August 26, 2025 • 57 mins
Betsy Wurzel, host of Chatting with Betsy, welcomes Allyson Schrier, Co-Founder of Zinnia TV, for a moving discussion on Zinnia TV dementia support. Allyson shares how her husband’s dementia journey inspired the creation of a platform designed to help caregivers and loved ones connect.Allyson’s story is one of resilience, purpose, and vision. After caring for her husband Evan, who had Behavioral FrontoTemporal Lobe Dementia, she transformed her experience into a career dedicated to supporting both individuals with dementia and the caregivers who care for them.She went on to become a sought-after dementia educator, training both family and professional caregivers in best practices for compassionate care. Allyson also helped launch an educational initiative at the University of Washington to improve how healthcare professionals diagnose and support people living with dementia.Her work has earned national recognition. In 2020, she received a Maude’s Award for Innovation in Alzheimer’s Care and was named Visionary Caregiver of the Year by Caregiving.com. She also serves on the Washington State Dementia Action Collaborative, where she facilitates spousal support groups and lectures on caregiving topics.
These achievements highlight the impact of Zinnia TV dementia support on the broader caregiving community.During the interview, Allyson reflects on the challenges of obtaining an accurate diagnosis for her husband and how this impacted their young family.
he emphasizes the importance of open communication with children in caregiving households.Inspired by her experience, Allyson co-founded Zinnia TV, a research-based streaming platform offering calming video experiences tailored for people living with dementia. The content is intentionally paced more slowly to accommodate cognitive changes while easing caregiver stress.
Families who turn to Zinnia TV dementia support often report reduced stress and improved connections.In fact, Allyson notes an 80% reduction in stress among users living with dementia. Families can explore Zinnia TV with a free two-week trial, which includes a wide variety of topics designed to soothe, entertain, and strengthen connections.
💟 Allyson Schrier mentioned how Lorenzo's House is a wonderful resource for children and young adults dealing with parents or any relative dealing with dementia.
👉 https://lorenzoshouse.org/
❤ This special episode is dedicated to the memory of her husband, Evan Schrier, whose journey continues to inspire a movement toward compassionate and innovative caregiving solutions.
Become a supporter of this podcast: https://www.spreaker.com/podcast/chatting-with-betsy--4211847/support.
These achievements highlight the impact of Zinnia TV dementia support on the broader caregiving community.During the interview, Allyson reflects on the challenges of obtaining an accurate diagnosis for her husband and how this impacted their young family.
he emphasizes the importance of open communication with children in caregiving households.Inspired by her experience, Allyson co-founded Zinnia TV, a research-based streaming platform offering calming video experiences tailored for people living with dementia. The content is intentionally paced more slowly to accommodate cognitive changes while easing caregiver stress.
Families who turn to Zinnia TV dementia support often report reduced stress and improved connections.In fact, Allyson notes an 80% reduction in stress among users living with dementia. Families can explore Zinnia TV with a free two-week trial, which includes a wide variety of topics designed to soothe, entertain, and strengthen connections.
💟 Allyson Schrier mentioned how Lorenzo's House is a wonderful resource for children and young adults dealing with parents or any relative dealing with dementia.
👉 https://lorenzoshouse.org/
❤ This special episode is dedicated to the memory of her husband, Evan Schrier, whose journey continues to inspire a movement toward compassionate and innovative caregiving solutions.
Become a supporter of this podcast: https://www.spreaker.com/podcast/chatting-with-betsy--4211847/support.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:01):
Hello, everyone, this is Betsy Worzel. You're a host of
Chatting with Betsy. I'm Pasture will Talk Radio Network, a
subsidiary of Global Media Network LLC our mantras to educate
and lighten and entertain. The views of the guest may
not represent those that a host the station. And I
(00:21):
want to thank you for joining me today, taking me
with you wherever you are to listen. You're gonna want
to listen to my guests today. My heart is to
always interview caregivers. That's how I started the show as
interviewing caregivers, and I expanded into different genres and areas,
(00:45):
but my heart will always be for the caregivers. Why
Because I was one, I know what it's like. And
my guest today was a caregiver also, and I had
to say the folks, in my opinion, the caregivers who
did a caregiving saw that they had at need and
(01:08):
there wasn't anything available, became very creative and created what
they did.
Speaker 2 (01:15):
Need when they were a caregiver.
Speaker 1 (01:17):
They're doing it for other caregivers because once you're a caregiver,
I feel like your heart is just for caregivers and
that will never stop. It hasn't for me, but with
me today is Alison Schreier. And I'm going to spell
Allison's name A L L Y s O N Schreyer
(01:41):
sc h R I E R. Allison's husband Evan, She
was a caregiver for him and he had frontal temporal
lobe dementia. And Alison this co founder and president of
Zena TV, and she turned her experiencet caregiving into a
(02:03):
career focused on helping both people with dementia and those
who care for them. Alison became a dementia educator, teaching
both family and professional caregivers about best practices around supporting
people with dementia. Alison helped launch then manage an education
program at the University of Washington to equip primary and
(02:28):
allied healthcare providers to better diagnose and support patients living
with dementia. Allison was honored to be a recipient of
a twenty twenty Maud's Award for Innovation in Alzheimer's care
and was named Divisionarycaregiver twenty twenty by caregiving dot Com.
(02:51):
Allison sits on the Health and Medical Subcommittee of the
Washington State Dementia Action Coaborative, and she facilitates support groups
for spouses of people with dementia and lectures on topics
about dementia caregivers.
Speaker 2 (03:09):
Allison is a wonderful.
Speaker 1 (03:11):
Resource and I want to welcome you, Alison Schreyer. The
Chatting with Betsy and before I forget this podcast is dedicated.
Speaker 2 (03:21):
In memory of Evan Schreyer, who is Alison's husband. I
get joked.
Speaker 1 (03:26):
I'm just even saying that because it was my husband's
birthday yesterday. So I want to thank you Allison for
coming on.
Speaker 3 (03:37):
My God, it's my pleasure. Yeah, And I get choked
up me hearing Evan's name and just the idea that
you can be honored and remembered is crucially important to me.
So thank you for that.
Speaker 2 (03:52):
And you're welcome.
Speaker 3 (03:54):
Say here for a moment. I am because we're on
the phone, I'm able to be outside and I am
in my garden right now where I wish I Betsy.
I will send you a picture afterwards because you mentioned
Zinnia TV and it's Xinia like this flower because I
am a mad gardener and zinias are one of my
(04:16):
favorite flowers. Because of the fact that I'm unable to
kill them, they keep going even no matter how bad
circumstances are, which is why uh we called it Zinnia TV.
Speaker 1 (04:32):
I think they're a beautiful flower, so that is a
great choice. And I understand you becoming emotional, getting choked
up when you hear Evan's name and what you did
in honor of Evan's memory and to honor his wife.
Speaker 2 (04:55):
I get choked up myself with.
Speaker 3 (04:57):
The thanks, you know, with people.
Speaker 1 (05:01):
Telling me that my videos with Matt helped them, and
you know how Matt touched your wife.
Speaker 2 (05:10):
And you know, Allison, this just goes to show.
Speaker 1 (05:15):
We never know the ripples we create, right, either for
negative or positive. Because when my videoed Matt, I had
no clue. I just was video with him. I went
in my car to do videos about caregiving, never thinking
where it would lead to, you know, I just wanted
(05:35):
an interview.
Speaker 2 (05:38):
Yeah with that. Yeah.
Speaker 3 (05:42):
With my kids small, we used to read a book
called Because a Little Bug Went kurtew and it's all
about this, you know, the butterfly effect, right, the idea
that you just don't know the way that the things
that you do are going to impact others for good
or ill. But sometimes a small, small but genuine actions
(06:07):
can have a profound effect.
Speaker 1 (06:10):
Oh absolutely, And I'd like to know about your experience
first before you.
Speaker 2 (06:18):
Created is in the TV.
Speaker 1 (06:22):
What how old your husband, Evan was when he was diagnosed.
Speaker 2 (06:27):
I know your children were young at the time, and.
Speaker 1 (06:30):
I'll tell you the folks, Oh my goodness that my heart,
Alison goes out to you because your kids were young.
I mean, my son was fifty Well he was fifteen
when we moved in with my mother in law, but
he was twenty five or twenty six when his dad
was diagnosed.
Speaker 2 (06:48):
That's tough enough, but go ahead it yeah, well your does.
Speaker 1 (06:53):
Sure.
Speaker 3 (06:54):
So Evan was forty seven and the kids were twelve
and fifteen when he was diagnosed. But of course with
he had behavioral variant frontal fronto temporal dementia, and that
means that the first thing that we noticed were behavior changes,
personality changes that he just started not being himself. He
(07:17):
became very I have to say out of the gate
that he was one of the kindest, most generous people
I've ever known in my life, and suddenly he started
being a different guy. And he was very difficult for
the kids to be around for the years leading up
to his diagnosis because he would get uncommonly upset about
(07:42):
like if they touched one of his beds or something
and really been out of shape. If they were playing
a video together and the kids won. Rather than being like, wow, yeah,
you you did it, which is what he healthy him,
would have done. Instead, he would get angry and you know,
saying and doing things that were uncharacteristic. This is all
before the diagnosis, and Betsy, he had been diagnosed incorrectly
(08:08):
as having adult onset add and I didn't know any better.
You know, that's what a doctor said.
Speaker 2 (08:17):
So, oh my goodness, Alison, So was Matt. Matt was misdiagnosed.
Speaker 1 (08:25):
Yeah, yeah, I am not put on medications, yes, and depressions, why, yeah.
Speaker 3 (08:32):
Yes, yep. That is why I did the work I
did at the University of Washington educating doctors to be
better equipped to detect and diagnose dementia, because I just thought,
I saw how devastating it was for us to get
a diagnosis actually quite late in the disease, and I
(08:55):
don't want people to have to go through that. It's
a it's a horrible thing because you wind up operating
on that assumption, right, that he has adult on set
ADHD Well, I mean I know plenty of people with
ADHD and they get on with their lives. They take medication,
they make lists, right, they get they get it together.
But Evan couldn't do any of those things. He was
(09:17):
taking medication. But it got to the point where I
would write little sticky notes and put them in order,
like do this, then do this, then do this, and
I'd come home and I'd be like, digita whatever, and
he would say, no, I didn't feel like it. I'd
be what is going on? So yeah, yeah, yeah, there
was an interesting If there's a doctor by the name
(09:38):
of Reza Gomi r e z A g h O
M I he is, anybody who is a dementia family
Gegerer should follow him on LinkedIn. His tidbits are absolutely amazing.
But he today was talking about FTD and about the
difference between the behavioral variant which my husband had and
(10:01):
the aphasia variant, which is what Bruce Willis has. It's
a very very different disease, even though it's impacting similar
parts of the brain.
Speaker 1 (10:11):
But anyway, I don't wow, oh, I have to have
him back up alic Now, what was Evan's profession?
Speaker 2 (10:18):
What did he do for a living?
Speaker 3 (10:19):
Yeah, sure, Evan was a software engineer, and he was
a rock star. I mean was. He graduated from Brown
University in the late eighties, he got a job as
a software engineer at Microsoft, and he was just crushing it.
But he was even back then, there was something that
wasn't quite right, and that is that when I first
(10:42):
met him, he had only recently bought a Ford Explorer,
and the reason he bought it was because it was
the only car that was long enough for him to
take naps in the middle of the day in the
Microsoft parking lot, because every day he would get.
Speaker 2 (10:59):
So tired and whoa.
Speaker 3 (11:02):
You know the things that in retrospect it were like, oh, okay,
I guess you're just sort of a low energy person.
Like no, no, no, it is not normal for a healthy,
at that point twenty seven year old man to need
to take naps any day, every day. And one of
the things that we learned in the exploration when we
tried to figure out what once we once we admitted
(11:26):
right or once we got a doctor to agree with
us that we weren't looking at ADHD, and we started
going down the path to figure out what physiological cause
could be behind what was happening. One of the things
that we did is got a sleep study, and the
sleep study showed that he had horrible sleep apnea. And
(11:48):
people asked me, they were like, well, didn't you know,
didn't his snoring, Bobby, He didn't snore, And I always
thought that that was characteristic, Like the hallmark of sleep
apnea is that somebody snores, but it's not necessarily and
so I think that part of the issue. One of
the things that was so hard for his brain is
that for probably his whole life, he was not getting
(12:10):
good sleep. And I think that also had anything else.
Speaker 2 (12:16):
Yeah, Matt also has to sleep apnea. That'sye. Yeah, they
had that too.
Speaker 1 (12:27):
And you know they say that if you have gum disease,
you're more prone. He had gun disease a white year.
I'm curious, Alic that white year. Did you get a diagnosis?
I want to know if it was around the same
twenty Well, Matt was twenty ten, so they didn't have
(12:52):
the information, you know, back then, because I mean, in
interviewing people over almost six years, especially in the beginning
of my show, there are so many people that have said, Alison,
my spouseless, misdiagnosed yep. And how caregivers have had to
(13:15):
at that time fight for a diagnosis and proper treatment.
Speaker 3 (13:21):
Oh my god. I can't tell you how many doctors
we saw, and I will also share that in two
thousand and nine, to remember, he was diagnosed in twenty twelve.
In two thousand and nine, he was seen by a
neuropsychologist who did a full work up on him for
(13:43):
full neuropsych evaluation, and he was seen by a neurologist
who did an MRI. The neuropsychologist found that there were
surprising disparities in what he was able and unable to do,
but she wrote those off as well, you know you've
got ADHD and you've probably had it. Well, this is
(14:05):
indicates to me is that you've had it your whole life,
and because you're getting older, your brain just can't cover
up for you the way that it used to. And
again we're like, well, this is a neuropsychologist who knows
what she's talking about. And then the neurologist looked at
the MRI and I remember when Evan came out of
the office when he came home from his appointment, and
(14:29):
he was devastated, and he said the guy slapped me
on the shoulder and said, well, all I can say
is it stinks to be you because your brain is fine.
But when we took that MRI with us once he'd
been dying right because of a PET scan. And then
we took that MRI with us to specialists at the
(14:51):
University of California in San Francisco, which has a fantastic
team of FTD specialists, and we for as long as
Evan was still able to fly in an airplane, we
went there every six months to participate in research. And
they looked at that MRI and they just shook their heads.
They said, man, it is so clear that he had dementia.
(15:13):
So you know, it's the comedy of errors, except there's
nothing funny about it.
Speaker 1 (15:19):
I'm like, oh, Alison, I wish I could hug you.
So I'm hugging you through the airwaves because Matt I
feel it Mad went to a nervous psychologist.
Speaker 2 (15:30):
Also did a full worker.
Speaker 1 (15:34):
And I didn't know at that time what exactly was
going at work. I knew a little. I knew that
that was having trouble. That's why his coworker told me
to take her to a doctor. She had the audacity
to tell me to tell us that that was non
compliant and that he has a deep psychological.
Speaker 2 (15:56):
Problem and he couldn't possibly be that bad.
Speaker 3 (16:00):
Well, she was liked.
Speaker 1 (16:03):
And meanwhile, his MRI, he had AMRII done and it
showed global attreacy in his brain with his white spots.
So and even his EEG has said something like typical
of dementia. I mean, it blew my mind. And then
(16:28):
you know when you're told, oh, it's depression.
Speaker 2 (16:33):
You know ma's too young.
Speaker 1 (16:35):
Well, Matt's mom and her family all had uh. Well,
Matt's mom had Alzheimer's, and so did his grandmother and
his aunts and uncles. It wasn't if it wasn't in
the family, Allison, I would have believed these doctors. I
would have believed them if it's if this wasn't in
(16:59):
Matt's family. And I said, doctor neurologist. One time it
was in May twenty ten, I said, listen, Matt asked
me what time it was and asked me what time
Sunday school was that he thought for over twenty years,
that's not depression. You could be depressed. You know what
time it is, you know how to get to your job,
you know.
Speaker 2 (17:18):
How to do your job. You mean, I feel like
doing your job, but you know how to do it,
you know, And Sunday school is so I said, cool,
what it is? I mean it was.
Speaker 1 (17:29):
It's so frustrating folks to experience that. And if anyone's
listening to that's a new experience that, please send an email.
I want to hear your stories. I really do. What
did you experience? And I hope things are better now?
What's only hope? Okay, that things are better now, But
(17:54):
I don't know. My older brother he was having memory
problems before he died, and the neurologist I wanted to
throttle him, and he told my mother, well, there's nothing
we could do anyway. So yep, I mean, it's just
(18:17):
And that was four years ago, Alison. That was the
attitude of a doctor for four years ago.
Speaker 2 (18:23):
So I hope things are better now with the attitude,
you know.
Speaker 3 (18:28):
I think that things are getting better. I think there's
way more education both of individual humans, right of people
who are caregivers and people living with dementia. Uh and
certainly amongst doctors. I really, I really believe that there's improvement.
And yeah, I think that I lost my train of
(18:52):
thought never mind.
Speaker 2 (18:54):
That's okay. And your children.
Speaker 1 (18:58):
I always say children are the hidden casualties of the
caregiving because you know, as adults we have difficulty dealing
with it, and sometimes not that we forget, but you know,
we forget their their children or their adolescents and what
they need to cope with what's going on, and that's,
(19:22):
you know, very difficult. I encourage my son Josh to
go out, you know, I have a good time to
express how he felt. And I did not judge him,
you know when he said, oh, I don't like changing
daddy's diaper, I'm sad, and I'm like, yeah, I agree
with you, Josh.
Speaker 2 (19:40):
One hundred percent.
Speaker 1 (19:43):
Did you experience that, Allison, with you know, your children
having difficulties?
Speaker 3 (19:49):
Oh my god. Yes. So first of all, let me
just put out a plug for Lorenzo's House if there's
anybody listening who has children involved. Benzo's House came out
too late for me. But it's another program that was
started by a former family caregiver, and in this case,
(20:10):
Diane had young children like mine, and where she decided
to put her energy was to create resources for families
like hers, families like mine, and so they have a
really robust program to support children and younger caregivers, and wow,
(20:32):
there was no kind of supports available, so my kids,
it impacted things in a number of ways. The kids
were devastated by what was going on, And you have
to remember that for several years they lived in the
(20:52):
fear of, like, our mommy and Daddy going to divorce
because we were not getting along, because operating on the
assumption that the incorrect diagnosis of add I was just
really wrung out right, I'm like, for crying out loud,
it's add People live their lives with add Why are
(21:15):
you not following the little notes that I'm leaving, Why
are you not being proactive in any way? Why are
you so obstinate and so narcissistic? And so a blessing
of getting a diagnosis is that it completely changed that dynamic. Yes,
that I was able to be like, okay, instead of
being really angry all the time. I'm just sad, and
(21:38):
I will take sad over angry any day of the week.
So for the kids here, they are like worried about
mom and dad's relationship, wondering why Dad is acting so strange,
and then they get the news that he has this
disease that is going to cause him to have a
much shorter life than he otherwise would have. And so
(21:59):
a few other things. Factors that made it really hard
were that when Evan got he had a job and
he lost that job. It was the second job that
he's lost, and he and he couldn't complete graduate school.
(22:20):
And I thought, you know what, I don't know what's
going on, but I need to do two things pronto. One,
I need to start seeing a therapist because I have
to figure out how do you I did not want
to get a divorce. How do you live with a
person who is who is this person right? And who
is nothing like the person you married? And then the
(22:40):
other thing that I had to do was I had
to get a job. I was like, okay, I got
to go to work, like I got to figure something
out here because I don't think that Evan is ever
going to work again. And similar to your experience with Matt,
co workers would call me and they'd be like, what
is going on here? So I decided that we that
(23:02):
if I needed to get a job, we lived on
ten acres at the end of a dead end road
kind of in the middle of like in the middle
of nowhere, and so I thought, Okay, a few things
have to happen. One, if we aren't going to be
having a salary like the salary that Evan was earning
ever again, then we can't afford to keep our kids
(23:24):
in private school. The reason they were in private school
is because, as previously mentioned, we lived in the middle
of nowhere in a terrible school district. So the kids
went to private school. And I thought, okay, well, if
they're not going to be able to go to private
school because I have no idea what our financial future
is going to be like, then I need to get
(23:45):
them into a public school district that would that is
worth going to right And I also we need to
live closer to a highway so that I can have
ready access to finding to wherever my job might be.
And to me, what that looked like was we had
(24:06):
to move, like we couldn't stay in this house, and
I figured that we would start off living in an
apartment to kind of figure out how that works. A
factor that played into all of this is that we
had a dog who was astray that we took in.
My husband was in love with her, and she was
(24:26):
a pit bull. The apartment that I found wouldn't take
a pit bull, nor would any of the apartments that
I looked at. So I said to Evan, you know,
we're going to need to get rid of the dog
because we need to move to an apartment and they
won't take a dog. And he said, I'm not going.
I said, okay, well, then I am moving with the
kids to an apartment. It was six miles from our house.
(24:49):
Every day he came and ate dinner with us, and
on the weekends we would all go stay at the house.
So that's how we lived while And meanwhile I had
started looking looking for work, and I started seeing a therapist,
and eventually it was that therapist who listened to me.
We had a whiteboard moment where I laid out all
(25:10):
of the things that were happening. I mean, we were
seeing a counselor for partners where one of them has
ADD and I would bring up the outrageous things that
were happening, and he would always say, well, you know,
we can't judge people with add Yeah. And I said
to my therapists like, he's okay, this happened, this happened,
this happened, this happened, and this happened. Tell me, please,
(25:32):
this is not ADD and she just was like her
jaw dropped and she said, oh my god, this is
not ADD And so she is the one who turned
me on to a doctor who actually led us to
a diagnosis. But we were talking about the kids, and
it was devastating for them on so many levels. They
(25:53):
didn't go to school for a while, even though they
started their new school in our new apartment in September.
The diagnosis came in March and they just stopped going
to school. Eventually they went again, probably about three weeks later.
My older son did pretty well. He was going into
(26:16):
it was his first year of high school and he thrived,
so he was fine. He went on to college and
there we go. My younger son pretty much fell apart,
and he got an eating disorder because that you know,
when you're twelve years old and your life is completely
(26:37):
out of control. He wound up finding a way to
control things, which was that he developed an eating disorder
in high school. He made it through the he did
two years of middle school in the new school, and
then he moved on to the high school and just
started smoking a ton of pot and I and like
(27:00):
dealing with my husband with dementia. I've got a son
who is going has this feating disorder. We're seeing a
specialist for that and anyway, so he happy to report
all these years later that everybody is okay, we made
it through. But I will tell you that there were times,
especially with my younger guy, where I just thought that
(27:22):
the world is a very unfair place that not only
do we have a family member who has this devastating
brain disease, but also a child who's so impacted by
it that they're impacting their own brain. So yeah, yeah, stuff.
Speaker 2 (27:39):
I feel for you, Alice.
Speaker 1 (27:42):
And my son Josh has a come to disability. But
yet he understood Olzheimer's better than so cool intelligent people,
and he would just you know, out of the mouth
of babes. He would tell people that would say, oh,
(28:02):
I would close your dad up. He doesn't know who
I am, and Josh would say, well, it's not rocket science.
You cool up, you say who you are, and say
how you doing that?
Speaker 3 (28:11):
Exactly?
Speaker 1 (28:12):
Yes, I mean he was and he was great. He
was so patient, more patient than me at times with
his with his dad. He was really a wonderful with him.
But you know, there was the concerns. You know, one
(28:35):
dad goes into a home, and I was, you know,
people who have come to disabilities, and Joshua's disabilities. He
has trouble difficulty processing, like I don't know how much
he understands, but with his grandmother he knew.
Speaker 2 (28:52):
And you know, my mother in law.
Speaker 1 (28:54):
Was a very quiet woman and then she turned into
this raging maniac with the Olzheimer's. And I said, josh
it's like someone took a pencil to Grandma's brain and
erased all her memories.
Speaker 2 (29:07):
And he understood that.
Speaker 1 (29:10):
Yeah, you know, but it was funny because he said
to me, he said, what happens if you meet someone
after daddy dies and they don't want.
Speaker 2 (29:21):
Me and they don't like me?
Speaker 1 (29:24):
God, That's what he was concerned about, Alison.
Speaker 2 (29:29):
And you know I did not strike it off.
Speaker 1 (29:32):
I said, josh let me tell you, first of all,
I'm not ever getting married again.
Speaker 2 (29:37):
Once was enough for me. Thank you.
Speaker 1 (29:43):
I said, we're a package steal. Okay, this is your house.
This is your house. You live here. Nobody will ever
as long as I'm alive and breathing and consumption, nobody
will ever kick you out of your own home. They
had to go through me first. I said, we're a
package still. So if people you know.
Speaker 2 (30:06):
If I said, I don't have to worry about it
because I won't be dating.
Speaker 1 (30:09):
But if I did date, if I did find someone,
they would have to like you. That's a that's a requirement.
And if they didn't, then they could go bye bye.
Yeah you know, you know, but these are the things
that they think about.
Speaker 3 (30:31):
Yeah, I did Matt live in long term care? Or
was he at home the whole time?
Speaker 1 (30:38):
He was home the whole time until he went up
to the hospice unit.
Speaker 2 (30:44):
Where he died. You know, we were able to do it.
He was able to live at home.
Speaker 1 (30:51):
And I tell everyone, you know, everyone's circumstances is different.
If he would have lived atis then he would have
had to go and to a long term care, no question,
if you would have lived long term because he was
getting to where it was not manageable. And you know,
(31:12):
I believe in being honest. What they were children, you know,
don't I don't give the kids fullse hope. When I
knew when Matt went up to the hospital unit, I
knew he wasn't coming home. I knew he wouldn't there
to die and I told that to Josh. I was
very honest. I said, that is not coming home. He's
going to go to his heavenly home. He's not coming
(31:33):
to this home. So you know, to try to as
much as you can prepare yourself and your child or children.
Like it's like, how do you prepare your children for
their father dying? Now? I don't mean to be morbid, folks,
(31:54):
but this is a freaking fact of life. When you
are face of the terminal illness, this is real and
it's really it's difficult. And then when well Matt died
in twenty twenty, so then two months later COVID happened.
Speaker 2 (32:15):
Everything closed.
Speaker 1 (32:17):
So just didn't have a job, he couldn't socialize, just
when he needed it the most, it was taken away
in repetition.
Speaker 2 (32:27):
And schedule is.
Speaker 1 (32:28):
Very comforting to those who have a neurodivergent.
Speaker 2 (32:35):
Difficulties.
Speaker 3 (32:37):
Yeah, they liked their schedules.
Speaker 2 (32:39):
It's a comfort to them.
Speaker 1 (32:41):
And it was rough, but we made it through, you know,
we did. I let yeah, you know, Josh talk about it.
Speaker 2 (32:48):
And that's the thing. I don't want to digress.
Speaker 1 (32:52):
I just want to say this for those of us
who have boys, sons, you have to let them come
to you and discuss it. Don't tell them to be strong,
it's the worst thing you could tell them, or just
or to suck it up because you're gonna have a
kid that's gonna have a nervous break down.
Speaker 2 (33:13):
I'm telling you you need.
Speaker 1 (33:15):
To let them vent. And that's what I did. I
let people vent. And when someone said to Josh, I'll
be strong for your mom, I said, don't you ever
say that to him again. Don't ever let me hear
you say that he doesn't have to be strong. Yeah, exactly,
you know, Mama bear comes out.
Speaker 3 (33:36):
Yeah, so we'll go forward.
Speaker 1 (33:43):
How did you create and faum co founded vimea TV?
That is, Yeah, want to hear about that and what
it would the benefits because I think Matt would have
definitely been the fit in from that.
Speaker 3 (34:02):
Yeah, so I'm going to give you like three little
data points that sort of have to do with it.
There is probably the best way for me to answer
this question. So when Evan had moved into long term care,
(34:23):
he was also nonverbal, and he eventually was nonverbal, and
I found it so difficult to have anything to talk
about that wasn't transactional. And what I mean is that
I would show up and I'd be like, wellow, let's
say I want to a grocery store today. You should
see the price of water melons.
Speaker 2 (34:43):
You know.
Speaker 3 (34:43):
It was just like bled led lah lah lah, stuff
that was completely uninteresting. But that's what I would talk
about because that's like what was fresh for me. I started,
and I didn't like it, but right, but I thought,
I need to think of things to talk about. And
I realized, Oh, if I bring images with me, like
pictures or magazines, we can flip through and we can
(35:07):
look at the pictures and then we can tell stories.
I can tell stories about those pictures. Or if he
was a healthy person, right, like if he's still not healthy,
but if he was still verbal, I could have said,
tell me this story about what's on what's in this picture.
And so I started making little videos on my phone
(35:28):
were that used Apple's Memories products, which allows you to
stitch together pictures on your phone. They're set to music,
slow paced, and they really worked. So I'll pause there
for a moment and say that. At the same time,
something that I noticed is that when I would show
up all too often my husband with Evan would be
(35:49):
parked in front of a television and literally parked because
he was in a wheelchair, and the volume would be
way up because you know, people are sort of hearing,
and it would be some random TV program and sometimes, Betsy,
he was clearly in distress, like he'd be pounding on
his chest, or he'd be shouting out squear words because
(36:12):
those were the only words he had left, or maybe
he'd be asleep, or maybe he would just kind of
be looking wildly around as if to say, get me
out of here. And he would then be labeled a
problem by the way, because he was disturbing the other
residents by his behaviors. So I did a bunch of
research trying to figure out, like why is the TV
(36:33):
so upsetting and how? And I was also curious about
this idea of like videos that help people. I found
a paper that had been published by doctor Kate de Madeiros,
and the title of the paper was Television Viewing and
People with Dementia living in long Term Care. And doctor
(36:54):
de Madeiros and her students went into long term care
communities and they showed the residence in Emory Care different
television programs. So it might be I love Lucy, It
might be Jerry Springer or Bob Ross the Painting Show.
And what they found is that the TV show that
(37:14):
was most that was least anxiety provoking, I'll say, was
something that was called Venice and it was simply slow
moving images of Venice with set to music. And I thought, well, gosh,
those are like the videos that I'm creating. I'm going
to fast forwards for a second and tell you that.
(37:35):
In May, I was that I presided over a panel
at the Michigan Assisted Living Association. The panel title, the
title of their presentation was Low Tech and No Tech
Solutions for People Living with Dementia. All of the panelists, Betsy,
had dementia. Now, obviously they're fairly high functioning if they
(37:59):
were able to be on a panel, right. So here
are these people who are fairly high functioning though they
have a dementia diagnosis, right. And I said, I'm going
to start by asking you all a question, what do
you like to watch these days on TV? And Betsy,
every one of them except one, So six people with
dementia said the same thing, which is, oh, I don't
(38:23):
watch TV because I'll tell you what, there are true characters.
I can't follow them. I can't track the plot. The
audio and the video are happening so fast that I
can't pay attention to either. I feel myself starting to
get agitated and upset and scared sometimes and I just
(38:43):
and it like reinforces the fact that there's something wrong
with my brain. I feel terrible. So I always either
turn off the TV or I leave the room. I
just can't watch regular TV. And so I think back
to my husband parked in a wheelchair, right, who has
the same experience they're having, but he can't tell anyone.
(39:06):
And yet we continue to use TV as a babysitter, like, oh,
just let's just put graum on front of the TV,
you know, just put on PBS or put on right,
put on the news or whatever it is, and the
person might start getting agitated and upset, and nobody stops
to think that, like, oh, it's because she can't follow
(39:29):
what she's supposed to be watching.
Speaker 1 (39:31):
So now, yeah, true that I have to say that
that is so true, because I mean, Matt loved watching TV,
and well, as he progressed, he couldn't follow his favorite
TV shows, not even his favorite movies like with John Wayne,
like The Quiet Man that he loved he couldn't understand
(39:54):
it and it was frustrating.
Speaker 2 (39:57):
And then he thought that the people in the TV
were in.
Speaker 3 (39:59):
The house exactly exactly. So with armed with all of
this information, like before, I just shared with a panelists.
But that kind of like drives home how early in
the disease TV is actually already a problem. So anyway,
in my experience, I thought, well, gosh, based on doctor
(40:20):
Demodeiras's paper and based on my own experience, that these
little videos that I'm making on my phone are soothing
and they drive conversation. If we're watching the video, as
the images come up, I can pause and say, oh,
look at this, I remember when we went to this place,
and we and just share some fact about what happened.
(40:41):
And so the conversations promote reminiscence, promote interaction. So, being
a woman of action, I ended up with a background
in technology. I reached out to a friend who was
at Apple and I said, I need to talk to
whoever created this that I'm using to make the videos,
(41:01):
because there are two things I need to know. First,
how do I get more content? Because I can make
little videos that are our dog and our vacation and
the kids, our cats. But I want to be able
to make little videos that are about seeing and about
kayaking and about things that biking, things that Evan loved.
(41:22):
And that's one problem. The other problem I'm trying to
solve for is I want to be able to share these,
like how do I share them with other caregivers, because
they are really very effective at helping drive connection and conversation.
So that led to an introduction to a fellow by
the name of Frank Lee who had recently left Apple,
(41:43):
but he was on the design team for that product
that I was using. And so when I had this
conversation with him and I told him what I was
looking for, he had this sort of like slap the
forehead moment where he said, oh my gosh, we never
thought about that as a youth case when we were
designing this. We never thought about the fact that there
(42:04):
are people who, for cognitive reasons, might be better off
with a slower viewing experience. And he said, we should
build this and sell it. I said, okay. So we
formed a company which was any a TV and we
added an artist who was a filmmaker as well. We
(42:27):
added a business guy, and for two years we pretty
much just developed content like making it iterating, and we
were very very lucky out of the gate to be
gifted money from a philanthropist in Canada. Now we couldn't
(42:50):
just take his money, you know, and pay ourselves salaries
or something. We couldn't do that. The money had to
be used by a charitable organization, and so we were
able to take that money and route it through Vancouver
General Hospital, which is a charitable organization who was partnered
with the University of British Columbia where they have a
(43:11):
lab that is all about caregiver support. And so for
two years while we were making content, it was being
tested in long term care communities and we were like iterate, iterate, iterate,
just constantly making changes to what we were doing until
we felt like we really had something worthwhile. And then
in all during COVID we had our videos available for
(43:35):
free on a website, just hoping to get feedback from
people and have a tool that people might be able
to use with their loved ones because they didn't have
anywhere to go. And then in twenty twenty two we
came out with our app at the end of twenty
twenty two, and so what we have now is Zinnia
is a streaming service that is available through an app
(43:57):
on Apple devices, on Android devices, Roku, and Amazon. So
most people who use it on their TV use a
Roku stick with it, which is like less than thirty bucks.
And the subscriptions are I think quite reasonably priced. It's
seventy dollars a year for people to use.
Speaker 2 (44:17):
Yeah, that's so very reasonable.
Speaker 3 (44:20):
Yeah, it's I mean, it's cheaper than like two hours
of in home care, right, So yeah, yeah, And so
we have quite a few long term care communities who
use Zinia, many family caregivers who use Zinia, and we've
got some great partnerships. Probably one of the most exciting
ones for me is that the State of New York
(44:41):
in twenty twenty four bought twenty thousand dollars worth of
Zinnia to give away, and then they just did it
again in twenty twenty five. So they are routing it
through the Alzheimer's Association in Western Washington, in Western New
York rather and through tripa A's to get it into
the hands of family caregivers. And we've done tons of
(45:02):
research and I'd say the main use cases are what
I first described that I wanted a tool to be
able to sit and talk and have meaningful interactions, be
able to reminisce together. And so we have videos about
sewing and baking and fishing and basketball and skiing and
(45:24):
horses and right, just like lots and lots and lots
and lots of different topics, we also have. Oh and
what we also find is if we can find videos
which we can right. Once we land on videos that
are particularly compelling to a person, it buys the caregiver
a little bit of respite, which is just caregiver gold. Right, Like,
(45:45):
if I know that he's pretty happy hanging out and
watching the content, which has been intentionally designed for people
who are living with dementia, who can't track a plot,
who can't tell fact from fiction, who can't process rapidly
moving audio and video, who can't follow characters. Right, our
stuff has been designed with that in mind. So if
(46:07):
he can hang on to it and watch it for
a little bit and I can go start dinner, ooh,
that's great. We also, I would say, the next use
case is that the videos are incredibly helpful at reducing
and soothing agitation, and so we hear amazing stories and
long term care of people who have actually changed their
(46:28):
care plan so that the first course of action when
somebody is getting upset is not to give them the
dose of their antipsychotic, but to use Zinia as a
tool to bring them down. And so I love that
that it's got sort of this therapeut. And then we
also have videos that are specifically intended to help with
(46:49):
activities of daily living. So videos like let's use the toilet,
let's take medication, let's get dressed or showered are used
by a caregiver to watch with the person before we
do this thing, so to just kind of get into
their mind, like, look at this, everybody's showering. Even the
dog is getting bathed, Like everybody's getting washed up, and
(47:10):
it's okay, why don't we go do that? That's a
good idea. And in our research, our research partners brought
discovered that when watching these those videos on a regular basis,
like every day at eleven o'clock in the morning, we
watch the drink water video and we follow it with
(47:30):
a glass of water, or every day when we get up,
we watch the good morning video, which sets that which
establishes that it's mourning right or every day before we
eat Breakfast. We watch the Eating Breakfast video and we
see hungry people who are sitting down at the table
and they're eating a meal. And now when we sit
down and there's a plate in front of you, it's
like fresh that this is what we're doing. We're eating
(47:52):
a meal and it's okay. Yeah. And then we have
a lot of videos that are intended just to be activities.
You know, we talked about the kids. My older son
wound up doing his masters in computer science and he
did an internship with us, which is that he developed
for us a product to allow us to rapidly build
(48:13):
using AI to rapidly build quiz content. And it's quizzes
that we've tested. We just rent did a test program.
We got some funding to test it in Massachusetts, and
what we discovered is that these quizzes are very unsuccessful
and it's just still living because the people watch them
and they're like, oh my god, it's so slow, and
(48:34):
look at that. There's an image there. It's a giveaway.
It's telling me what the answer is. But in memory care,
they were perfect because people stayed connected. We've heard just
fantastic stories about people who were like we thought he
was nonverbal, and he shouted out all the answers to
the quizzes. So I think this is a lovely way
to support caregivers and people who are living with dementia.
Speaker 1 (49:01):
Oh also, that is so wonderful. I could get just
you know, choked up, because this is exactly you know
what happens.
Speaker 2 (49:14):
I mean, I've I've met many people.
Speaker 1 (49:16):
Uh and the course of six years who, like I
said in the beginning, saw a need that they didn't
have at that time, but created it either during caregiving
or after they were a caregiver and now helping other people.
That is so phenomenal to me. And I always say this, Listen,
(49:37):
if I was looking for a TV streaming service, if
I was looking for a geriatric care planner or anything
that had to do with that with caregiving, I want
someone who experienced it themselves, because it's a whole different
bowl game.
Speaker 2 (49:59):
Yes when and they have experienced it themselves.
Speaker 1 (50:02):
And I've had people say, you know what, once I
became a caregiver and now I was more understanding, which
of course that happens.
Speaker 2 (50:12):
Excuse me, I And how do people how do they content.
Speaker 1 (50:22):
You or and and how do they get the Zinia
TV to check it out.
Speaker 3 (50:28):
Yeah, that's a great question. So and what I'm happy
to answer, so Zenia, if they go to our website,
which is zeniatv dot com so dub dubdub dot ziniatv
dot com, there is they have a few options. One
is that you can you can buy as you can
(50:49):
do a free trial, and so the free trial is
for two weeks, have access to the whole system. It's
you are running the live program. You you need to
put a credit card down, So I always warned people
about that. I wish there was a better way for
us to do it, but we can't do you put
a credit card down. If you cancel it within two weeks,
your credit card never gets charged. So you do have
(51:11):
two full weeks to check it out. We also have
free videos on our website so that people who are
like I don't know, I just like I don't know
if he'd like it and or she would like it,
you can watch the videos together that are on our
website and just get a sense like is it doing anything?
You know? Is it accessible? Can is he or she
(51:33):
able to follow along? And so yeah, that's how people
get it.
Speaker 1 (51:39):
And the website is phenomenal I did take a look
at it. And how do they contact you?
Speaker 2 (51:45):
Allison?
Speaker 3 (51:46):
Yeah, anybody who wants to reach out to me, my
email is probably the easiest way, and it's just Alison,
which is a I'll say it slowly, get your pencils then,
which is a ll Y s O n at like
June Allison at zenia TV dot com. That's z I
(52:07):
n n i A dot com. But there's also a
our Our info at ziniatv dot com is on our
website and that comes through to me eventually also, So
that's it.
Speaker 2 (52:24):
Wow.
Speaker 1 (52:26):
Oh Alison, thank you so much for coming on today,
sharing your story, sharing about Evan, your children, zen TV folks.
Speaker 2 (52:38):
This is a This is the type of interviews that
warms my heart. It really does it. You inspired me, Allison.
I've tears in my eyes because you.
Speaker 1 (52:52):
Know, once you've gone through this journey, you're not the
same person and you just want to help people.
Speaker 2 (53:00):
You know, you just really want to help people. Sharing
the story. I mean, we've heard stories, Alison. You and
I both know.
Speaker 1 (53:10):
What it's like to try to get a diagnosis, the
frustration with that, you know, dealing with with children finding something.
It's so important I think well, I don't think, I
know Matt would have benefited thea TV because.
Speaker 2 (53:29):
You know Evan, you know people before there. Yeah, well,
i'll tell you what.
Speaker 1 (53:36):
I'm sure he's very proud of you, and he's smiling
where he is, he's smiling, yes, And that's I always say, Alison,
and this is just how I feel. We'll always carry
the pain of wals with us, and the best way
(53:58):
we can honor our loved ones is by helping others
and honoring their memory. And that's exactly what you're doing,
you know, So I yeah, applaud you and thank you
for the work that you were doing to help other
people and honoring Evan's memory because that is part of
(54:23):
his legacy.
Speaker 2 (54:25):
And that's just how I feel with You're welcome.
Speaker 3 (54:28):
I love that, and I think that for us, the
greatest thing that we can do is just get the
word out. You know, about seventy eight percent of people
who go to our website who are caregivers wind up
signing up, and so that's fabulous. And we also know
(54:50):
that that over eighty percent of caregivers who use Zinia
report back that it reduces their own stress, and so
that's what we're here for right. I mean our thesis
is basically, if if she's happy, I'm happy, and so
we're trying to help make every day a little better.
Speaker 1 (55:12):
Yes, oh, thanks, thank you so much, folks. I'm inspired
you heard Alison Schreier today and all the information about
in your TV and Alison will be in the blog
that Jennie White, who's the station manager, writes and Genie
(55:33):
produces the show. And I just want to thank you
again Alison for all that you do, all that you
will be doing in the future, and sharing your day
with me today and sharing your story. And I want
to thank you the listeners, thank you for listening. Please
share this show. Uh you probably know someone who is
(55:57):
a caregiver, and I'm sure you know so one who
has dementia. Sure a buzz in the TV. Let them
listen to the show. And I want to reach as
many people as possible and help as many people as possible,
and so does Allison. So please share Chatting with Betsy
And if you don't the ray, subscribe it is for free.
(56:18):
I'm on Spotify, Spreaker, Amazon Music to.
Speaker 2 (56:21):
Name a few.
Speaker 1 (56:22):
But if you have Alexa, you could program Alexa to
listen to Chatting with Betsy, and I want to thank
Lilia Coldwell, who CEO pastor will Talk Radio Network, MIKEX
this all possible, and again thank you for listening and
find me. I'm on Facebook bets Worthel, w r z
(56:43):
E L. And as I always say at the end
of my show in our world that you could be anything,
please be kind and shine. You're light bright because we
need it now more than ever before. Thanks for spending
some time.
Speaker 2 (56:59):
With me today.
Speaker 1 (57:00):
This is Betsy Worthel. You're a host of Chatting with Betsy,
my passionate world talk radio network. Bye bye now
Hello, everyone, this is Betsy Worzel. You're a host of
Chatting with Betsy. I'm Pasture will Talk Radio Network, a
subsidiary of Global Media Network LLC our mantras to educate
and lighten and entertain. The views of the guest may
not represent those that a host the station. And I
(00:21):
want to thank you for joining me today, taking me
with you wherever you are to listen. You're gonna want
to listen to my guests today. My heart is to
always interview caregivers. That's how I started the show as
interviewing caregivers, and I expanded into different genres and areas,
(00:45):
but my heart will always be for the caregivers. Why
Because I was one, I know what it's like. And
my guest today was a caregiver also, and I had
to say the folks, in my opinion, the caregivers who
did a caregiving saw that they had at need and
(01:08):
there wasn't anything available, became very creative and created what
they did.
Speaker 2 (01:15):
Need when they were a caregiver.
Speaker 1 (01:17):
They're doing it for other caregivers because once you're a caregiver,
I feel like your heart is just for caregivers and
that will never stop. It hasn't for me, but with
me today is Alison Schreier. And I'm going to spell
Allison's name A L L Y s O N Schreyer
(01:41):
sc h R I E R. Allison's husband Evan, She
was a caregiver for him and he had frontal temporal
lobe dementia. And Alison this co founder and president of
Zena TV, and she turned her experiencet caregiving into a
(02:03):
career focused on helping both people with dementia and those
who care for them. Alison became a dementia educator, teaching
both family and professional caregivers about best practices around supporting
people with dementia. Alison helped launch then manage an education
program at the University of Washington to equip primary and
(02:28):
allied healthcare providers to better diagnose and support patients living
with dementia. Allison was honored to be a recipient of
a twenty twenty Maud's Award for Innovation in Alzheimer's care
and was named Divisionarycaregiver twenty twenty by caregiving dot Com.
(02:51):
Allison sits on the Health and Medical Subcommittee of the
Washington State Dementia Action Coaborative, and she facilitates support groups
for spouses of people with dementia and lectures on topics
about dementia caregivers.
Speaker 2 (03:09):
Allison is a wonderful.
Speaker 1 (03:11):
Resource and I want to welcome you, Alison Schreyer. The
Chatting with Betsy and before I forget this podcast is dedicated.
Speaker 2 (03:21):
In memory of Evan Schreyer, who is Alison's husband. I
get joked.
Speaker 1 (03:26):
I'm just even saying that because it was my husband's
birthday yesterday. So I want to thank you Allison for
coming on.
Speaker 3 (03:37):
My God, it's my pleasure. Yeah, And I get choked
up me hearing Evan's name and just the idea that
you can be honored and remembered is crucially important to me.
So thank you for that.
Speaker 2 (03:52):
And you're welcome.
Speaker 3 (03:54):
Say here for a moment. I am because we're on
the phone, I'm able to be outside and I am
in my garden right now where I wish I Betsy.
I will send you a picture afterwards because you mentioned
Zinnia TV and it's Xinia like this flower because I
am a mad gardener and zinias are one of my
(04:16):
favorite flowers. Because of the fact that I'm unable to
kill them, they keep going even no matter how bad
circumstances are, which is why uh we called it Zinnia TV.
Speaker 1 (04:32):
I think they're a beautiful flower, so that is a
great choice. And I understand you becoming emotional, getting choked
up when you hear Evan's name and what you did
in honor of Evan's memory and to honor his wife.
Speaker 2 (04:55):
I get choked up myself with.
Speaker 3 (04:57):
The thanks, you know, with people.
Speaker 1 (05:01):
Telling me that my videos with Matt helped them, and
you know how Matt touched your wife.
Speaker 2 (05:10):
And you know, Allison, this just goes to show.
Speaker 1 (05:15):
We never know the ripples we create, right, either for
negative or positive. Because when my videoed Matt, I had
no clue. I just was video with him. I went
in my car to do videos about caregiving, never thinking
where it would lead to, you know, I just wanted
(05:35):
an interview.
Speaker 2 (05:38):
Yeah with that. Yeah.
Speaker 3 (05:42):
With my kids small, we used to read a book
called Because a Little Bug Went kurtew and it's all
about this, you know, the butterfly effect, right, the idea
that you just don't know the way that the things
that you do are going to impact others for good
or ill. But sometimes a small, small but genuine actions
(06:07):
can have a profound effect.
Speaker 1 (06:10):
Oh absolutely, And I'd like to know about your experience
first before you.
Speaker 2 (06:18):
Created is in the TV.
Speaker 1 (06:22):
What how old your husband, Evan was when he was diagnosed.
Speaker 2 (06:27):
I know your children were young at the time, and.
Speaker 1 (06:30):
I'll tell you the folks, Oh my goodness that my heart,
Alison goes out to you because your kids were young.
I mean, my son was fifty Well he was fifteen
when we moved in with my mother in law, but
he was twenty five or twenty six when his dad
was diagnosed.
Speaker 2 (06:48):
That's tough enough, but go ahead it yeah, well your does.
Speaker 1 (06:53):
Sure.
Speaker 3 (06:54):
So Evan was forty seven and the kids were twelve
and fifteen when he was diagnosed. But of course with
he had behavioral variant frontal fronto temporal dementia, and that
means that the first thing that we noticed were behavior changes,
personality changes that he just started not being himself. He
(07:17):
became very I have to say out of the gate
that he was one of the kindest, most generous people
I've ever known in my life, and suddenly he started
being a different guy. And he was very difficult for
the kids to be around for the years leading up
to his diagnosis because he would get uncommonly upset about
(07:42):
like if they touched one of his beds or something
and really been out of shape. If they were playing
a video together and the kids won. Rather than being like, wow, yeah,
you you did it, which is what he healthy him,
would have done. Instead, he would get angry and you know,
saying and doing things that were uncharacteristic. This is all
before the diagnosis, and Betsy, he had been diagnosed incorrectly
(08:08):
as having adult onset add and I didn't know any better.
You know, that's what a doctor said.
Speaker 2 (08:17):
So, oh my goodness, Alison, So was Matt. Matt was misdiagnosed.
Speaker 1 (08:25):
Yeah, yeah, I am not put on medications, yes, and depressions, why, yeah.
Speaker 3 (08:32):
Yes, yep. That is why I did the work I
did at the University of Washington educating doctors to be
better equipped to detect and diagnose dementia, because I just thought,
I saw how devastating it was for us to get
a diagnosis actually quite late in the disease, and I
(08:55):
don't want people to have to go through that. It's
a it's a horrible thing because you wind up operating
on that assumption, right, that he has adult on set
ADHD Well, I mean I know plenty of people with
ADHD and they get on with their lives. They take medication,
they make lists, right, they get they get it together.
But Evan couldn't do any of those things. He was
(09:17):
taking medication. But it got to the point where I
would write little sticky notes and put them in order,
like do this, then do this, then do this, and
I'd come home and I'd be like, digita whatever, and
he would say, no, I didn't feel like it. I'd
be what is going on? So yeah, yeah, yeah, there
was an interesting If there's a doctor by the name
(09:38):
of Reza Gomi r e z A g h O
M I he is, anybody who is a dementia family
Gegerer should follow him on LinkedIn. His tidbits are absolutely amazing.
But he today was talking about FTD and about the
difference between the behavioral variant which my husband had and
(10:01):
the aphasia variant, which is what Bruce Willis has. It's
a very very different disease, even though it's impacting similar
parts of the brain.
Speaker 1 (10:11):
But anyway, I don't wow, oh, I have to have
him back up alic Now, what was Evan's profession?
Speaker 2 (10:18):
What did he do for a living?
Speaker 3 (10:19):
Yeah, sure, Evan was a software engineer, and he was
a rock star. I mean was. He graduated from Brown
University in the late eighties, he got a job as
a software engineer at Microsoft, and he was just crushing it.
But he was even back then, there was something that
wasn't quite right, and that is that when I first
(10:42):
met him, he had only recently bought a Ford Explorer,
and the reason he bought it was because it was
the only car that was long enough for him to
take naps in the middle of the day in the
Microsoft parking lot, because every day he would get.
Speaker 2 (10:59):
So tired and whoa.
Speaker 3 (11:02):
You know the things that in retrospect it were like, oh, okay,
I guess you're just sort of a low energy person.
Like no, no, no, it is not normal for a healthy,
at that point twenty seven year old man to need
to take naps any day, every day. And one of
the things that we learned in the exploration when we
tried to figure out what once we once we admitted
(11:26):
right or once we got a doctor to agree with
us that we weren't looking at ADHD, and we started
going down the path to figure out what physiological cause
could be behind what was happening. One of the things
that we did is got a sleep study, and the
sleep study showed that he had horrible sleep apnea. And
(11:48):
people asked me, they were like, well, didn't you know,
didn't his snoring, Bobby, He didn't snore, And I always
thought that that was characteristic, Like the hallmark of sleep
apnea is that somebody snores, but it's not necessarily and
so I think that part of the issue. One of
the things that was so hard for his brain is
that for probably his whole life, he was not getting
(12:10):
good sleep. And I think that also had anything else.
Speaker 2 (12:16):
Yeah, Matt also has to sleep apnea. That'sye. Yeah, they
had that too.
Speaker 1 (12:27):
And you know they say that if you have gum disease,
you're more prone. He had gun disease a white year.
I'm curious, Alic that white year. Did you get a diagnosis?
I want to know if it was around the same
twenty Well, Matt was twenty ten, so they didn't have
(12:52):
the information, you know, back then, because I mean, in
interviewing people over almost six years, especially in the beginning
of my show, there are so many people that have said, Alison,
my spouseless, misdiagnosed yep. And how caregivers have had to
(13:15):
at that time fight for a diagnosis and proper treatment.
Speaker 3 (13:21):
Oh my god. I can't tell you how many doctors
we saw, and I will also share that in two
thousand and nine, to remember, he was diagnosed in twenty twelve.
In two thousand and nine, he was seen by a
neuropsychologist who did a full work up on him for
(13:43):
full neuropsych evaluation, and he was seen by a neurologist
who did an MRI. The neuropsychologist found that there were
surprising disparities in what he was able and unable to do,
but she wrote those off as well, you know you've
got ADHD and you've probably had it. Well, this is
(14:05):
indicates to me is that you've had it your whole life,
and because you're getting older, your brain just can't cover
up for you the way that it used to. And
again we're like, well, this is a neuropsychologist who knows
what she's talking about. And then the neurologist looked at
the MRI and I remember when Evan came out of
the office when he came home from his appointment, and
(14:29):
he was devastated, and he said the guy slapped me
on the shoulder and said, well, all I can say
is it stinks to be you because your brain is fine.
But when we took that MRI with us once he'd
been dying right because of a PET scan. And then
we took that MRI with us to specialists at the
(14:51):
University of California in San Francisco, which has a fantastic
team of FTD specialists, and we for as long as
Evan was still able to fly in an airplane, we
went there every six months to participate in research. And
they looked at that MRI and they just shook their heads.
They said, man, it is so clear that he had dementia.
(15:13):
So you know, it's the comedy of errors, except there's
nothing funny about it.
Speaker 1 (15:19):
I'm like, oh, Alison, I wish I could hug you.
So I'm hugging you through the airwaves because Matt I
feel it Mad went to a nervous psychologist.
Speaker 2 (15:30):
Also did a full worker.
Speaker 1 (15:34):
And I didn't know at that time what exactly was
going at work. I knew a little. I knew that
that was having trouble. That's why his coworker told me
to take her to a doctor. She had the audacity
to tell me to tell us that that was non
compliant and that he has a deep psychological.
Speaker 2 (15:56):
Problem and he couldn't possibly be that bad.
Speaker 3 (16:00):
Well, she was liked.
Speaker 1 (16:03):
And meanwhile, his MRI, he had AMRII done and it
showed global attreacy in his brain with his white spots.
So and even his EEG has said something like typical
of dementia. I mean, it blew my mind. And then
(16:28):
you know when you're told, oh, it's depression.
Speaker 2 (16:33):
You know ma's too young.
Speaker 1 (16:35):
Well, Matt's mom and her family all had uh. Well,
Matt's mom had Alzheimer's, and so did his grandmother and
his aunts and uncles. It wasn't if it wasn't in
the family, Allison, I would have believed these doctors. I
would have believed them if it's if this wasn't in
(16:59):
Matt's family. And I said, doctor neurologist. One time it
was in May twenty ten, I said, listen, Matt asked
me what time it was and asked me what time
Sunday school was that he thought for over twenty years,
that's not depression. You could be depressed. You know what
time it is, you know how to get to your job,
you know.
Speaker 2 (17:18):
How to do your job. You mean, I feel like
doing your job, but you know how to do it,
you know, And Sunday school is so I said, cool,
what it is? I mean it was.
Speaker 1 (17:29):
It's so frustrating folks to experience that. And if anyone's
listening to that's a new experience that, please send an email.
I want to hear your stories. I really do. What
did you experience? And I hope things are better now?
What's only hope? Okay, that things are better now, But
(17:54):
I don't know. My older brother he was having memory
problems before he died, and the neurologist I wanted to
throttle him, and he told my mother, well, there's nothing
we could do anyway. So yep, I mean, it's just
(18:17):
And that was four years ago, Alison. That was the
attitude of a doctor for four years ago.
Speaker 2 (18:23):
So I hope things are better now with the attitude,
you know.
Speaker 3 (18:28):
I think that things are getting better. I think there's
way more education both of individual humans, right of people
who are caregivers and people living with dementia. Uh and
certainly amongst doctors. I really, I really believe that there's improvement.
And yeah, I think that I lost my train of
(18:52):
thought never mind.
Speaker 2 (18:54):
That's okay. And your children.
Speaker 1 (18:58):
I always say children are the hidden casualties of the
caregiving because you know, as adults we have difficulty dealing
with it, and sometimes not that we forget, but you know,
we forget their their children or their adolescents and what
they need to cope with what's going on, and that's,
(19:22):
you know, very difficult. I encourage my son Josh to
go out, you know, I have a good time to
express how he felt. And I did not judge him,
you know when he said, oh, I don't like changing
daddy's diaper, I'm sad, and I'm like, yeah, I agree
with you, Josh.
Speaker 2 (19:40):
One hundred percent.
Speaker 1 (19:43):
Did you experience that, Allison, with you know, your children
having difficulties?
Speaker 3 (19:49):
Oh my god. Yes. So first of all, let me
just put out a plug for Lorenzo's House if there's
anybody listening who has children involved. Benzo's House came out
too late for me. But it's another program that was
started by a former family caregiver, and in this case,
(20:10):
Diane had young children like mine, and where she decided
to put her energy was to create resources for families
like hers, families like mine, and so they have a
really robust program to support children and younger caregivers, and wow,
(20:32):
there was no kind of supports available, so my kids,
it impacted things in a number of ways. The kids
were devastated by what was going on, And you have
to remember that for several years they lived in the
(20:52):
fear of, like, our mommy and Daddy going to divorce
because we were not getting along, because operating on the
assumption that the incorrect diagnosis of add I was just
really wrung out right, I'm like, for crying out loud,
it's add People live their lives with add Why are
(21:15):
you not following the little notes that I'm leaving, Why
are you not being proactive in any way? Why are
you so obstinate and so narcissistic? And so a blessing
of getting a diagnosis is that it completely changed that dynamic. Yes,
that I was able to be like, okay, instead of
being really angry all the time. I'm just sad, and
(21:38):
I will take sad over angry any day of the week.
So for the kids here, they are like worried about
mom and dad's relationship, wondering why Dad is acting so strange,
and then they get the news that he has this
disease that is going to cause him to have a
much shorter life than he otherwise would have. And so
(21:59):
a few other things. Factors that made it really hard
were that when Evan got he had a job and
he lost that job. It was the second job that
he's lost, and he and he couldn't complete graduate school.
(22:20):
And I thought, you know what, I don't know what's
going on, but I need to do two things pronto. One,
I need to start seeing a therapist because I have
to figure out how do you I did not want
to get a divorce. How do you live with a
person who is who is this person right? And who
is nothing like the person you married? And then the
(22:40):
other thing that I had to do was I had
to get a job. I was like, okay, I got
to go to work, like I got to figure something
out here because I don't think that Evan is ever
going to work again. And similar to your experience with Matt,
co workers would call me and they'd be like, what
is going on here? So I decided that we that
(23:02):
if I needed to get a job, we lived on
ten acres at the end of a dead end road
kind of in the middle of like in the middle
of nowhere, and so I thought, Okay, a few things
have to happen. One, if we aren't going to be
having a salary like the salary that Evan was earning
ever again, then we can't afford to keep our kids
(23:24):
in private school. The reason they were in private school
is because, as previously mentioned, we lived in the middle
of nowhere in a terrible school district. So the kids
went to private school. And I thought, okay, well, if
they're not going to be able to go to private
school because I have no idea what our financial future
is going to be like, then I need to get
(23:45):
them into a public school district that would that is
worth going to right And I also we need to
live closer to a highway so that I can have
ready access to finding to wherever my job might be.
And to me, what that looked like was we had
(24:06):
to move, like we couldn't stay in this house, and
I figured that we would start off living in an
apartment to kind of figure out how that works. A
factor that played into all of this is that we
had a dog who was astray that we took in.
My husband was in love with her, and she was
(24:26):
a pit bull. The apartment that I found wouldn't take
a pit bull, nor would any of the apartments that
I looked at. So I said to Evan, you know,
we're going to need to get rid of the dog
because we need to move to an apartment and they
won't take a dog. And he said, I'm not going.
I said, okay, well, then I am moving with the
kids to an apartment. It was six miles from our house.
(24:49):
Every day he came and ate dinner with us, and
on the weekends we would all go stay at the house.
So that's how we lived while And meanwhile I had
started looking looking for work, and I started seeing a therapist,
and eventually it was that therapist who listened to me.
We had a whiteboard moment where I laid out all
(25:10):
of the things that were happening. I mean, we were
seeing a counselor for partners where one of them has
ADD and I would bring up the outrageous things that
were happening, and he would always say, well, you know,
we can't judge people with add Yeah. And I said
to my therapists like, he's okay, this happened, this happened,
this happened, this happened, and this happened. Tell me, please,
(25:32):
this is not ADD and she just was like her
jaw dropped and she said, oh my god, this is
not ADD And so she is the one who turned
me on to a doctor who actually led us to
a diagnosis. But we were talking about the kids, and
it was devastating for them on so many levels. They
(25:53):
didn't go to school for a while, even though they
started their new school in our new apartment in September.
The diagnosis came in March and they just stopped going
to school. Eventually they went again, probably about three weeks later.
My older son did pretty well. He was going into
(26:16):
it was his first year of high school and he thrived,
so he was fine. He went on to college and
there we go. My younger son pretty much fell apart,
and he got an eating disorder because that you know,
when you're twelve years old and your life is completely
(26:37):
out of control. He wound up finding a way to
control things, which was that he developed an eating disorder
in high school. He made it through the he did
two years of middle school in the new school, and
then he moved on to the high school and just
started smoking a ton of pot and I and like
(27:00):
dealing with my husband with dementia. I've got a son
who is going has this feating disorder. We're seeing a
specialist for that and anyway, so he happy to report
all these years later that everybody is okay, we made
it through. But I will tell you that there were times,
especially with my younger guy, where I just thought that
(27:22):
the world is a very unfair place that not only
do we have a family member who has this devastating
brain disease, but also a child who's so impacted by
it that they're impacting their own brain. So yeah, yeah, stuff.
Speaker 2 (27:39):
I feel for you, Alice.
Speaker 1 (27:42):
And my son Josh has a come to disability. But
yet he understood Olzheimer's better than so cool intelligent people,
and he would just you know, out of the mouth
of babes. He would tell people that would say, oh,
(28:02):
I would close your dad up. He doesn't know who
I am, and Josh would say, well, it's not rocket science.
You cool up, you say who you are, and say
how you doing that?
Speaker 3 (28:11):
Exactly?
Speaker 1 (28:12):
Yes, I mean he was and he was great. He
was so patient, more patient than me at times with
his with his dad. He was really a wonderful with him.
But you know, there was the concerns. You know, one
(28:35):
dad goes into a home, and I was, you know,
people who have come to disabilities, and Joshua's disabilities. He
has trouble difficulty processing, like I don't know how much
he understands, but with his grandmother he knew.
Speaker 2 (28:52):
And you know, my mother in law.
Speaker 1 (28:54):
Was a very quiet woman and then she turned into
this raging maniac with the Olzheimer's. And I said, josh
it's like someone took a pencil to Grandma's brain and
erased all her memories.
Speaker 2 (29:07):
And he understood that.
Speaker 1 (29:10):
Yeah, you know, but it was funny because he said
to me, he said, what happens if you meet someone
after daddy dies and they don't want.
Speaker 2 (29:21):
Me and they don't like me?
Speaker 1 (29:24):
God, That's what he was concerned about, Alison.
Speaker 2 (29:29):
And you know I did not strike it off.
Speaker 1 (29:32):
I said, josh let me tell you, first of all,
I'm not ever getting married again.
Speaker 2 (29:37):
Once was enough for me. Thank you.
Speaker 1 (29:43):
I said, we're a package steal. Okay, this is your house.
This is your house. You live here. Nobody will ever
as long as I'm alive and breathing and consumption, nobody
will ever kick you out of your own home. They
had to go through me first. I said, we're a
package still. So if people you know.
Speaker 2 (30:06):
If I said, I don't have to worry about it
because I won't be dating.
Speaker 1 (30:09):
But if I did date, if I did find someone,
they would have to like you. That's a that's a requirement.
And if they didn't, then they could go bye bye.
Yeah you know, you know, but these are the things
that they think about.
Speaker 3 (30:31):
Yeah, I did Matt live in long term care? Or
was he at home the whole time?
Speaker 1 (30:38):
He was home the whole time until he went up
to the hospice unit.
Speaker 2 (30:44):
Where he died. You know, we were able to do it.
He was able to live at home.
Speaker 1 (30:51):
And I tell everyone, you know, everyone's circumstances is different.
If he would have lived atis then he would have
had to go and to a long term care, no question,
if you would have lived long term because he was
getting to where it was not manageable. And you know,
(31:12):
I believe in being honest. What they were children, you know,
don't I don't give the kids fullse hope. When I
knew when Matt went up to the hospital unit, I
knew he wasn't coming home. I knew he wouldn't there
to die and I told that to Josh. I was
very honest. I said, that is not coming home. He's
going to go to his heavenly home. He's not coming
(31:33):
to this home. So you know, to try to as
much as you can prepare yourself and your child or children.
Like it's like, how do you prepare your children for
their father dying? Now? I don't mean to be morbid, folks,
(31:54):
but this is a freaking fact of life. When you
are face of the terminal illness, this is real and
it's really it's difficult. And then when well Matt died
in twenty twenty, so then two months later COVID happened.
Speaker 2 (32:15):
Everything closed.
Speaker 1 (32:17):
So just didn't have a job, he couldn't socialize, just
when he needed it the most, it was taken away
in repetition.
Speaker 2 (32:27):
And schedule is.
Speaker 1 (32:28):
Very comforting to those who have a neurodivergent.
Speaker 2 (32:35):
Difficulties.
Speaker 3 (32:37):
Yeah, they liked their schedules.
Speaker 2 (32:39):
It's a comfort to them.
Speaker 1 (32:41):
And it was rough, but we made it through, you know,
we did. I let yeah, you know, Josh talk about it.
Speaker 2 (32:48):
And that's the thing. I don't want to digress.
Speaker 1 (32:52):
I just want to say this for those of us
who have boys, sons, you have to let them come
to you and discuss it. Don't tell them to be strong,
it's the worst thing you could tell them, or just
or to suck it up because you're gonna have a
kid that's gonna have a nervous break down.
Speaker 2 (33:13):
I'm telling you you need.
Speaker 1 (33:15):
To let them vent. And that's what I did. I
let people vent. And when someone said to Josh, I'll
be strong for your mom, I said, don't you ever
say that to him again. Don't ever let me hear
you say that he doesn't have to be strong. Yeah, exactly,
you know, Mama bear comes out.
Speaker 3 (33:36):
Yeah, so we'll go forward.
Speaker 1 (33:43):
How did you create and faum co founded vimea TV?
That is, Yeah, want to hear about that and what
it would the benefits because I think Matt would have
definitely been the fit in from that.
Speaker 3 (34:02):
Yeah, so I'm going to give you like three little
data points that sort of have to do with it.
There is probably the best way for me to answer
this question. So when Evan had moved into long term care,
(34:23):
he was also nonverbal, and he eventually was nonverbal, and
I found it so difficult to have anything to talk
about that wasn't transactional. And what I mean is that
I would show up and I'd be like, wellow, let's
say I want to a grocery store today. You should
see the price of water melons.
Speaker 2 (34:43):
You know.
Speaker 3 (34:43):
It was just like bled led lah lah lah, stuff
that was completely uninteresting. But that's what I would talk
about because that's like what was fresh for me. I started,
and I didn't like it, but right, but I thought,
I need to think of things to talk about. And
I realized, Oh, if I bring images with me, like
pictures or magazines, we can flip through and we can
(35:07):
look at the pictures and then we can tell stories.
I can tell stories about those pictures. Or if he
was a healthy person, right, like if he's still not healthy,
but if he was still verbal, I could have said,
tell me this story about what's on what's in this picture.
And so I started making little videos on my phone
(35:28):
were that used Apple's Memories products, which allows you to
stitch together pictures on your phone. They're set to music,
slow paced, and they really worked. So I'll pause there
for a moment and say that. At the same time,
something that I noticed is that when I would show
up all too often my husband with Evan would be
(35:49):
parked in front of a television and literally parked because
he was in a wheelchair, and the volume would be
way up because you know, people are sort of hearing,
and it would be some random TV program and sometimes, Betsy,
he was clearly in distress, like he'd be pounding on
his chest, or he'd be shouting out squear words because
(36:12):
those were the only words he had left, or maybe
he'd be asleep, or maybe he would just kind of
be looking wildly around as if to say, get me
out of here. And he would then be labeled a
problem by the way, because he was disturbing the other
residents by his behaviors. So I did a bunch of
research trying to figure out, like why is the TV
(36:33):
so upsetting and how? And I was also curious about
this idea of like videos that help people. I found
a paper that had been published by doctor Kate de Madeiros,
and the title of the paper was Television Viewing and
People with Dementia living in long Term Care. And doctor
(36:54):
de Madeiros and her students went into long term care
communities and they showed the residence in Emory Care different
television programs. So it might be I love Lucy, It
might be Jerry Springer or Bob Ross the Painting Show.
And what they found is that the TV show that
(37:14):
was most that was least anxiety provoking, I'll say, was
something that was called Venice and it was simply slow
moving images of Venice with set to music. And I thought, well, gosh,
those are like the videos that I'm creating. I'm going
to fast forwards for a second and tell you that.
(37:35):
In May, I was that I presided over a panel
at the Michigan Assisted Living Association. The panel title, the
title of their presentation was Low Tech and No Tech
Solutions for People Living with Dementia. All of the panelists, Betsy,
had dementia. Now, obviously they're fairly high functioning if they
(37:59):
were able to be on a panel, right. So here
are these people who are fairly high functioning though they
have a dementia diagnosis, right. And I said, I'm going
to start by asking you all a question, what do
you like to watch these days on TV? And Betsy,
every one of them except one, So six people with
dementia said the same thing, which is, oh, I don't
(38:23):
watch TV because I'll tell you what, there are true characters.
I can't follow them. I can't track the plot. The
audio and the video are happening so fast that I
can't pay attention to either. I feel myself starting to
get agitated and upset and scared sometimes and I just
(38:43):
and it like reinforces the fact that there's something wrong
with my brain. I feel terrible. So I always either
turn off the TV or I leave the room. I
just can't watch regular TV. And so I think back
to my husband parked in a wheelchair, right, who has
the same experience they're having, but he can't tell anyone.
(39:06):
And yet we continue to use TV as a babysitter, like, oh,
just let's just put graum on front of the TV,
you know, just put on PBS or put on right,
put on the news or whatever it is, and the
person might start getting agitated and upset, and nobody stops
to think that, like, oh, it's because she can't follow
(39:29):
what she's supposed to be watching.
Speaker 1 (39:31):
So now, yeah, true that I have to say that
that is so true, because I mean, Matt loved watching TV,
and well, as he progressed, he couldn't follow his favorite
TV shows, not even his favorite movies like with John Wayne,
like The Quiet Man that he loved he couldn't understand
(39:54):
it and it was frustrating.
Speaker 2 (39:57):
And then he thought that the people in the TV
were in.
Speaker 3 (39:59):
The house exactly exactly. So with armed with all of
this information, like before, I just shared with a panelists.
But that kind of like drives home how early in
the disease TV is actually already a problem. So anyway,
in my experience, I thought, well, gosh, based on doctor
(40:20):
Demodeiras's paper and based on my own experience, that these
little videos that I'm making on my phone are soothing
and they drive conversation. If we're watching the video, as
the images come up, I can pause and say, oh,
look at this, I remember when we went to this place,
and we and just share some fact about what happened.
(40:41):
And so the conversations promote reminiscence, promote interaction. So, being
a woman of action, I ended up with a background
in technology. I reached out to a friend who was
at Apple and I said, I need to talk to
whoever created this that I'm using to make the videos,
(41:01):
because there are two things I need to know. First,
how do I get more content? Because I can make
little videos that are our dog and our vacation and
the kids, our cats. But I want to be able
to make little videos that are about seeing and about
kayaking and about things that biking, things that Evan loved.
(41:22):
And that's one problem. The other problem I'm trying to
solve for is I want to be able to share these,
like how do I share them with other caregivers, because
they are really very effective at helping drive connection and conversation.
So that led to an introduction to a fellow by
the name of Frank Lee who had recently left Apple,
(41:43):
but he was on the design team for that product
that I was using. And so when I had this
conversation with him and I told him what I was
looking for, he had this sort of like slap the
forehead moment where he said, oh my gosh, we never
thought about that as a youth case when we were
designing this. We never thought about the fact that there
(42:04):
are people who, for cognitive reasons, might be better off
with a slower viewing experience. And he said, we should
build this and sell it. I said, okay. So we
formed a company which was any a TV and we
added an artist who was a filmmaker as well. We
(42:27):
added a business guy, and for two years we pretty
much just developed content like making it iterating, and we
were very very lucky out of the gate to be
gifted money from a philanthropist in Canada. Now we couldn't
(42:50):
just take his money, you know, and pay ourselves salaries
or something. We couldn't do that. The money had to
be used by a charitable organization, and so we were
able to take that money and route it through Vancouver
General Hospital, which is a charitable organization who was partnered
with the University of British Columbia where they have a
(43:11):
lab that is all about caregiver support. And so for
two years while we were making content, it was being
tested in long term care communities and we were like iterate, iterate, iterate,
just constantly making changes to what we were doing until
we felt like we really had something worthwhile. And then
in all during COVID we had our videos available for
(43:35):
free on a website, just hoping to get feedback from
people and have a tool that people might be able
to use with their loved ones because they didn't have
anywhere to go. And then in twenty twenty two we
came out with our app at the end of twenty
twenty two, and so what we have now is Zinnia
is a streaming service that is available through an app
(43:57):
on Apple devices, on Android devices, Roku, and Amazon. So
most people who use it on their TV use a
Roku stick with it, which is like less than thirty bucks.
And the subscriptions are I think quite reasonably priced. It's
seventy dollars a year for people to use.
Speaker 2 (44:17):
Yeah, that's so very reasonable.
Speaker 3 (44:20):
Yeah, it's I mean, it's cheaper than like two hours
of in home care, right, So yeah, yeah, And so
we have quite a few long term care communities who
use Zinia, many family caregivers who use Zinia, and we've
got some great partnerships. Probably one of the most exciting
ones for me is that the State of New York
(44:41):
in twenty twenty four bought twenty thousand dollars worth of
Zinnia to give away, and then they just did it
again in twenty twenty five. So they are routing it
through the Alzheimer's Association in Western Washington, in Western New
York rather and through tripa A's to get it into
the hands of family caregivers. And we've done tons of
(45:02):
research and I'd say the main use cases are what
I first described that I wanted a tool to be
able to sit and talk and have meaningful interactions, be
able to reminisce together. And so we have videos about
sewing and baking and fishing and basketball and skiing and
(45:24):
horses and right, just like lots and lots and lots
and lots of different topics, we also have. Oh and
what we also find is if we can find videos
which we can right. Once we land on videos that
are particularly compelling to a person, it buys the caregiver
a little bit of respite, which is just caregiver gold. Right, Like,
(45:45):
if I know that he's pretty happy hanging out and
watching the content, which has been intentionally designed for people
who are living with dementia, who can't track a plot,
who can't tell fact from fiction, who can't process rapidly
moving audio and video, who can't follow characters. Right, our
stuff has been designed with that in mind. So if
(46:07):
he can hang on to it and watch it for
a little bit and I can go start dinner, ooh,
that's great. We also, I would say, the next use
case is that the videos are incredibly helpful at reducing
and soothing agitation, and so we hear amazing stories and
long term care of people who have actually changed their
(46:28):
care plan so that the first course of action when
somebody is getting upset is not to give them the
dose of their antipsychotic, but to use Zinia as a
tool to bring them down. And so I love that
that it's got sort of this therapeut. And then we
also have videos that are specifically intended to help with
(46:49):
activities of daily living. So videos like let's use the toilet,
let's take medication, let's get dressed or showered are used
by a caregiver to watch with the person before we
do this thing, so to just kind of get into
their mind, like, look at this, everybody's showering. Even the
dog is getting bathed, Like everybody's getting washed up, and
(47:10):
it's okay, why don't we go do that? That's a
good idea. And in our research, our research partners brought
discovered that when watching these those videos on a regular basis,
like every day at eleven o'clock in the morning, we
watch the drink water video and we follow it with
(47:30):
a glass of water, or every day when we get up,
we watch the good morning video, which sets that which
establishes that it's mourning right or every day before we
eat Breakfast. We watch the Eating Breakfast video and we
see hungry people who are sitting down at the table
and they're eating a meal. And now when we sit
down and there's a plate in front of you, it's
like fresh that this is what we're doing. We're eating
(47:52):
a meal and it's okay. Yeah. And then we have
a lot of videos that are intended just to be activities.
You know, we talked about the kids. My older son
wound up doing his masters in computer science and he
did an internship with us, which is that he developed
for us a product to allow us to rapidly build
(48:13):
using AI to rapidly build quiz content. And it's quizzes
that we've tested. We just rent did a test program.
We got some funding to test it in Massachusetts, and
what we discovered is that these quizzes are very unsuccessful
and it's just still living because the people watch them
and they're like, oh my god, it's so slow, and
(48:34):
look at that. There's an image there. It's a giveaway.
It's telling me what the answer is. But in memory care,
they were perfect because people stayed connected. We've heard just
fantastic stories about people who were like we thought he
was nonverbal, and he shouted out all the answers to
the quizzes. So I think this is a lovely way
to support caregivers and people who are living with dementia.
Speaker 1 (49:01):
Oh also, that is so wonderful. I could get just
you know, choked up, because this is exactly you know
what happens.
Speaker 2 (49:14):
I mean, I've I've met many people.
Speaker 1 (49:16):
Uh and the course of six years who, like I
said in the beginning, saw a need that they didn't
have at that time, but created it either during caregiving
or after they were a caregiver and now helping other people.
That is so phenomenal to me. And I always say this, Listen,
(49:37):
if I was looking for a TV streaming service, if
I was looking for a geriatric care planner or anything
that had to do with that with caregiving, I want
someone who experienced it themselves, because it's a whole different
bowl game.
Speaker 2 (49:59):
Yes when and they have experienced it themselves.
Speaker 1 (50:02):
And I've had people say, you know what, once I
became a caregiver and now I was more understanding, which
of course that happens.
Speaker 2 (50:12):
Excuse me, I And how do people how do they content.
Speaker 1 (50:22):
You or and and how do they get the Zinia
TV to check it out.
Speaker 3 (50:28):
Yeah, that's a great question. So and what I'm happy
to answer, so Zenia, if they go to our website,
which is zeniatv dot com so dub dubdub dot ziniatv
dot com, there is they have a few options. One
is that you can you can buy as you can
(50:49):
do a free trial, and so the free trial is
for two weeks, have access to the whole system. It's
you are running the live program. You you need to
put a credit card down, So I always warned people
about that. I wish there was a better way for
us to do it, but we can't do you put
a credit card down. If you cancel it within two weeks,
your credit card never gets charged. So you do have
(51:11):
two full weeks to check it out. We also have
free videos on our website so that people who are
like I don't know, I just like I don't know
if he'd like it and or she would like it,
you can watch the videos together that are on our
website and just get a sense like is it doing anything?
You know? Is it accessible? Can is he or she
(51:33):
able to follow along? And so yeah, that's how people
get it.
Speaker 1 (51:39):
And the website is phenomenal I did take a look
at it. And how do they contact you?
Speaker 2 (51:45):
Allison?
Speaker 3 (51:46):
Yeah, anybody who wants to reach out to me, my
email is probably the easiest way, and it's just Alison,
which is a I'll say it slowly, get your pencils then,
which is a ll Y s O n at like
June Allison at zenia TV dot com. That's z I
(52:07):
n n i A dot com. But there's also a
our Our info at ziniatv dot com is on our
website and that comes through to me eventually also, So
that's it.
Speaker 2 (52:24):
Wow.
Speaker 1 (52:26):
Oh Alison, thank you so much for coming on today,
sharing your story, sharing about Evan, your children, zen TV folks.
Speaker 2 (52:38):
This is a This is the type of interviews that
warms my heart. It really does it. You inspired me, Allison.
I've tears in my eyes because you.
Speaker 1 (52:52):
Know, once you've gone through this journey, you're not the
same person and you just want to help people.
Speaker 2 (53:00):
You know, you just really want to help people. Sharing
the story. I mean, we've heard stories, Alison. You and
I both know.
Speaker 1 (53:10):
What it's like to try to get a diagnosis, the
frustration with that, you know, dealing with with children finding something.
It's so important I think well, I don't think, I
know Matt would have benefited thea TV because.
Speaker 2 (53:29):
You know Evan, you know people before there. Yeah, well,
i'll tell you what.
Speaker 1 (53:36):
I'm sure he's very proud of you, and he's smiling
where he is, he's smiling, yes, And that's I always say, Alison,
and this is just how I feel. We'll always carry
the pain of wals with us, and the best way
(53:58):
we can honor our loved ones is by helping others
and honoring their memory. And that's exactly what you're doing,
you know, So I yeah, applaud you and thank you
for the work that you were doing to help other
people and honoring Evan's memory because that is part of
(54:23):
his legacy.
Speaker 2 (54:25):
And that's just how I feel with You're welcome.
Speaker 3 (54:28):
I love that, and I think that for us, the
greatest thing that we can do is just get the
word out. You know, about seventy eight percent of people
who go to our website who are caregivers wind up
signing up, and so that's fabulous. And we also know
(54:50):
that that over eighty percent of caregivers who use Zinia
report back that it reduces their own stress, and so
that's what we're here for right. I mean our thesis
is basically, if if she's happy, I'm happy, and so
we're trying to help make every day a little better.
Speaker 1 (55:12):
Yes, oh, thanks, thank you so much, folks. I'm inspired
you heard Alison Schreier today and all the information about
in your TV and Alison will be in the blog
that Jennie White, who's the station manager, writes and Genie
(55:33):
produces the show. And I just want to thank you
again Alison for all that you do, all that you
will be doing in the future, and sharing your day
with me today and sharing your story. And I want
to thank you the listeners, thank you for listening. Please
share this show. Uh you probably know someone who is
(55:57):
a caregiver, and I'm sure you know so one who
has dementia. Sure a buzz in the TV. Let them
listen to the show. And I want to reach as
many people as possible and help as many people as possible,
and so does Allison. So please share Chatting with Betsy
And if you don't the ray, subscribe it is for free.
(56:18):
I'm on Spotify, Spreaker, Amazon Music to.
Speaker 2 (56:21):
Name a few.
Speaker 1 (56:22):
But if you have Alexa, you could program Alexa to
listen to Chatting with Betsy, and I want to thank
Lilia Coldwell, who CEO pastor will Talk Radio Network, MIKEX
this all possible, and again thank you for listening and
find me. I'm on Facebook bets Worthel, w r z
(56:43):
E L. And as I always say at the end
of my show in our world that you could be anything,
please be kind and shine. You're light bright because we
need it now more than ever before. Thanks for spending
some time.
Speaker 2 (56:59):
With me today.
Speaker 1 (57:00):
This is Betsy Worthel. You're a host of Chatting with Betsy,
my passionate world talk radio network. Bye bye now
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