Just Like a Normal Human Being

As a person living with Alzheimer's I am often asked to share my personal experiences in living with this dreaded disease. I enjoy talking with others as I hope that by sharing my insights, it will help to break down the stigma around Alzheimer's and dementia, in general. But then, that stigma hits me square in the face.

Questions that lead to unexpected answers

Many times, my speeches are set up by the Alzheimer's Association or another organization so when I get to the speaking engagement the group just knows that I am there to speak about Alzheimer's. Most of the groups are service organizations or faith-based groups that hear from a variety of speakers throughout the year.

I have many "canned" speeches that I use depending on the group. When I feel like I am up to it I will go "off script" with some silly anecdote. The best part of my presentations to me is the question-and-answer period and time afterwards when people feel free to come up and talk to me.

"You don't look like someone who has Alzheimer's..."

This is when I find out how far we still have to go in fighting the stigma. Almost always, the first comment I get is, "You don't look like someone who has Alzheimer's." My first thought is usually, "What am I supposed to look like?" That is not my response...

I realize they still have the preconceived notion that I should be in an assisted living facility or memory care unit, not someone standing in front of them having a conversation. I know they mean well. However, I cannot imagine them saying to someone who has heart disease, "You don't look like someone that has heart disease." My response to them becomes an explanation of how everyone with dementia is different, and there isn't a certain way we should act or behave.

Interacting with someone who has Alzheimer's

One question I also frequently get is, "How are we suppose to interact with you?" This is always a tricky answer for me because I don't want to offend anyone. I want to scream, "Just like a normal human being!" but I know I am not considered normal to them.

I want to be treated like a human being who is worthy of relating to, not someone to be cared for. I want to be treated with respect just like anyone else would be. The preconceived notion that I am less of a human being because I have Alzheimer's is very hurtful. Do people think someone who has cancer is less of a human being?

Just like a normal human being

It is hard living with this disease. It is hard to explain what you are experiencing, and even harder to have to defend it when you have to. Accepting your limitations while still trying to maintain a worthwhile lifestyle is hard for anyone.

It is doubly hard when others cast their preconceived limitations on you. Let us be who we are – not who you want us to be. We may not be the same person you remember, but we are still a person worthy of your love and respect.