JOAN’S BLOG – MONDAY, FEBRUARY 11, 2008 – THE NEWLY DIAGNOSED- WHERE TO TURN - Good information for all of us. (Updated August 2, 2008)

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.

Oh, yes, I and all of our readers and writers here understand the shock, fear, and panic upon first hearing those stunning words – Alzheimer’s Disease. I was overcome with shock – “No, it can’t be. It can’t. The other neurologist said it wasn’t; the other neuropsychologist said it wasn’t. Never mind they had no idea what it was. They SAID IT WASN’T ALZHEIMER’S DISEASE.”  But it was. The diagnosis was as definitive as it could get, after ruling out everything else.
Then the fear took hold. My head was filled with images of my husband forgetting who I was; wandering away; losing his mind and memory; and worst of all – living without me in a nursing home. How could I live without him? How could we be apart? We hadn’t been apart for more than a few days at a time since we married in 1970. My body was literally shaking with fear every waking moment.
Then the panic.  I won’t be able to handle this. I won’t. I haven’t been able to deal with the mood changes, personality changes, temper flare-ups, irrationality, up until now. How will I cope if it gets worse? What am I going to do? Where can I turn for help? 
Does this sound like what you are feeling? If so, you are not alone. We have all been through it, and still go through it at various stages of the disease, but there is help out there for all of us.

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:

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

4. Click this link for “Understanding the Dementia Experience by Jennifer Ghent-Fuller

5.. Seek out and accept emotional support from support group friends and Message Board friends.

6.. 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.

7. 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.

8. Click this link to find out about research trials in your area.

9.. Finances – CLICK HERE for information on taking care of those legal matters.

10.. Click this link to listen to my radio interview on Jacqueline Marcel’s “Coping With Caregiving” show.

11. Click this link to listen to my CBS radio interview with Tracey Morgan on Pittsburgh Stations, WBSW/WDSY/WZPT.

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.

Feedback to joan@thealzheimerspouse.com