JOAN’S BLOG – WED/THUR – JULY 7/8, 2010 – THE ALZHEIMER SPOUSE WEBSITE CELEBRATES ITS THIRD ANNIVERSARY

When my husband was diagnosed with Alzheimer’s disease in October 2006, after four years of misdiagnoses and incorrect medication, I was devastated. My understanding of Alzheimer’s Disease at that time was that his memory of past events and people, including me, would fade, and he would die. It was what I did not know nor understand about the disease and its impact upon the marital relationship that ravaged me emotionally, tore my heart to pieces over and over again, and almost put me in the hospital from the stress and anxiety of attempting to deal with it.

It was my effort to find help and support specifically related to marriage and Alzheimer’s Disease that spurred me to launch this website three years ago on July 14, 2007. At that time, there were almost no articles, resources, or discussions anywhere, either on the Internet, and certainly not in support groups, about the unique issues faced by spouses of Alzheimer patients. I was dying inside - I needed to talk about my husband’s personality changes, irrationality, temper tantrums, lack of reasoning – all issues that turned a marriage of love, partnership, passion, friendship, and closeness into a war zone. The man whose heart had blended with mine for over three decades had become a stranger to me, and I was desperate for help.

Anxiety, desperation, depression, and stress kept me awake at night, so I would sit at the computer and write about my feelings. And write, and write, and write. Then one night, I decided that maybe I could start my own support group and discuss these important and unique marital issues with other spouses like me. The idea came to me to start a support website. Thus, the birth of www.thealzheimerspouse.com .

“Build it and they will come”, said the voice in the wind to Ray in the movie “Field of Dreams”. I built it and you came. I was correct after all – there were hundreds of thousands of spouses with the same issues as me, and they were as desperate for support and understanding as I was.

We have gone where no one dared go before. We have discussed the issues that were closeted and secret – locked in the hearts of Alzheimer spouses, who were afraid they were the only ones feeling alone, angry, resentful, overwhelmed, and married to a stranger. I have written blogs about, and we have discussed on the message boards- intimacy and sex, both with our spouses and with others who fill a need and longing our own spouses can no longer fulfill; resentment and anger at having to give up our lives to care for someone whose personality no longer resembles the person we married; the mourning of our marriages and our transformation from spouse to caregiver; the isolation and loneliness as our “couples” friends desert us. We have raised awareness of Young Onset Alzheimer’s Disease, and the specialized problems that spouses under age 65 face, including loss of job and health insurance, while trying to care for and bring up children with one parent suffering from dementia. We have provided resources and information for the children who are caught up in the tornado of Alzheimer’s Disease.

Through the writings of Tracy Mobley, Dave Howe, and videos of others with dementia, we have heard from the “other side” – the perspective of the spouse with dementia. This has been a valuable resource in helping us understand what our spouses are feeling.

We have also been educated through news items, television stories, videos, documentaries, books, specialized lengthy articles about the nature of Alzheimer’s Disease, as well as research, treatments, and drug trials. We have heard personal stories of those living with the disease and how they cope.

When I started the website, the idea was to write blogs chronicling my struggles, in the hope that readers could relate and not feel so alone in their journey. I hoped to add a few educational pieces related to communicating with a spouse who could no longer comprehend lengthy or complex language, (my specialty in my career as a special educator and speech/language therapist), and ideas on how to improve the marital relationship in spite of Alzheimer’s Disease.

The evolution of the website far exceeded my dreams and expectations. The left side now contains such comprehensive resources that it is recommended by doctors, social workers, support group facilitators, and nurses, nationwide for all Alzheimer caregivers. It is #1 in the Google search engine. It has readers from all 50 States, Canada, England, New Zealand, Brazil, Holland, and Australia. The message boards have become a source of comfort, information, and support for thousands of Alzheimer spouses in need of a safe place to discuss and be understood by other spouses.

Somehow, in the midst of all of this, I have morphed into an advocate for Alzheimer causes, having been a delegate to the Alzheimer’s Advocacy Forum in Washington, DC three years in a row, and profiled as one of the Alzheimer’s Association’s Advocates in action.

My expectations for the website have been met and surpassed, but the most surprising result of my efforts has been the friendships formed. I am not talking about anonymous Internet friendships. I am talking about real, face to face friendships. We have cruised together on the Caribbean, due to my efforts with Caregiver Cruises, but what has touched me the most is the friendships you have developed among yourselves. Many of you have traveled to each other’s States and met with one another. I am told that strong bonds have been formed because of the issues you share. I am grateful that I had a part in bringing you together.

Do not think for one moment that I am finished. The time I am able to spend on the website has decreased as my caregiving duties have increased, but this is still the best support network I have, the most rewarding activity in which I engage, and a labor of love. In the coming year, I will continue to add new features, more guest bloggers, and informative sections. Some projects from last year had to be temporarily shelved – the book project being one of them, due to insurmountable legal problems, and lack of time on my part. However, as I get my life in order, and practice some time management techniques, I expect this site to continue to grow and improve.

Thanks to everyone for your support and encouragement these last three years. Spread the word about www.thealzheimerspouse.com. For as many people as we have reached and helped, there are as least as many who need us and are unaware of our existence.  

Feedback to joan@thealzheimerspouse.com

©Copyright 2010 Joan Gershman 
The Alzheimer Spouse LLC
2010 All Rights Reserved
Under penalty of copyright laws, this information cannot be copied or posted on any website, media, or print outlet, without referencing the author and website from which it was taken.

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.           

The Alzheimer Spouse LLC 2010 All Rights Reserved