Caring Today Blog

Ripples in the Pond: Advocacy

Posted by Debbie on: October 4th, 2007

When I became intimately aware of the financial implications of caregiving (see "Ripples in the Pond: Finances"), I became indignant. No, not indignant. Plain old spitting-nails mad. I was furious. Caregivers have so many good fights to win that losing the financial battle just seemed wrong. There had to be a way out—and I was determined to find one...or make one!

I started talking with my local Alzheimer's Association. I started talking to everyone! God forbid I should run into someone with some real power; I'd take every minute I could get of that person's time.

Then I got a little smarter and signed up to be on the email lists of my state and federal legislators. Imagine that, they have schedules and share them. Silly people. So I would suit up Dad and we would go to every memorial, dedication, ribbon-cutting, whatever; if someone with some power was going to be there, Dad and I would be there, too—and you'd be guaranteed that I'd have something to say and find a way to get it said.

At the same time, I signed up to be an advocate on the national Alzheimer's Association website (www.alz.org). They sent me emails that told me what to write, when to write, what bills were in jeopardy and who were the power players. All I had to do was write or call. This advocacy thing seemed so . . . easy.

Then the magic started. A local coalition of senior-service providers, AGENET (Alaska Geriatric Exchange Network), asked our local Alzheimer's Resource Agency for names of caregivers to participate in a "fly in." (In Alaska, we have no roads to get us to the capital, so you've got to fly or boat into Juneau to meet with the legislators while they are in session—no kidding!) I screamed, "YES, ME, ME, PICK ME!!!!" And off we went.

It was Capraesque. We showed up with some appointments already made, a vague idea of what we wanted, and the willingness to try to get everything we needed. By the end of the three days, and against all odds, we had gotten about $250,000 in caregiver-earmarked bucks put back in the budget. Before we'd gotten there, we had been told we were too late, that the budget had been put to bed, that these are conservative times, and that oil and gas was the priority.... We were naive enough not to listen—and we prevailed!

Now I was addicted. I began to see how advocacy could create change. And I was then fortunate enough to participate in the Caring Today/Home Instead Senior Care "Give a Caregiver a Break" essay contest and be awarded a prize. Along with this came a small bit of publicity, which provided the opportunity for me to tell my story, shake a few trees for dollars and to write this blog. This was real progress.

The next year, I went back to Juneau a little more organized, a little more seasoned and a little tougher. And the legislators remembered me. And they remembered what we wanted. And I told stories. Stories of my dad. Stories of my friends. Stories of other caregivers. And they listened. And again we prevailed and programs were funded.

On the heels of that success, I went to Washington, DC, and participated in the National Public Policy Forum on Alzheimer's Disease. I met with my federal legislators and explained the crisis that was coming. Again, I was a little naïve, and the numbers were so huge that I was a little intimidated. (Asking for a billion anything takes guts.) But the programs got funded. The National Institutes on Health received a tiny increase (a pathetic two percent), but we again prevailed. I was winning. No, I wasn't winning. Caregivers were winning!

Those few conversations I'd had with caregivers had started a chain reaction that culminated in millions of dollars going toward programs to support caregivers. But we are not done yet. There is still so much to do, in my state, your state and nationally. But I can see the difference. I have been lucky enough to see that a few overwhelmed caregivers could get motivated, decide that they were mad as hell and not going to take it any longer—and make a difference.

Of course, I'm going to finish up with an appeal. The House of Representatives has approved a 1.9% increase in funding for NIH to spend on Alzheimer's research. Several senators are requesting that the funding be increased by 2.8% (a difference of $600,000). Every dollar counts and every letter counts, so please click here to tell your representatives that this research is important to you and your loved ones. Thank you.