Why 30 Years of Dementia Caregiving Broke Every Assumption She Had (with Lori La Bey)

Um, at what point in this journey did you start your organization? I assume it was called Alzheimer's Speaks at that point when it was started as well, right?

Yes.

Yes.

I, um, it, I sold residential real estate for like 25 years, and I, and I worked specifically with senior transitions.

And so, you know, I worked with, um, nursing homes, um, market rate apartments, assisted living.

There, there wasn't any memory care in my area at all.

And it was the senior professionals, you know, as I'm sharing stories with my mom, they were the ones that encouraged me to step in this space.

They said, "Lori, we love what you do.

You've changed our industry.

You've, you've got more real estate agents understanding this move is different, but we really need you over here." Alls we're getting right now, and it was primary the Alzheimer's Association, which might not like me saying that, but that's how it was back then, was they wanted, you know, they wanted you on their list and they wanted your money, but there wasn't really a philosophy of tr- of care, of what do you do on a day-to-day basis.

And they said it, you know, "We hear from our clients all the time, it's just doom and gloom and give us your money, and you're giving people hope, and you're giving them tools, and you're giving them perspectives, and you're, you're being honest about your journey, the good, the bad, and the ugly." I mean, it's all rolled into one, just like life is right now.

You know, every day is not perfect, um, but yet when dementia hits, we seem to, we seem to up the ante on perfection and the way things were, um, which doesn't help.

Um, and so it was back in 2009 when I rolled out my blog.

I, I decided, well, I'll test that, 'cause I thought they were crazy, and I didn't even know what a blog really was, you know? And, uh, and I was shocked that people around the world resonated with our personal story, 'cause that's all I had to give really at that point.

And so I did a lot of, uh, praying and I'm like, uh, everybody thought I was like crazy, and I took my life savings and my retirement, and I slapped it on the table and I said, "I'm gonna make a difference, big or small.

I have no idea how that's gonna look like, but I, I, I'm, I know I need to do this now.

This is much bigger than me." And, you know, and I'm in, I'm in Minnesota.

I didn't really travel even in the US, and now I'm connecting with people all over the world, and so it really opened my eyes to how big this problem was and how similar, yet different everybody's issues were.

And I, but I did know that at that time I didn't want to align with anything that existed because I didn't want to be manipulated and kinda sucked into a machine that I didn't think was working.

And I, and I didn't feel I was strong enough to stand up to that, and so [chuckles] it was like, I'm just gonna do my own thing.

And I knew for sure that I wanted to be inclusive.

I wanted people with dementia, I wanted their families, their friends, I wanted advocates, I wanted every everyday businesses at all levels to participate along with our large organizations, both academic, medical, research.

Um, but also, um, I, I, I wanted to bring together the profits and the nonprofits as well, and the people doing good work that aren't even a business, that don't see themselves as valued, like I did.

Like, I was full of knowledge, but I was like, "Are you crazy? What would I do? I, I, I'm just a frustrated daughter." You know, my friends are like, "No, you need to be here.

You need to do this." And so I try to encourage other people to step in that space, and you can do that big or small.