JOAN’S BLOG – MON/TUE, JULY 13/14, 2009 – HAPPY 2nd ANNIVERSARY TO THE ALZHEIMER SPOUSE WEBSITE

It was two years ago this month on July 14, 2007, that this website was launched. Happy 2nd Anniversary to us!

Generally, I sit down to write a blog; the ideas flow; and within 2-3 hours, it is finished, edited, and posted. I have been trying to write this blog for an entire week. It has been difficult because my thoughts and emotions are so varied and intense.

As my regular readers are aware, this website grew out of my frustration, confusion, and emotional pain of finding myself living with a stranger whose loving, kind, supportive personality had been hijacked by Alzheimer’s Disease. Since I was only aware that Alzheimer’s Disease affected memory, I was at a complete loss to understand what was happening to my husband and my marriage. My heart was not just broken; it was shattered into a million little pieces; I was paralyzed with pain, and spent most of my time wracked with sobs so strong that I would lose my breath.

In the middle of one sleepless night, while I was at the computer, writing of my despair, loneliness, and bewilderment, an idea came to me. There must be thousands of Alzheimer spouses who feel as I do. Why not start a website of support for all of us? 

For those of you familiar with the movie, “Field of Dreams”, in which Ray hears voices telling him to “Build it, and he will come”(referring to a ball park), I guess I can say that is what happened with my idea. I built it and you came. Thousands of you. You came in droves to a place of comfort, support, and understanding of issues with which no one but other spouses could relate. You helped build this website into what is now the #1 site on the Internet for spousal support. Your quest for understanding of what Alzheimer’s Disease does to relationships, as well as your insatiable desire for knowledge and information about the nature of the disease, resources to help you cope, and up to date, relevant news about treatments and drug trials, spurred me on to continue to add the features that meet your needs. The left side of this home page is now packed with those resources. And more are coming.

From this one little idea, a community was built. A community whose members not only support each other on the Message Boards, but who, I only recently became aware, have reached out to one another and become friends through personal e-mails, phone calls, and material support.

A few of us have been privileged to meet in person on the Caregiver Cruise, at conferences, and at the Washington DC Alzheimer’s Public Policy Forum. I look forward to meeting and becoming friends with more of you.

I have learned a tremendous amount in the last 2 years. I have learned to run professional web design software, manipulate web code, make links, design new web pages, and archive information. I have learned the limits of my knowledge, and when it is prudent to call in an expert. I have learned that one cannot run a website of this magnitude without a staff.

But all of that knowledge pales in comparison to what I have learned from you about people.

I have learned that one person can make a difference. Although I have made a difference in all of our lives by creating this website, you have made a difference in each other’s lives. Through the support and information you provide to all of us; through the community outreach many of you have taken on - Tony and Trish on EOAD; Ruth with Project Lifesaver; Marsh in educating doctor’s about caregiver issues; and those of you who have educated just ONE person about Alzheimer’s Disease – you have all made a difference in the lives of those you have touched.

I have learned that people do care about one another – as evidenced by the outpouring of support you give to everyone who has lost a spouse to Alzheimer’s Disease, and most recently, the incredibly generous emotional and financial support you have given to Mary, when she suffered the tragedy of her daughter’s shocking death.

I have learned that we are strong, capable, and we should never give up on ourselves. No matter the amount of Alzheimer darkness and despair that blocks our path, with support and the knowledge of other’s experience, we do find the light at the end of the tunnel. Those who have made it through have shown us that there is life after Alzheimer’s Disease, and it may just be a life better lived and appreciated because of the Alzheimer’s experience that has strengthened us.

It has always been my belief that the success of this website has been due in some part, to the personal nature of my writing. Countless numbers of you have e-mailed me to say that I have written what was in your mind and heart. Do not think it was easy for me to make the initial decision to bare my soul and private life. It was not, but I now believe the benefits of knowing we are not alone in our emotions, thoughts, and struggles, is the biggest stress reliever and morale booster we can encounter.

This website could not have thrived without the generous help of many of you. You have compiled charts for me – “Where are we from; ages of caregivers; In memoriam”, (I promise those sections will be ready soon) to name just a few. You have researched important information for me. You have provided me with contacts and ideas to continually improve the website. Your volunteer work is invaluable, greatly appreciated, and will be needed in the future.

Since this website has become my business, my job, and my source of income, all of my business advisors insisted that I charge a monthly or yearly fee for message board usage and much of the information provided in the research section. Everyone who comes here, comes because they need the emotional support and resources provided by this website. Much to the chagrin of these advisors, I felt that I could not turn away those who could not pay, so I have utilized a voluntary payment system. Those of you who have provided that voluntary financial assistance have enabled me to continue to work at this job, and have helped me keep the Alzheimer Spouse open to those who need it, regardless of their financial situation. My thanks to you runs deep and wide.

Much more is coming. New home page design; more resources; updated resources; new features. I have not forgotten those of you who requested a “text only, printer friendly” version of the blogs. I gave up trying to figure out the directions. It is one of the projects I have for the computer expert. Thank you to my son Joel for the initial set up and the first 9 months of technical work, which he somehow has managed to teach me to do.

Do not forget about my book project. I want your stories. Please e-mail me today to let me know if you are going to participate.

So Happy 2nd Anniversary to us!   You are my inspiration, and I thank every one of you for helping make this site such a success.

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 ©Copyright 2009 Joan Gershman

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