Jim saved me. From myself. From bad choices of jobs and men and friends. He saved me on so many levels. Now I want to save him and I can’t. I can’t stop this descent our family is on. I desperately want to save him. I want to save us. And I haven’t figured out how.
Instead, I get angry. Sometimes at him. I get angry that he hasn’t planned better. I get angry our children won’t have him much longer. I get angry that I will be alone and have to start my life over without the one person that knows how to save me from myself.
I get angry and I now realize the anger comes from deep rooted scaredness (can you believe that word isn’t in the dictionary?). I am scared I won’t have the money to take care of him and the kids. I am angry he didn’t plan that better. I am scared our children have inherited this God awful disease. I am angry he didn’t tell me before we were married or before we had children that this could happen. I am scared I will end up alone and bitter. I am angry he leaves me a little more each day when I need him more than ever. I need him to save me from all of this and he can’t. For the first time in our relationship he is failing me. And I am failing him because I get angry and I can’t save him.
You grow up learning that if you go to the doctor, follow orders and take your medicine, that you will be healed.
Sometimes a terrible disease like cancer comes along and you must fight harder than you would with an average cold or infection. You take more orders and wait longer. But you have hope that the doctor’s orders and the medicine will work. Maybe a surgery will be the end all. You will be ok and be able to go back to the life you lead before the awful day you received the news.
As a child you are given vaccines that can keep you from getting sick. It helps you feel invincible and safe.
Once you figure out that it is Alzheimer’s Disease you are dealing with, you are at a dead end. No hope. No vaccines. No wait and sees. There are few drugs available to try to stave off the symptoms for a while. You are told as you are being handed the prescription that the outcome will be the same as if you weren’t taking them at all. It goes against everything you have believed your whole life. It really takes a long time to sink in. I am not sure it has for me. On one level it has, but on many it hasn’t. How do you grasp that there is NOTHING to take that will heal your mind?
We have read many articles about different things that help: coconut oil, resveratrol, CoQ10, Vitamin B12, Green Tea, Black Tea, no sugar, more sugar, blueberries, acai berries, fish oil, folic acid, wine, no wine, no caffeine, yes, caffeine….on and on. Every day there is a new article with a new claim of a new study that promises you hope. That promises you a small glimmer of something to hold on tight to as you lie in bed trying to figure out what the Hell you are going to do. It is enough to drive a person insane if the fact they were already losing their mind wasn’t the issue.
Yes, I get angry. There are a lot of things that give me the right to be angry. It doesn’t mean I want to be angry and it doesn’t mean I will stay angry. It doesn’t even mean I am always angry. But I have my moments. Thankfully we have two awesome kids that keep me from dragging out my angry moments. They also help me get out of bed each morning and give me a million reasons to smile each day.
We have gotten word that the NIH wants to follow up with Jim for the diagnostic tests they ran on him a couple of years ago. So we will go. But these are not clinical trials. We are still searching for the right magic bullet. It is exhausting. I need my magic fairy godmother to swoop in and hand us that magical little flower that contains that magical little cure that will not only change our lives, but millions of lives around the world.
Have you contacted your representative yet?
I need a chill pill and spending all day tomorrow at the ball fields sounds like something that will help. So, that is where we are spending the weekend. Watching softball and baseball games and trying to forget the anger and the reason for the anger.