Meryl Russo: How Do You Move Through Grief Without Moving On?

Hi everybody! Welcome to another new episode

of the Truth, Lies, and Alzheimer's show. I'm Lisa

Skinner, your host, and I'm feeling really excited today

because I have a very special guest right here with me, and I

can't wait to introduce her to everybody. Her name is Kirsten

Thomas, and she is the co-founder and president of a

company that she created called Kindred Mind. And what she did

is she built from lived experiences, from lived

caregiving experience, an app that is so unique that I

couldn't wait to share it with everybody because I think it's a

really could be a really really helpful tool for some of the

challenges that I know you all live with day in and day out, so

please help me give a very warm welcome to Kirsten. Kirsten,

welcome to the Truth, Lies, and Alzheimer's show. I'm so glad

you're able to join us today.

Well, thanks so much for inviting me, Lisa. I

really appreciate

it. You're very welcome. I'm excited to hear

more details about your app called Kindred Mind, let's start

off with what inspired you. What what drove you to even think

about doing something like this? Let alone actually developing it

and putting it out there for people to have a great tool to

work with.

Yeah, as you said in the in the outset of

this call, this this was born out of caregiving experience.

Certainly not from a boardroom, from a strategy meeting. Just a

little context and background. Rewind the times, so to speak. I

was raised by my mom, an only mum, single child. Our

connection was one that is very unique. Some would say

codependent. There's the enmeshment. I was always kind of

wired to worry about her, but I would say over the the last

decade or so, I started noticing things that would cause a little

bit of red flag, but I would chalk it up often to just aging.

Well, tell us a little bit more about that

because a lot of my audience are always really curious what

people have have actually witnessed that they dismissed

maybe at the time that actually turned out to be something more

serious than just normal aging forgetfulness. So I think they

would love to hear some of the signs that you noticed, but

maybe didn't.

Yeah, it didn't. It didn't look like the

universal, typical kind of like forgetfulness that we all know

of, say Alzheimer's, which is kind of like a catch-all.

Instead, it showed up with increased fatigue, so much so

that it didn't match her daily activities. She would sleep a

lot, so that was one kind of clue. She stopped being able to

hold on to a story. I'd be halfway through telling her

something that was, you know, pretty pretty pertinent to my

well being, but I could tell she sort of lost the thread of it.

It could be a comprehension or an attention concern. I found

too she was started substituting words. She would sometimes make

up words, so that I learned later was paraphasia. It happens

when the brain can't retrieve the exact word underneath.

Although the thought is there, the thought is intact, but they

can't retrieve that word.

And then there's a term. Actually, there's a term

for making up words. It's called confabulation. So it sounds like

she was doing that as well, and that's a very very common thing

that we see with people who actually have one of the brain

diseases, right? Dementia.

Some other clues, and sadly, I noticed

socially things started to shift for her. She was ostracized from

her euchre group because she wasn't following the rules so

much so anymore. More executive, as I mentioned, more executive

than memory loss at the beginning. So she knew what she

wanted to do. For example, you know, set an appointment, or log

into her Facebook, or collect her voice messages. Even I could

tell that she couldn't execute point A to point B. So suddenly

there was no clear path for her. But it wasn't until April 2025

that her doctors carried out the MoCA test. So that cognitive

impairment. Detection test, and she scored quite low. That they

reported her to the Ministry of Transportation, and her her

license was suspended. And then later in October, she had a

series of of strokes, ultimately leading to a significant stroke

that attacked her basal ganglia, which is helps govern voluntary

movement among other neurological functions, but it

ended up causing her to be in a wheelchair. So my mom, who once

drove herself everywhere, who had a social butterfly calendar,

who went to the gym three times a week, who took care of her

cat, she would volunteer. She was very active. Was now

completely dependent in a wheelchair.

Now, how old is she now at this time in 2025?

She was 81.

And how many years had you been noticing some of

the things you described to us?

So the rearview mirror is is telling. You know,

in the moment, as I said, you kind of dismiss it. Maybe it's

denial. You're excusing it for the natural course of aging, but

honestly, when I really think back, I would say at least 10

years.

Interesting. Yeah, and I

don't think that she addressed it with her

primary physician at the time because, well, there's a stigma,

and also she was a very proud, private woman. She was a boss

lady, hustled, and so this would kind of make her feel less of

and age out of. So I think that she kept it quiet, even to me.

She wouldn't admit it. And what? Back to your original question.

What was it specifically that that kind of was the impetus for

building the app Kindred Mind? Is that she stopped texting? So

that was another action or clue, and started calling me more. And

those calls would come more and more frequently, and the

questions would be the same over and over again. So we all know

that one of the symptoms is repetition, but one of the other

symptoms is this, or what they call reassurance calls due to

separation anxiety in people living with dementia. So I

recognize that immediately because I lived this back when I

was a teenager in high school with my grandmother, her mum's

mum. So watching the same pattern repeat itself across two

generations is really what I guess positioned me to problem

solve that much faster because I didn't want to leave my mum

hanging the way I felt my grandmother was because we would

collect voice messages on the answering machine when we'd come

home from our respective days, and there would be calls from

morning till night that she would be leaving because there

were no cell phones back then. This was her only, you know, way

to reach out to to us to the people that she trusted and felt

familiar and and comforted by, and I I knew that I couldn't let

my mom sit in that fear, in that anxiety, and that

disorientation. I didn't want her to think that I had

abandoned her. So all that. What

were what were her living arrangements during this

time?

So prior to the massive stroke, she was living

independently and doing everything independently. But

what

about when the these phone calls these so

so that that actually started leading up to

her stroke. So I started making more accommodations for her.

Certainly because of the loss of license, but also I noticed

there was and at the time I kind of I hate to say this, but I I

saw it as neediness. But now, in hindsight, I realize it was this

separation anxiety. She wanted to feel, I guess, she felt

unstable in her mind and in her spirit, and she was just

reaching out for the only voice, the only person that she ever

really had that connection with with which is me as an only

child,

understandably. Yeah. Okay. So where after she

had the stroke, then did she change the living environment?

Yes. Well, and because of the wheelchair, her

and the the need for full full care, you know, from she went

into what assisted living or she's

not considered a flight risk because she is in a

wheelchair, so she is able to stay in a traditional retirement

home that seems to have organically evolved into a space

that can accommodate high high needs. So, and you're in

Canada, right?

Yeah, yeah. So

just this was a type of facility that is offered

in your country,

right? It's not subsidized, but certainly it is.

I mean, I think that if my mom were considered a flight risk,

meaning she could wander and and just leave the care. Home

entirely, then that would be a different conversation. But I'm

so comfortable where she's at because she still maintains a

lot of her autonomy as much as she could. And I know one of the

like ethical principles in dementia care is to preserve and

maintain the independence as much as safely possible.

Absolutely, yeah.

So she has a room in this community setting that

offered, you know, dining dining experience. They went to a

dining room, their activities, all those things. But these

calls continued incessantly, right?

Yes. So it's I. I'm close. I'm about 1520 minute

drive away, and I do see her almost every day. But it was the

in between, and she calls, as you know, and it was the in

between times. So we call that the bridge, the bridge between

my physical presence and my voice presence. To when I'm when

I'm not able to get those calls, and it was those calls that I

missed that weighed most heavily on me. There was, I guess, one

kind of pivotal moment where I was in my daughter's dance

recital, and I had to make that choice between watching my

daughter on stage or picking up the call from my mom, and I had

to step out of the theater because I, I, I just the guilt

that ensues if I miss the call weighs heavy. But also, I, I was

really concerned that maybe this call was something really

emergent.

Yeah, you just never know. It could be. Yeah,

Kirsten is part of the sandwich generation that we were just

talking about on another episode. So she's dealing with

her aging mom who has been diagnosed with is it

frontotemporal dementia and

vascular dementia

and vascular dementia. I was going to ask you

if she and

mixed, yeah,

yeah. So that is called mixed dementia, which is

actually very common. And she also had a daughter, a dependent

daughter, at the same time. So it's a lot of balls for her to

juggle in the air all at once. So she came up with something

really, really clever. So let's pick up where we left off. Go

ahead and continue with your story, Kirsten.

Thanks, Lisa. I also have two boys. I don't want

to leave them out of the equation. So three kids and two

dogs and a business to to build. So it's busy. A lot. It's

certainly busy, and I did I did feel like that that caregiver

pull, the caregiver burnout that does ensue. But back to kind of

describing what Kindred Mind is, knowing that it was kind of the

impetus was the repetitive reassurance phone calls was the

the reason for building this or developing this. The product

itself is an AI voice companion that answers phone calls from

someone living with dementia using familiar voice technology,

those are my dogs in the background. I don't know if you

can hear them. So it's a clone of the the caregiver's voice,

and in this case, my own. Plus, actually, what we've just built

in is a proactive check-in call, so we can call or send SMS for

reminders, which is great, or even a companion, but back to

the pillars that Kindred Mine is built on. It's built on the

simulated presence therapies, that being my voice, and the

validation therapy, and established dementia care

concepts that favor emotional comfort over little literal

correction. And I've heard you, Lisa, talking a lot about you

know confabulation or or compassionate deception, all of

those things, and it's wildly widely discussed. But we can

jump into the validation therapy if if you want. It's a great

discussion to have. Developed by Naomi Fale back in the 60s

through to the 80s. She worked in a nursing home, and I've done

a little research, and I found this enlightening. And she

noticed that the caregivers used to use the like correct them,

orient them approach. Yeah, the

reality orientation therapy. Yeah, so

like if

someone, and they always use this example, if

someone's asking after their spouse who's no longer here.

Back in the day, they would correct and say, "Oh, he he

passed away in you know 2019 or what have you. But what she

found-don't you remember? Yeah, you must have dementia. But she

found that wasn't helping anyone. It wasn't kind either.

Even though we were, even though you were giving the facts, it

wasn't kind, so it wasn't helping. So yeah, people were

just getting upset. The agitation throughout the care

community would start spreading like wildfire. It was almost it

was almost like contagious. So instead, what she thought to do

was stop trying to fix the facts and start paying attention. The

feeling underneath them. So, my mom has asked after her mom, and

so when she's, you know, and my grandmother's been gone like 30

some odd years, she's. I'm looking at the underlying root

emotion and not the factual question. Instead, I'm seeing

her asking like she wants to feel safe. She wants to feel

cozy. All the things that you feel when you're wanting to be

with your mom. So I don't correct her. Kindred mind

doesn't correct her because kindred mind is built on those

pillars of of validation. So you know, again, to to your point,

you're not saying you're confused, I just told you this

five minutes ago, so that's kind of the whole validation example

in play there. But there's, yeah, there's and there's

research behind it. You know, studies.

Oh yes, oh yes.

That validation approaches, like I said, can can

reduce anxiety and actually even increase communication, like

positive communication, and that like combats the whole

loneliness epidemic and all of these things. And certainly,

too, it has a flip side where it it can it's reported to show

less caregiver burnout, and caregiver burnout is is not a

joke.

Oh, it's a real thing. There's no question about

that. Before we run out of time, can you give us maybe a

walkthrough of how exactly this works? Yeah, performs so we have

you know maybe a little bit better understanding of what it

can do to accomplish all these things you just you know hit the

nail on the head about it's all you know just very very true and

very accurate.

Yeah. Well, thank you. We tried to weave in

all of the kind of guidelines to dementia friendly conversation.

and and and lean on because we're in Canada the Alzheimer's

Society of Canada's guidelines. So all of that is kind of built

in. the The app itself is on a short leash. It doesn't invent

things. But how you onboard is that you start with an eight

minute conversation with a virtual assistant. We call her

Sarah, and it's just through this two-way conversation, like

a Q and A. There's no script, and that's enough to build the

initial voice. So when my mom calls, even with the initial

voice, it's almost undistinguishable. She hears the

like nuances, the intonation, some of the words that I might

say, but during that Q and A, it builds in the background and

knowledge base, so that when those calls do come in from

someone living with dementia, the conversation is relevant.

It's based on real, real life. You know, the rhythms of her

day, the rhythms of the caregiver's day, the people that

are important to to both of them, and it is entirely based

on that whole the whole conversation. So it's not it's

not recorded. It's it's always two way. And when I was looking

at I paused there because I wanted to mention and I know

we're running out of time. I I was looking at the alternatives

and the alternatives being call blocking, call silencing, you

know, sending your calls to voicemail. I've heard some

people remove the lifeline altogether. They remove the

phone. Some people go so far as medicating the symptoms, which

is the anxiety underneath those repetitive reassurance calls.

All of those alternatives didn't sit well with me, so I needed a

way to answer those calls that I simply couldn't get to in my

voice, so that that familiar voice and trusted voice is one

that my mom can sit with. So now she has that, and all of and I

can update on the fly. So if you know I visit her almost daily.

If I'm running late, I can update on my mobile app to say

if she does in the event call while I'm driving, I can say I'm

running 30 minutes behind schedule. So it'll it's almost

like my own assistant, but in my voice. One other thing I wanted

to to say is for those people who may not be comfortable

having their voice cloned, we do offer a warm assistant voice in

in female and male, and again all based on that whole set of

knowledge that you share. And we don't allow for medical records,

we don't allow for financial information or last names. So

it's actually very surface level information. Whatever it is, you

you decide to share with Kindred Mind.

So how has it? I guess your mom was cut for the

app with kind of your beta tester. How so? How has she

responded to using Kindred Mind?

Yeah, no, that's a great question, and I answer

it this way. Before Kindred Mind, I was if I missed a call,

several calls, those calls would come. With more urgency and

frequency, and by the time I answered the call, she and I say

this all the time, she literally sounded like she ran a marathon,

like she was exasperated. And now, when Kindred Mind answers

those calls, although she forgets because that's part of

dementia, she'll forget. She just called. She'll call again,

but they call they come with less frequency, and and the the

urgency beneath the messaging is a lot is has decreased as well.

And what's great is I get a summary of all those calls that

I wasn't able to answer myself. So I know her affect. I know if

she was you know disoriented or calm or all of those. It's like

a Cole's notes version of her feeling, the sentiment and the

messaging. So, if there's any action item, like if she said,

"I need a new toothbrush, for example, then I I can act on

that. So you built

in all these metrics into this app. We

absolutely well, yeah, it

very data driven. And then I I like to

also say the distress, universal distress keywords are in there,

so instead of validating someone when they say they've fallen,

you want to actually break through and let the caregiver

know in real time. So we've built that in as well. Wow, this

is just fascinating and brilliant. It's actually

brilliant. I'm so excited to now. Can can people go onto your

website and you have like a a demo available for them to

listen to? Yeah, we have a 14 day free trial, and what that

allows to do is you can actually go through the onboarding

process and and get your instant voice clone and done in eight

minutes, and then you can even test calling that number to see

how it fields conversation based on the knowledge base and any

curveballs you may throw at it.

That's amazing. So, what? How do they? How do

they find you? How does yeah?

Kindred mind care. Kindred mind dot care.

Okay. Well, this is just really. I'm even more

excited than I was before we had our conversation because of all

the things you explained to us that it's capable of doing. I

just see this being a tremendously helpful and

valuable tool because I have seen this behavior from so many

people living with dementia, and yeah, it was just really a

brilliant idea. So I'm glad that you came up with this, and it's

such a a wonderful tool. So thank you again for being here

and for sharing this this exciting information with us.

And I hope a lot of people will look into it because I can see

this really being helpful to family members and caregivers

that do experience these repetitive calls and the

insecurity and and the fear that they often and very commonly

experience living with dementia. This is such a needed needed

resource, so thanks again. Anything else that you'd like to

say before we sign off?

I don't think so. I think we covered it. I

think the the you know if you were to distill it down, it it

works for both the caregiver offering a bit of reprieve in

their day, but more importantly, and the reason why I built this

was to make sure that my loved one, the one living with

dementia, doesn't sit in fear.

That's a good place to leave. So, as far as

how it works on the actual phone, is it just like Seinfeld,

and it's number one on the speed dial? Yeah,

you can program the special, unique kindred

number into your phone, and you receive that number once you

onboard. And then the in this case, my mother has a

pre-programmed button with my name on it. She presses it, and

she always gets me, even when I can't answer the phone. She

still gets me. Yeah.

Okay. All right. Well, we are out of time for

today's episode. This has really been exciting. I just cannot

express how impressed I am with all the information I've learned

about Kindred Mine today. So I hope you know if this applies to

your world, look into it because it might help save your sanity.

All right. Thanks again, Kirsten, for being here, and

good luck with your app.

Thank you. Thanks so much for having me,

Lisa. I really appreciate it.

So come back next week. As always, I will have

another new episode prepared for you, and in the. Anytime, have a

great rest of your week. And as I always urge you to do, is to

stay as healthy as you possibly can and happy. And I will see

you all next week. Bye bye for now.