Jun 272017
 

On more than one occasion, when I was a young boy, my grandmother roamed the streets of Washington, D.C. at night. One night she was picked up by the police, and ultimately placed in a home with others “like her.” Back then, these types of events were attributed to old age and senility. 

Today, my mother is living with Alzheimer’s disease – just like my aunt and grandmother. And at the age of 66, I am living with mild cognitive impairment (MCI).

Looking back, I realize that I had had symptoms for many years. There was the time I bought multiple cartons of milk in one shopping trip. Often, I’d leave my phone on top of my car and drive away. I started forgetting social dates and critical appointments.

I spent 20 years as an international flight attendant, with a revolving door of co-workers, so the seriousness of these events was often dismissed by people as carelessness, or worse, went unnoticed. I lived alone, and I didn’t have family and friends around often enough to notice any changes in my daily life. And because of my lifestyle, it was so difficult for me to come to grips with the possibility of losing my independence.

Life changed once I reached out to the Alzheimer’s Association for information and support; I never could have imagined how life-changing that one phone call would be! In the Association, I found all I was looking for and more, including the inspiration to share my voice.

Today, I focus on maintaining my independence as much as possible, and I’ve found creative and safe ways to continue enjoying some of my favorite activities. While I am retired from a long career of serving others, I now serve an even greater purpose in life: I have “re-imagined” myself as an Alzheimer’s advocate, serving as a member of the Association’s National Early-Stage Advisory Group for the past year.

When speaking openly about my diagnosis, the first response I typically receive is: “I’m so sorry!” Understandably, people don’t know what to say. But my advice is this: “Don’t say anything – just listen.” Listen to my thoughts, concerns and funny stories. Listen to my hopes and fears. Listen to how this diagnosis has affected me — for worse and for better. Keep listening, and keep sharing stories. They truly are the most powerful weapon we have in the fight against this disease.

Even though I have MCI, I’m still living. I’m just living a new chapter of my life – and my story is not over yet.

About the Author: Brian Van Buren is raising awareness of Alzheimer’s disease as a member of the Alzheimer’s Association National Early-Stage Advisory Group (ESAG).

 
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  One Response to “Maintaining Independence in the Face of Disease”

  1. I think it's great that you are embracing your challenges and using them for advocacy and helping others. Many people BECOME their diagnosis and don't focus on continuing to live. What a strong person you are to continue to help others while helping yourself stay active and involved. I work with seniors in a rural area. Any kind of dementia-related diagnosis is kept very quiet and many live in denial of what is happening with them. I see this leading to a very fast decline in their mental and physical health. It's been difficult trying to change the culture around dementia and aging (or dying) in general. This is a great way to start that process, by encouraging individuals to use their diagnosis as an opportunity to help and empower others. I truly look up to you for taking life by the horns.

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