So many significant things in my life begin with the letter A. The obvious, autism, plus my overwhelming love for my favorite dogs, australian shepherds. I do have a somewhat new “A” in my life, a rather unwelcome one, but one that I knew would probably be there: Alzheimer’s. My mom has it, my grandmother had it. You may think I’m nuts, which if you are reading this blog on a regular basis this may be a foregone conclusion, but I think that autism and alzheimer’s are diametrically opposed, yet fundamentally, there are so many similarities, I have to share my thoughts. They are not the same in the most basic way, with autism, there is always the hope, chance, drive for improvement, goal reaching, achievement. With Alzheimer’s there is only the ability to slow down, contain, hold off the inevitable end. So how are they alike you might be thinking? They are invisible disorders/diseases. If you were to see my beautiful mom, even yesterday, she looked as lovely as ever. Hair and make up perfect, all of her clothes matching, especially shoes and purse. ( My dad picked everything out for her, in case you are wondering if she really has the big A). If we were to walk into a restaurant or store, you would think to yourself, what a handsome couple. Bryan looks like a big beefy teenager, no visible traces of anything amiss. But if you tried to have a conversation with my mom, you would be stumped, flabbergasted and sad. I am trying very hard to process the slipping away of my sweet mom, but when she is right there in front of you, it’s bizarre to say the least. I am not dealing with it well, because on some level I am not dealing with it at all. Does this make sense? Not really, but what I mean to say is, I have not really explored the loss that is right in front of me. It is so like autism here, yet not.
I say autism and Alzheimer’s are diametrically opposed. I say that because one is getting better and one is not. One is coming alive, learning growing and the other is retreating, shrinking. Yet, they are the same. Here is someone you love more than words can say and you cannot have a real conversation with them. You can share your thoughts, they understand them, but they do not process like you or I do. With my mom, the new conversations are short, fleeting. With Bryan he remembers everything and can retrieve it at any time. Oh the goddamned irony!
My Dad is the ever present caretaker and I have not been as involved as I should be or would like to be. I know I have my life and my responsibilities but there is never enough time in a day to deal with everything. On some level it is almost too painful. My Dad is now realizing first hand just how hard it is to be with someone you love and yet cannot reach them in the way you want. He is realizing just how tough it is to be patient when someone you love is not behaving or reacting in the way the typical world does. While very very difficult for him to handle, we have bonded over the insight he now has in my dealing with autism. So profound if you are me. So profound if you are Bryan. Most people that see Bryan or know us, see a small glimpse of what is like to be with a kid on the spectrum. But to get it, you have to live it. I wish he didn’t have to do this, my Dad, but supporting him through this, is helping me deal with my mom.
Another A, always hanging out, is anxiety. Yesterday Bryan was very upset with me because our plans had changed suddenly. He said, “I have anxiety”. So while I’m not very fond of that A, I was so happy that Bryan could identify what he was feeling and tell me. At the end of everything, the most important A of all is acceptance. We accept our autism and our alzheimer’s and love our family as much as we can.