JOAN’S BLOG – FRIDAY, MAY 16, 2008 – ALZHEIMER’S DISEASE’S EMOTIONAL IMPACT ON SPOUSES - THE IMPORTANCE OF RAISING AWARENESS - Part I from the DC forum

There are always lessons learned whenever I attend a conference or lecture. I try to take the most relevant information from them and present it to you, but this Washington DC experience was overwhelming, and I was bombarded with education and information. For that reason, I am separating what I learned into separate segments.

Since my focus has always been on the emotional toll Alzheimer’s Disease takes on a marriage and the life-long relationship with a spouse, that is where I will start today.

Sorry for the cynicism, but Washington is driven by money. Facts, figures, and how much will it cost? If those who have the power to release money for research, programs and services, are given ONLY sterile financial and demographic statistics, but have no personal, emotional connection with anyone coping with the disease and its impact on husbands, wives, and families, chances are good we will not get what we need. However, in spite of finances being the Holy Grail, surprisingly, raw emotion and a compelling poignant story do have impact.

I saw that myself when we were speaking with the legislative aides, most of whom listened politely, asked the statistical questions they were trained to ask, and gave us the “company line” about Senator and Representative so and so supporting money for NIH, BUT money is tight; it’s an election year, so no one is doing much of anything, blah, blah, blah. There was a shift in attention and interest when I spoke about the change and loss of personality in spouses, and the emotional pain it causes. There was a shift in attention and interest when Tony spoke about his 43 year-old wife in the later stages of AD, leaving him basically a lonely “widower” with 3 children to raise and a business to run. (More tomorrow about the total lack of awareness of EOAD) We brought two large envelopes filled with hundreds of personal stories from AD caregivers all over our state of Florida, as did every delegation from the other 49 states, and presented them to the legislators we visited. In addition, I brought some of the most compelling and heart breaking excerpts from my Message Boards (anonymous – only screen names).

The truth is that most people do not understand the nature of Alzheimer’s Disease, and thus cannot possibly understand the deep emotional devastation it causes to family members, particularly spouses. They will only know if we tell them. Tell our stories again and again and again. But there is a method for getting those stories publicized.

One of the most valuable workshops I attended instructed us on how to use the media to “spread the word”. Start with your local media – television reporters and anchors, as well as town and city newspaper reporters. Contact every one of them with your story – someone will be interested enough in a good “human interest” story, and will eventually get in touch with you. If you do not hear from them, follow up, and follow up until you get results.

There is a trade-off on this– your privacy, and only you can decide if it is worth it. I almost did not start this website because of the concern for my privacy. Tony thought long and hard before he agreed to be featured in the stories in his hometown newspaper (link has been broken - I will post it when it is fixed), and Trish struggled with the privacy issue before she allowed CBS to do the story on her family. There are others of you who have allowed your stories to be printed in newspapers, and of those of whom I am aware, including myself, we are all thankful we made the decision. Our stories have helped raise awareness, which is a step toward our ultimate goals – understanding of the impact the disease has on spouses and families, and money for research, programs, and services to ease the financial burden on all of us.

Since Alzheimer’s Disease entered my life, I have been doing things that I never would have dreamed of just a year ago – writing for a website; meeting authors; attending and speaking at conferences. Unfortunately, or probably fortunately, I have also been doing them without understanding the depth of the waters in which I chose to swim. The Washington DC trip was certainly one of those deep sea adventures. Who knew the pace would be frenetic, that there would be miles to walk between offices in the same building, and the scheduling would be so tight that one wrong turn in one building would mean missing a meeting?  Certainly not me, nor Tony either. We looked at each other in utter horror and total exhaustion as the FOURTH speaker came to the podium at 9 PM, which was some 15 hours after our day began. It also happened to be the night before we were to go traipsing all over Capitol Hill for our legislative meetings. I was also blissfully unaware, until the day before, that I would have to verbally present my case in front of legislative aides. That’s what happens when you don’t ask too many questions before you enthusiastically make an airline reservation.

However, it was an exhilarating experience – attending the Sandra Day O’Connor Senate hearing was an honor and a thrill. I am very glad I made the trip.

Tomorrow: The unique issues of EOAD

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