Being Your Own Advocate

By Steffanie Blum

Dementia is a scary word that gets tossed around somewhat casually. It’s something that happens to old people, right? Something that maybe your grandparents or even great grandparents had. It’s a little hidden fact that it can happen to younger people too. My mom just got diagnosed and she’s not even 60.

For the last year she’s been having memory problems, losing things, having trouble saying the right words and doing simple things like balancing a checkbook. My family didn’t know what could be wrong. We thought maybe it was a medication she was on. Then we went to a neurologist who confirmed that it was one of the medications. He failed to recognize the fairly obvious symptoms because as soon as he heard she was on certain medications he got tunnel vision. That was all he could see.

Things carried on the same way with her just getting worse and worse but we just figured it was the medications. After all, a doctor told us so and they’re always right. Or so we’re taught. Doctors are just human, and sometimes they’re wrong.

Finally my mom got so bad that I decided to take her to the emergency room so she could get admitted to a psychiatric hospital. This way, they could mess around with her medications and change them a lot faster than if she was out-patient. Since nobody was helping us I decided to take matters into my own hand. That’s when I got a nasty surprise.

The wonderful doctor in the emergency room spent a half an hour talking to me and going over every detail of my mother’s case. She was kind, patient and understanding. She told me my mother had early onset dementia. She told me that certain symptoms my mother was experiencing were in no way connected to the medications she was on.

I was devastated. But in a way, deep down, I knew this was coming. She was having similar symptoms to my grandfather who also has dementia, but he’s 86 years old. My mom is scared and embarrassed. But this is in no way her fault, nor is any other disease like this. I feel scared to leave her alone sometimes but I’ve realized I can’t be with her all the time. Having our animals helps tremendously; at least I know she’s not alone.

We have an appointment with that same neurologist later this month and I can tell you this; I will do everything I can to make sure my mom gets the best care he can possibly give. That is what doctors are supposed to do and why they’re so respected and admired. But in this day and age, more often than not, we have to be our own advocates. And in my personal opinion, that is not how it is supposed to be; doctors should be advocating for us, not leaving us to do it on our own.