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Volume 4, Issue 1
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
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:
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.
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.
An Open Letter To Dementia Caregivers Worldwide
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.
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.
Nursing Practice Development Advisor, Older Peoples' Mental
PLEASE VISIT: http://signpostjournal.connect-2.co.uk/dementia.htm
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 I rx pts
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.
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.
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!
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.
From LIZA 513
Memantine Shows Promise In
Moderate To Severe Alzheimer's
Alzheimer's Disease Progress Not
Affected By Estrogen Replacement Therapy
Delays In Administration of Thrombolytic
Drugs More Likely In Elderly Patients
Anti-Parkinson Drug, Requip (Ropinirole),
Can Cause Patients To Fall Asleep Without Warning
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
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.
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),
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