I was diagnosed with younger-onset Alzheimer’s disease in 2009 at the age of 56. Prior to my diagnosis, I was the senior vice president of operations for M&T Bank, overseeing hundreds of employees across the Maryland and Delaware regions.
I still run into those people — former employees or co-workers — at the grocery store or out at restaurants. I remember faces, but not always their names. Often, I notice that people make eye contact with me and then turn around the corner rather than say hello. Maybe they are just uncomfortable. Maybe they don’t know what to say.
There are times when my husband, Robert, and I are out and friends will ask him, “How is Kathy doing?” He will say to the person “Let’s go talk with her.” Most individuals don’t know what to say and it may be easier for them to avoid me.
I want people to know the truth about Alzheimer’s disease. That it’s not a mental disorder or “just a little memory loss.” It’s the most common form of dementia. And it’s a progressive disease.
I speak up and tell people about my diagnosis and take as much time as I need to educate them. I want them to have a better understanding of Alzheimer’s. I want them to know there is much more to the disease than the late stage. Someone with Alzheimer’s doesn’t have to be in a wheelchair or lying in a hospital bed; they can be like me, still able to travel and live life to the fullest. Maybe they are not at the top of their game, but they have found ways to adapt. Like me, someone with Alzheimer’s can still be functional and independent. I still have so much to contribute.
It’s not always easy to speak up about Alzheimer’s. Even now, several years after my diagnosis, it can be very difficult for me.
Last week was Robert’s birthday. He received a card from friends that read something like, “At your age, we knew you wouldn’t remember we sent the same card last year!” Robert and I just sat and looked at each other.
Keep talking openly about Alzheimer’s, and little by little, it will get easier. Sometimes you have to put yourself out there, and that’s not easy for everyone. Make sure your friends and family members are educated about the disease. They can speak up on your behalf, too.
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- If You Have Alzheimer’s
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About the Blog Author: Kathy Murray is an alumna of the national Alzheimer’s Association Early-Stage Advisory Group (2011). She lives in Frankford, Del., with her husband, Robert. Kathy and Robert have two sons, Robbie and Bryan, and six grandchildren.