Advocacy Work or Advocacy Work?

I want to help people like me. People who are doggy paddling their way through this horrible mess. I suppose I feel like my dad and I have had to figure things out the really, really hard way……. so why not pass along the lessons we’ve learned.

TIP#4,592,569: When you’re with your parent, live in their world, talk to them in their language and carry wet wipes. Always carry wet wipes. 

That’s sort of the point of this blog. Share my story. Pass along the info I’ve learned……………….. make life just a little bit easier for someone else. Stuff like that.

A few months ago, I joined a group called YAAA! Young Advocates for the Alzheimer’s Association. The group was formed to advocate change at the federal level……………………… this means contacting your local representative, talking to them about the disease, sharing your story, etc…………………….. I’ve written to my representative a few times………….. to very little avail. I initially received a kind response from his press person—a good sign. I emailed her maybe 2 or 3 times since that first email and in her last response, she told me to send my messages to their general email address………………. from there, it will be distributed to the appropriate person (hopefully, their healthcare liaison………… still, I wonder if the intern will see my name and just hit “delete”).

Maybe Justice for the demented is demented herself. And blind. Or something.

So, I’m frustrated. OK, and a little angry. I pay taxes. I am a law abiding citizen. I have never been a burden to the system. So when I actually need this person to pay attention to me, I’m redirected to a “Write Your Rep!” link. Really? Seriously?

Dude, why don’t you meet my mother? Why don’t you see how draining this disease is on one of your constituents? Why don’t you walk in our shoes for an hour and try to understand why we need funding for this disease and other types of dementias.

I stopped writing to this person. I keep thinking I need to just keep drafting emails and shooting them out, but then I just become angry. I am considering leaving YAAA! I don’t think I have the patience to affect change like this. My patience goes directly to my mother; not to some overpaid congressman/woman whose job, let’s face it, is to get re-elected.

Maybe my purposes is to actually talk to people who are living this nightmare, instead of sending emails to blackhole@house.gov.

I know on some level I’m being bratty and impatient about this. It takes years to make change happen……………… Still, when I think about what our elected officials bicker about, who they pander to, and the issues that actually get people out to vote (Gay marriage? Seriously? That gets you out to vote? Why do you care if two tax payers want to get hitched? And who are you to play judge……….. why not worry about something that may actually impact you directly, like your health, and the fact that you may actually develop something like Alzheimer’s!), I lose faith in the system. I lose faith in government. I lose faith in our people………………………………. No wonder we are the laughing stock in so many countries, our priorities are truly jacked. We don’t care about OUR people. The people are last. And the people don’t care that they are last!

I’m tired of fighting. I fight for my mother on a pretty regular basis. I fight for information. I fight for her right to be heard, for her to be treated with some respect. I educate people about her—usually because she just yelled DESPIERTA AMERICA and I sort of have to explain why she just yelled bloody murder, but still……………………. so when I have to fight for a congressman to do his job and meet his people, I just want to quit. I just don’t know if I have the energy to write and write and write emails for a cause that will take years to manifest……………………… and in truth, I wonder, will more money make a difference in our loved one’s everyday life? I’m talking quality of life here……………….. Will there be more programs dedicated to people with Alzheimer’s or Frontotemporal dementia…………… Will there be training for healthcare professionals so they understand how to deal with someone like my mom versus someone like your mom? Will there be more programs designed to support the caregivers?

I don’t know what I’m going to do. I don’t know what I can do.

>>Flickr pic by Mjecker