Newly Diagnosed? New Member? Confused and Don’t Know Where to Turn?
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.
- 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.
- 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:
- When The Doctor Says "Alzheimer's": Your Caregiver's Guide to Alzheimer's & Dementia (Paperback)by Betty Weiss
- 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
- Alzheimer's Early Stages: First Steps for Family, Friends, and Caregivers – Daniel Kuhn
- 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
- Click this link for “Understanding the Dementia Experience" by Jennifer Ghent-Fuller
- Seek out and accept emotional support from support group friends and Message Board friends.
- 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.
- 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 . In Florida, in the Palm Beach County area, contact Premiere Research Institute at Palm Beach Neurology 561-845-0500.
- To find out about research trials in your area.
- Finances – CLICK HERE for information on taking care of those legal matters.
- Click this link to Eldercare Locator - for community services in your area.
- 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:
- ***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.
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.