JOAN’S BLOG – TUESDAY, DECEMBER 22, 2009 – MY ALZHEIMER’S ASSOCIATION INTERVIEW

During these final few days before Christmas, while everyone is running around with last minute shopping, cooking, decorating, and taking care of their AD spouses, I have been reflecting on last year and planning ahead for next.  Most of these reflections and plans will be discussed in my Christmas and New Year’s Blogs, but I wanted to share with you, a bit of an experience I had on Monday morning that gives all of us a lot of reflection material.

I was interviewed by someone from the Alzheimer’s Association for an article profiling Alzheimer Advocates. The article will appear on the Alzheimer’s Action Summit Website - http://www.alz.org/summit/forum_advocates.asp  in the “Advocates in Action” section sometime in January. I will post the date as soon as it is given to me.  One of the questions I was asked was what gave me the most satisfaction from doing this website. I gave a double answer.

The first most satisfying aspect of this website has been my ability to reach so many spouses to make them aware that they are not alone in their emotions – that grief, sadness, despair, loneliness, and guilt are part of living with the “stranger” that Alzheimer’s Disease has given you in place of your familiar lover and lifelong partner. So many of us suffered in silence, because caregivers of AD parents and grandparents could not relate to our “unique issues” of loss. This website has filled a void of support, and for that I am grateful.

The second most satisfying aspect has been this website’s ability to foster new advocates. Most of us would never have thought about the importance of raising awareness of this disease and all of its issues – the need for caregiver support and services; the financial and emotional toll it takes; the brain destruction vs. simple memory loss aspect; the fact that medication delays the severity, but there is no cure – all cases are terminal; the desperate need for research dollars - had we not been communicating with and listening to each other. You have shared your advocacy stories from the simple act of telling a stranger in a grocery store about the disease to major appearances on panels in Washington DC.  Had it not been for our member, Tony Pesare, I never would have become an advocate to the Washington DC Public Policy Forum. I did not even know what it was when he first wrote and told me about it.

It is easy for us to focus on the negatives this disease has brought to our lives; there certainly are plenty of them. But after talking with the interviewer, I realized that we have many positives, and our ability to connect with, offer support, information, and education with one another are just some of them.

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The Alzheimer Spouse LLC
2009 All Rights Reserved

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