JOAN’S BLOG – TUESDAY, APRIL 19, 2011 – REPLACING ME AT THE ALZHEIMER’S WASHINGTON, DC FORUM

Our veteran members are familiar with my annual trip to the Alzheimer’s Association Advocacy Forum in Washington DC. I would encourage our newer members to read the blogs and news bulletins from my three trips. Being an advocate and delegate from my State of Florida has been one of the most rewarding, informative, and exciting experiences I have ever had. I have had the honor of being present at the Senate Hearings on Alzheimer’s Disease in which Sandra Day O’Connor, Maria Shriver, and Newt Gingrich spoke. I have walked (my feet off) all over Capitol Hill, along with 600 advocates from every State, meeting with legislatures, senators, and aides, presenting the Alzheimer’s Association’s legislative agenda, as well as our personal stories of struggle with this dreadful disease.

I can track the progression of my husband’s Alzheimer’s Disease based upon the preparation needed for me to be able to attend the Forum. My first year, 2008, Sid was still driving, and perfectly fine to stay alone at home for the 3 nights I was away. The second year, although he was no longer driving, I rented a golf cart for him to get around our neighborhood. Our friends took him out to dinner and kept him occupied. Last year, it was a little more difficult. I made sure he was taken out by a friend every day, and checked on every night. This year, it is not safe, cognitively nor physically, for me to leave him alone overnight.

Not only is it not safe for me to leave him, but I have had an extremely difficult year myself. The death of my stepmother, moving my father to the ALF next door, the additional physical duties of having both a father and a husband in a wheelchair, as well as the emotional toll of Sid’s decline, and my injured shoulder, have rendered me too exhausted to go to DC, even if I were in a financial position to send Sid to respite care.

It is time to pass the advocacy baton on to someone else. It is an exhilarating experience, and one in which I would hope many of you would be interested in participating. Although it is difficult for those of us still in the caregiving stage to arrange such a trip, it is an opportunity for those whose spouses’ journeys have ended, to make a difference in the lives of those who will continue to develop Alzheimer’s Disease.

Anyone can become an advocate. Simply call your local Alzheimer’s Association and ask to speak to the Advocacy Chairman for your chapter. I am, however, making a special request of my fellow Floridian’s. If you are interested and able to attend this year’s Advocacy Forum (May 15-17), e-mail me at joan@thealzheimerspouse.com, and I will get you in touch with our Advocacy Coordinator.

Please understand that it is my policy NOT to engage in any political debates. We are a diverse group from every part of the country, and we all have differing political views, which my Message Board Guidelines clearly state are not open for discussion and debate on this website. That is not the purpose of this website. However, over the years, all of us have agreed that the Alzheimer’s cause transcends one’s individual politics. Alzheimer’s Disease is woefully underfunded compared to cancer and heart disease. There are a multitude of causes for this; there are charts, statistics, and as much information as you may wish to assimilate. If you are interested, you may click this link to start on that information super highway.

My request for your participation in Alzheimer’s Advocacy is simply a non-partisan view of ‘one person making a difference’ in the fight against Alzheimer’s Disease.

I would also request that you "light a virtual candle" in honor of those you know who are struggling with Alzheimer's Disease as well as those who have passed away from the disease.

MESSAGE BOARD: Joan's Blog - Replacing Me at the DC Forum

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The Alzheimer Spouse LLC
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