JOAN’S BLOG – MONDAY, JULY 14, 2008 – THE ALZHEIMER SPOUSE WEBSITE CELEBRATES ITS FIRST ANNIVERSARY. 

I was hurting. I was terrified. My beloved husband’s personality and our relationship were disintegrating before my eyes. We, who had been so close that people spoke our names as one word – JoanandSid-  could not relate to one another as we had for 3 decades. No one was talking about this insidious aspect of Alzheimer’s Disease – that it tears apart marriages as the ill spouse’s temperament, abilities, comprehension, and very essence is stolen by Alzheimer’s Disease. My emotions of loneliness, anger, confusion, and guilt over my inability to understand and accept the changes, were overwhelming and threatening to destroy me. I could not sleep; I would get up in the middle of the night and pour my emotions into my writing. When I wasn’t writing, I was alternating between sobbing and engaging in screaming arguments with the stranger who was inhabiting my husband’s body.

I do not know if this website would have come to be if it had not been for my support group friends, Mona and Marge, who took me aside, and said, “Yes, Alzheimer’s changes everything, including your marriage.” If they had not validated my feelings, I do not believe I would have thought to start this place of comfort for spouses. But they did, and for that and their friendship, I am forever grateful.

One night last June, as I was lying in bed awake, the idea came to me -  Mona and Marge said that Alzheimer’s Disease causes pain and tension in every marriage. Well, I thought, if that is true, then there must be millions of spouses out there like me- in desperate emotional pain, and in need of a place to come for support and information where they can be brutally honest about their feelings of anger, resentment, desperation – a place by, for, and about spouses to discuss those issues unique to us. Then the idea popped into my head – “I’ll start a website!”

Now, I must say, I was completely oblivious to the technological aspects of my new idea. I knew less than ZERO about how to make a website. But, then I thought about Joel, my California son, who had been working with web design “stuff”, as I called it, for years. I called him with my idea, which he thought was terrific, and within two days, he sent me a template for the website. My naïveté in the face of web design technology provided him with quite a laugh, as my first question was – “So, how do I get what I wrote to show up on the Internet?” Thus began my new education. With his invaluable assistance – (well, it was more than assistance – he did 99% of the technology via “remote” for at least the first 3 months) – www.thealzheimerspouse.com was launched on July 14, 2007.  Slowly, I learned to do more and more on my own. Now, one year later, I would say I do 75 -80% of the technology.  Keeps my brain active for sure.

I thank Dick S., one of our members, who has been with me since the beginning, for the brilliant analogy he sent me Sunday morning. He said my website endeavor reminded him of the line from the movie, The Field of Dreams – “Build it and they will come.” I did and you did, in numbers beyond my wildest imagination. At the end of my first quarter in 07, which consisted of the last two weeks in July, and the months of August and September, my website received approximately 500,000 hits. At the end of the most recent quarter of 08, it received over 2,500,000!

This year has brought enormous personal growth to me as well. In one year, I have I met and received support for the website from countless authors, public speakers, senators. legislators, and doctors.  I have given two radio interviews, been the subject of a CNN article, attended countless conferences, have been a panel participant at two of them, was a delegate to a Washington DC Alzheimer’s Forum, formed a personal and business relationship with Caregiver Cruises, and have fulfilled my lifelong dream of writing. But my greatest thrill has been “meeting” all of you and providing you with the support that I knew was needed.   I feel much sadness that my success has come because Alzheimer’s Disease attacked my life-long love. 

This year has also brought tremendous growth to the website. I know how valuable the Message Board support is to you, but I urge you to also log onto the home page of www.thealzheimerspouse.com every day, as it is always updated with the latest Alzheimer news and announcements. You can find worthwhile and important information on the topics on the left side – finances, cruise information, articles, news videos, memory clinics, drug trials, EOAD, Project Lifesaver, and of course, my daily Blogs chronicling my struggles to cope with Alzheimer’s Disease. Many new topics are in the planning stages. Our Alzheimer Store carries a wide variety of products to make caregiving easier; our Amazon book and product store carries everything you could possibly need. As Val mentioned on the Message Boards, this is a full time job, and in order for me to be able to afford to keep this website going, you can help by purchasing your Alzheimer supplies from our Alzheimer store, and books, music, and scores of other products from our Amazon store.

Since it is imperative that I provide an income that will keep our household going, in September, I will be starting a consulting business, in which I will be available to Alzheimer groups to present workshops on communication and memory strategies for the Alzheimer patient. If you are in the Florida area, and have a group that is interested in my services, e-mail me at joan@thealzheimerspouse.com.

It is very important to me for you to know that without the love and support you have given me during my worst times, I do not know if I could have withstood the trauma of this disease. I fight for control every day as I know you do. Thank you from the depths of my heart and soul for your support.

Feedback to joan@thealzheimerspouse.com

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