Apr 222013
Alzheimer's Advocate Louise and Her Mother

Sometimes I feel like I’m standing with a crowd of people on a railroad track and there’s a freight train coming.

I can hear a whistle in the distance, but everybody else is chatting about the weather or shrugging their shoulders. They are saying things like, “It sure would be terrible to get stuck on this track when the train comes,” or worse, “I don’t hear anything.” The train continues to get closer—but no one moves. That’s how I feel about Alzheimer’s disease—because it’s coming and if we don’t do something to divert it, it’s going to cause a whole lot more damage and heartache than we can even imagine.

That’s why my husband Mike and I are advocates.  We have been on those railroad tracks. Alzheimer’s has touched our lives—probably like it’s touched yours.  And we are hoping, by working together, that we can make a difference.  We are hoping we can divert that train.

My dad died from Alzheimer’s disease in December 2011, but long before that, my family felt and paid the price of this disease.  Not just in money (although that’s a big part of it), but in time and worry—and even outright panic: How can my elderly mom help a man who is twice her size? How many times can my dad fall without breaking a bone?  Is he going to escape from the facility again?  And while all of that is going on, you’re also going through the process of grieving for the vibrant, funny, intelligent patriarch that you’d relied on for support and advice all your life.

I was born and raised in California and only moved to Idaho just before my dad was diagnosed.  The only flaw with living in this great state is that it’s a 10 hour drive back to my parents’ home.

But I’m lucky.  I have two brothers with wonderful wives who live close to my folks.  I didn’t have to worry about day-to-day coverage for my dad.  I visited as often as I could, but I felt lousy that I couldn’t do more.  Then Mike and I realized we could do something more—and we could do it right here in Idaho.

At the time, efforts to develop a state plan weren’t yielding any fruit, so we figured we’d try to get something going ourselves.  Mike, who has his master’s degree in gerontology, was already volunteering at Boise State University’s Center for the Study of Aging, so he got the ball rolling with its director, Sarah Toevs (who knows everybody, it seems).

Sarah put the word out, and over time, we had an impressive group of interested parties: a lobbyist, Teresa Molitor, who taught us the ins and outs of state government; a biology professor, Troy Rohn, who was doing Alzheimer’s research; a representative from AARP; the director of the Alzheimer’s chapter in our part of the state; and many others.

Alzheimer's Advocacy, Signing, Governor Otter

Signing ceremony with Governor Otter

What followed is a great example of a grass roots effort – all volunteer, all dedicated to achieving the goal of a state plan for Alzheimer’s disease and related dementias.  In corporate life, Mike was, among other things, a project director; he’s very organized. (You should see his desk—it doesn’t look like mine!) He drew on the various strengths of our group’s steering committee members and kept our collective “eye on the prize.”  Dr. Rohn, a popular speaker, began to educate Idahoans all over the state about the disease; Dr. Toevs headed a multi-pronged, statewide needs assessment.  We set up a website and wrote newsletters; we made sure our local media knew what we were doing.  And MacKenzie Rodgers, at the Greater Idaho chapter of the Alzheimer’s Association, played a large role in getting the word out about our progress.

After 2+ years and Lord knows how many hours of individual effort by dozens of people, our group submitted a plan to the Idaho State Legislature.  Just this month, they passed a concurrent resolution endorsing it! Our governor, Butch Otter, is also an enthusiastic supporter.  We reached our goal, but really, it’s only the beginning.  Next up is implementing the plan.

State plans like the one we developed for Idaho will help individuals and their families deal with the disease right now. For example, one of our primary goals is to increase awareness about resources available for caregivers and Idahoans with dementia.  We have already launched a new program,  complete with a media campaign, that helps our citizens reach the Alzheimer’s Association call center (which relays comprehensive statewide resources) through an easy-to-remember  phone number (211) that any Idahoan can call.

Alzheimer's advocates holding our just signed Concurrent Resolution.

Mike and Randi holding a just signed Concurrent Resolution

Working on our state plan has been rewarding, but we can’t stop there.  Mike has been an Alzheimer’s Association Ambassador for two years, and we are both here at the Alzheimer’s Association Advocacy Forum in Washington, D.C., to persuade our legislators to vote for more research funding and to support the HOPE for Alzheimer’s Act, which will reinforce the access to information about Alzheimer’s that we are trying to achieve at the state level.

If we are going to beat this disease, we will have to work together—in every state, at every level.  My mom is 91 and beginning to show signs of memory loss.  I hear the whistle of that train and I’m doing all I can to get us off the track.

Ask Congress to Support the HOPE for Alzheimer’s Act.

About the blog author: Louise Berlin is an Alzheimer’s Association Ambassador, along with her husband Mike.  They serve as a liaison between the Association and the office of Idaho Senator Mike Crapo. Together, they are working to make Alzheimer’s a state and federal priority.  This week, they are attending the 25th annual Alzheimer’s Association Advocacy Forum with more than 900 advocates to pay tribute to all those affected by Alzheimer’s and to help make real policy change .

  5 Responses to “Advocating for an End to Alzheimer’s”

  1. Idaho, thanks loads for setting the challenge for other states.

    • Yes, it is a great post, and I also like the metaphor of the train. This is an enormous issue and it is great to see so much useful work being done!

  2. My boyfriend has just been diagnosed with early onset Alzheimer’s. he’s only 60! I know it’s time that something is done and done soon.

  3. This is a fantastic piece and so well written. I love the lines about the train because it is so true. I panic when I think how Alzheimer's will impact this country in twenty years. It will take down the economy because of the cost of care. People have no idea what is coming, it is a title wave of baby boomers who will be Alzheimer's patients and it is on the horizon.

  4. The E-Advocate volunteer is an important part and VOICE of the community on Advocacy efforts. By signing up online you will be contacted by e-mail of important state or federal action items, alerts, activities and events that they may choose whether or not to participate in.

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