I’ve been asked to write a brief statement as to why LAMAA (Lakes Area Memory Awareness Advocacy) and ACT on Alzheimer’s is important to me. The following is my statement of support of the work these two organizations do and how they have helped me and many others. Feel free to comment and share your experiences of support through either of these organizations and/or others. We help each other when we share our journey. lj
The journey to the diagnosis of Alzheimer’s disease in and of itself is traumatic and when my Dad was diagnosed with dementia/Alzheimer specific, “Merle, you have dementia, Alzheimer’s specific” was as much information as we received from the visiting neurologist at his local clinic. As the eldest of five siblings I was determined to find out as much as I could about what to expect, how to deal with all of the “what next questions” and how to help my Dad and my Mom deal with this devastating diagnosis. I was unable to find much help or information at that time. I was able to find medical information, misinformation, opinion and a few books that were more technical than helpful.
Because of the lack of resources I started journaling in hopes of helping myself and in the future, anyone else trying to survive this journey. My writings created a book about my Dad; who he was before Alzheimer’s disease, along with all of “the how, what, why, where and when” questions for which we had to find answers.
After the death of my Dad I continued to write and do research which led me to Lakes Area Memory Awareness Advocacy; a volunteer organization which was providing the resources I had hoped to find when Dad was diagnosed. LAMAA was connected to Act on Alzheimer’s and together they were leading the effort in our community to provide support for loved ones and their family members and caregivers. Having been on this devastating journey, I knew full-well the importance of support and resources and Act on Alzheimer’s was providing the means to “changing our communities”.
I needed to be a part of this; my personal mission is to help people realize the importance of remembering who their loved one was prior to the diagnosis. Act on Alzheimer’s not only helps me fulfill my mission, it more importantly educates communities and provides the resources I could not find when my Dad was first diagnosed.
Because of the work of Act on Alzheimer’s, no one ever has to get this frightful diagnosis without getting some direction to resources and support. As we continue to educate families, caregivers and providers, it is my hope and belief we will educate our communities as well. The devastation of what Alzheimer’s disease is and what it does, needs to be known and understood. No one should ever have to feel embarrassed, neglected or alone on this dreadful journey.
Lynda J. Converse
Adult Daughter of a Dad with Alzheimer’s disease