JOAN’S BLOG – MON, JULY 15, 2013 – CELEBRATING  SIX YEARS OF THE ALZHEIMER SPOUSE WEBSITE

This is an updated version of my yearly Anniversary Blog – It explains the history of the site for newer members who may not be familiar with it, and tells of its evolution from my nightly journal entries to the #1 Alzheimer spousal site for information and support on the Internet. Thanks to all of you who helped make it happen.

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 six 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. Along with the blogs, I added 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. We even have our own closed group – Alzspouse- on Facebook.

Somehow, in the midst of all of this, I 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. In 2011, I had to scale back my outside activities due to my husband’s declining mental AND physical health, as well as my own physical problems, but I continue to do as much as I can through the magic of the Internet.

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.

We have lost many spouses to Alzheimer Disease since 2007, and have added a “Widows/Widowers”topic on the Message Boards to help our members cope with their loss. They support one another and give advice as only those who have been there are able to do.

Last year, one of our members started a topic for spouses whose husbands and wives are living in an outside facility – Assisted Living/Nursing Home. These members have their own unique issues, and this valuable thread on the Message Boards allow them to discuss them and support one another.

As I look back on the blogs I have written, it is clear that I have evolved from wife to caregiver. I fought the changes with every once of strength I had, but in the end, keeping up the fight would have killed me. Alzheimer’s Disease always wins, so now, like you, I live in ‘limbo’ – neither a wife nor a widow. I am an Alzheimer spousal caregiver, and also like you, I do the best I can each day with the knowledge and support I have gained from my research and your advice.

My thanks to everyone for your support and encouragement these last six years.

A very special thank you to those who help keep this website running with your generous payments. You can also support this site by shopping at Amazon. Whenever you buy a product on Amazon, please go through the Amazon links on my website, as the site receives a small commission on each sale. If you are thinking of gifts for yourself or a special someone, check out my Zazzle and Etsy products. The money I receive from these various avenues pays for website hosting fees, IT assistance, website software updates, and LLC fees.

Please spread the word about www.thealzheimerspouse.com as far and wide as possible. 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 2013Joan Gershman
The Alzheimer Spouse LLC
2011 All Rights Reserved
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