As I speak at events to raise awareness and funds for Alzheimer’s, I get asked many questions. One of the most frequently asked questions is “How did you know?”
I think everyone sees us and realizes, if it happened to them, it could happen to us and we need to know what to look out for…. Or something along those lines.
So, let me tell you.
Honestly, when I first started realizing something was wrong, I was about 37, Jim was about 45 and the kids were 3 and 6. At the very beginning, I didn’t even realize something was WRONG with him, but we were arguing a lot. I was getting frustrated with him and there was just something that was “off” about him. He was travelling a lot for work, I was home all day with the kids and working out of the house and I think we both just chalked it up to typical marital stress. We went to marital counseling. We had long talks and we had many arguments. But, when you have been living with someone for a long time, you learn their ways, you learn their patterns and the depth of their knowledge and you just KNOW them. It is not something you can form words to describe, you just feel the connection and have a good idea of what they are going to do or say before they do.
Jim was/is a very smart guy. So much smarter than me in math, in electronics, in guy stuff around the house and about the world we live in. Sports stuff. Travel stuff. He read really fast and was very efficient around the house and in work. Very tidy and neat. Everything in its place. He always looked very professional and put together. Kept his hair trim and clothes wrinkle free. He is well spoken. He was quick and smart and I never doubted anything he told me. EVER.
One day, we were driving down a main road in town that had a lot of construction going on for years. Both kids were in the back seat and one of them asked how the city decided what the speed limit would be. Well, before I could even think to open my mouth to answer the question, Jim piped up loud and clear: “Based on the number of potholes”. Yes, my smart, intelligent, Senior Master Sargent answered the question.
I was dumbfounded. “No it’s not!” “Yes it is” “NO, IT’S NOT! It is based on the number of businesses and lanes and stoplights and pedestrians and it has nothing to do with potholes. They would have the speed limit up before there would ever even be the first pothole”.
“No, it is based on the number of potholes”
And so it began. Another argument in front of the kids. A very wise woman would have backed down and at a later point instructed the children on the correct way speed limits are designated. But, I am not such a wise woman. I am a woman that doesn’t back down, who has to be right and who has no patience.
The complicated part of Alzheimer’s Disease begins when a person first starts showing symptoms. It isn’t necessarily forgetting where the keys are or where they are going or what someone’s name is. That comes a little later. When a person starts demonstrating Alzheimer’s Disease, they are actually really frustrating because you have no idea what is going on. You realize that the person you know, that you trust, that you love and care for, is driving you crazy and they are not themselves.
You start to question yourself. Is it really him? Or is it me? Am I making this all up? Is it really that bad that he put the honey in the refrigerator? No one else can see it at this point. Even my parents, who we would visit for 3 or 4 days at a time would not see anything wrong. I was just too hard on him and had too high expectations.
You really start to doubt yourself and start to feel like you are the one going crazy and the one who needs help. The “episodes” are so sporadic and inconsistent and minor really that you doubt there is a problem until they say something just really off the wall that isn’t quite their norm. Then the process begins all over again; wondering what is going on and if you are the problem or if maybe something else is going on.
We eventually went to see a neurologist who immediately put Jim on an anti-depressant. Months went by to see if that would help. We anguished because he had top security clearance and if his work found out, he could lose his clearance and his job.
All the while, I am anguishing, is it me? Do I expect too much? What is wrong with me? Wait, what is wrong with him? Why did he just say that? That doesn’t make any sense. What is going on?
Back to the doctor. They decide to run tests to start ruling things out….tumor? Nope. Stroke? Nope. Syphilis? Nope. Aids? Nope. Diabetes? Nope. On and on. Tons of blood work. MRI’s, Cat Scans. Months again go by that turn into years. Neuro-psychological testing over a 2 year period. Jim is as healthy as a horse. Great blood pressure, nothing amiss anywhere that the doctors can find. Maybe slightly stressed and depressed but nothing severe. He is so young. And he is so handsome. And smart and athletic and we must be over exaggerating.
But, as the years pass, the symptoms don’t go away. I start to confide in a very few close friends. We have to be very careful because of his job.
They can’t believe it. Am I sure? They just spoke with him the other day and he seemed fine. Perfectly normal like himself. I must be joking. He looks great.
But, slowly, through time, after many tests and trips to the National Institute of Health in Bethesda, MD, we slowly realize that Jim has the same, horrible disease that took his mom and his brother away much too early. He has Younger (Early) Onset Alzheimer’s Disease. I can’t breathe. I might get sick. The air has completely left my chest. My body seems frozen. . My head is a little fuzzy. This is surreal. Are we in a movie? Doesn’t this happen to other people? How am I supposed to react? What am I supposed to say? What is Jim thinking? How does this make him feel? What the Hell are we going to do? What about the kids?
See, I wasn’t making it all up. See, it wasn’t me. See, I was right.
I would give ANYTHING not to be right.