AVAILABLE in Audiobook and in the German language in August) and Finding the JOY in Alzheimer's: Caregivers share the JOYFUL times (September release).


Remember please to take care of yourself in this heat. Our loved ones do sometimes tend to "overdress" so watch for this and keep an eye on their thermostats in the house. Several times I've gone over and caught Nanny's heat on with the house hot inside.

As always, don't forget to visit a support group. As you know, we are partial to The Gathering Place (www.theribbon.com/GatherPlace)

Hoping to hear from y'all soon.

Hugs and Peace,
Jamie and Karen

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