CREATING, CAPTURING AND KEEPING MEMORIES WITH ALZHEIMER'S

Transcript

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I decided to quit everything and my husband supported all this and you know working on figuring out what is like the easiest way for us to save our memories in these spaces.

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So I built Connect and for anyone who's curious on how it works is I know, and you know this, that it's just really really hard to organize memories and stories and also think about making it accessible to all folks, of all types, of all ages.

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Think about making it accessible to all folks of all types of all ages.

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And if we think about the Facebooks or the Instagrams or things that we kind of all hate because they're actually not true storytelling places and they also connect sorry, they also create more disconnection than connection.

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I decided to take what I hate about these environments, what I hate about memory preservation today, and build connect.

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Parenting up caregiving adventures with comedian Jay Smiles is the intense journey of unexpectedly being fully responsible for my mama.

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For over a decade I've been chipping away at the unknown, advocating for her and pushing Alzheimer's awareness on anyone and anything with a heartbeat Spoiler alert.

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This shit is heavy.

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That's why I started doing comedy.

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Alzheimer's awareness on anyone and anything with a heartbeat Spoiler alert this shit is heavy.

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That's why I started doing comedy.

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So be ready for the jokes.

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Caregiver newbies, ogs and village members just willing to prop up a caregiver.

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You are in the right place.

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Hi, this is Zeddy.

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I hope you enjoy my daughter's podcast.

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Is that okay?

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Today's supporter shout out comes from Apple Podcast.

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Here is she.

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Love this episode.

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Loved hearing the serious yet comedic approach with both J Smiles and Kelly Kells.

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Kelly Kells hashtag the Grandma Whisperer.

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They brought to the conversation of caregiving generationally, especially about our mothers, grands and great-grands.

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I relate to being connected Our mother and elders and providing care in a beautifully empathetic way.

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Thank you, harry Shee.

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If you want to be a supporter shout out recipient, please leave a review on Apple podcast, youtube or Instagram.

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Thank you.

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Today's episode creating, capturing and keeping memories with Alzheimer's.

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Hey, what's up?

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Parented Up family.

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Guess what have you ever wanted?

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To connect with other caregivers?

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You want to see more behind-the-scenes footage?

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Want to know what me and Zeddy are doing?

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I know you do All things.

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Jsmiles are finally ready for you, even when I go live.

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Do it now with us on Patreon.

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Join us in the Patreon community.

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Catch everything we're doing.

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Visit patreoncom forward.

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Slash JSmilesStudios with an S Parenting Up community.

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You know, I like to have a little sizzle, a little pop.

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We laugh along the way, we learn something and we meet new friends.

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Today we're going to smash all that up together.

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We have Omar Alvarez and while he has done a whole bunch of really cool things in life and he's not even that old and he's gorgeous but listen, we're not on here.

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Okay, trying to get married and get dates.

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But now, if you end up getting married to him and get a date, just listen, dm me.

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I do want a percentage.

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I expect to be there and I like oysters that's my favorite meal.

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But before we get into all of that, okay, we are here talking about caregiving loved ones, how we manage taking care of the people we love when dementia pops them in the face.

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And Omar has a way to get around all that stuff.

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What's good, omar, how you doing honey.

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Yo Jay, all good here.

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It's great to see you again.

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Thank you for having me on the show and hello to the community, nice to meet y'all.

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Yes, yes, yes.

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And for those of you who may be audio, only know that you can always pop on over to YouTube and see us, but if it's audio, only just know.

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Listen to the warmth in his voice and know that everything really is born of love.

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So, quick backdrop Let the parenting up community know, know, how did you get into caregiving you?

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Because you're not tell.

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Okay, let's do it like this give us a sprinkling of how old you're not.

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I don't know if you want to give up, give away your age, but at least say hey, I'm not 50, I'm under what age?

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Who is it that you are so connected to that?

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You said I've got to be an active member of this community.

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Absolutely, jed.

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So you know, like all of us, we all have our experience of like dementia in this community and supporting the people we love.

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And for me, this actually started when I was younger, in high school.

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I'm 33.

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So I'm getting in the middle age lane right now.

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I just turned 33.

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I wouldn't say I'm a proud 33 year old, but I'm just glad to be alive.

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But yeah, when it comes to the space and this support and care system, I'm sorry, hold on.

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Did you say I'm getting to middle age, listen here.

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Hold on.

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Did you say I'm getting to middle age, listen here, honey you are so far from middle age you don't even have a wrinkle.

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Anyway, continue, they're so funny.

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For me, when it comes to the dementia and caregiving space, I had a very direct role into seeing my grandfather have a have a dementia for 10 years before his passing and then, separately from that, I was also volunteering in high school at an independent senior living space while I was in high school.

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So, when it comes to the environments and understanding and learning, my passion for giving, my passion for listening, my passion for understanding what is memory, recall, memory activation all that started in high school from personal experience with seeing my grandfather go through it.

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But, as we all know, it's not just him that has to navigate that experience.

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It's our whole family that navigates that journey with him.

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Yes, okay.

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Volunteering at a senior center in high school yeah, what rock did you grow up under?

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Like what?

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Who the hell does that, omar Well?

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I was.

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You know I have the really, really fun experience in high school where people tend to talk about how they would go back to college and you know that was like their formative fun years.

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But I had an amazing community in high school where our high school really encouraged us to volunteer and less than a mile away from our high school was a huge independent senior living space.

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So we used to frequent it during the holidays, frequent it throughout the year to check in on the seniors there and spend time being present present and listening, present and asking about their lives.

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And when you're at that age you are right in hindsight go me, go little Omar, like what a cool guy.

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But in hindsight that really is an actual view of my passion for storytelling.

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You know, as we all know, when you're in those spaces you tend to remember your life and think about what is remnant therapy, where I start to understand those topics.

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Yeah, I was very lucky to have that space so close to home so I can actually learn from those that were before me and understand what the healthcare system needs for our aging population.

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Where did you grow up?

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Where was this high school?

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Where did you grow up?

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Where was this high school?

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Yeah, I grew up in Franklin Park, illinois.

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It's about 25 minutes away from O'Hare in Illinois, but I did grow up in Chicago proper prior to moving there, got it.

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I know I've always enjoyed listening to old people.

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I got to tell you I really like kids and I like old people.

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I happen to be living in the middle of that.

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I don't really like people my own age nearly as much but kids and old people, oh my God.

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The stories.

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Right, kids are normally using their imagination to just make up a story, but I can listen to them.

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You could call it a lie or you could call it fantasy.

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I choose to call it fantasy.

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And the elderly?

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They're telling you stories of yesteryear and because you didn't live any of it and you didn't see it and it sounds like a fantasy.

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It's like what?

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You didn't have a car, you didn't have lights or it was illegal for a woman to own a house.

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Whatever the story may be, it sounds like another world.

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I can imagine that you having that experience in high school prior to knowing this would be your line of work, actually informs a lot of what you do.

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Absolutely.

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I had no idea, but I didn't know at that time that it would be helping me.

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You're right.

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I think the most beautiful thing about stories is the power that they have and the power of the folks that lived in that right.

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There's something really special about my grandmother, who is in rural Puerto Rico.

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She's alive today, thank God.

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Yay, you know what An alive grandmother is an angel on earth.

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Absolutely, and like getting to see her and the way she still lives in that same home that she raised my mom and her siblings in, and the way she just thinks about life, and it's such a beautiful way to see someone who was just to be direct, not ruined by social media, not ruined by poor communication standards.

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You actually have someone that values like direct conversation and is always, always positive, and I think it's because she's done a great job of like staying in the space that she feels the most comfortable in.

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She has not been jaded by all the news and the media and the constant pings back and forth, you know, and it so keeps her pure.

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She's truly an angel on earth, as you said.

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Yeah, I love that.

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So now your caregiving.

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I'm sure there was some period of time between high school and becoming so involved with your grandfather's care.

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What were you doing professionally or socially during that space?

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Yeah, yeah.

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Well, it kind of combines a bit more into what's happened later, which is now that I'm able to connect with so many caregivers.

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About that experience and also understanding the needs of the caregiving community today, I think what's quite important about my experience in volunteering in these independent living spaces was directly seeing why those administrative officers and folks were so excited about the volunteers At that point.

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I didn't fully understand at that age, but now I do.

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It's because they're so burnt out, right.

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These administrators, these caregivers, are exhausted for many various reasons.

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And then, similarly, when I would go to Puerto Rico earlier in that journey, same thing understanding, like who is helping who, watching the family members come in and out from all parts of the United States to go support my grandfather in Puerto Rico, and also understanding what the relationship dynamics of these caregivers are to our family.

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You know, I don't think anyone in my family understood that this caregiver coming into the space to help my grandfather was not just providing care for him.

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This person became part of the family.

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They were giving us updates every single day.

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They were telling us their needs, what they need, support in how exhausted they were.

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And now, as an older adult and as I think about supporting these spaces and helping people.

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I think about that right away to heart is these folks are exhausted and these folks are not supported.

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The government has failed in supporting this space.

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It's becoming a bigger conversation because of it.

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Yes, very much, very much.

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Now I'm not going to let all of the juicy bits and pieces out just yet, but hey, parenting Up Community, he has created and built an amazing product and there are multiple products that are coming out.

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I'm going to let him tell us a little bit more about that, but give us a tad bit of that fantastic background that has kind of led you into you know what.

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I want to back up a second, because we are a family caregiving community.

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Your grandfather, what?

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Let your family know?

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Hey, he's not quite himself.

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Yes, he's aging.

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Yeah.

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But this is not normal senility.

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He's not just rambling on about the news.

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You know, we think he needs medical intervention are you?

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aware of, kind of maybe, what some of those signs were, that let the family know we got to do something absolutely a combination from a audible uh decline.

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We start to hear like a change in the way that he was speaking.

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That was a pretty big earlier.

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That's a pretty big sign early on in the process.

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It's like, hey, Papa, what's what we call them?

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Papa is starting to talk a little bit differently.

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And then you kind of go into the other things that are cognitive, right.

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So his shaking- of hands.

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One second, Omar, just because there are a lot of people who they're at the very beginning and they're trying to determine who in our community if there's a problem.

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So when you say he was starting to speak differently, are you talking about the pace of his language or he was using different words?

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Can you give a little more detail?

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Absolutely.

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We start to see a change in the way he would respond.

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First off, we start to see like a pace difference he would respond.

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First off, we started to see like a pace difference.

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So as we're currently talking, we can kind of see like a back and forth interaction, almost feel free and almost immediate.

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We started to see like a delay in some of the responses that he was giving.

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So that was one thing, and then, separately, with that great, great follow up, there is also the way he was saying his words, at least for us in the in the Puertoerto rican dialogue, the spanish community, we do talk a little bit different.

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We talk a little bit fast.

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There is a little bit of a a spiciness of the way we talk, if you will, and I love it.

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Yeah, I love it completely, all the time and that's the thing is, it's hard to also hear that the way that his enunciation in certain characters and words was also changing.

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And I think, with Puerto Rican culture like this just being such a dynamic back and forth exchange of words at a speed that's often sometimes hard to understand, even before his diagnosis continues, prognosis, right, that it was very clear for us that something wasn't adding up.

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And then to the next part.

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You know that's was very clear for us that something wasn't adding up.

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And then you to to the next part.

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You know that's one of the signs.

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A separate one is watching his his, the way he was writing, the way he was like unable to like hold the pen in a certain capacity, be shaking his hand while he's writing something, and also like a delay in the way he wanted to write a phrase.

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You know, I think that's those are the things that we were able to see is like huh, audibly, something's not adding up anymore.

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And then, separately, when he's trying to write something, you can tell that there's almost like this frustration because it was early, right, he had early onset.

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So we can tell that he was like getting frustrated with himself and at first we did think it was related to like an aging decline, but no, like it was like he was just fighting his brain basically to like write these existing patterns, existing words, phrases he had, and it was just getting harder for him.

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Yeah that had to be tough that had to be tough yeah, uh, he was, uh, when the when the family to, and the thing was with the Puerto Rican Latino culture as a whole.

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There is studies that are done that show that oftentimes the healthcare systems and the relationship to doctors and the healthcare spaces sometimes we kind of push it away.

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It's almost like the very last resort.

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You know where I feel, like in other cultures if you're just sick you go straight to the doctor.

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But my grandfather was hardheaded, he did not want to entertain the spaces, but my grandmother and my family really pushed him to go and then that's when this test started happening and unfortunately, we believe there is multiple triggers of stress levels.

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That happened in our personal family.

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That, unfortunately, we believe are the reasons why his dementia started earlier.

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Okay.

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Was he living in Puerto Rico when the diagnosis occurred?

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Yes, and that's.

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He was living in Puerto Rico and as much as I love my island, I love the culture, my people, everything around it, in comparison to, let's say, some places that we both know, like in Chicago or Texas Right, it is a different quality of care, so it did become a bigger topic in the family.

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My mother, zeddy, was in Montgomery, alabama, when everything started to unravel and while it is the capital of the state, the state has never been at the forefront of technology.

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It's at the forefront of racism, but that is not what you want when it's time to have your LO treated.

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So I found that it was necessary to take her to Los Angeles when it was time to have some significant testing run and then ultimately move her to Atlanta when we wanted maintenance and management of her care.

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So it was.

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I do understand what you're saying, because it there's no particular area or part of the US where you could even say, oh yeah, we just let's just get to a certain there's no even certain state like their cities.

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They're literally just.

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There are certain cities where you can say, ok, if I can get within this training or research facility, I should be OK.

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Now with your grandfather, what was he diagnosed with?

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Alzheimer's.

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Yeah, early on to dementia, and then the doctor was basically saying that the signs relating to Alzheimer's yeah, another something that you asked earlier, jay, which I actually learned recently in talking to neuroscientists and just in watching different kinds of media formats too, is an easy not an easy wrong wording, pardon, but another way of almost thinking about.

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Like, if you're wondering if something's happening from a cognitive ability to someone you love, there is a simple thing you can almost try, which is you ask a person to grab a piece of paper and then you ask them to draw the time, the clock, and then say, hey, can you draw 7 14 pm?

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Hey, can you draw 3 12 am?

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Like you know, just go ahead and, like, allow the person to really think about, like, huh, this is something I've seen my entire life a clock, can I go ahead and use the small and big hand to get to the time that the person's asking me?

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That was something I wish we knew earlier, because I feel like that would have allowed us to almost, like, really think about what are the, the earlier signs that we can measure in that capacity.

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The technology today, as you know, has changed, where now you can use your phone to understand and measure if people are responding in a particular way on your phone or tapping things differently.

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Those can almost be queued up to measure if someone might be showing signs of early dementia.

00:20:52.221 --> 00:20:52.741
I love that.

00:20:52.741 --> 00:20:53.222
I love that.

00:20:53.222 --> 00:20:53.723
You're right.

00:20:53.723 --> 00:20:57.152
There are a lot of apps and things of that nature.

00:20:57.152 --> 00:21:03.335
But a sheet of paper, a pen or a pencil and doing the analog clock just old school, draw a circle.

00:21:03.335 --> 00:21:05.319
A pen or a pencil and doing the analog clock just old school, draw a circle.

00:21:05.319 --> 00:21:07.243
That's right.

00:21:07.243 --> 00:21:08.026
I recall.

00:21:08.026 --> 00:21:09.931
You know I never thank you for that.

00:21:09.931 --> 00:21:19.075
I never thought about using that as a tool for a marker, just to see as a baseline.

00:21:19.075 --> 00:21:27.532
I remember them asking that of my mom and I was heartbroken of the way her clock looked.

00:21:27.532 --> 00:21:46.511
It was, um, I'm gonna say it was a free form, oval and it had some numbers down in the four, five, six area and it wasn't four, five and six, that was just the area that they were in.

00:21:47.680 --> 00:22:14.260
And then the hands, the long and the short hands, did not make it inside of the circle at all, they were just somewhere else floating on the page and I remember just collecting myself and you know, walk into another part of the room and thinking, just collecting myself and you know, walk into another part of the room and thinking this is, this is bad.

00:22:14.260 --> 00:22:15.385
I don't know what just happened, but I don't like it.

00:22:15.385 --> 00:22:16.048
Yeah, so that is something.

00:22:16.048 --> 00:22:31.634
Parenting Up Community Omar just gave us all a very, very non-scientific but extremely executable method of testing if something is not connecting.

00:22:31.634 --> 00:22:38.388
Another thing that they told me was asking your LO to read out loud.

00:22:39.734 --> 00:22:46.249
Now obviously I think you would need to be someone who you know, because you would know what their reading level is.

00:22:46.249 --> 00:22:52.887
You know, some individuals may have have a PhD, others may have finished the eighth grade.

00:22:52.887 --> 00:23:01.981
So you need to be someone you are familiar with so you can say OK, this is a book or a newspaper or a magazine, that reading this should not have been a problem.

00:23:01.981 --> 00:23:08.596
And if they cannot look at it should not have been a problem.

00:23:08.596 --> 00:23:15.451
And if they cannot look at it, there's something that happens with the brain looking at the page and connecting with the words and saying it out loud.

00:23:15.451 --> 00:23:20.922
That is very different than writing or watching television.

00:23:20.922 --> 00:23:23.988
So that's two simple things.

00:23:24.127 --> 00:23:41.460
So okay, point jay, if you have the opportunity and you're nervous about the loved one, right, yeah, audible, and then something written for them are two very easy, affordable things that we can all do, that don't cost money and like you're right, and that clinical outcomes.

00:23:41.460 --> 00:23:45.271
But we all know, if we love someone, you really know them.

00:23:45.271 --> 00:23:51.957
You can tell right away if they're reading and there's a sound rate or if they can't draw a clock in the time you're asking them to do it.

00:23:52.618 --> 00:24:15.748
Exactly, and you know it also should be an exercise that allows other family members to maybe get on board, because I often, you know, there's kind of one person who's kind of pushing to say, hey, you know, mom, dad, sister, cousin, this is not quite, they're not kind of doing right.

00:24:15.748 --> 00:24:21.801
Like you know, Auntie Teresa is not quite right and everybody's like, well, what do you mean?

00:24:21.801 --> 00:24:29.906
You know she's under a lot of stress or she's doing too much, she's working too hard, or you know someone just passed away and she's sad.

00:24:29.906 --> 00:24:49.698
But if you had this example to tell other family members, that's kind of hard for them to ignore, and so then maybe you're not fighting on your own like climbing up a brick wall or like an example I like to use is, you're not a fish climbing a tree.

00:24:49.698 --> 00:24:53.484
You have something on your side to help you out.

00:24:53.484 --> 00:24:58.019
So hopefully that will be able to help some people in the community.

00:24:58.019 --> 00:25:14.530
All right, so let's talk about this fun stuff, this fun stuff that you have created to help family members and caregivers smile through the hard times.

00:25:16.557 --> 00:25:18.744
The umbrella product is called Connect.

00:25:18.744 --> 00:25:20.604
Tell us about it, Omar.

00:25:22.096 --> 00:25:23.537
Yeah, absolutely.

00:25:23.537 --> 00:25:44.931
When someone is showing signs of dementia early and they're able to have the understanding and awareness that they're losing their memories, and separately as a family, if you're able to understand that that person you love so much is also losing the not just your memories, right, they're losing historical knowledge, they're losing cultural insight.

00:25:44.931 --> 00:25:55.297
They have all this insight that the family has yet to ask or yet to know about, because we're all busy and sometimes you don't really know what to say or what questions to ask in these capacities.

00:25:55.297 --> 00:26:17.567
That's when my passion for storytelling outside of volunteering in an independent senior living space, but really thinking about specifically what are the stories that we want to capture and why is it so hard to actually find a product that makes it easy for our families and friends to connect in these private spaces so that vulnerability happens?

00:26:17.567 --> 00:26:26.234
So I uh, quite everything I was working on um about almost almost two years ago actually had to share this with you, jay.

00:26:26.234 --> 00:26:34.241
I don't know if you know this part, but my grandfather is half the reason in Building Connect and I want to share this with the caregiving community.

00:26:34.824 --> 00:26:45.637
One of my friends that was my age, 31, 32 years old was diagnosed with cancer and halfway through his two and a half year battle, it was obvious that it was terminal.

00:26:45.637 --> 00:27:12.295
So you have someone that's my age, that's married, also seeking a space to save his memories and his connect with his friends and family that are around the country, or even that the fact that he has a wife like he, he wanted to save these memories for her, messages for her, you know, like a heads up for a birthday or something like that.

00:27:12.295 --> 00:27:34.285
I decided to quit everything and my husband supported all this and you know working on figuring out what is like, know, and you know this, that it's just really really hard to organize memories and stories and also think about making it accessible to all folks, of all types, of all ages.

00:27:34.285 --> 00:27:45.746
And if we think about the Facebooks or the Instagrams or things that we kind of all hate because they're actually not true storytelling places, and they also connect sorry, they also create more disconnection than connection.

00:27:45.746 --> 00:27:52.398
I decided to take what I hate about these environments, what I hate about memory preservation today, and build connect.

00:27:52.398 --> 00:27:56.477
So now anyone can join, connect and we've created these storybooks.

00:27:56.857 --> 00:28:09.641
These storybooks are books like my partner remembering them my 20s, millennial life, right, these really fun sections of life that someone can decide to select, and every single book has five chapters.

00:28:09.641 --> 00:28:18.192
When you open up a chapter, we already give you questions for you to answer in audio video text and even upload pictures into it.

00:28:18.192 --> 00:28:20.238
What's really really really special?

00:28:20.238 --> 00:28:20.638
Um, and some.

00:28:20.659 --> 00:28:22.243
As we all know what the community is, storytelling is really powerful.

00:28:22.243 --> 00:28:23.990
It has effects of reminiscence therapy to allow the person to remember their lived in.

00:28:23.990 --> 00:28:25.634
And so, as we all know what the community is, storytelling is really powerful.

00:28:25.634 --> 00:28:31.288
It has effects of reminiscence therapy to allow the person to remember their lived experience and what they've done.

00:28:31.288 --> 00:28:39.729
But yeah, we then kind of allow the person to share these memories into a feed for those people they've invited to see.

00:28:39.729 --> 00:28:49.880
What's pretty special is you can continually add people over time as your family expands and it just it's kind of like the Netflix of your family memories and stories, because you can continually add people over time as your family expands and it just it's kind of like the Netflix of your family memories and stories Cause you can go back.

00:28:49.880 --> 00:28:57.326
I can watch Jay smiles and kind of see like her talking about all these elements of her life in five years, 10 years, 20 years.

00:28:57.326 --> 00:29:03.863
You just never know when you're going to want to go back and listen to these people that have affected our timelines and our lives forever.

00:29:05.406 --> 00:29:33.049
Wow, let me tell you how many unorganized videos I have of very significant moments, of of me capturing a thought directly, or I'm capturing others.

00:29:33.049 --> 00:29:35.803
It may be the environment.

00:29:35.803 --> 00:29:37.982
I could just be walking somewhere.

00:29:37.982 --> 00:29:54.798
Maybe I'm walking through Europe, maybe I'm walking through Cape Town, maybe I'm walking through Cape Town, or I am talking to my mom from a time when she could actually answer a question.

00:29:54.798 --> 00:30:11.291
But trying to put them all together in any manner that would read as a story or would be logical or reasonable to another person, that sounds so daunting.

00:30:11.291 --> 00:30:12.676
I don't even want to.

00:30:12.676 --> 00:30:14.864
I don't even want to start that project.

00:30:14.864 --> 00:30:16.540
I have, I have them spread out.

00:30:16.540 --> 00:30:39.776
I probably have four cloud accounts and who knows how many hard drives and who knows how many hard drives.

00:30:39.796 --> 00:31:01.557
So what you are offering to those of us who are part of this caregiving journey sounds simple and that's inspired by my experience and speaking to people like you, jay is we all know that when it comes to helping people and caring for people, we also have to think about our own capacity, our own mental health, our own balance and, when it comes to activities right, we also Balance.

00:31:01.577 --> 00:31:02.281
What are you talking about?

00:31:02.281 --> 00:31:02.945
All my balance.

00:31:03.509 --> 00:31:04.494
Right, what balance Right?

00:31:07.520 --> 00:31:10.487
I like that you are helping us consider that.

00:31:10.507 --> 00:31:11.209
Balance.

00:31:11.209 --> 00:31:12.010
What are you talking about, Omar?

00:31:12.010 --> 00:31:12.912
Balance, Right, what?

00:31:12.932 --> 00:31:13.373
balance I like that.

00:31:13.393 --> 00:31:18.522
You are helping us consider that, considering it and it's you know, I find it pretty interesting that, like, when it comes to caring for someone, it's really, really hard to step away.

00:31:18.522 --> 00:31:40.318
Right, human-based activities are what they're needing and what we're needing too, but there are moments where we just need to step away for a hot second right, and what I'm building right now that I've ensured this is the first one, I'm sharing it out loud is we're actually going to allow Connect to almost act as, like an interviewer, so that way you hit a button and then you're allowed for Connect to just talk to the person and ask them about their life.

00:31:40.318 --> 00:31:49.196
Like, the application will be smart enough to know Jay Smiles, in the past you mentioned that you were in Birmingham, alabama, jay Smiles.

00:31:49.196 --> 00:31:56.401
It'll be very specific to the person's life, so it almost feels like as a person's laying down or just closing their eyes.

00:31:56.401 --> 00:32:07.143
They're almost having this really meaningful engagement about the things that they really care about their life, their kids, their grandkids, that their cultural insights that they wanna pass on.

00:32:07.775 --> 00:32:46.767
Like that to me is something I'm really, really, really excited about providing for the community, because we all know that people just love talking at that point, if they can, and sometimes these triggers right, these moments of triggers, whether it's song based or name based, these are moments that can sometimes sometimes bring that person back for a second or a minute, and those are the moments that we all we cherish and we love and we crave to hopefully happen until a certain point that we all know you can't Right, but while you have them, it's something so freaking special to just like sit there and let you watch this engagement, and I'm really, really excited about this feature for the community and for the families in particular.

00:32:49.457 --> 00:33:04.886
The foresight that you've had to allow the person suffering with the disease to have some say-so on how he or she is remembered.

00:33:04.886 --> 00:33:25.390
It's so powerful Because after the disease is announced, so to speak, more times than not there becomes this rush to plan for death.

00:33:33.494 --> 00:33:38.067
Comes this rush to plan for death and no one is really stopping to enjoy the life that they're still living.

00:33:38.067 --> 00:33:40.030
You're so busy being sad and trying to or trying to cure it.

00:33:40.030 --> 00:33:41.434
You know it's not true.

00:33:41.434 --> 00:33:45.567
We're gonna you're gonna just we going to stop eating sugar and bread.

00:33:45.567 --> 00:33:50.741
We're going to walk 10 miles an hour and that's going to beat it right.

00:33:50.741 --> 00:33:53.304
So there's a level of denial that occurs.

00:33:53.304 --> 00:34:01.557
And then there's a lot of sadness and almost preparing for death.

00:34:01.765 --> 00:34:25.358
But then if you're allowing the person who is suffering to sit in the driver's seat, so to speak, and produce to be the producer of this video, or these talks, these photographs um, that's really very powerful because they don't.

00:34:25.358 --> 00:34:30.271
The individuals that I've met with the disease.

00:34:30.271 --> 00:34:33.219
They have something to fucking say.

00:34:33.219 --> 00:34:34.628
They have something.

00:34:34.628 --> 00:34:36.211
They still have something to say.

00:34:37.094 --> 00:34:37.675
They're in there.

00:34:38.157 --> 00:34:46.268
Yeah, and I've watched my mom, even within the last week or so, omar get frustrated, and we're in year 12.

00:34:46.268 --> 00:34:51.157
I've watched her get frustrated, trying to get out a word, like she'll start.

00:34:51.157 --> 00:35:03.231
You know, she starts saying Penny, and she's clearly not trying to say Penny, but she just goes Never mind and then she just like, puts her head down.

00:35:03.231 --> 00:35:15.646
So they have something to say and this product that you're offering those of us who are caring for them does make it easier for us to help them.

00:35:17.268 --> 00:35:20.373
Um, yeah capture their words and their memories.

00:35:20.373 --> 00:35:21.715
So so, thank you.

00:35:22.275 --> 00:35:24.498
Thank you, thank you for having me on and letting me share this.

00:35:24.498 --> 00:35:28.878
But one more thing too is I'm going to be very vulnerable with you, jay, and the community.

00:35:28.878 --> 00:35:30.364
I can get very emotional here.

00:35:30.364 --> 00:35:39.572
But part of like watching someone you love slowly pass away through time is also, to your points earlier, watching how the family reacts.

00:35:39.572 --> 00:35:48.565
And also, I think the worst part is we don't really know what we're going to miss or the regrets, and not asking the questions we want to ask until they pass.

00:35:48.565 --> 00:35:52.914
Then you, you live with these, these regrets of like shit.

00:35:53.215 --> 00:36:02.217
I should have asked these questions or you watch, like your for me, in my case, I watched my mom and my mom was so close to her dad, so close to to her.

00:36:02.217 --> 00:36:04.545
She went through depression when he passed.

00:36:04.545 --> 00:36:08.835
It was a really, really hard experience for the whole family to join her in this moment.

00:36:08.835 --> 00:36:28.695
And you know to this day, I think we all can agree that psychologically all of us we can only remember the most recent activities of someone right, and when you're dealing with losing someone you love, sometimes it gets really really hard to remember the person before, right.

00:36:28.695 --> 00:36:38.835
So now I feel like sometimes we see our brains fighting to remember the the person they were before the disease took over, and I hate talking about it, gets me so emotional.

00:36:38.855 --> 00:37:05.516
But, like that is the part that I'm really excited about is like, yes, you, you deal with what you need to deal with your family, you care for your family and then, hopefully, at the when it inevitable happens, I hope that this application, these memories, these stories can then be used to be like that was my dad, that was my grandfather, that was my mother, like you have these audible moments of where their name came from, where they grew up.

00:37:05.516 --> 00:37:09.369
Right, those are the things that we love about our parents and our grandparents.

00:37:09.369 --> 00:37:11.715
Right, it's not just like a picture of their birthday.

00:37:11.715 --> 00:37:18.648
No, it's a story to sit at a table at Christmas or birthday and you just laugh about all the things that someone did back then.

00:37:19.811 --> 00:37:25.324
Yeah, feels to me like the the caregiver dementia.

00:37:25.324 --> 00:37:35.358
Digital version of like your ancestry dna yes, because ancestry.

00:37:35.378 --> 00:37:37.005
You know, those things are just dots there.

00:37:37.005 --> 00:37:40.210
I have ancestry, I paid for all that stuff and I'm like these dots, who cares?

00:37:40.710 --> 00:38:07.030
right, right, I don't know any of those people right, because you know, I'm sure you know the you video your granddad or your uncle, and they may mention a friend or a co-worker that you can then go call and say, hey, you know my, my grandma, I'm so and so, and they mention you in this video thing that I'm, you know, my grandma, I'm so-and-so, and they mention you in this video thing that I'm, you know you got any memories of them?

00:38:07.030 --> 00:38:09.373
This might be a person that you never even knew about, right?

00:38:09.373 --> 00:38:14.045
So that can lead you to even finding more memories and connections.

00:38:14.045 --> 00:38:37.550
So I know that you speak highly of using it as a way that you it can advise you on which questions to ask and how, how to capture these memories and the technology that'll make it so much easier for us, which we need because we are so emotionally and psychologically spent.

00:38:37.550 --> 00:38:41.034
Thank you, you, thank you, thank you, thank you, thank you.

00:38:41.034 --> 00:38:48.512
And you're going to have some other products that are coming out associated with Connect.

00:38:48.512 --> 00:38:49.293
Tell us about that.

00:38:49.914 --> 00:38:55.413
Yeah, so a big, a big driver of that point in my life.

00:38:55.413 --> 00:38:59.838
When I realized that I went on Google, I was like what are the best way to save memories?

00:38:59.838 --> 00:39:01.952
Cause my grandfather was losing his, but I was young.

00:39:01.952 --> 00:39:03.235
I was like what are the best way to save memories?

00:39:03.235 --> 00:39:12.396
Because my grandfather was losing his, but I was young, but I was aware that he is the king of the family, of having all our Puerto Rican lineage of history and I was so I knew at that point that if once he passes, it's gonna go with him.

00:39:13.097 --> 00:39:21.730
I found this book service right and they were like advertising for all families of all types, all the things you're reading as, and you're like like oh great, perfect.

00:39:21.730 --> 00:39:27.789
And then you kind of look at the checkout flow and you realize like, wait a second, there's no other option besides English.

00:39:27.789 --> 00:39:32.447
Wait a second, it's only email based, so the person has to type the whole time.

00:39:32.447 --> 00:39:40.610
And you're kind of like at that point is when I first understood what is wrong with society.

00:39:40.610 --> 00:39:45.048
Half the time You're saying you're speaking about families and you'd be inclusive for families, right?

00:39:45.048 --> 00:39:55.257
So coming up for holiday in December, I'm really excited to launch Connect's physical memory books where folks can upload their content, upload their stories.

00:39:55.257 --> 00:40:06.757
We, of course, give you the questions and prompts and different themes, and what I'm really excited about is that it'll be in English and Spanish and a rolling out series of other languages, with international shipping.

00:40:07.239 --> 00:40:13.496
Like I am thinking about a family and what that family can mean who is a given or chosen member of the family.

00:40:13.496 --> 00:40:15.331
It's not just going to be on this.

00:40:15.331 --> 00:40:19.586
I'm sorry to the community, but it's not just for, like, white people in the United States.

00:40:19.586 --> 00:40:21.311
Like that is not just that is.

00:40:21.311 --> 00:40:29.130
The United States is a community of a variety of ethnicities, a variety of languages, and it's not just a white person.

00:40:29.130 --> 00:40:39.666
And I'm really, really excited that as I lay this groundwork for this book it's another reflection of my stance on diversity and inclusion is like no two families are the same.

00:40:39.666 --> 00:40:45.371
So the experience in the app, for example, should adjust to the family, to the things we learn about the family.

00:40:45.851 --> 00:41:01.114
And the book itself is going to be fresh because right now, if you look at our I won't even name them look at our competitors, jay, it feels like they're for, like it just feels really old, like you don't, you don't want to buy it and like, go back and read someone's story because it just feels like it's like it doesn't feel right.

00:41:01.114 --> 00:41:17.045
But yeah, we're going to be including like voice to text, so like this, you and I can be talking, you'll be talking into the computer and the computer will hear and then translate your words into text so that way again we can really think about like another activity for someone to do if they need it.

00:41:17.045 --> 00:41:19.228
That's something that's so meaningful for us, right?

00:41:19.228 --> 00:41:29.880
You get that book of your mom, your dad, your grandfather, and it's not just your life, but maybe it's like recipes and holiday trips, like what a freaking special moment for y'all to have that like physical item.

00:41:29.880 --> 00:41:30.684
That's not, you know.

00:41:30.704 --> 00:41:39.010
You can also have the app, yes, but you know, gifts are great if you want to get gifts you want to get the, the.

00:41:39.590 --> 00:42:35.954
My massive takeaway from this, omar, is you are merging technology to allow families a more holistic approach of capturing, of creating, capturing and keeping Whatever it is that has ever meant anything to any generation Exactly, and that's magical, that is freaking magical, I know, while I do own all the little gadgets right, I got the, I got the tablet and the desktop and the cell phone and the blah and the blue and the blah and the blue I hate typing.

00:42:37.746 --> 00:42:42.617
I hate typing and I don't like reading, even even though I'm an engineer and a lawyer.

00:42:42.617 --> 00:42:49.351
I'm an engineer first, which should tell you something, but I'm a lawyer and they're like well, how did you bar in a lot?

00:42:49.351 --> 00:42:51.557
I'm like listen, don't, don't question that.

00:42:51.557 --> 00:42:54.233
Yes, I pass all of that, but that's not my preference.

00:42:54.784 --> 00:42:56.547
So when you're asking me for my preference.

00:42:56.547 --> 00:43:09.496
I it is very clear that my ancestors are West African because I'm an orator, I'd rather listen and talk my way through whatever it is.

00:43:09.496 --> 00:43:12.190
Look, yeah, I don't want to.

00:43:12.190 --> 00:43:12.773
I don't want to.

00:43:12.773 --> 00:43:15.190
I don't want to read nothing and I don't really want to write it.

00:43:15.190 --> 00:43:24.617
Just I'll listen and look for 10 years Versus write something or read something for one hour.

00:43:26.608 --> 00:43:30.117
I got something I didn't mention in that book that I think might make you jaw drop a bit.

00:43:30.117 --> 00:43:47.079
If the person wants to add a QR code to the book on specific pages, they can, and the QR code can allow the person to submit an audio or a video to support whatever image, whatever story is on that page.

00:43:47.079 --> 00:43:55.065
Because what you just said I love I mean being Puerto Rican means you sit down and you listen to stories and you talk back really fast, Right?

00:43:55.065 --> 00:44:11.632
That is something I find is missing from a lot of these spaces and why I built connect the video, audio and text as options is like there's nothing more powerful than hearing or watching someone's facial expressions as they tell a story, Like when my grandma tells a story she's excited about.

00:44:11.632 --> 00:44:15.351
I don't really care what the story is, I love watching people's face change.

00:44:15.351 --> 00:44:32.885
That is the best thing right now with you, Right, Like that's my favorite thing about talking to someone is seeing how their hands move their you, right, like that's.

00:44:32.905 --> 00:44:35.329
My favorite thing about talking to someone is seeing how their hands move.

00:44:35.329 --> 00:44:36.849
Their facial moves right, right, right, 100, 100.

00:44:36.849 --> 00:44:38.913
Omar, this has been truly, truly magnificent.

00:44:38.913 --> 00:44:50.869
I cannot give you enough gratitude and give you your flowers for starting in high school to care enough about giving more than you received and then to say you know what I want to help others.

00:44:50.869 --> 00:44:54.972
This is happening to my family I bet other people are experiencing it.

00:44:54.972 --> 00:45:26.355
And for you to come up with a product and then say I am going to make this product available to the masses, even after your grandfather was no longer physically available, that makes it so apparent that it wasn't about serving yourself, and I firmly believe there are more of us in the world who are looking to serve the globe and not to take first, and I wish you tremendous success.

00:45:26.355 --> 00:45:33.666
I can't wait for all of the secondary and tertiary products to come out of connect.

00:45:33.666 --> 00:45:38.318
Let everyone know where and how to find connect.

00:45:38.318 --> 00:45:39.409
Please spell it.

00:45:40.585 --> 00:45:43.088
Yeah, so the website is fine.

00:45:43.088 --> 00:45:49.418
It's k-i-n-n-e-c-t dot club c-l-u-b.

00:45:49.418 --> 00:45:55.726
You know what I want to make sure that the caregiving community understands that they have ideas or they want to share feedback.

00:45:55.726 --> 00:46:03.659
Email me, omar at k-i-n-n-e-C-T dot club, omar at connect dot club.

00:46:03.659 --> 00:46:05.224
That is my direct line.

00:46:05.224 --> 00:46:14.139
If I can find ways to use technology to serve a family and serve what the community needs, that is like what you just said.

00:46:14.139 --> 00:46:15.952

CREATING, CAPTURING AND KEEPING MEMORIES WITH ALZHEIMER'S

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