The Ribbon - Care for Caregivers
Volume 6, Issue 11
June 2, 2002


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

The management of The Ribbon have discussed the recent problem we've had to deal with of spam email and virus possibilities in attachments to the email. From this point forward, The Ribbon and TheRibbon.com will not accept any emails with attachments unless the sender is known. If the readers would like to point out a particular web link or share thoughts, they must be done in the body of the email. If your thoughts are exceedingly long, then please break up the email into sections and send. We apologize for any inconvenience, however, we need to protect our personal computing systems. We at The Ribbon are not subsidized in any way; meaning all repair costs or system replacement costs will be at our own expense. I am sure our readership can appreciate and understand this policy change. We enjoy providing the newletter to you and wish to do so in a completely safe manner.

The Ribbon Staff appreciates your assistance!


The Ribbon is Number 1 !!!!

In a recent issue of The Ribbon we highlighted Brenda Parris Sibley's web site, A Year To Remember and the Top Alzheimer's/Caregiving Sites web site, Top Alzheimer's/Caregiving Sites, brought to you by A Year to Remember (http://new.topsitelists.com/bestsites/bpsibley/topsites.html). That list has continued to grow and now has over 135 wonderful and informative web sites relating to caregiving.

We are happy to report that The Ribbon is in the Number 1 position! This list will continue through the year and while the numbers may shift, and the end result may be different, we are there now. The Ribbon staff is very proud of this acknowledgment and thank all of our readers for their support.

We began The Ribbon in January, 1998 with a staff of 3 people, who had never met in person, all in different parts of the country. Our initial motivation was to help other caregivers. But in doing so, we have helped ourselves to cope with an illness that dominates our lives. We have added more staff, a web site (about to turn 24,000 hits!) where we have a book store, an online store, a chat room, a Recipe Corner and so much more.

We had no idea, back in '98, of the far reaching effects of this would be. And today, as we look back, we are all truly amazed. And we thank you all. For reaching out and sharing, for writing articles for the newsletter, for telling us how much The Ribbon helps you in your struggles.

As with so many things in life, it is the small things that add up to make a difference. And you all have made a difference in our lives. You have given us many lessons in love, patience and determination as you share your stories with us.

Regardless of whereThe Ribbon is placed when the year is over, we know that it is number 1 with all of our readers.

The Ribbon Staff


Before I Forget

The PWID's Perspective

To who is may concern, Alzheimer's Association Safe Return St Louis MO.,

I wonted to say thank you for our conversation on the phone concerning adding Auggie to my Safe Return information. By doing so it gives me so much more confidants in my freedom as I move about with this awful disease. From a penitence point of view, the wandering and becoming lost or confused and not being found in a reasonable time frame, is the biggest fear I have as I take this journey threw the Alzheimer's.

It seems as if, often enough when I am reading from the newspapers or the Alzheimer's Daily News I receive by e-mail each day, someone has wandered away from a safe environment, became confused, lost and not found till the body was discovered at a much later date. In most cases it seemed the lost person starved to death from not being found in reasonable time, or meet some other dreadful death that most people not experiencing Alzheimer's, could ever imagine in there minds happening to them.

Realizing this is a very real possibility with anyone person who may be traveling threw this disease, I feel time in finding the lost person once they have been discovered to be missing is of the most vital interest to all concerned with any search efforts being conducted. To any one person joining in such a search, I feel identification and description of the lost person would be the most important information any such search would require.

After studding as much as possible about wanders and there episodes, the highest probable instances seem to occur in the penitents on home area or if they are away from home and in a strange environment not familiar to them. All of which makes one who has been diagnosed with such a disease as Alzheimer's and still in good mind, extremely fearful of what the future holds for them. This fear makes one feel that the only security in his or her safety, is confinement at home and hoping one doesn't wander out the door without a caregiver taken notice of there actions being taken. Often it makes one feel as if they where sentenced jail or prison for the remainder of there life and the only offense committed was being diagnosed with Alzheimer's.

The caregivers and in my case, my spouse Vicki of thirty years, who loves me dearly as I do her, are often in denial till an episode happens to there loved one. Always after the fact they wish they had of taken all of the precautions possible to prevent such form happening, but now that it has happened it is too late to go back to correct any mistakes. Of course now that a family has experienced an episode of wandering by a loved one, the shock and realization of how this can happen to there loved one becomes very real to the caregiver. Hopefully instead of ending in death and the love one is found in reasonable time, the denial becomes a reality and instantly all concerned start there search of how to prevent it from occurring in the future. Doing so can get ones head so bloody form beating it against the walls he or she will encounter for their efforts.

Very soon they begin to realize there is very little one can to in the prevention before a wandering experience happens. Mostly, all answers found are concerning after the experience has happened and the search and rescue efforts are well on three way. An accurate description of the patient such as the cloths he or she may be wearing at the time, size, and facial features all of which could fit any number of people and especially in a large crowd is what is needed at this time. In a large crowed situation such as airports, malls, restaurants, sporting events, parks, and hospitals or any other such situation, these descriptions could fit any number of people, gravely slowing down any search and rescue efforts being conducted.

Time and description being the most important concern at this moment, there should be a better way of speeding the rescue up and an description of the missing patients that would be easily recognized in any large crowd disguising them apart from anyone else fitting the description the rescuers would be searching for.

Short of having to dress up in my Alzheimer's prison uniform with the large striped paints, coming in the only colors of black and white and putting a large sign around my neck, stating I am an Alzheimer's prisoner and by my presence being here alone, it is a grave danger to my life. Distinguishing myself from others who may in the large crowd is extremely hard to do. I feel by carrying such a sign around my neck and wearing my prison uniform and suffering the humiliation from doing so, this is about all any Alzheimer's patent in reasonable mind can offer, in the way of a better and accurate description to any rescuer's searching for himself or herself if a wandering experience should happen.

By being able to add Auggie to my Safe Return information and knowing how if I should occur a wandering experience, the description of myself being escorted by a large red Irish Setter at my side would disguising myself from any one else in a large crowd and any rescuer should be able to locate me quickly. As I would be the only person in such a location with a large red Irish Setter escorting him or herself as they wandered hopelessly.

By the Americans With a Disabilities Act passed by the Congress in 1996. It can be found at http://www.usdoj.gov/crt/ada/animal.htm on the Internet. Any person with such a disability as Alzheimer's Disease and the treats of life it presents, the confinement one feels, and loneliness one suffers as well as humiliations from the imprisonment it brings, a service dog is one of our only answers to the prevention of wandering before it takes place. The ADA can be contacted at their toll free number at 1-800-949-4232. With Alzheimer's Disease and the disability it presents ADA recognizes working dogs for all Alzheimer's patients. I highly recommend anyone being diagnosed with Alzheimer's Disease taking advantage of the benefits of a service dog or animal. By you adding Auggie to my information being stored by Safe Return, I feel a new freedom about me being able to continue my quality of life as my disease progress.

Delta Society, the Human-Animal Health Connection located on the Internet, is one of the most recognized help links in working dogs, obtaining help in their training, and how to obtain a working dog, also all of the legal laws from the Federal statute of The Americans With a Disability Act are found at this site. info@deltasociety.org

I FEEL AS IF I CAN RIP OFF MY PRISON UNIFORM AND ENTER THE PUBLIC ONCE AGAIN. BE ABLE TO OFFER A DISCRIPTION OF MYSELF TO ANY ONE CONCERNED. RESTOREING CONFIDENCE IN THE FACT I MAY BE FOUND IN RESONABLE TIME IF I SHOULD WANDER OFF, BECOMING LOST AND NOT FOUND TILL THE SMELL OF ME DECEASEED CORPS IS DISCORVERED.

Now with the new heightened security in our nation form the recent events of September the 11th 2001 I have found that as Auggie and I enter a mall, sporting event, airport, or any such place with large crowds, the first thing to happen is we both are approached by security concerning Auggie's presence. Under the Americans Disabilities Act, I present the security officer with Auggie's business card.

Instantly, upon presentations of this card to any security concerned it offers the information required for them to recognize and honor his presence's and gives them an explanation as to what my situation is and why Auggie is by my side. Always as I have found this new freedom in being able to continue my quality of life as I do my daily travels, Auggie and I both have been most welcomed anywhere we go. Not to mention the peace of mind it offers to my wife and other family members concerned about me wandering off into outer space and not having an instant, accurate description that sets myself apart form anyone else in a large crowd, that any search and rescue would require if my mind should begin wandering, and confusion started to set in.

Instantly upon receiving this card, the whole security force is contacted by way of radio from the recipient that a working dog is in their pretences. By doing so I get a feel of security that at least the recipient of the business card is aware of the possibilities that Alzheimer's could present as well as any other security personal I may come in contact with as I travel threw. I feel all of the people, who have laid eyes on Auggie and I, are aware of my location, as I am the only one in the crowd with a large Irish Setter by my side. As I am making it to my destination Auggie's presence draws so much attention from his presence's of being allowed in a place where dogs are normally not seen that I know if anyone should be asked as to the whereabouts of the person with the large Irish Setter by his side, instantly I know my location could be explained to anyone concerned.

The two most recent events that come to my mind are the lady at the Dallas Airport who is still missing and presumed dead and the gentleman in Canada visiting his local hospital for a routine visit, becoming confused, lost and found weeks later in a air vent shaft, deceased from a death to horrible to think of by anyone in there sound mind. As I think of the possibility of myself becoming trapped in a similar situation, would the dog at the airport make me more visible? If it did could the local security locate me more quickly and would anyone else be able to supply information as to my whereabouts, because of the eye contact being made as we traveled threw the crowded airport. Would the dog let me crawl up an air vent shaft with his leash attached to my arm? If he did. Would he still be standing they're trying desperately to create a scene to alert any would be person searching for me as to my whereabouts?

In sound mind I would certainly have to believe that of the unfortunate soles suffering from this disease mentioned above, surly they would not have come to such of a death as they did. As also the many numerous cases mentioned almost weekly in our newspapers across America resulting in a similar deaths, I just have to believe the outcome would have been so different with an assistance dog faithfully standing by there side at all times.

I have only had Auggie for four weeks as of this writing and already I am feeling so much more confident about my ability to put the best fight up to insure the quality of my life for as long as I can. In my search for the perfect animal to accomplish the goals I desired, I went to the Internet. They're several sites where instantly available as to where I may find just the perfect animal for me. I explored it well, till I decided on doing as much as I could to find one in an abused animals rescue shelter.

My reasons where simple I needed someone other than my personal experience, which understood dogs and there personalities and anyone with a history of working with abused animals surely would be the one who could help in the selection I was about to make. I needed a dog who could be well leashed trained to set, stay, lay down by my feet when ever we stop walking, not shy of people or being in traffic and loved children and adults as well. In less then two weeks I had found Auggie in an abused shelter in Huntsville, Alabama. As soon as I spoke with the shelter's master and I realized Auggie had all of the qualities I was looking for and the head master had all of the credentials I thought where required to insure me I was making the perfect choice, Auggie and I where soon on our home.

As I have learned in the recent weeks there are so many things Auggie can be taught that would assist me and my caregiver, Vicki as my disease progress over time. From keeping up with, did I or did I not take my medications today, alerting a caregiver if I should start out a door or even preventing me going out a door if a caregiver is not present, pulling a wheelchair, turning on and off light switches when required and so many other important chores. A well-trained animal, such as a Seeing Eye dog can be trained to travel the same path each day as he and his master enjoy a daily walk. The animal will not let his mater deviate from the chosen path, therefor giving the patient the freedom and independence each deserves with out the presence of a caregiver. Even the companionship and love Auggie has displayed in return for the love and attention given to him has been the best medication since being prescribed Aricept and Zoloft by my neurologist. The security I get from his presence at my side at all times and the movement it allows me as I go about my daily routines can't not be explained in words but only in the love and devotion Auggie shows in wanting to be of service to his master.

As we all know, upon being diagnosed with any disease such as Alzheimer's friends from the past and present suddenly disappear quickly out of the fear it may be contagious or they them self may get cough in the caregiver responsibilities. Auggie and my wife, I know will be there when the last breath is drawn. The therapy received from this fact alone is enough to make an Alzheimer's journey almost bearable.

The chemical imbalance that comes with Alzheimer's disease creates enough depression. The thought of the confinement it will bring and how it robs one of his or hers own dignity is a depression we don't have to live with. There is so many ways we as Alzheimer's patience's can fight to restore our on dignity and be as normal as possible for as long as we can and certainly one would be the love and affection of a animal as it helps in our daily routines performing task we may not be able to perform for ourselves.

I feel that others going threw this journey, patients and caregivers alike could receive as much benefit form a working dog such as Auggie as I have, if only they knew of the availability and possibility of it as well as ease of obtaining a dog for them self.

By Safe Returns endorsement of Auggie by adding him to my information it restores my faith in the possibility as well as confidence that the other four million American Alzheimer's patients can improve there quality of life as well.

Best Regards with hopes of improving the quality of life for all Alzheimer's patients

Larry Joe Summers Sr.

Editor's Note: We join in thanking The Alzheimer's Association and The Safe Return Program for adding Working Dogs to the Safe Return Information!! A suggestion also recommended by one of the ladies at DASNI is to train your dog to lead you home. She lives in a rural area and has had good success with her canine companion. My apologies for not remembering just who this is.


In Passing: Those We Must Remember

Dated 5/23/2002

It is with deep regret that I write to share with you that I received an email from a GP member telling me the JDD1953, or Margaret or Marge, lost her mother last night at 7:54 p.m. EST.

The email states Margaret is doing ok and has a lot of friends and family around. The email goes on to state her mom had been in hospice and had been in a coma state for almost a week.

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

Love Always,
Linda

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)


Encouraging Caregivers

by Mary Emma Allen

I've found it rewarding to share my mother's story through my book, "When We Become the Parent to Our Parents, and encourage caregivers. I know Mother would be pleased her sister's and her lives would inspire others. Both had Alzheimer's disease and I was involved in their care.

It's especially rewarding when I can speak with caregivers, answer their questions, and give them hope that they can survive this experience with their family member...and bring their parent, spouse, or sibling joy.

I was asked to speak at an assisted living home when in St. Augustine, FL recently and had the opportunity to chat with many family members afterwards. My husband Jim often attends with me, since he was my support while caring for Mother and Auntie. We also are involved in caring for his mom. Even though she doesn't have Alzheimer's, she's had to give up some of her independence and live in an assisted living home.

Caregiving can be an exhausting, discouraging, and bittersweet experience. Yet it can be very rewarding as we learn to enjoy a family member in this new phase of their life.

Sharing our experiences in an attempt to encourage others helps answer the "Why?" we often ask ourselves when we're going through some of life's trials. It makes us stronger to help lift up others.

(c)2002


(Mary Emma Allen writes and speaks about Alzheimer's and caregiving to encourage others and help them through this often very trying phase of life. In addition to writing "When We Become the Parent to Our Parents,"

Mary Emma has stories in "Finding the Joy in Alzheimer's" by Brenda
Avadian for North Star Books.

Visit her web site: http://homepage.fcgnetworks.net/jetent/mea;
e-mail: me.allen@juno.com)


A Full Deck of Discount Drug Cards

  • Together RX Card
    • Companies: GlaxoSmithKline, Bristol-Myers Squibb Co., Novartis, Abbott Laboratories, Aventis, Johnson & Johnson, AstraZeneca
    • Information: (800) 865-7211
    • Announced: April 2002
    • Roll-out: June 2002
    • Participants: Not Available
    • Benefits: Purported savings of 20% to 40% on 130 to 150 brand name drugs produced by the companies.
    • Fees: None
    • Eligibility: For Medicare recipients with no prescription drug coverage. Income less than $28,000 annually for singles, $38,000 for couples.


  • Orange Card
    • Companies: GlaxoSmithKline
    • Information: (888) 672-6436
    • Announced: October 2001
    • Roll-out: January 2002
    • Participants: 55,000
    • Benefits: Purported savings of 30%, on average, on a variety of the company's drugs.
    • Fees: None
    • Eligibility: Annual income at or below $26,000 (singles) and $35,000 (couples). Cannot have public or private insurance or other drug benefit programs, such as Medicaid.


  • Living Share Card
    • Companies: Pfizer
    • Information: (800) 717-6005
    • Announced: January 2002
    • Roll-out: January 2002
    • Participants: 80,000
    • Benefits: Low-income and disabled Medicare recipients can get any Pfizer drug for $15 a month.
    • Fees: None
    • Eligibility: Unless disabled, annual income must be less than $18,000 for singles, $24,000 for couples.


  • LillyAnswers Card
    • Companies: Eli Lilly
    • Information: (877) RXLILLY
    • Announced: March 2002
    • Roll-out: March 2002
    • Participants: Not available
    • Benefits: Low-income and disabled Medicare recipients can buy most Lilly prescription products and insulin for $12.
    • Fees: None
    • Eligibility: Annual income must be less than $18,000 for singles or $24,000 for couples. Must not have any other prescription drug coverage.


  • Merck Patient Assistance Program
    • Companies: Merck & Co.
    • Information: (800) 727-5400
    • Announced: 50 years ago
    • Roll-out: 50 years ago
    • Participants: 350,000
    • Benefits: Free medications shipped directly to homes for up to one year; all Merck products except vaccines and injectable drugs.
    • Fees: None
    • Eligibility: Any patient of any age who lacks drug coverage. Income must be less than $18,000 for singles and less than $24,000 for a household.


  • Walgreens Senior Dividends Card
    • Companies: Walgreens
    • Information: Available at any Walgreens pharmacy.
    • Announced: March 2002
    • Roll-out: March 2002
    • Participants: Not available
    • Benefits: Technically not a discount card. A 10% rebate on the price of the drug purchased is added to the card, which can be used for purchases at Walgreens.
    • Fees: None
    • Eligibility: For people 55 and older who don't have drug coverage and don't participate in a government assistance plan.


  • AARP Prescription Savings Card
    • Companies: Pharmaceutical companies, Walgreens, AARP
    • Information: (800) 289-6031
    • Announced: 1959
    • Roll-out: 1959
    • Participants: 3.5 million enrolled in Health Care Options
    • Benefits: Savings of 15% on brand-name drugs and 50% to 55% on mail-order generics
    • Fees: None.
    • Eligibility: AARP members and their spouses.


From andy.holmes@medunite.com


Top Alzheimer's Caregiving Websites:
Alzheimer's Support on MSN

A lively message board and more than 1700 members make the Alzheimer's Support community on MSN a valuable support site for those seriously interested in dementia care issues. They focus on caregiver support. 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 with a request for a feature on issues related to dementia/care giving. All the details, including sample letters, can be found on their site: Alzheimer's Support
http://communities.msn.com/AlzheimersSupport/page.msnw
Details regarding the "Awareness Mission" are listed on the links to the left of the Home Page.


From the Recipe Corner

We have added one new recipe
Asparagus Impossible Pie

This is seems to be a very busy time for everyone, children finishing up the school year, vacations starting, and of course June weddings.

Helpful Hint.
Print some of the recipes from the Recipe Corner, put them in pretty binder, tie some wooden spoons to the binder, and give it to the new bride. (Or anyone else you need a gift for.)

Keep sending the recipes, and thank you for all the nice notes.
Micki Slattery
Food Editor


Links

More than 4 million people in the U.S. are afflicted with dementia, with Alzheimer's Disease being the most common form. Deciding when to limit or stop driving can be a confusing issue for individuals diagnosed with dementia and their caregivers. Earlier diagnosis and better medications may allow people to drive longer, further complicating the decision. Most information about dementia warns against driving, but does not describe when or how to stop. The Hartford Financial Services Group, Inc., the MIT Age Lab and Connecticut Community Care, Inc., have developed a guide to Alzheimer's Disease, Dementia and Driving as a tool to help individuals and caregivers determine when it is time to stop driving.

Alzheimers, Dementia & Driving
[www.thehartford.com/alzheimers/]

This site is great. It has several forms that you can print out such as the Driver's with Dementia worksheet, and the Agreement about Driving form.


Email Bag

From KJIL@aol.com

Dear Karen And Jamie,
It will be two years on June 27th that my Mom Rosemary passed. I have continued to read The Ribbon and have passed on valuable information and the links to several of my friends.
I have just gone into the Dedication Garden and read my dedication to my Mom and have decided that I must pass my subscription to The Ribbon onto someone in true need.
Thank you for helping me through the rough times. Keep up your marvelous work.
With gratefulness,
Kate


From Phylliskasper@aol.com

I appreciate being put on The Ribbon. I need to talk with people who are in the same situation but my husband is very jealous of the computer and any time I put on it. Same with telephone so in other words he is shutting me down from the out-side world. He and I get in the car and drive every day - just to get out of house. (I'm driving of course) and the house is a mess as I can't devote much time to it. I have tried to arrange a person to come in 4 hrs. a week through Passport but their funds may not be renewed in June. We have 3 sons - none who live too near us and I am an only child. This started coming on 5 yrs. ago and has, of course, gotten progressively worse. Nine years is a long time with your Mother. My thoughts and prayers are with all caregivers and their loved ones. Phyllis


As Always, We Wish You
Hugs and Peace,
Karen and Jamie

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