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.