purple bow tie

Growing up I was surprised to learn not all State Capitals looked like the one in Washington, DC. Ours did in Arkansas. It looked like our US Capitol building. My mother worked there in the Secretary of State’s office. She wasn’t the Secretary, or the secretary. I don’t remember what she did, but it was cool. We’d go there at Christmas and see the lights and the big tree in the Rotunda. The miles and miles of cold white marble and the warm golden oak wood was, and still is such a contrast. You know if those walls could talk what they’d have to say, and not all of it good.

But here I am, almost 50 years later, going back to tell her story to a bunch of Legislators, and both State and National Alzheimer’s Association people. It’s Alzheimer’s Advocacy Day at the Capitol and we are painting the town PURPLE. Accidental good timing brought me here, to this event, as I was going it alone to ‘protest’ with my big poster with my mother’s picture on it. I called the Secretary of State’s office because they are in charge of what goes on in the building, and I didn’t want to get arrested. I went on the ACLU website, just in case, to learn my rights. Always a good thing to know. And I have someone in mind for my one phone call, just in case. One person can go just about anywhere, as long as you are polite, and don’t block traffic. They called back and weren’t sure what I wanted, and I said I wasn’t either, but this is my story and I asked what are my options, not wanting to get arrested, and all. She said I could set up a press conference on the steps of the Capitol at a later date, but in the meantime, there is a luncheon for Alzheimer’s awareness coming up real soon. I jumped at the chance to attend and immediately got on the phone to RSVP. I didn’t know what it was, but I was going to be there, with my picture of my mother, and butterflies in my stomach.

arkansas state capital

It was a typical busy day, I guess, with lots of protesters on the front steps. The Governor was supposed to sign the REFRA bill, so I thought our message might get lost in the fray. Maybe that’s the way it always is. I can believe there are daily bombardments of lobbyists plying for attention for their important issue. So how do you get heard? That’s what the D.C. person was for, to show us what to do and how to get heard. It was a lot like getting hired. You have your 30 second speech and if you get more time you add more points and tell your story. And then ask for a call back. Ask them what can be done next. What will they do? The pre-planning meeting and the lunch were in the Capitol Hill building across from the Capitol. The best thing I found out was there is a State Plan for Alzheimer’s Disease, and while other attendees were reluctant to tell their story, I wasn’t, and took my chance to tell my story. Lunch started and a few Legislators came and went. I was waiting for mine to show up, although I had old information from the internet, I missed one of mine who came in early, but have connected with her on Facebook since. Of the two I was looking for, one of them came in late with another Legislator who is on the Medicaid Oversight Committee. I pounced, and nothing happened. Oh, well, at least I got his card and have since e-mailed him my story. I’ll follow up with him in the future.

Phil and his purple bow tieSadly, the other Legislator killed the conversation by talking about Medicaid fraud being a budget stopper. I didn’t know how to respond, but now I have an answer: who is allowing Medicaid fraud to happen? Don’t just tell me it’s a problem, tell me what you are working on that is a solution. I’ll be asking him that question as it’s so important to him. It was a classic case of smoke and mirrors, and I just turned on the fan to clear the air. Apparently this ‘game of chess’ is quick and you have to think quickly to stay in the game. I may not be quick on the draw, but I am relentless. After lunch we walked up to the State Capitol and up to the House of Representatives into the observation Gallery to watch the proceedings. The first checkpoint is at the entrance to the Capitol. I lost the stick handle for my poster. No problem. I took it out, and still had my sign. They kept the stick for me to retrieve on my way out. Up through the gauntlet of protesters and news cameras on each side of the wide marble steps was quite intimidating, but I went up anyway. I had my sign, too.  At the entrance to the Gallery, I lost my sign. LOL. Ok, fine. But I was there, on the front row, plainly visible, sitting next to a Beauty Queen. You gotta know where to sit. In my blue overhauls, long sleeved white shirt, and red bow tie, I was quite the dapper country gentleman. So next time I’m there, in the same outfit, they will remember me. It’s my job to tell them my story.  

Since then, I’ve read the State Alzheimer’s Disease Plan, and found it lacking in the second half of caring for someone with ALZ. There is also a State Plan On Aging [PDF]. Need to read that. I’ve e-mailed my story to the Arkansas Times as an alternative view of the recent caregiving articles in the press. And I’m reading the Minimum Care Standards for Long Term Care put into law by Ronald Reagan in the 1987 OBRA. You may remember he died after suffering many years with Alzheimer’s Disease. I bet he had great care. So the Republicans know about this problem, and the Democrats also know. That makes it bi-partisan. That makes it everybody’s problem. No one is immune. I’ve also bought a purple bow tie.

Are you ready to become an ALZ advocate? Pledge to support the fight at ALZ.org.
Written by Phil Chwalinski
Phil spent 25 years as a specialist in catering and special events in Arkansas, then Florida, and ending up in California for 11 years. He was a Catering Sales Manager at a hotel and as a Wine Educator at a luxury winery in Napa Valley, CA. For the last 3 years he has been a full time caregiver for his mother who was diagnosed with Alzheimer's disease, back in Arkansas. One thing hasn't changed over the years - Phil is also an artist.

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