We had a great time at our annual fundraiser for the Alzheimer’s Association. I thought I would share the speech I gave. Of course, with this being Maneé Trautz’s site, I am going to change some of the details that would reveal the person behind the creation.
Hi, I’m M- and I don’t have Alzheimer’s.
I know the symptoms because both my parents did, so I’m confident I don’t.
Alzheimer’s patients have muddled thoughts. They’re coherent one moment only to start talking as though today was 20 years ago. They may refer to their family members as different people entirely. They sometimes even think they’re somewhere other than where they are.
I don’t have muddled thoughts, I’m know I’m at this event, I can name my friends who are here, and I know it’s 2016.
I don’t have Alzheimer’s, though my children sometimes insinuate I do.
They’ll tell me I knew about some school deadline, and should have filled out the paperwork or written a check, long before the time they are standing in of front me worrying they will miss the bus. I could worry at these times too, but I know I didn’t forget – I procrastinated. I inherited my father’s tendency to procrastinate, not his Alzheimer’s.
My husband often says I live in my own little world and he’s right. I like my world, it’s much nicer than reality. My being somewhat of a dreamer helps me greatly as a writer, but it might just make people wonder if I am following in the path of my parents. I assure you, I’m not.
If I did have Alzheimer’s and I started to drift off into my own little world, I guarantee it would be the beach, most likely Ocean City. However, I don’t have it and here I am.
You might ask how I can be so sure I don’t have Alzheimer’s. Well, it’s simple. Every time I forget something or get confused, I remind myself it isn’t anything new.
One day, after band practice, I was waiting outside for my mother to drive me home when a car stopped in front of me. A woman called out the window. “Are you M-?”
I answered yes, curious why she cared. She told me she was driving me home because mother was recovering from eye surgery. I really struggled with the idea of getting into her car because I didn’t know her and I knew my mother hadn’t had surgery, but I did take the ride.
When I got home and saw the bandages on my mother’s eye, I was upset. How could she have surgery and not tell me?
She swore we’d discussed it at dinner. You know dinner, the time when people eat and talk to each other. Yeah, well, I tend to eat and dream. It’s possible we had talked about it and I forgot. Anyway, I was 16 or 17 then and didn’t have Alzheimer’s, so why would being oblivious to the world now mean I have the disease. It doesn’t. My mind is as capable as ever.
Do you remember when I told you I love Ocean City? Of course you do. See, we don’t have memory problems.
On my first family vacation to Ocean City I fell in love with the ocean, sand, boardwalk, everything about it. Though we both loved the ocean, all my oldest child talked about was the dog we’d get after vacation. When alone with my husband, all I talked about was the baby I desperately wanted. Within a week, we had a dog, and my youngest was born nine months later.
You see, my children and I are good at projecting our desires into reality. It’s the same with Alzheimer’s. We don’t desire me to have it, so I don’t. So I won’t. So there!
After this year’s vacation to OC, I spent a wonderful day visiting some friends. Only, the next day I realized that, rather than visit my friends, I should have been somewhere else volunteering. How could I have forgotten? While I didn’t regret having fun, I worried about forgetting, until I reminded myself, it’s not the first time.
My child once came home from school very excited to show me a prize from the kindergarten awards ceremony. Immediately I exclaimed, “I forgot to go to the ceremony!”
Obviously, my forgetting to volunteer is nothing new. I forgot to go places years ago and I didn’t have Alzheimer’s then.
I can hear the critics. They’re saying – back then I had several small children and a father beginning to battle the disease. I was more than a little distracted, so forgetting was understandable. The critics are asking, how could I forget after a great vacation? Easy, I love the beach and my mind just didn’t return when my body did. It happens.
A nurse once asked my father who I was. He said, a wonderful, beautiful, confident woman. The nurse was disappointed; she wanted a name. Many people want patients to remember names; I don’t because, to me, it’s like covering a festering wound with dirt. All it does is make matters worse.
I didn’t care if he used my name; I had no problem being called wonderful, beautiful or confident. I don’t look for what’s wrong, like my father not knowing who I am; I paint the world in my own happy way. I chose to think, my father not only knows me, he describes me so well!
My children get frustrated when I call them by the wrong name, especially if I call them the dog’s name. My friend, gets very agitated when I accidentally call her sweetheart. Only my husband doesn’t seemed bothered if I call him the wrong name, of course that might be because he isn’t really listening.
I may not say the right name, but they never question if I know who they are. I don’t want my kids ever to wonder, does Mom know who I am?
Please allow the writer in me to tell you a possible future.
Imagine, it’s the summer of 2036 and I’m sitting on a rocking chair on the porch of the Plim Plaza, looking out over the religious sand sculptures at the waves crashing on the sand. I’m perfectly relaxed and enjoying the smell of the ocean mixed with fries and the call of the seagulls.
I’m aware someone just sat next to me, but I don’t look because I am thinking how wonderful the ocean is.
The person next to me says, “Hey, beautiful, what are you thinking?”
I turn and say, “I’m thinking I want another child.”
I am telling my husband I want another child in the year 2036. Only, the person next to me is not my husband. It is my youngest child whom I had forgotten ever existed. I forgot my child – all the wonderful times we had together, all the wonderful and annoying personality traits that make my child unique. I can’t even allow myself to believe this would be a possibility.
I don’t want my children to have to wonder; does Mom know who I am?
I do suppose this outcome is a possibility, but remember, I don’t look at the world for the worst-case scenarios. I have rose colored glasses. In addition, I am the author of my life, so allow me to rewrite this story.
Again, it is 2036 and I am at the beach. The weather is still beautiful and after a day spent in the pool and ocean, I am now sitting on that same rocking chair, only this time I have my granddaughter in my lap. I am telling her about how much my father loved the river, but my mother loved the ocean almost as much as I do. My granddaughter looks up at me and asks, “Granny, how did they die?”
I answer, “Alzheimer’s.”
She looks worried and asks, “Granny, will we get Alzheimer’s?”
I hold my head high and smile at her. “No, sweetheart. Because so many people raised money and awareness, the scientists learned that a protein caused the disease and they found a way to remove it. Now nobody gets Alzheimer’s. We will never lose our memories.”
Now, it is only 2016, but I don’t think we will have to wait until 2036 to find the cure. I know a cure exists and I want to thank you all for your part in finding it.
*When I was writing this speech, I kept thinking about how many times people say things that indicate they are in denial. I felt as though all I was doing was making excuses for forgetting, and may very well have the disease. I am somewhat certain I don’t, but one never really knows.
It is easy to ignore the beginning stages of Alzheimer’s disease because forgetting is a normal occurrence. However, if you feel you or a loved one is forgetting more than usual, please talk to a doctor. Alzheimer’s is not preventable or curable, but there are treatments that can slow down the progression and there are support groups. Don’t fight the disease alone!