(upbeat music) - Hi everyone, Steve Adubato.

We kick off the program with an important compelling conversation, part of a series we call Voices of Aphasia.

We kick off with Meredith Gemeiner, who's social services and outreach manager at the Adler Aphasia Center.

The website is up right now.

Meredith, great to have you with us.

- Thanks for having me.

I'm thrilled to be here.

- You got it.

And let's make it clear, folks.

We had a longstanding relationship with Mike and Elaine Adler, who established the Adler Aphasia Center.

They've been our partners and friends for years.

We lost Mike and Elaine several years ago.

The work of the Adler Aphasia Center continues, but I don't wanna assume that people know what aphasia is.

Meredith, please help us understand.

- Yeah, yeah.

So, aphasia is actually, more common than people think.

They just don't know the word usually, of what it's actually called.

So, aphasia is a communication disorder that's usually a result of a stroke or a brain injury, could be a result of a brain disease.

If you've ever been unfortunate enough to know someone who's had a stroke and then they are unable to say the words or speak in a way that they can express themselves and find their words, then they most likely have aphasia.

It can affect reading, writing, speaking, and understanding language.

And as you can imagine, it's very hard to live with.

- And I told, and Elaine knew this, and I told Mike as well, that my dad who passed several years ago had aphasia, which was a byproduct of a brain disease that he had.

So, I saw and his inability to communicate, and for a guy whose life was about public communication, it was a real struggle, but I also saw my mom, who was his primary caregiver.

Let's talk about the challenges for caregivers of those who are dealing with aphasia.

- So, there's lots of them.

I run the caregiver program here and I facilitate five support groups almost weekly.

And so, I'm in the trenches and I see what they go through.

And I've heard this several times, that it's like living two lives, which is not even the half of it, because it's like living two lives, managing two lives, but it's also dealing with the loss of the person that you had in your life.

So, not only are you losing companionship and love and a way to communicate that you've always communicated, you're also managing their lives.

So, it can be, it's obviously, a lot of pivoting and can be really detrimental to a relationship.

- Talk about the specific help and services that the Adler Aphasia Center offers for these caregivers.

- So, like I said, I facilitate caregiver support groups.

I have a few that are virtual.

I have few in Maywood, New Jersey, and one in West Orange, New Jersey.

And I also offer education programs on all different types of topics, whether it's how to communicate with someone with aphasia or it's an attorney talking about long-term planning.

These are all free to people, whether or not they have a member at Adler Aphasia Center.

If you are a caregiver of someone with aphasia, you are eligible to join any one of our programs.

And the caregiver support groups are an amazing place to meet people who understand what you're going through and can you help guide you.

- You talk about being with others, caregivers of those dealing with aphasia.

The caregivers being with other caregivers.

Explain to folks why that's so important, because if you're not, you can try to empathize, you can say you understand, but if you're not experiencing it firsthand, it's very difficult to do that.

Please, Meredith.

- Yeah, I appreciate that, Steve.

Actually, in thinking about this interview, that was a theme that was going throughout my mind that people who are not caregivers can't fully understand it, and that comes out in almost every group I run.

And so, to meet other people who are going through what you're going through, not only does it help you with, you know, maybe tools and resources, but it's a validation, right?

You're not prepared in life to be a caregiver.

And once you're in it, there's no roadmap.

So, to be comfortable with where you are in life and what you're coping with, it's so important to have that validation and understanding, 'cause it can be very isolating.

And when you're with people who get it, you can make friendships as I've seen that like you've never had before, which I've heard people say, - You know, much of the reason we're doing Voices of Aphasia with the support of the folks at the Adler Aphasia Center is to create greater public awareness.

And one of the things that Mike and Elaine used to say to me was that it's important that those who are public figures dealing with aphasia, that the more people are aware of who those people are and what they're dealing with and what their caregivers are dealing with, the better, because people can identify with public people.

Bruce Willis is dealing with aphasia.

His wife is coming out with a book talking about her experience.

Why is it so important for Bruce Willis' wife to write this book?

And we're gonna try to get her on, to talk about her experience, and why is it important for public people, celebrities, others to share their experiences?

And they have every right to their privacy.

I wanna be clear on that.

But if they choose to be public, why does that matter in terms of public awareness?

- Right, I think it's a great question.

I think it's what I was saying before on a broader scale, right?

So, a group can be really validating, it gives you context, but if it's somebody that is a famous figure, it's not only, it's hitting more people.

So, if you hear someone talking in a context that you understand, there are so many things that caregivers go through that they don't know why.

So, you don't know what you don't know.

And if you have a public figure who is stating something that you're feeling, it can be mind blowing.

I do wanna say he has primary progressive aphasia, which is a type of aphasia that progresses into something that looks like dementia.

It's a type of dementia.

So, it's wonderful that she's out in talking about the aphasia, I also, we've seen that it's a little bit of a challenge, because the people we work with, they do not have dementia.

They come to our center, they know what they wanna say, and they have the cognitive awareness.

So, while it's been great for visibility, it's been a challenge, because every time we do outreach or go somewhere, people say, "Oh yeah, Bruce Willis, he has dementia, he has that."

And we want people to know that people with aphasia can be just like all of us.

They just can't get the words right.

- And it's so interesting is that my dad had dementia, had aphasia.

Mike Adler did not have dementia, had aphasia.

Not everyone who deals with aphasia, or caregiver, or someone with aphasia, it's not the same.

We need to distinguish.

Last question before I let you go.

Your passion for this work comes from where?

- I had a grandmother who I took care of as a young kid, and now, I am in the sandwich generation and a caregiver myself.

I like to call it the panini generation actually, because it can be squeezing.

- I like that.

- Yeah, so I've been in the nonprofit world and doing support groups for over 20 years and it's just something I think that people need attention and need to know about.

- Meredith, we thank you for joining us.

We wish you and the team at the Adler Aphasia Center all the best.

And we'll continue in this mini series Voices of Aphasia.

Thank you so much.

Wish you all the best.

- Thank you so much, thank you.

- You got it.

Stay with us, we'll be right back.

- [Narrator] One-On-One with Steve Adubato is a production of the Caucus Educational Corporation.

Funding has been provided by Delta Dental of New Jersey.

The Russell Berrie Foundation.

Holy Name.

Valley Bank.

Johnson & Johnson.

NJM Insurance Group.

United Airlines.

Newark Board of Education.

And by Robert Wood Johnson Foundation.

Promotional support provided by BestofNJ.com.

And by New Jersey Monthly.