Where Does All the Money Go?

Oh Right—I Forgot.
(Pun very much intended.)

By Vanessa Saunders
Founder, MiM (Memory in Motion)

When my husband Tim was diagnosed with Alzheimer’s, I was told that—as his caretaker—I had a lot of reading to do. I arrived home to an email containing no less than thirty-eight brochures.

Thirty-eight.

Not a single one told us how to get through breakfast the next day.
Not one mentioned how to preserve his routine or his identity.
And absolutely none explained what to do in that long, silent stretch between diagnosis and decline—where most people are left floating in fear and paperwork, with a refrigerator full of “resources” no one asked for.

We were told what would happen, down the road.
But not how to live with it—now.

Unless, of course, you count:

Locking him in the house (literally—alarms and all)
Alerting the police that he might wander (Silver Alert! How charming.)
Selling his car
Don’t let him walk the dogs
Don’t let him leave the house without me. Ever.
Oh, and cancel my vacation.
(Which I did. And I wish I hadn’t. I needed that break so much. Spoiler: caregivers are human too.)

We were told the State might come for our savings.
That we’d better look into assisted living—tout suite—because of waitlists.
That adult day care might help (it doesn’t exist in our area, and frankly, that might be a mercy).

 
What we weren’t told?
How to help him stay present.
How to protect his independence—while he still has it.
How to build a life that doesn’t feel like soft imprisonment, surrounded by laminated grief and brochure buzzwords like "dementia-friendly engagement."

We weren’t given a system.
We were given a warning.

 
So, I did what anyone would do, really.
I laughed. Then I cried. Then I got mad.
And then I started building a system.

So I started building one.
A system that helps people with this terrifying diagnosis live now. And their Supporters. Not just “prepare for decline.”
Fight, damn it. Fight.
Because if there’s a spark left, we owe it to them to keep it lit.

Something that recognizes Travelers as still here, still capable, still whole—and desperately in need of something more than a tracking bracelet and a pamphlet about “sundowning.”

 
I call it MiM: Memory in Motion—a platform for people in the early stages of Alzheimer’s (we call them Travelers) and the ones walking beside them (Supporters).
MiM isn’t a miracle. It’s a map.
A daily structure that helps preserve autonomy, identity, and hope—not in theory, but in real life.

And here’s the best part:
It works.

It’s in beta now.
We’ve already seen results.
Tim is writing again—something I never thought I’d witness.
And many of our earliest users are doing more, smiling more, connecting more… and forgetting a little less.

 
And then I did the polite thing: I reached out for help.
One of the first organizations I approached was—you guessed it—the Alzheimer’s Association.

You’d think, given the hundreds of millions they’ve raised, they’d be interested in something that wasn’t another walk-a-thon or print run.

But no.

I received a response—six weeks ago, it turns out.
I only just found it. (In my spam folder, which, frankly, is where metaphors go to die.)

Their response?

“We don’t have a system or staff person in place to pilot or partner with a platform like yours.”
Also: Would you like us to shred the materials you left behind?
Yes. Really.

They couldn’t even point me to someone at the national level to have a conversation with.

 
And that, right there, is the problem.

Organizations like this exist to raise awareness and “fund hope.”
But when something shows up that is hope—tangible, trackable, human—they don’t have a folder for it.
No team. No framework. No phone line. Just… “good luck.”

They have fundraising galas.
They have purple wristbands.
They have grants for brochures that explain, in detail, exactly how the disease will ruin your life.

But they don’t have a person to talk to someone like me.

 
So yes, Melissa. Please shred my materials.
But before you do, visit 👉 https://livewithmim.org.
You’ll see what’s possible when we stop asking for permission and start building the thing families actually need.

 
MiM exists because the system doesn’t.
And to be clear…
I’m not waiting for the Alzheimer’s Association to catch up.
I’ve already heard from the Milken Institute, APDA, independent researchers, and families across the country who saw MiM and immediately said:

“This. This is what’s been missing.”
MiM is live.
The work is happening.
And yes—just like Eric Idle said—we’re always looking on the bright side of life.
Even if we had to build the damn flashlight ourselves.

🧠 About MiM
MiM (Memory in Motion) is a daily support system for people in the early stages of Alzheimer’s (Travelers) and their Supporters (Family, friends, neighbors, co-workers.)  It’s not a cure. It’s a compass.

Learn more or join the movement:
👉 https://livewithmim.org

 
Please—share this and the MiM website with anyone and everyone you know.

So many families are still waiting for help that doesn’t yet exist. The truth is, what Im building is only the beginning. Numbers matter—to investors, to grant committees, to foundations holding the purse strings tight while caregivers drown in overwhelm and platitudes.

God knows, I hope there’s a cure before this work is done.
But in the meantime, we need something real.

And no, that’s not another bottle of overpriced supplements with a fake doctor smile promising to “sharpen your focus naturally.”

MiM is the opposite of snake oil.
It’s structure. It’s support. It’s showing up every day.
And it’s being built by someone living it—not just writing about it.

Help me make it real. Help me make it loud.

👉 https://livewithmim.org