Volume 6, Issue 13
June 30, 2002

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

Things have been pretty hectic here at the home place lately. There have been numerous doctor visits, a hospital ER visit, an 18th birthday to celebrate, good news to receive, and bad news to receive.

During all of this I've been wondering, "Have I bitten off more than I can chew?" in adding my Mother and my Grandmother to my caregiving activities. I've been feeling really stressed and the Big G word, guilt, has been hitting me hard. I've felt bad that I haven't kept my house up to par, I've felt that I'm neglecting Nanny when at Mama's house and then I feel I'm neglecting Mama and Grandmother when I'm at home. I won't even go into how bad I feel about my husband and my son.

Then I had a smack upside my head!! Jamie, you aren't taking care of yourself are you? I've been running around like a chicken with it's head cut off doing for everyone else and haven't done anything for ME. I've been trying to handle everything by myself and not asking for help.

Now I ask myself, "What is the first and foremost rule of Caregiving"? It is that the Caregiver MUST take care of themselves. For the last few days after my awakening I've been taking a 10 minute break here and there during the day and doing what I want to do for me in the evenings, even if it's just to veg out watching TV. I'm also learning to ask for help from my family.

I think that's the hardest part of all. I've always kind of been a "supermom" and it's hard to ask your children to help you do something. I thought I had torn that big "S" off my bra but obviously it was still stuck on by a thread.

I'm proud to say that my kids have pulled through for me. I just need to realize that I need to let them know what I need done. I have to realize that they have their own lives and don't always recognize what I need. I cannot be ashamed or embarassed to ask.

I can now say that for the moment everything is under better control. My house is still cluttered and dusty but the wash is done and the kitchen is clean. That's the jobs for next week. I'm not getting upset thinking I'm neglecting anyone because I now know I'm not. I'm still trying to get a routine going but that will work out in time.

So now those of you who feel overwhelmed, don't think you are alone!! We all go through it and we all will survive it. Life happens.

Hugs,

Jamie

Virus Alert

As we stated in the last newsletter there have been some virus problems. We need to tell you that if you receive ANY email from those of us at The Ribbon that has an attachment DO NOT OPEN IT. Just DELETE it.

What we have found out is that if someone has this virus and one of our names is in their address book then that person's virus can send an email out to someone else in the address book and have it look like we sent it.

We DO NOT send out anything to our readers with an attachment unless YOU have requested it that way.

We hope there will no longer be any problems with this worm.

The Ribbon Staff

Alzheimer's Support on MSN

Members of the site have formed an "Awareness Mission Group" whose purpose is to work to heighten awareness of care giving issues and dementia. Members of the site feel that in-depth presentations of the cold hard facts of the impacts of dementias on caregivers are in order. The personal demands on caregivers, disruptions of normal lives and resulting financial strains can be disastrous.

A major project for the "Awareness Mission Group" is an e-mail and letter writing campaign to Dateline NBC, the weekly nighttime news magazine. The goal is to flood the producers with mail asking them to produce a show or series of shows on this disease that affects millions and is expected to reach epidemic level in the near future. The e-mails started on May 27, 2002. All concerned citizens are invited to join in this campaign. Simply send your care giving story to dateline@nbc.com (dateline@nbc.com) with a request for a feature on issues related to dementia/caregiving.

All the details, including sample letters, can be found on their site: Alzheimer's Support - Awareness Mission

Details regarding the "Awareness Mission" are listed on the links to the left of the Home Page.

The Caregiving Years

by Denise M. Brown

When you expect a child, the community (your family, friends, co-workers) rally around you and your spouse. When you expect your first child, you receive gifts, well wishes and the encouragement that you are entering a wonderful, albeit challenging, chapter in your life. As you prepare to welcome your child, you feel pride at the thought of your role as parent: How you will shape the mind of a youngster, impacting him or her with your wisdom, insights and knowledge.

Now think about a similar life experience, just one on the other end of the spectrum. An aging relative, a spouse, a parent, a grandparent, needs your help. And, you want to help--you believe in making the most of the years you have left together. But, when you tell your friends, your colleagues, even other family members, the comments you may hear are a far cry from well-wishes. "I could never do that! Why do you?" Or, the more common response: "Why don't you just put your mother (or your wife, or your grandfather) in a nursing home? That way you won't be so stressed out."

With support like that, no wonder you might find yourself fighting self-doubts during your caregiving journey, asking yourself, "Why me? Why am I the one to do this?" These self-doubts can erode your ability to handle your caregiving responsibilities effectively and efficiently. Even worse, these self-doubts cloud your ability to understand how important this caregiving journey is--to your care recipient, your family, yourself.

Which is why I've developed The Caregiving Years: Six Stages To A Meaningful Experience. Much like books for expecting parents, The Caregiving Years describes what to expect throughout the journey. By having information about your role as caregiver--you understand what information to gather and the actions to take--you can spend more time making this experience meaningful, for your care recipient, your family, yourself.

The Caregiving Years is separated into six stages, each stage defined by the number of years spent as a caregiver. But these definitions were created to use only as a guide. Your care recipient's illness and diagnosis will determine how quickly or slowly you pass through the stages. While the length of time spent in each stage may differ for each caregiver, the emotions and experiences felt will remain constant.

I welcome your feedback to this concept. And, I'd love to know what insights, understandings and meanings you've garnered about your journey because of The Caregiving Years.

Note: I have provided The Caregiving Years to be used strictly as a guide. All situations vary. I encourage you to always consult your health care professionals to discuss your individual situation and the best course of action for you and your care recipient.

Printed by permission of: Denise M. Brown
Editor/Publisher, Caregiving newsletter, Caregiving.com
Caregiving.com: Helping You Help Aging Relatives

Stage 1
The Expectant Caregiver

In the near future, I may help an aging relative.

Who are you?

You have a growing concern that within the next 12 to 18 months or so, your aging relative will need more and more of your assistance and time. You're concerned because of your relative's age, past and present medical condition, and current living condition.

Your keyword: Ask.

Ask questions of your care recipient. Ask questions of health care professionals. Ask questions of lawyers and financial planners.

Your Purpose:

You expect to become a caregiver; this is your time to prepare. You should research options, gather information, and provide the opportunity for your care recipient to share his or her feelings and values. This is also your time to concentrate on taking care of yourself--keeping up with family and friends, enjoying your hobbies and interests, pursing your career goals, taking trips you've always dreamed of.

Although an immediate crisis may not face you, the threat of one seems to hang in the horizon. Rather than closing your eyes to avoid seeing that horizon, you can take some proactive steps now that will make your future caregiving days easier.

As an "expectant caregiver", what can you do?

1. Consult with a good lawyer familiar with eldercare issues.

Find out about durable powers of attorney for health care and living wills; start the process to ensure that the necessary legal papers are in order.

2. Determine financial situations.

Knowing the financial status can help determine future health care choices. Determine monthly income from pensions and social security; learn about annuities, stock investments and bank accounts.

A Tip from Denise:

You may find yourself "taking away" from your aging relative--the keys to the car, the solo trip to the grocery store, her hosting the large family get-togethers. To balance the scales, try to replace what you take away. The exchange may not be equal (and in most situations, it won't be), but giving back some of what you take away will help your care recipient maintain her dignity and independence.

For instance, you feel that it's just too much for your mother to continue hosting Thanksgiving dinner every year. Your mother reluctantly relents to having the celebration at your house. As you plan for the day, try to incorporate some of your mother's traditions in the celebration: her favorite recipes, her special dishes, her most honored prayer. While your mother may miss hosting the tradition at her home, she'll feel that some of her house is at yours.

3. Investigate community health care options.

What home health care agencies in your area offer quality, affordable home care? What housing options are available: retirement communities, assisted living centers? Contact community organizations to request brochures and pamphlets.

In addition, consider your aging relative's current living condition. Will your aging relative be able to reside safely in her home if she uses a wheelchair, becomes bedbound? What changes can you make today that will prevent future barriers to providing care in her home? Or, are the necessary changes almost an impossibility? If so, what other options do you have: your home, an assisted living facility, a retirement community?

4. Begin discussions with your aging relative about his or her wishes.

Asking questions now about your relative's care preferences will help you provide the care your relative wants. Where does your relative want to die? At home? At a care facility? What type of funeral would your relative want? Does your relative have a preference as to whom in the family provides care? How does your relative feel about end-of-life care decisions?

Although you may not be able to meet all your relative's wishes, you can begin to plan now to meet at least the most important.

5. Determine the current health care providers.

Who are the physicians, what is the diagnosis? In addition, learn about medications and why the medications have been prescribed.

6. Concentrate on the reality of the situations.

Keep a realistic view of their situations: What's the worst that could happen? What's the best possible outcome? Then, determine what options are available for each of these outcomes.

7. Start a journal; chronicle your feelings, your concerns and your actions.

You may be surprised at your feelings of loss. Your preparation of the future allows you to see what your care recipient--and you--might lose. You both will experience changes in your relationship, your schedules, your amount of freedom. Write down your thoughts about the potential losses--and how you might be able to hang on to them, through minor adjustments and changes, for a little longer.

Resources that can help Stage 1 Caregivers, from Caregiving.com

In the next few issues of The Ribbon we will print the rest of the stages.

Links

Does Your Loved One Show Signs of Alzheimer's Disease?
http://quiz.ivillage.com/health/tests/alzheimers_warning

Very good article on IVillage.com

** The Disappearing Mind **
By the year 2050, as many as 14 million Americans could be suffering from Alzheimers disease. With new technology, doctors can diagnose the condition at its earliest stages in an attempt to stop its terrifying progression. Will they succeed?

The Disappearing Mind
http://www.msnbc.com/news/767048.asp

In Passing: Those We Must Remember

It is with great sadness that i write to share iwth you that I received an email from Clara or Pacoon that her father passed away June the 18th. She states she is glad that "he is at rest and walking with our Creator and Mom."

Please join with me in extending your thoughts and sympathies to Clara and her family.

I must apologize on this one folks; this email got past me! In the first part of June I received an email from Tess or KuuipoTes telling me her mother had passed away. Tess has only been in a couple of times to visit with us; however, she has been part of the AOL chats recently and also AOL chats a few years ago. Tess is requesting we keep her and her family in our thoughts and prayers.

Please join with me in extending your thoughts and sympathies to Tess and her family during this very difficult time.

Love Always,
Linda
Linda@theribbon.com (Linda@theribbon.com)
The Gathering Place
Online Alzheimer's Caregiver Support
http://www.theribbon.com/GatherPlace/
Contributor to Finding the Joys in Alzheimer's (page 76)

New Clinical Trial

Healthy Aging and Memory Study

This trial record can be viewed by clicking on the link at [http://www.alzheimers.org/trials/newtrials.html].

PROTOCOL NUMBER
IA0032

BRIEF TITLE
Healthy Aging and Memory Study

OFFICIAL TITLE
Alzheimer's Disease Prevention Instrument Protocol

SPONORING AGENCY:
National Institute on Aging

DRUG(S) (GENERIC NAME [BRAND NAME]):
None

INCLUSION CRITERIA

75 years or older.
Fluent in English or Spanish.
Stable medical condition for four weeks prior to screening visit.
Stable medications for four weeks prior to screening visit.
Either cognitively normal, or mild cognitive impairment (MCI). If MCI, the subject's CDR at screening must have a global score of 0.5.
mMMSE score greater than 88 for subjects with greater than 8 years of education, or greater than 80 for subjects with less than 8 years education, and Free and Cued Selective Reminding Task total free plus cued recall score greater than 44 with three learning trials.
Willing to participate in four to five year follow-up study.
Willing to identify person who can serve as study partner, as well as attend all clinic visits with study participant. The study partner should be someone who has contact with the study participant at least twice a week in person or by phone.
Study subjects and their study partners must be able to read and complete study forms.

INCLUSION SEX
Both

EXCLUSION CRITERIA:

Meets DSM IV criteria for dementia.
History of clinically significant medical illness that would interfere with participation in trial, including active malignancy, myocardial infarction, or cerebrovascular accident within the past year.
Alcohol or substance abuse and/or active major psychiatric disorders.
Concurrent participation in a clinical drug trial.
History of mental retardation.

PROHIBITED MEDICATIONS:

Antipsychotic agents. These agents are allowed if low doses are prescribed for reasons other than treatment of psychiatric symptoms, and the doses are stable for at least four weeks prior to screening.
Antiparkinson drugs.
Medications for treatment of dementia.
Antidepressant therapy is acceptable as long as the dosage has been stable for four weeks prior to screening.
Vitamin E in excess of 430 IU per day.

INPATIENT-OUTPATIENT
Outpatient

CONDITION(S) STUDIED
Alzheimer's disease

DESCRIPTION FOR THE PUBLIC
This project will focus on the development and testing of efficient, cost-effective tests and measures that are specifically designed for use in Alzheimer's disease primary prevention trials.

TRIAL SITES:

Birmingham, AL 35294-1150: University of Alabama, Birmingham: Jo Ann Parrish, LPN: Tel: 205-934-6223: jparrish@uab.edu

Sun City, AZ 85351: Sun Health Research Institute: Suhair Stipho, MB, CH B: Tel: 623-875-6516: suhair.stipho@sunhealth.org

Sacramento, CA: University of California, Davis: Bobbi Henk, RN, MSN: Tel: 916-734-6750: barbara.henk@ucdmc.ucdavis.edu

Palo Alto, CA 94304: Stanford/VA Aging Clinical Research Center: Heather Fiedler-Greene, MA: Tel: 650-852-3234: heather.fiedler@stanford.edu

Irvine, CA 92697-4285: University of California, Irvine: Catherine McAdams-Ortiz, RN, MSN: Tel: 949-824-8726: cmcadams@uci.edu

Los Angeles, CA 90095-1769: University of California, Los Angeles: Susan O'Connor, RNC: Not Yet Recruiting: -

LaJolla, CA 92037: University of California, San Diego: Mary Pay, RN, CNP: Tel: 858-622-5800 Fax: 858-622-1017: mpay@ucsd.edu

Los Angeles, CA 90033-1039: University of Southern California: Nansi A. Taggart, RN, BSN, MA: Not Yet Recruiting: -

New Haven, CT 06510: Yale University School of Medicine: Shannon Savarese: Tel: 203-764-8100: shannon.savarese@yale.edu

Washington, DC 20007: Georgetown University: Carolyn Ward, MSPH: Tel: 202-784-6671 Fax: 202-784-4332: cw2@georgetown.edu

Boca Raton, FL: Baumel-Eisner Neuromedical Institute: Fannie Levinson: Tel: 800-755-1999: fannie.levinson@advancecps.com

Fort Lauderdale, FL 33321: Baumel-Eisner Neuromedical Institute: Fannie Levinson: Tel: 800-755-1999: fannie.levinson@advancecps.com

Miami Beach, FL 33154: Baumel-Eisner Neuromedical Institute: Fannie Levinson: Tel: 800-755-1999: fannie.levinson@advancecps.com

Tampa, FL: University of South Florida: Dolina Bois, MA: Tel: 813-974-4355: dbaxte@hsc.usf.edu

Jacksonville, FL: Mayo Clinic, Jacksonville: Francine Parfitt, MSH, CCRC: Not Yet Recruiting: -

Miami Beach, Fl 33140: Wien Center (Miami Beach): Peggy D. Roberts: Tel: 305-674-2424: proberts@msmc.com

Atlanta, GA: Emory University: Lisa Kilpatrick, BS, MS: Tel: 404-728-6590: lkilpat@emory.edu

Chicago, Il: Northwestern University: Laura Herzog, MA: Tel: 312-695-2343: l-herzog@northwestern.edu

Chicago, Il: Rush Alzheimer's Disease Center: Rose Marie Ferraro, LVN, AS: Tel: 312-942-8264: rferraro@rush.edu

Indianapolis, IN 46202: Indiana University Alzheimer's Center: Nicki Coleman RN: Tel: 317-274-1351: ndcolema@iupui.edu

Lexington, KY: University of Kentucky: Kelly Woodall, RN: Tel: 859-257-5562: kswood0@uky.edu

Baltimore, MD: Johns Hopkins University: Cynthia Munro, PhD: Tel: 410-614-7785: cmunro@jhmi.edu

Boston, MA 02115: Brigham and Women's Hospital: Kara Campobasso, MA, PA: Tel: 617-732-7992: kcampobasso@partners.org

Boston, MA: Boston University School of Medicine: Jeri Jewett: Tel: 617-638-5430: mtroth@bu.edu

Ann Arbor, MI: Michigan Alzheimer's Disease Research Center: Linda V. Nyquist, PhD: Tel: 734-936-6078: lnyquist@umich.edu

Rochester, MN: Mayo Alzheimer's Disease Center: Joan McCormick, BSN, RN: Tel: 507-284-7906: mccormick.joan@mayo.edu

St Louis, MO: Washington University: Pamela Millsap, BSN: Tel: 314-286-2363: millsapp@abraxas.wustl.edu

Las Vegas, NV: University of Nevada, Las Vegas: Marie L, Stallbaum, BSN: Tel: 702-671-5021: stallbau@med.unr.edu

New York, NY: Columbia University: Ruth Tejeda, MD: Tel: 212-305-5805: tejedar@sergievsky.cpmc.columbia.edu

New York, NY: Mt. Sinai Medical Center: Adriana DiMatteo, MA: Tel: 212-241-0438: adriana.dimatteo@mssm.edu

New York, NY: New York University School of Medicine: Maria Vlassopoulos: Tel: 212-263-5708: maria.vlassopoulos@.med.nyu.edu

Rochester, NY: University of Rochester: Colleen McCallum, MSW: Tel: 716-760-6574: colleen_mccallum@urmc.rochester.edu

Cleveland, OH: University Hospitals of Cleveland: Nancy A. Slocum, RN, MPH: Tel: 216-844-6328: nas10@po.cwru.edu

Portland, OR: Oregon Health Sciences University: Georgene Siemsen, MS, RN: Not Yet Recruiting: -

Philadelphia, PA: University of Pennsylvania: Kris Gravanda, BA: Tel: 215-349-5903: krisg@mail.med.upenn.edu

Pittsburgh, PA: University of Pittsburgh: Patrick Ketchel, MEd: Tel: 412-692-2721: ketchelpj@msx.upmc.edu

Pawtucket, RI: Memorial Hospital of Rhode Island: Meg Lannon, RN, MS: Tel: 401-729-3750: m_lannon@mhri.org

North Charleston, SC 29406: Medical University of South Carolina: Effie Hatchett, RNC: Tel: 843-740-1592: hatcheer@musc.edu

Dallas, TX: University of Texas Southwestern Medical Center: Robbin Peck, AD: Tel: 214-648-7457: robbin.peck@utsouthwestern.edu

The Gathering Place

I want to take this brief moment to apologize for the recent problems which you all have been encountering while at The Gathering Place. Our chat server has been doing some upgrades and numerous problems have been encountered. We are working with the service provider to get these things fixed up and do appreciate your patience during this time.

Email Bag

From CareVoice@aol.com (Brenda Avadian)

Dear Jane,

I read what you wrote in The Ribbon...WOW, what did the doctor say exactly in 1998? Was the doctor a neurologist or a geriatric physician...or your family doctor?

Jane, given what you write about him I am still not sure...does he still drive when he does the shopping? Given his wish not to admit to the possibility of having AD, for what reason does he believe he is taking Aricept?

Your answer to these questions will help better address the issue of whether you need to tell him or not or even take him back for the results.

Without further information and generically speaking, my bias leans toward learning and then sharing his condition...perhaps you can do it gently and address which of his behaviors might be enhanced by taking Aricept. Considering he has been diagnosed, he may no longer qualify for long term care insurance because the diagnosis is now part of his record (from what I gathered of what you wrote). Yet, he and you should know so that you can move forward with your eyes open. However, his diagnosis must come from a physician who specializes in Gerontology or Neurology to ensure it is an accurate diagnosis. I know of a few people who have been misdiagnosed and it has turned their lives upside down until of course they went to a specialist.

This is all I can offer you now with the information you provided ...beyond this, I encourage you to chat with caregivers who also walk this road from 9 - 11 p.m. ET at The Gathering Place...http://www.theribbon.com/gatherplace/

Smilingly Yours,
Brenda Avadian, M.A.
The Caregiver's Voice
Speaker and Author, Finding the JOY in Alzheimer's:
Caregivers share the JOYFUL times and
"Where's my shoes?" My Father's Walk Through
Alzheimer's (also AVAILABLE in Audiobook,
the German language, and soon "¿Dónde están mis zapatos?"
to be released in Spanish).

From dellingermgt@mindspring.com (Carolyn)

Thank you so much for adding me to the e-mail. I just discovered it yesterday and was so excited and thankful that there is something like this available.

Carolyn

From BJBudy@aol.com (Becky)

Karen, I just wanted to send this to you all so you can see what Creative Memories has done to help with alz. research. I think this is wonderful! I have a few more albums left if anyone is interested in them just email at: BJBudy@aol.com (BJBudy@aol.com)

For the ones that don't know me, I am a friend of MeeMawMoe's and I lost my MIL over a year ago with alz. my FIL has dementia now. My prayers are with you all. Becky

CM Sales News
SXDIR Lyn Johnson, from the Unit News of SUL Barb McCandless News from CM Home Office: In April we had a record-breaking month with sales of over $28 million. 165,840 Triumph albums were sold, raising $330,000 for the Alzheimer's Association.

From CareVoice@aol.com (Brenda Avadian)

Hello Friends, Caregivers, people with Alzheimer's, Drs., Other Health Professionals, etc.

Today, the Alzheimer's Association has released a 29-page report (download as a PDF document) re: the 2002 Alzheimer's Disease costs to Business.
Please access it at www.alz.org and then click on "What's new?" at the top left of the page...and then open it by clicking on the June 26 news release.

It is certainly worth your while to read it...I liked it so much I printed it!

We truly need to get this message out "there" and together we will help many more!

Please visit our new Recipe Corner. There you will find delicious 'family favorite' recipes. Please help add to our collection by submitting one (or more!) of your favorites.

We here at The Ribbon hope you have a safe and wonderful Fourth of July! Remember that the loud noise of fireworks can upset your loved one.

Take good care of yourselves!

Hugs and Peace,
Jamie and Karen