Interview: Suzette Armijo, The Advocate

Photograph courtesy of Suzette Armijo

Let’s face it…………….. when it comes to Alzheimer’s disease or other dementias like Frontotemporal dementia (Pick’s disease), we are David and it is Goliath. So, don’t worry, you’re not alone if you feel absolutely helpless — or hopeless……………………. we all do, even my friend Suzette Armijo, who is her grandmother’s primary caregiver, has her moments………. but you would never think so if you met her. Suzette is a passionate advocate with the Alzheimer’s Association and she founded our YAAA! group (Young Adults for the Alzheimer’s Association), all of which keeps her incredibly busy. Suzette is also a mom and works full time………………… so, why does she do it all? What’s in it for her? I spoke to Suzette about advocacy work, why she does and why you should do it too…………….. Yes, you are David. But if you forgot how the story ends, well, I suggest you revisit the story.

How did you get involved with advocacy and the Alzheimer’s Association?
A previous employer of mine had sat on the public policy committee back in 2008, but couldn’t go because of time constraints. When I was presented with the option to take it over I was in love with the thought.

Why did you decide to become an advocate for the Alzheimer’s Association?
When the option came up for me to get involved through my employers position, I had already lost my Grandpa years ago to the disease. After watching him and my Mom, as his live-in caregiver bear through it for over 10 years, I was excited to be able to make a difference. I knew very little about public policy but felt any help I could give would be beneficial. I was enlightened by all the programs the chapter offered. I had no idea.

What does your role entail? 
Since 2008, I have remained as a Public Policy, now Advocacy committee, member. In 2010, after attending my first Alzheimer’s Advocacy Forum in Washington, D.C. I founded the 5th sub-committee of our kind in the nation focusing on young advocates. YAAA!, Young Advocates for the Alzheimer’s Association acts as a subcommittee of the Desert Southwest Chapter Advocacy Committee, and is open to adults aged 18-39 who are interested in furthering awareness of dementia-related issues and Alzheimer’s advocacy efforts.  I am also an Ambassador appointed to Senator John McCain by the National Alzheimer’s Association.  Ambassadors are grassroots volunteers selected to serve as the main point of in-district contact for a targeted member of Congress.  We play a critical role in helping the Alzheimer’s Association meet its federal legislative goals.  We directly with National and chapter staff to implement federal advocacy activities at the community level.

Why is advocacy work so important when it comes to Alzheimer’s disease and other dementias?
Advocacy work is important when it comes to the fight against Alzheimer’s disease and other dementias for numerous reasons. Firstly, most of the people affected by these diseases cannot speak for themselves. In many cases the family members are the primary caretakers and bear a huge burden. Most of these people need total care.  They cannot be left alone at all.  This means the people that are most affected, physically, emotionally and financially are too busy just surviving to get involved with advocacy. There are ZERO survivors of Alzheimer’s disease.  There are no poster children telling their amazing story of hope and strength.  Alzheimer’s disease is a progressive brain disease.  It takes away our ability to take care of ourselves. Leaving our family and friends completely responsible with no hope, as of yet, for medications to even slow, let alone cure the impacts of this disease.

From a grassroots perspective, what can people do to make a difference?
From the simplest task of signing up through http://www.alz.org/join_the_cause_advocacy.asp to get advocacy action alerts via email all the way to more personal, direct tasks such as scheduling in-district visits with your congressman and/or his staff to discuss your concerns and what you expect from them as a resident/voter. The action alerts are great. When you have time to open the email in the comfort of your own home you will be directed to a simple form asking for your basic information and it sends it to your appointed Representative.  The more direct approach is more meaningful for  obvious reasons. They see a face. They hear your story.  They see a voter, in their district, reaching out and saying they need their support.

How do you balance it all? What advice would you give someone who is trying to balance caregiving and advocacy?
Balance… I don’t think there is a true balance with Alzheimer’s disease and other forms of dementia when you are the caregiver. The struggles are ever changing and the demands come up when you least expect it. I think it is up to each of us, as a caregiver, to know our limits. To know what we need to stay sane and be able to perform in our many rolls in this life. For me, being a single mom, being responsible for my own Grandma with end-stage Alzheimer’s disease, having a full time career and personal business, it’s the craziness that keeps me going. It’s knowing that this life wouldn’t be this way if I couldn’t handle it. For me the sub-committee I founded, YAAA!, and my volunteer work keeps my head afloat. I know that I am doing all I can do.  For my Grandpa and Grandma it’s too late. But I know my work will pay off for our future. Knowing that is enough for me to stay active and involved in the fight against Alzheimer’s and other dementias.

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

Live in PHX? Then Save the Date: May 10

Couple of Phoenix-area happenings that I wanted to share… maybe you can help us spread the word.

Retweet!

Forward!

Post on Facebook!

Help a sister out!

EVENT 1 (12-3 p.m.)

My friends at the Banner Alzheimer’s Institute are hosting a 3 hour program for friends and family of loved ones with Frontotemporal Dementia (FTD, sometimes called Pick’s disease) to help them better understand and cope with the symptoms, disease progression and the kind of care required. You’ll hear from experts in the field of this dementia, get your questions answered and meet others who are in the same boat.

Remember, you may feel like you’re an island unto yourself when dealing with this, but you are never alone. You just have to take that step, and this is a great first step.

Space is LIMITED, so register for this workshop STAT. Email Deidra Colvin at Deidra.Colvin@bannerhealth.com

EVENT 2 (6-8 p.m.)

YAAA!, Young Advocates for the Alzheimer’s Association, will be hosting its supportive social starting at 6 p.m. at Cheuvront Restaurant & Wine Bar. YAAA! is for younger adult caregivers (18-39) and the intent is to focus on advocacy at the state and federal levels… This is your chance to make your voice heard! Our mix and mingle starts around 7 p.m… this is a great opportunity for caregivers, friends and family to connect, talk to people in the field and find a real support system here in the Valley.