Aug 9, 2012

Honey I Shrunk the Alzheimer's Caregivers

What I am saying is the most important needs of Alzheimer's caregivers are not being met or addressed and no amount of "lip service" can change the facts.

By +Bob DeMarco
+Alzheimer's Reading Room 

Honey I Shrunk the Alzheimer's Caregivers
We are so small no one can see us.

I am referring here to Alzheimer's caregivers and their loved one's who are deeply forgetful.

They claim there are 5.4 million persons living with Alzheimer's, and 15 million Alzheimer's caregivers. What is the size of our extended family in the Alzheimer's community? 40 million? 100 million?

We can yell and shout all we want. Nobody can hear us.

It seems to me that we are like the kids in the movie, Honey I Shrunk the Kids?

Where are we? Nobody can see us. Hey, look down here in the grass. Help.

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One thing for sure, we are not well organized like the HIV people, Cancer people, or Autism people. Now don't get me wrong I admire all of them for standing up for their rights. They know how to yell and they know how to make the knees of politicians shake. Right on.

How do I know nobody can see us?

The National Plan to Address Alzheimer's Disease is allocating about 15 percent of its proposed $156 million "to assist people with the disease and their caregivers". By the time they use the necessary funds to collect information, put in some infrastructure, and get the program going there won't be much coming down here into the grass.

Compare the National Plan to Address Alzheimer's Disease to a recent $88 million donation Terry and Kim Pegula gave to Penn State to build a new ice hockey arena, and to help Penn State get going in Division 1 men's and women's hockey.

In other words, this single donation is more than half of what is being proposed for a National Plan to Address Alzheimer's disease. Don't get me wrong on this one either, the arena will also be used by kids and students.

Comparing this single donation to Penn State to the size of the National Plan to Address Alzheimer's Disease shows you just how far we have to go.

As long as we stay down here in the grass we will remain invisible. This will only change when we rise up out of the grass and start worrying politicians with our votes.

So, we need to start getting organized, and we need a national organization that is focused on the needs of Alzheimer's caregivers and their loved one's.

There I said it. This organization does not exist today.

There is some good news though.

Little people all around the country are starting Memory Cafes. This is a needed and necessary component of Alzheimer's care. These Memory Cafes allow both the Alzheimer's caregiver and their loved to get out of their cave (or out of the grass) and do something meaningful, and life enriching.

We need more Memory Cafes and we need them now.

If we had a national organization that really recognized the needs of Alzheimer's caregivers, they would be assisting the little people and helping them get started.

How would they do this? By offering any interested party or group a plan on how to do it, how to get started, and how to get the cafe into the public awareness. This plan could be offered on the Internet as a download, so the cost of disseminating the plan would be De minimis. It wouldn't cost much to get a group of professionals to write this plan.

The above is not happening. Why you ask? Because our national organizations are not in touch with we the people in the grass, and they suffer from "not invented here syndrome". Or, they want to maintain control and do it themselves. Ever so slowwwwwwwwwly.

Here is some good news.

Memory Cafes are springing up all over America. They are being started mostly by the grass people. Like Pat Sneller and Carole Larkin in Dallas. Or cafe's like J. Arthur’s Memory Cafe in Roseville, MN.
The mission of J. Arthur’s Memory CafĂ© is to provide a social environment which allows individuals with memory loss and their caregivers a safe, supportive, and engaging place to interact with peers.
The Memory Cafe is not a new idea by the way. In the UK they are funded by the government.

How hard would it be to get thousands of churches across American to start local Memory Cafes? All they would need is the plan (I have one email me), and a few committed souls to get it going. They already have the infrastructure in place, rooms parking lots, etc.

So here is the deal. We are starting to come out of the grass as we realize no one is coming to help us.

Once we get out of the grass, we can start working on real programs that will help real people -- real Alzheimer's caregivers.

One idea would to be start creating more groups like the Wild Bunch. Alzheimer's people getting together and sharing. Carole Blackwell says this is also being done near her (Washington, DC area).

The grass people are already learning how to band together and start helping each other. We have no choice.

At some point in the future we might see a national Vote Alzheimer's campaign. I have a pretty good idea on how to get that going and I am thinking about it right now.

When we come out of the grass, and yes we will, politicians will start taking notice. Count on it.

In the future we might be able to swing a state or two. Now that would get some real attention. And trust me, if we start voting as an effective block the mullah will start flowing.

I am not saying there are not good things going on out there, and I am in no way minimizing the efforts of all the wonderful people that commit their time, energy, and efforts to volunteering and raising funds.

I know a lot of the best of these people and they are just as frustrated as I am -- for the most part.

What I am saying is the most important needs of Alzheimer's caregivers are not being met or addressed and no amount of "lip service" can change the facts.

We the grass people need to get organized, we need to start reaching out to each other, we need to get connected, and we need to stop waiting for someone else to do it for us.

Meanwhile, the people that can help us start our own initiatives, in our own small communities, better get down here in the grass now and recognize our needs, or we won't need you once forced to do it for ourselves and we won't,

Bob DeMarco is the Founder of the Alzheimer's Reading Room and an Alzheimer's caregiver. The ARR knowledge base contains more than 3,811 articles with more than 312,100 links on the Internet. Bob lives in Delray Beach, FL.

Original content Bob DeMarco, the Alzheimer's Reading Room