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UPDATE ON INFORMATION FOR THE NEWLY DIAGNOSED AND THOSE NEW TO THIS SITE
To those of you who have written on the Message Boards and filled my E-mail Inbox with cries of despair upon recently receiving the diagnosis – Alzheimer’s Disease – please take some deep breaths to calm yourself, and know that with knowledge, medications, and support, it can get better for you for an indeterminate amount of time. If you are not new to the disease, but are new to this website, you can also benefit from this information.
What is Alzheimer's Disease - 4 short informative videos - CLICK HERE to view.
1. Call the Alzheimer’s Association (1-800-272-3900) and ask for a support group in your area. Our support group friends have literally saved our lives. Ask to meet with a social worker – explain ALL of your concerns to her/him, and take whatever advice is offered. If needed, ask for a social worker to come to your house as often as needed to guide you through the first tough months.
2. Read and learn about the disease, its stages, what to expect, and the best ways to handle what comes along. CLICK ON EACH BOOK’S NAME FOR MORE INFORMATION:
A Caregiver's Guide and Sourcebook - Howard Gruetzner
Alzheimer's Disease - 300 Tips by Callone, Kudlacek, Vasiloff, Manternach, and Brumback
The 36-Hour Day by Nancy L. Mace,M.A. and Peter V. Rabins, M.D., M.P.H
The Alzheimer’s Action Plan By P. Murali Doraiswamy, Lisa P. Gwyther, Tina Adler
A Dignified Life: The Best Friend's Approach to Alzheimer's Care by Virginia Bell and David Troxel
When Someone You Love Has Alzheimer's-by Marilynn Larkin
Learning to Speak Alzheimer’s by Joanne Koenig Coste
4. Seek out and accept emotional support from support group friends and Message Board friends.
5. If you need more emotional help, ask your spouse’s neurologist to recommend a therapist who specializes in helping caregivers cope with the stresses of Alzheimer’s Disease.
6. Seek treatment from the best Alzheimer’s Disease Research Center or Memory Disorders Clinic in your area. Our Message Board writer and author, Betty, sent us this link for a guide to AD Research Centers. In Florida, in the Palm Beach County area, contact Premiere Research Institute at Palm Beach Neurology 561-845-0500.
7. Click this link to find out about research trials in your area.
8. Finances – CLICK HERE for information on taking care of those legal matters.
9. Click this link to Eldercare Locator - for community services in your area.
10. Stages of Alzheimer's Disease - Although it is not necessary nor particularly productive to get caught up in the"In which stage is my spouse?" debate, it can be helpful to get a general idea of what progression the disease follows. Remember that many patients flip back and forth between stages, and/or exhibit symptoms of different stages at the same time. These links from the Alzheimer's Association website are informative for those of you who would like this information:
Link # 2 - Pdf format
Other Links for the 7 stages:
11. ***Developmental Stages of Alzheimer's Disease - It is just my opinion, but I feel that this explanation makes it easier to understand the Alzheimer progression. Alzheimer patients go through all of the developmental stages that children go through, only BACKWARDS. Click this link for the Blog that discusses this phenomenon.
This is a long journey. You will not learn all about Alzheimer’s Disease in a day; you will not get all of the support you need in a day; your spouse will not get all of the correct medications in a day. It is a process. Every day you will learn something new about the disease and how to handle it; you will meet new counselors, social workers, support group friends – in person and here on the Message Boards; you will accept the advice and medications from your spouse’s doctor. You will have some smooth sailings; you will hit many storms; you will stumble and fall, but there will always be someone there to pick you up and help you along. There is no denying that this journey stinks (that’s the more polite word for the one I really wanted to use), and you surely did not volunteer for it. But you’re stuck with it, and the only way to get through it is to remember that you CANNOT DO IT ALONE. LEARN all you can, and ACCEPT HELP.
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©Copyright 2008 Joan Gershman
The material included on this website contains general information intended as information only. This site is not intended to provide personal, professional, medical, or psychological advice, and should not be relied upon to govern behavior in any certain or particular circumstances. The opinions in the blogs are solely those of the owner of the website. The opinions on the message boards are not necessarily endorsed by the owner of this website, and are the opinions of those persons writing the messages. All material on this web site is for demonstration and informational purposes only.
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