Volume 4, Issue 1 - The Ribbon Newsletter

Symbolizing the way we are all woven together
in our fight against Alzheimer's Disease

Volume 4, Issue 1
July 10, 2000

Dear Ribbon Readers,

Those of you who are receiving this first issue of Vol.4 did so because of your request for subscription to The Ribbon from the web site. In order to get our mailing list up to date it is necessary for us to have these requests on file. We would ask that each and every one of you be in touch with your "buddies", your friends and family and anyone who you know is in need of The Ribbon Information.

All they need to do, if they did NOT receive this first issue, is to go to the web site Subscription - The Ribbon Online at http://www.theribbon.com/subscribe/. If there have been any duplicate mailings, I aplogize. Just send me an e-mail and I will make the corrections.

We thank you all for your support and look forward to a growing mailing list!

Also remember that anyone wishing to include articles, e-mail notes and thoughts, for The Ribbon, please forward them directly to me.....KMenges581@aol.com

Announcement

As we mentioned at the beginning of the year, we are now ready to start sending The Ribbon out by the US Postal Service, you know, what we all now call "snail mail". If you know a friend, family member, or an organization who doesn't have access to a computer and would like to receive this newsletter, have them write to us at the following address:

The Ribbon
1104A Murfreesboro Pike
PMB 114
Nashville, TN 37217-1918

We will be more than happy to share with them. You may also use this address to send in information, questions, or comments. We will always try to include everything as space permits.

Another thing we are working on is becoming a Non-Profit Organization. We have some plans to raise bits of money to help out with printing and mailing costs. We will let you know all about them after all the legal stuff is taken care of. Karen and I love doing The Ribbon so much and we hope to be able to share it with as many people as possible.

Medical News

Exelon is now available for Alzheimer's Disease

Exelon (Rivastigmine Tartrate) is now available of Alzheimer's Disease. Exelon is the first new AD medication in three years. It is used to treat mild to moderate (early to mid stages) Alzheimer's Disease. Exelon has demonstrated efficacy across all key critical domains of AD; daily living, behavior, and cognition. There are some side effects for some people so please ask your doctor to advise you about them. It's important to read the WARNINGS that come with the medicine.

Editor's note: I was lucky enough to talk to a Drug Rep who happened to be calling on my doctor. He said the best thing about this drug is that is can be started in much smaller dosages than Aricept and be increased in smaller dosages. This will help to find the correct dosage without having to deal with the upset stomach so much.

Report questions care for end-stage dementia

A report in the Journal of the American Medical Association states that the concept of recognizing end-stage dementia as terminal and recommending hospice care, focusing on easing discomfort rather than invasive treatment has not gained acceptance since the treatment model was developed 14 years ago. They found that doctors often fail to acknowledge the end stages of Alzheimer's Disease and other dementias as terminal and subject patients to invasive procedures when "comfort care" is more appropriate. These invasive procedures include but are not limited to daily blood tests, X-rays, and catheters. This makes it vital for everyone to have a living will done before they or their loved ones become incapacitated.

Editor's note: This is why we as caregivers should stand up for our loved one. Most doctors will do everything to make a person "well". We all know that when our loved one is in end stage, keeping them as comfortable and as free of pain as we can is the most loving thing we can do.

I was slapping my forehead and going "DUH" as I read this article. It was in the July 5th issue of The Tennessean and it was stated that the article had come out in that day's JAMA. You may be able to look it up.

A Request

An Open Letter To Dementia Caregivers Worldwide

Dear Caregiver,

My name is Simon O'Donovan and I am a senior psychiatric nurse specialising in dementia care and working for Cardiff and Vale NHS Trust, Wales, UK. I am currently undertaking Doctoral Nursing research at the University of Glamorgan in Mid Glamorgan, and my thesis is an investigation of the stresses and problems that carers worldwide experience when caring for a friend or relative with dementia in the community. I am also interested in the factors involved in carers' decisions to relinquish caregiving and admit their loved one to permanent care settings, as well as how services can support continued caring at home.

Already, as part of my study I have interviewed 20 carers face-to-face and now I am at the stage where I need to extend the implementation of my research questionnaires to a wider sample of international carers. This is with the eventual aim that elements of the research questionnaires can be used by dementia care practitioners in community services to assess carers' needs in line with the 'Carers (Recognition and Services) Act, 1996' (applies UK only).

Your participation in my study would involve the completion of either:

Questionnaire 1: Current Community Dementia Carer's Stress & Care-giving Burden Questionnaire - designed for people who act as the main carer for a person with dementia and live with their dependent for all or some of the time, i.e. those still caring in the community, to complete. The only criteria for participation in the study is that your dependent has been diagnosed with dementia for more than one year.

OR

Questionnaire 2: Past Dementia Carer's Retrospective Stress & Care-giving Burden Questionnaire - designed for people who used to act as the main carer for a person with dementia and lived with their dependent for all or some of the time, but have relinquished care within the last year, to complete. The only criteria for participation in the study is that your dependent has been admitted to permanent care within the last year.

Each of these questionnaires takes about 45 minutes to complete (please fill it in off-line to save on 'phone bill costs), and they can be filled in anonymously if you would prefer. There is no other commitment, although your e-mail address will be used to send you an 'Executive Summary' of my report in approximately one and a half years time.

If you do decide to participate in the study I can only thank you most sincerely from the bottom of my heart for your support. I know how busy carers are and how precious time off from caring is, so your spending time in this way is most appreciated and, hopefully, some great good will come from it.

For those of you who decide you cannot spare the time to complete the questionnaire, I fully understand and thank you anyway for giving this request your kind consideration.

Yours sincerely

Simon O'Donovan

Nursing Practice Development Advisor, Older Peoples' Mental Health Services,
Cardiff & Vale NHS Trust, Service Development Team (EMI), Royal Hamadryad
Hospital, Hamadryad Road, Cardiff, Wales, UK. CF10 5UQ

PLEASE VISIT: http://signpostjournal.connect-2.co.uk/dementia.htm

Pet Peeve

I don't know if anyone has run into this problem but it's really bugging me. I have not ordered books or anything else online because I guess I'm still not sure my credit card info will be safe. I still go to the stores to buy things. Well....I have been to several bookstores, Walden Books and Barnes and Noble to name a couple. I go in to find books that have been recommended about Alzheimer's Disease. Guess what I find..one or maybe if I'm lucky two copies of The 36-Hour Day. That's it!!!! I go to the help desk to inquire about others. After much searching through their computer I'm told that the books I want can be ordered.

I get on my soap box at that time, I inform them that there are over 4 million,(and we know that number has grown) people with AD as well as other dementias and there are that many or more caregivers who are searching for information. Why in the world don't they realize they could make some money off of us?? Do they not realize that we want to find out information NOW and not in the 1-2-3 weeks it would take to get the book in? I always ask to speak to a manager and make the request to have "our" books stocked on the shelves. So far it hasn't worked, so....what I'm asking each and everyone of you to do is...go to all the bookstores in your area and get on your soapboxes!!!! Maybe if we can get enough people requesting books on Alzheimer's Disease they will start stocking them in the store.

In Passing: Those We Must Remember

From NOGYCLARKE
dated 2-22-00

Dear Friends,
I now have all the Ribbons in a nice folder to share with someone else. I have to tell you that I lost the love of my life of 53 years on Dec. 14. With all your help he was able to live a comfortable life. The Alzheimers Assoc was very good to me and all the legal help you had on line I was able to make new legal papers and everything has gone well.
I need to tell you that he only had 2 years but in that time he went so fast. Aricept did not stop it. He took to the end but could not talk, I feed him to keep from choking , hospital bed,and all comforts were given by the Insurance. His prayers were answered of his not having to be taken to a care home. He even went to daycarea in the end 3 days a week. Thank Goodness for all his friends who gave him a wonderful farewell with full Military Honors. Family misses terrible but I want to thankyou for so much help of sending me the Ribbon.
Norma Fullerton, Ca.

From I rx pts
dated 4-15-00

I just want to take a moment and thank so many of the gifted people I have been able to have contact with the past years. My mother moved on to heaven on Feb. 22. It was a bright, warm beautiful day in WI. In fact everyday of that week was unusually warm and wonderful. I believe it was a sign of the peace she now had. We miss her terribly, but the good memories are coming to us so strong and the ones of her ill and weak are fading. I think this is what she would want. Again, I thank you for the support and "company" I felt. I send my love and best wishes to you all. You may remove my name from your mailing list. Sadly I know that there will be 3-4 more requests to "take" my place. I pray for a cure daily.
Rita

From PuliDog
dated 4-15-00

Hi, wanted to report the passing of my mom in March. She was only diagnosed with AZ two years ago, but looking back I think she had it about 5 years before. Funny but the AZ did not kill her. She was doing quite well until she began to complain of a back ache. She had sever arthritis and degeneration of the spine and although there was little we could do, I insisted that the doctor be called and perhaps she needed stronger pain medicine. Three days later she awoke disoreinted and quite yellow in color. She was rushed to the hospital to find out she had pancreatic cancer that had already spread to her liver and other organs. The doctors felt that this had only happened within the last three months.

For the first 5 days in the hospital she was still awake and aware although very weak. I spent all my time there with her, when I would leave she would get restless, become combative and call for me. As soon as I got back she calmed down and would go to sleep. She was not eating nor drinking and I had to make decisions that I never thought I would have to make. They told me there was no hope and that she would most likely go quickly. I am so thankful that I was able to make a difference in her life, sit with her, tell her how much I loved her, kiss and hold her we said prayers together and I read from the Bible her favorite verses. She always kissed my hand and although I was the one she blamed all the time, stole her money, locked her away, now she would say, what would I do without you. You have always been the strong one, you do everything for me, I love you so much and always have. Those words will forever been in my mind because I was so hurt by her meanness even though I told myself it was the disease talking. On a Sunday morning I went to church and back to the hospital. She was failing, her kidneys had stopped working and she was so upset and aggitated. I said I am here mom and I will take care of everything. She looked at me with those eyes and said I am so glad because I know you will take care of me. I held her and said she should take a nap and then go home, I promise. She went to slep holding tight onto my hand and then went into a coma. She was in a coma 5 days as I sat by the bedside, saying prayers, talking to her and caressing her saying it was OK, all were waiting for her. On her last day I helped the nurse bathe her, change her clothes and bed, combed her hair, put moisturizer on her feet and back and face. I was not affraid but asked God to please take her home and out of this suffering.

He answered my prayers and when I looked at her she had a smile on her face. Finally she was free and at peace.

I thank the Ribbon and all the people who write in because just knowing that so many others also carry the burden of loved ones with this disease and you are not alone. Do not be affraid and spend as much time as you can with them. They may be angry and say unkind things but somewhere deep inside they do know who they can count on. I feel my mother is with me always, to help and support me.

Pat
Pulidog@aol.com
MiTonka Pulis
Est. 1962

E-Mail Bag

From PG@dbllaw.com
dated 4-5-00

I am interested in any information you may have regarding caregiver info for people with Alzheimer's. My 76 year old mother is approximately a year and a half into Alzheimer's. She progressed quickly and is now at the latter part of Stage Two. If you know of anyone who could e-mail with me or a chat room I could get into for suggestions on how to cope with the daily living needs, I would greatly appreciate it.

My mother lives with me and my family (husband, 13 year old daughter), and our lives are completely chaotic. I work full time and my average day starts at 5:30 a.m. and doesn't end until anywhere between 9:00 and 11:00 p.m. How are caregivers surviving these grueling schedules? I do not have siblings to help me with the caregiving. I currently have my mother in an adult day center Monday thru Friday while I work, but what do you do on the weekends when you would like to go out? Or what do you do for vacations?

Any information or tips would be great. Thanks!
PENNY G.

From Datel123
dated 3-10-00

I literally live from month to month for The Ribbon. I am so sorry for Jamie's loss and it really touched a nerve with me. I stay on the fence regarding my feelings about this disease and have written and had my letters printed each time to The Ribbon. A few months ago I backed away from the Alzheimer's board. I felt I was consumed with this disease and wanted to just work on my book and not respond to questions or relate to anyone on a daily basis. Well, I quickly discovered I couldn't write. Before the words that literally flowed from my soul now seemed to be stiff and sounded so unlike the real way it was. So I didn't write. I have done so much soul searching and I am in the same place I was when this all began. You think that there will be a day of acceptance in your life. One day you will wake up and everything will fall into place and you say to yourself, Why did it take me so long to understand? It doesn't happen that way, it never has, it never will. This disease is so much harder on the families than other fatal diseases. Unless you have lived it, you will never understand. I gave up long ago trying to get others to understand because I finally realized I was beating my head on that brick wall again. You learn to live with the relentless questions, you even learn the way to handle the answers. What you never learn to do is forget. How can we? We all want our lives to be as they were, but they won't and its up to us to face reality. Lately for some unknown reason my mind has been thinking about when he is no longer with me. That is something I, for the life of me know is reality but cannot face. Death has come so close to me this past year and I have never handled it very well. Actually that is an understatement. But to think there will actually come a day when I can no longer see him, regardless of his condition and know that I will never be able to touch him or put my arms around him ever again is unthinkable. My heart can't even stand the thought so when it becomes reality how will I ever be able to let him go? How will I ever be able to wake to a day and know I will never see his smile again or feel his touch? Yesterday on the news I heard that by the year 2040 there will be 40 million with this monster in their lives. Now there is an estimated 4 million. We are regressing with the research or have come to a complete halt. You will never get the general public to understand the devastation that AZ does to the lives it affects. Until your feet have been in those shoes there will be no understanding.

Not only is it an unforgiving disease, it also is one that seems to never let go until it has stripped the person afflicted of every ounce of dignity they ever had and the families are sometimes destroyed. So much of the time the stress of caregiving causes the caregiver's to die first from the relentless stress. Try telling that to someone. The main thing with this particular disease is the guilt we feel. This gut wrenching heartbreak feeling of being unable to do absolutely nothing that will change the chain of events. There is no way to describe the guilt we feel every day of our lives and the looking back at the way we did things and beating ourselves up wondering if somehow we could have done it differently? Would it have changed anything, could we have done a better job, why did we do it that way? I could go on forever with the wondering of, Could I have done something better or different that would have increased the quality of his life? I constantly question the placing. Could I have done something, anything and not placed him when I did? I will never know because I can't change events of the past. At the time it was the only thing that I could do but I will always have to live with the decisions that, not me, but his physician made. I am losing him more and more each day. He refers to me as his mother on a regular basis. When I do allow myself a few weeks away I am consumed with guilt for not being able to maintain my sanity enough to never have to take time away. The way his face lights up when he sees me is the only bright thing I have left with him. The way he holds my hand, like a small child does with his mother and the way he holds me so close and I feel the warmth of his body. I suppose there is really no subject for this rambling. It's just that the thought of him not being here with me someday is beyond anything I can comprehend. There is no love stronger and Alzheimer's will never take that from me. It can take his mind, his body, it can take every tiny thing from me but it can never touch the love I have in my heart for this wonderful man I married.

Dean

From LIZA 513
dated 3-8-00

Memantine Shows Promise In Moderate To Severe Alzheimer's
www.pslgroup.com/dg/16cffa.htm
A recent study has demonstrated significant positive results when using Memantine in patients with moderate to severe Alzheimer's disease.

Alzheimer's Disease Progress Not Affected By Estrogen Replacement Therapy
www.pslgroup.com/dg/16d33e.htm
Researchers have found that estrogen replacement therapy does not seem to have an effect on the progression of Alzheimer's disease.

Delays In Administration of Thrombolytic Drugs More Likely In Elderly Patients
www.pslgroup.com/dg/164cb2.htm
A study has shown that many elderly heart attack patients who need thrombolytic medication do not receive it as promptly as younger patients.

Anti-Parkinson Drug, Requip (Ropinirole), Can Cause Patients To Fall Asleep Without Warning
www.pslgroup.com/dg/1647d2.htm
A warning has been issued by SmithKline Beecham Pharma that ReQuip (ropinirole), a treatment for Parkinson's disease, may cause patients to suddenly fall asleep.

From BigtreeMur
dated 5-11-00

This is to let you know that my web page is finally up and running. It is called, "Incontinence Care and Other Issues Specific to Alzheimer's Disease."

I hope to challenge some of the prevailing attitudes that affect how we caregivers receive and process information. I also know that the one subject everyone needs to talk about and the one subject no one seems to talk about is incontinence care.

Having faced 7 years of incontinence care with my husband, Tom, who died of this disease in 1995, I feel I learned more than I needed to about the bodily functions and feel and almost overwhelming need to reach out to others like myself struggling to deal with this very important subject. I hope you will check me out.

bigtreemurphy.com
I have also included my e-mail and welcome comments. I hope this page will become interactive and I am interested in your stories.
Best wishes,
Beverly Bigtree Murphy author, "He used to be Somebody,"

From Hsyount
dated 4-17-00

I just sent this to Michelle. Then I thought you might want to include this information about the Medicare website:

Michelle, I am so sorry to hear about your father. What a difficult situation for you and for your mother.

My mother has Alzheimer's too. Even though she is in the middle stage and it sounds like your father has jumped into the late stage, I can understand in part your heartbreak. I know you and your mother don't want to consider nursing homes. But if the disease is causing him to be aggressive and potentially violent, you may find it necessary in order to protect your mother. So I wanted to tell you about a website I found.

http://www.medicare.gov/

One of its buttons is Nursing Homes. It includes a listing of nursing homes registered with Medicare, each with the latest federal inspection information. It is a big help to have that information if you find it necessary.

May God bless you as you deal with this terrible disease and give you great compassion for both your mother and your father as well as the peace that passes all understanding, the peace that comes from allowing Him to bear with you your burdens.

In His love (never doubt it),
Rhetta

We hope you will continue to support us and share your ideas, suggestions, questions, poems, and most important, information you have found. Remember what we have always said, The Ribbon is YOUR newsletter. Without you, we cannot continue to weave a ribbon that continues to grow and help others.

We have run out of space this time and we do have a few more emails so they will be included in the next issue.

Hugs and Peace
Karen...KMenges581@aol.com
and
Jamie...DrMOM1955@aol.com