This is our place to post news of our progress. First, send your message to the caregivers army support
group if you are a member, otherwise, send your message to Service , and it
will be posted here, possibly edited for emphasis.
The caregiver's Army has been written up in many publications including:
A copy of Carolyn's book "Poetry From The Heart By an Alzheimer's Caregiver" was generously donated to the Ronald Reagan Memorial Library.
What Alzheimer's Victims Should Know by Dr. Franklin Cassel
This is what I propose to call my new Video. I believe it would be helpful for caregivers in assisting their patients to understand what is happening to them and to give them some hope as they learn to cope with a condition that has no cure I am of the strong feeling that Alzheimers? Disease victims should know enough about the disease so as to have some understanding as to what is happening to them. Denial and holding false hopes that it is not Alzheimer?s only delays the possibility of effectively coping with this dread disease. My discussion today with my son-in-law, Larry, a Jew who became a Christian because of Peggy's Alzheimer's, and with Jeff, Peggy's nephew whose mother, Peggy's sister, now has the disease, resulted in my having some questions regarding this approach .
I would very much like to have each of you share with me you reaction to this proposal. Do you think it would be helpful to new caregivers in assisting their patient understand their situation and how to cope it? Is it too detailed? What would you add in ways to cope? What other suggestions do you have?
To the patient who has been diagnosed with Alzheimer's Dementia I say you have a condition which there is no cure. Hopefully in the not to distant future they will find the answer to this problem. Your best hope is in learning enough about the disease so as to understand what is happening to you and how to cope with it. You are not alone with this problem. It is true that Alzheimer's is one of our nations great problems with over four million persons effected by it. One out of ten persons over 65 years old is effected by it, so you are not alone It is estimated that the cost of this disease exceeds ninety five billion dollars since most victims soon are unable to work, and soon after that they require complete care. The caregiver then becomes the second victim providing care 24hr a day, 7days a week and is no longer productive in the work force.
You also must know that you are not alone in coping with this illness.. You have loved ones and an ever increasing number of compassionate caregivers who are there to help you. None will blame you for your shortcomings and all will be ready to help you with those things you can no longer do. They will continue to make you feel loved and still important, making great sacrifices for you.
To date there is no cure and no medicine that provides long term control. Knowing how to accept dependence on others for your care and how to respond to that care is vital for you, the victim. Knowing what constitutes good care and how to provide it is vital for the caregiver.
You have been diagnosed with Alzheimer's type dementia and your inclination is to deny it. You want it not to be so, yet you are aware that something is happening to you. We will not argue with you about it or try to persuade you. You will need to come to that conclusion yourself as you learn about the disease and as you sense the changes taking place in your life.. The most important thing for you to know, and for your caregiver to remember, is that in no way are you to be blamed for what is happening to you. It is Alzheimer's that is to be blamed. You need not feel guilt or shame. Your loved ones and caregivers will always be understanding .
How do I know about this? My own experience, shared experiences of others on the Internet and searching the Web has taught me a lot and given me strong feelings as to what you need to do.
Peggy was my wife of fifty-five years when? she was diagnosed with Alzheimer's. We cared for her in our cottage, here at Brethren Village, for about two and one half years, until she had a second seizure and was no longer able to walk. She had to be admitted to the Village nursing center. She followed a fairly typical
Alzheimer's course with down hill deterioration and eventual death after a total of eight years.
This is the average time with cases lasting from two to twenty years. Living here at the village I was able to spend much time with Peggy and I learned a lot about her disease and what is required for good care
Why do I believe that you should realize that you have Alzheimer's Dementia? You no doubt have been increasingly aware that you have trouble finding words, finishing thoughts, following directions, remembering names or other information and getting lost. Confusion, frustration and agitation are your lot. You have increasing trouble finishing tasks and making decisions seems impossible.
All of this is dementia, but is it Alzheimer's? There is no simple test for Alzheimer's There are a number of other types of dementia with memory loss, such as stroke, brain tumour, vascular changes, medicine's side effects. vitamin deficiencies , etc. A battery of tests and careful evaluation by a neurologist is necessary to rule out all other possible causes for the dementia before a diagnosis of Alzheimer's can be made. Careful evaluation is important since some of the causes for dementia can be cured.
If you have not had such an evaluation it surely should be so that you may know exactly what is going on. If this evaluation has been done and Alzheimer's is the most likely diagnosis, then you must know that there is at present no cure and no medicine or treatment that will stop what is happening to you. You should learn as much as you can about this disease so that you will have some understanding about what is happening to you. You will do best if you accept it and learn what it takes to effectively cope with that which is happening to you. At this point learning to accept the help of others is most important as you develop a love trust relationship with your caregivers. Remember they will not be blaming you when they think you are saying are doing something wrong. They will blame Alzheimer's Your inability to create any new memory will bring about many changes in your life. Being aware of this and having some idea as to what to expect will give you opportunity to plan and cope with your future.
With the first stage the Alzheimer's victim will find increasing problems with:
During this stage you may:
Do any of these sound familiar to you?
As your disease progresses you may find yourself :
With the late stages you may not be able to:
This is a grim picture indeed, but it is a reality that you must face.. It does no good to deny it or to hold false hopes. Your loved ones and caregivers will not blame you and you need not feel guilt or shame as you cannot be blamed for any of it. It is Alzheimer's that takes all the blame. You are loved as ever and still important.
So how do you adjust to life's realities, to the significant limitations you now face and more in the future? Life will not be too bad as there are loved ones and caregivers willing to step in and provide for you and make up for your loss. You need to acknowledge your shortcomings and gracefully accept others doing for you what you no longer can do your self.. You need to develop a love trust relationship and depend on others for judgment and decisions
Laura, Thank you so much. Also forgot to tell you I sent an Article about the Caregivers Army to the Today's Caregivers Magazine and Kate the editor of the magazine received it and likes it. Will let me know when it will be in the magazine isn't that exciting news. Wow good things will happen this year for sure. Si, si, si, LADYDOVE
friends, Here is some useful information and some statistics about AD. It
seems that African-Americans and Latinos are at a higher risk of having
this disease and Japanese are at risk only if they immigrate to the United
States?? Isn't that interesting?
Hi Everyone!!!! I just now managed to successfully add this page to the official caregiversarmy.org website :) Watch for updates here and on the CAREGIVERsARMY e-mail list......
From: Bob Sanchez <email@example.com>
A short article about the Caregiver's Army appeared in the December issue of the Arizona Senior World. The article invites people to join the Army, and gives the URLs. It also gives directions for contacting me (in Arizona) or Carolyn (in Ohio).
DEC. 12, '99From: "Janiece Chisholm" <firstname.lastname@example.org>
Regarding the new vaccine to be tested. According to the UCSD Alzheimer Research Center Annual Meeting discussion that it will be tested on humans this coming year. They do have to find out what type of side effects could cause problems. The slides they showed were amazing. After the vaccine was administered to mice the brain was tangle free and even better than a healthy brain. It was truly amazing. I only hope they will be able to administer this vaccine and that it does not cause serious side effects. I think we can be a little optimistic. It not only prevented the disease but reversed the disease. I do not want to raise false hope, but I do want to have hope. Jan
DEC 11, '99...FRANKLIN CASSELL wrote:
Flecher Farrar, Editor Messenger
I would be happy if you could help us get our million signatures by giving us some exposure in the Messenger. Perhaps in the Letter Column Maybe something like the following.
The Alzheimer's Disease Caregiver's Army has launched a worldwide petition drive in support of finding a cure for Alzheimer's Disease. There are over four million sufferers of this disease in our country, with an equal number of caregivers, the second victims of this terrible disease. Researching the cause and cure offers our best hope.
Our goal is to collect one million signatures on a petition requesting Congress to appropriate $500 million for Alzheimer's research, to be hand delivered September 2000.
I have been enlisting the help of the churches in my area in getting as many signatures as possible. I would like to expand my effort by enlisting others concerned about this problem. I will send a packet with the petition and instructions to any one, any where, who would be willing to share in this project. Contact me here at Brethren Village
Franklin K. Cassel
3001 Lititz Pike Lancaster, PA 17606-5093
e-mail: email@example.com , phone: 717-569-2123
11, '99....BOB SANCHEZ wrote: I give full time care to my Beverly and am
unable to do much of anything else, so I try to recruit family. My daughters
in Tucson and in Salt Lake City are distributing petitions to nursing homes.
My son in Los Angeles is a firefighter & paramedic, and has petitions
in many fire stations around LA. I've sent petitions to other friends in
San Diego, and to Bev's family members in Kansas. I'm also trying to get
a couple of local churches here in Tucson involved. I wrote an article about
the Army that is now being distributed in the December edition of the Arizona
Senior News. We need to be the voices of our loved ones, and to do everything
possible to help them and to fight this horrible disease. The ARMY will
be an important part of the new millennium, and I am proud to be part of
DEC. 10,'99...JANIECE CHISHOLM wrote: We had a very interesting afternoon I would like to share with you all. Today was the University of California, San Diego Alzheimer Research Center's Annual meeting. Of all the various studies that have been going on this past year the most exciting report was about the vaccine being developed. The tissue of the brain of a mouse was completely clear of tangles. They will start human testing and hopefully learn if there are serious side effects. To think that something could reverse and prevent his horror is just mind-boggling and hopefully we will be reading about some wonderful news in the year ahead. Wouldn't it be exciting to see the cure or prevention in our lifetime? It looks hopeful.
DEC. 10, '99...To: CAREGIVERSARMY@onelist.com From: Denise M Norris <firstname.lastname@example.org> To Laura and The Caregivers Army progress reports: from CAROLYN HAYNALI:
Articles have been put in my local papers, plus the school newsletters and the Senior News also they are running a form for people to sign the petition and send in till September 2000. That's great news. Will be calling Deaconess Hospital in Cincinnati today for them to put it in there Newsletter called the Pulse. The petition is out in the hospitals, nursing homes and I'm not sure where else it's ending up. My church has it an other churches around me.
I go to Wal-Mart and set in the Snack Bar and collect names, different restaurants that I go to. I want to thank Bill the manager and Jim the owner of Demetrio's Family Restaurant good home cooking and good service. For letting me set there and get names any time I want to. I want to mention the kindness that they have both shown me as I ask people to sign the petition. Of course I wait till they are done eating or get them as they come in or leave. I had collected around 60 names just yesterday. Will go there again today......
Also got names at Denny's, Cookers, Pizza Hut, Dino's, Amish Country, Wal-Mart, My insurance company, Youngstown Buick, Columbiana Buick, Doctors office, Giant Eagle's will let me stand out in the Lobby of the store in January, Gas station, every place I go I see people as potential signers.
I have over 2000 names and still counting when I get home, that's not counting what comes in from the other Soldiers or on the Web site so I feel we are really on the move.
Sent letters to Ohio Governor, Ohio Senators, and Ohio Federal Congressmen, The Federal Congressmen's office made contact with me but right now I'm not home about mention it on his TV program that airs every Sunday. AARP letter, Desert News Utah, Ohio Veterans Home Alzheimer's unit, nursing homes, Casual Carpets, That's all I can remember for right now but the news of the Caregivers Army Petition is being heard we have a voice now. I just love what is happening with the Caregivers Army and we will have a new and bigger site easy access to.
Great Laura can't wait till it's finished. I know the Lord will give you the strength you need to work on this site this is God's timing. Can we also have a sounding board (War zone) to voice our troubles. Please say yes, yes, yes,
Will be writing an article for the Today Caregivers Magazine has to be in by January 10, 2000. Spoke at General Motor's 1714 retirees, Hearing Care Center, Highway Church seniors group.
My public high school wants me to come to a board meeting and tell them what I am doing an maybe have a session with the children and speak about Alzheimer's, also have schedule in February at General Motors Retirees 1112, and pre retirees 1714, Senior's church groups in January. So my work is cut out for me and I will do all I can to get the news out about the Caregivers Army.
Most of these people are not on the Internet and would never be able to sign the petition. It's very important to reach these people also. There are Caregivers out there that are lost and hurting. If I didn't have the computer to turn to I don't know what would have happen to me. I found support and a lot of great people who have help me along my journey and are still there for me when I need them. Caregivers need someone to listen and to love then and know that they are not the only ones going through this nightmare. Caregivers are lonely, stressed and not really appreciated for what they are doing. Things will change you will see.
Listen to there cry for help so let's all of us stand together and be supportive to one another. I have said all that to say this, my concern is for our love ones and the future children and grandchildren. We can make a difference if we band together and FIGHT FOR OUR RIGHTS AS CAREGIVERS. We didn't ask to be put into this situation but we are in it anyways so lets do whatever we can. Love you and God Bless Ladydove , <Deniseemail@example.com>
From: fkcassel <firstname.lastname@example.org>
Dear Carolyn: It sounds as though you are getting Chuck settled into a situation where he can be made to feel secure and still loved and important. I do hope it works out well.
I have about 100 petitions out for others to get signatures. My goal is 5000 or more signatures.
I continue to work on videos to help patients understand what is happening to them and to accept the diagnosis, and one to be made by the family with pictures, movies, slides etc. to keep alive the good things in his or her past. The latter could be used for nurses and aides to become acquainted with the patient to better care for them, and for the patient to keep the past memory alive. It would be a good conversation piece for visitors. I would welcome comments and help from all Army members.
Keep faith and God bless Franklin
Time: Tue, 07-Dec-1999 14:52:32 GMT IP: 188.8.131.52 From Harriet Love.....
Subject: Boardroom: Aftershock
I am a caregiver to my husband Bob. I was at passage and Alzheimers.com.
I was offline from late August to about the 3rd week of November. When I
was able to get back on, the passage was gone and I could no longer get
into Alzheimers.com. But out of the dust comes Carolyn with this invitation
to the caregivers army. There is no way I could resist this! A collective
voice willing to stand up to congress and whomever else!!?!! Count me in.
Those of my friends I see here, I would like to tell you I was "email@example.com"
and am the same crazy lady! I miss you all and hope that all is well. Sometimes
God tears down in order to build anew! As for Bob, he is in a Nursing Home
in Tampa, Fl. He made the adjustment with no problem! I miss him! I will
move the second week in Jan 2000. I will send you all my new email there.
All things new..... Love ya: Harriett Love
The Deseret News in Salt Lake City (Utah) wants to write an article about the Caregiver's Army (http://www.ycsi.net/users/Laura/carearmy.html ) but wants to do so from the point of view of a Utah resident. Any and all of you Utah residents who would like to contribute to the article, please get in touch with Lois Collins at: firstname.lastname@example.org
From: Bob Sanchez <email@example.com>
Donna, you posted that some people you have contacted have trouble believing that early onset dementia is a significant problem, and that you need some backup. The following are some of the websites dealing with early onset. Could this list, or perhaps a printout of the text in the first site (...hoffcomp/earlyon...) be useful to convince these people? I have other references, including primary publications, that might also be useful.
http://www.isl.net/~hoffcomp/earlyon.html A summary of information on incidence and statistics of AD, including early onset diseases.
http://www.isl.net/~hoffcomp/email1.html Bob Hoffmans webpage for early onset dementia victims. Contains the stories of dozens of early onset victims.
http://www.informatik.fh-luebeck.de/icd/icdchVF-F00.0.html Clinical description of early onset dementia, technical.
http://www.zarcrom.net/users/alzheimers/w-08a.html Description of early onset AD, and suggestions for diagnosis and care
http://www.zarcrom.net/users/alzheimers/w-08b.html Description of early onset AD; reports that incidence is increasing and younger ages are being affected.
http://www.zarcrom.net/users/alzheimers/w-08c.html Detailed list of specific characteristics of early onset AD
http://glaxocentre.merseyside.org/ypd.html A proposed Declaration of Rights for victims of early onset dementia
Click here for Some basic AD statistics. Possibility of occurrence before age 50.
http://dementia.ion.ucl.ac.uk/candid/ A website featuring information and advice for early onset dementia victims.
A home page with links to other sites dealing with early onset dementias.
From: "Ona Hardy" <firstname.lastname@example.org>
Please, everyone send this to everyone you know. Let's help these people get the word out .____
Joseph F. Timassy, a 68 year old man, has a goal. He is planning to walk across the United States to raise awareness to Alzheimer's disease. His goal is to go from coast to coast, walking where it would be safe, and then up to Washington, D.C. , for the World Conference for Alzheimer's in July,2000. Joe was diagnosed in 1994 with Early Alzheimer's and has a slow progression of the disease. Some memory loss, word recall difficulty, math difficulties, and some reading difficulties, are not stopping Joe from living his life to the fullest. Joe and his friend and caregiver, Penny, will start out on Dec. 15, 1999, from their home in Dana Point, California, heading east, to meet with people across the nation to share their experiences and to hear others, giving small seminars wherever they are welcome. Joe's Quest, Inc. has applied for non-profit status, in order to raise money for Alzheimer's research, and to raise funding to help families and those afflicted with the disease.
Joe feels that he can reach out and try to make people understand what it is to have Alzheimer's. He is one of the fortunate ones who can still express himself somewhat, even though difficult for him, he wants to speak for those who cannot. Joe's website is http://www.joes-quest.org
To the Caregivers Army,
I got some more letters out today one to the AARP, one to the Dessert News Utah, The Ohio Veterans Home, and information about the Caregivers Army.
T-shirts and buttons ..... Donna Morales 9:52 pm Thursday October 28, 1999
I've never done anything like this before but next week I'm going to start making phone calls to see about buttons and t-shirts to identify us. I think the shirts should have the dove on them. Buttons???? will someone hep the girl...lol It's an idea I'm throwing into the arena. I'm in Pittsburgh. Does anyone know someone I can call here? I am open for any suggestions. Love ya all... dios te bendiga!! Mourningdove Morales Dj_52@webtv.net
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