Episode Transcript
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Speaker 1 (00:01):
Good morning everyone, Welcome to Life Happens Radio. I'm your
host Lupiro for this morning, and we have a very
important topic for all of you out there, because this
topic touches so many of our listeners and ultimately our
clients and our clients are of a pure O'Connor and Strauss.
That's our law firm based here in Albourne, New York,
but with offices around New York State, in Florida, New Jersey, Connecticut.
(00:24):
We do a state planning, elder law, special needs planning,
business succession planning. We do litigation like guardianship litigation, and
a state and trust litigation. So at our law firm,
many of our practice areas are touched by this next
topic because we have clients who come in, we have
families who come in, and of course the topic I'm
(00:46):
speaking of is dementia. What happens when you get that
diagnosis and what happens. It's a stunning diagnosis, especially early
stage Alzheimer's. Someone who gets diagnosis in their late fifties,
early sixties, people who are in their eighties nineties. I
heard a statistic very recently that of all people age
(01:10):
eighty five, almost half have some form of dementia. So
the longer you live, obviously, the more prevalent this becomes
in your age category. And it touches though not just
the person who gets that diagnosis, but everyone around them,
their entire family, their friends, the people that care for them,
(01:31):
that love them. It is a very much family disease.
And we have a couple of people here today who
are expert in the field who are going to help
us discuss, unravel and talk about how to deal with
the diagnosis of Alzheimer's or dementia and what it means
to the family and what resources are available, and of
(01:53):
course we'll touch on the latest research we have done
this year over year, we have had Beth Boven, the
director of the local Alzheimer's chapter, and today we have
another special guest, and that is Erica Salameda. I hope
I pronounce that right. And Erica is with the New
(02:14):
York State Coalition of Alzheimer's Association Chapters, and we'll talk
about that and what that is in just a moment.
But we also have a familiar guest with us, Diane
Mikkel Gottabiowski, who is with ever Home Care Advisors and
the name ever Home I think has carefully chosen, Diane,
because people want to be at home, and if you
(02:35):
do have dementia, how do you get the services into
the home, how do you prepare yourself for that, and
what kinds of services are available. So we have a
lot to cover in this hour, and we're going to
start right in with Erica talking about your organization. And
I'm not as familiar with the New York State Coalition
(02:56):
as I am with the Alzheimer's Association locally. I was
on the board there for six years. So tell us
a little bit about your organization and what it does.
Speaker 2 (03:03):
Thank you, Thanks so much, Loue for having me today.
So as you said, I'm Erica Salameda. I am the
director of Community Outreach for the New York State Alzheimer's
Association Coalition, and that is we are part of the
Alzheimer's Association. That is our coalition of our seven Alzheimer's
Association chapters across the state of New York. One of
those chapters is the Northeastern New York Chapter and I
(03:24):
work out of there primarily, but do work on behalf
of all seven of our chapters. We do cover all
sixty two counties in New York State and serve constituents
with you know, dementia and their family caregivers across the state.
Speaker 1 (03:38):
And it is such a family issue, and you're sitting
with two people here in studio who have experienced it
as family members. But tell us about that focus, because
we're going to talk about the research and what's going
on in the research side of this, because there have
been some breakthroughs, but it has been a really long
process to get to this, And tell us about how
(04:00):
families get impacted and what kinds of resources they should
be looking for.
Speaker 2 (04:03):
Absolutely, and I'm sorry to hear about your personal connections.
I too have one. Both of my grandmothers had Alzheimer's disease.
They both died with this disease. So it's near and
dear to my heart. And you know, it's definitely a
disease that impacts the entire family. It takes a huge
emotional and mental toll on a family, also a financial
toll on a family. This is a disease that can
(04:25):
be very long. On average, you know, a person lives
from four to eight years after diagnosis, but many of
them live for a long time. And I think the
longest person that I know of a family that I
helped with this disease had it for about twenty four
years start to finish. So that's a really long time
to watch your loved one experience all of these gradual
(04:46):
losses while at the same time have to figure out
how to increase the care needs as their care needs,
you know, increase along the journey. So lots to consider,
certainly a disease that's a little bit unique because as
you have such a sense of anticipatory grief that sometimes
you don't have with other diagnoses.
Speaker 1 (05:05):
Yeah, you mentioned the losses of the patient who has
the diagnosis, it's the losses of the caregiver are equally
dramatic and equally impactful because you're grieving but you don't
have a chance to You're losing someone day by day
and they're in front of you, changing into people that
(05:30):
you don't recognize and they don't recognize you, and that
sense of loss you never really cope with. I think
as someone who dies of a heart attack, you have
a very sudden event, you have an ability to grieve,
you have an ability to move forward. But when someone
else has Alzheimer's, that process and twenty four years is
(05:50):
a very long time. Our family's experience with my mom
Geneva was eight years, and Diane, I know that you
have family experience as well.
Speaker 3 (05:59):
Yes, the challenge of diagnosis and getting that diagnosis, and
then you know, just traveling with my mom through her
journey was about three to four years.
Speaker 4 (06:13):
But I'm sure that.
Speaker 3 (06:15):
Erica could talk about the role of diagnosis and when
it actually happens, the struggle to get the diagnosis, not
that you're looking for it and you want that stamp
of yes, you have Alzheimer's or yes, this is Alzheimer's.
Speaker 4 (06:31):
So you know, you talked.
Speaker 3 (06:32):
It's funny, Erica when you just said anticipatory grief. That's
exactly what I was writing on my notebook at the moment.
And I'm also learning about ambiguous grief, so there's a lot.
Speaker 4 (06:43):
That goes on there.
Speaker 3 (06:44):
And yeah, twenty four years, that stopped me when you
said that.
Speaker 1 (06:48):
And when you're going through it, you don't diagnose yourself
with anticipatory grief or any other type of You're just
trying to cope on a day to day basis and
deal with all the issues that you have to deal with,
finding care, you know, filling in all the voids in
aone's life, who is losing the ability to perform all
the vital functions. In many cases, it's the person who
(07:10):
has taken care of their family. My mom was our
rock and you know, the whole family when she was
going through her Alzheimer's trajectory. Our whole family just kind
of went with her and said, okay, so how do
we do all the things that she used to do?
And that's the family issue in dealing with this. Yeah.
Speaker 2 (07:29):
Absolutely, And I think you know, one thing that we
don't really talk about enough is, you know, the other
losses that the caregiver might experience outside of the losses
of having a loved one go through this disease, like
becoming isolated because they can't leave that person at home
alone anymore. Sometimes the loss of other important relationships and
(07:49):
friends as they start to kind of step away a
little bit. Maybe they're uncomfortable with the disease themselves, or
they don't know exactly how to help the person. But
there's a lot of other losses that go along for
just that caregiver.
Speaker 1 (08:01):
So yeah, I'm thinking about thousand anecdotes about my mom
right now, but one in particular, she had a group
of friends, one was her sister in law and other
friends and she was the only one of them that drove,
And so every Sunday they would look to her to
(08:22):
drive them to church, and unless they were telling her
where to turn and where to go, she would not
have been able to make it the church. But they
were using her to get the church and be their ride.
And then lo and behold. You know, we left the
car for her for a period of time and I
got a call from the police department in East green
(08:43):
Bush and my mom lived in Hudson, so that's about
a thirty minute drive to East green Bush and they said, well,
your mom, you know she's here. She's kind of not
knowing where she's going. Oh yeah, why is she there? Well,
she was going to the supermarket, which is right around
the corner from her house, and she ended up thirty
minutes away. So we had to figure out a way
(09:03):
to deal with the cars. It's one of the many
issues that families deal with. And Diane, you you have
dealt with this in your own family with your own
mother and all the issues that Erica was just talking about.
How do you fill in those gaps voids and make
sure that someone is safe at home where they absolutely
want to be.
Speaker 3 (09:25):
So as we were starting to navigate this journey, I
just for your information, I'm a physical therapist and have
worked in the healthcare profession for many, many years. And
working in the healthcare profession, you think you know all
the resources, or you think you're supposed to know all
the and just.
Speaker 1 (09:44):
To put a little color on that, you worked in
a home health agency correct for twelve years doing home
health care right.
Speaker 3 (09:51):
And I worked in skilled nursing and I have been
the professional on the team with many many Alzheimer patients.
Speaker 4 (10:00):
So my message right now is whether you're a doctor,
a lawyer.
Speaker 3 (10:07):
A nurse, a physical therapist, anybody who's a medical professional,
just because you're a medical professional doesn't mean that when
this might happen to you, you have to know all
the information and you have to be the expert and
be the person in charge.
Speaker 1 (10:24):
Or the chair of the New York State Bar Association
Elder Law section, which I was when my mom got diagnosed,
and I had every resource I thought available.
Speaker 3 (10:33):
To me, right, so I stumbled upon quite literally this
company called ever Home, and I was not looking at
it from a personal perspective. I was looking at it
from a resource perspective in my current my role when
I was with the home care agency, so I started
exploring it and my eyes just opened wider and wider,
(10:55):
and I said, I have to learn more about this.
And well fast forward to today, I'm part of ever
Home and helping people find those resources and get the
help they need.
Speaker 1 (11:08):
So the resources eric are so important and the coalition
works with all of the different Alzheimer's associations to help
marshal those resources. So what are some of the things
that are being done in the field and how can
families work and access the help that they need.
Speaker 2 (11:26):
Absolutely, so, you know, Diane, thanks for sharing a little
bit about your story too, and you too, Lou as well.
Really important for families to understand. You know, even if
you are a professional in this field, you can't do
this alone. You cannot do this alone. As we said,
this could be a long journey. Many times it is
and there are just a lot of ups and downs
along the way. So you know, with any diagnosis, when
(11:48):
you get that diagnosis, we want you to get some
disease education first and foremost, and oftentimes that does not
happen in the physician's office. They don't have time to
do that.
Speaker 1 (12:00):
It's the last place you're going to get counsel.
Speaker 2 (12:01):
Yeah, and we understand that, so you know, we work
with physicians to make sure that they make that referral
to the Alzheimer's Association. But if they don't, we want
families to call us. We're going to sit down. We'll
offer you a free care consultation. We'll figure out where
you are in this process, where you are in the
diagnostic process, how many years this has been going on for,
and then you know what you need as a caregiver
(12:23):
and what your loved one needs. And then we'll start
connecting you to local community resources that can.
Speaker 4 (12:29):
Help you along the way.
Speaker 2 (12:31):
It might be a connection to Everholme. It might be
a connection to Pier O'Connor and Strauss for some legal
and financial planning. It might be a referral back to
our own organization for disease education classes, how to manage
difficult behavioral challenges that pop up, or how to communicate
effectively with your loved one. It might be attending a
(12:52):
support group or finding those resources where you can get
on demand and online support when you need it. The
best way I can tell families to figure out how
to connect with their local chapters by calling our twenty
four to seven helpline and that number is one eight
hundred two seven two thirty nine hundred. You can call.
(13:13):
There's a master's level clinician that will answer the phone
and answer your questions, and then you're going to get
a connection to your local chapter and they will be
able to help you with where you are right now
and what resources you might want to tap into.
Speaker 1 (13:25):
And if you didn't get to write that down, we'll
come back and we'll give out all of that information again.
There's also a great website and you can access the
Alzheimer's Association through that website. It takes a little more
time now to get in because they have a lot
of other stuff on there. Wow, So how do people
drill in and find these resources? It's a simple website
to find, but once you get in.
Speaker 2 (13:46):
There, once you get in there, yes, so thank you.
Our website is very robust, lots and lots of information
in there. So alz dot org. All's dot org is
our website. You can go in and there are all
sorts of different sections under standing Alzheimer's and dementia, understanding
the resources of the Alzheimer's Association caregiver Support, and that's
(14:07):
generally where people start, is the caregiver Support section. When
you open that up, you're going to find all sorts
of educational information, but also something that we have that's
called our Community Resource Finder, where if you're looking for
an elder law attorney, an assisted living community that has
a memory care neighborhood, a home care agency, you can
(14:27):
put in what you're looking for in your zip code
and it's going.
Speaker 4 (14:30):
To give you those resources.
Speaker 2 (14:31):
So alz dot org go to the caregiver section first,
but we've also you know, we've talked just briefly about
some safety circumstances today, and that's a real big concern
with this disease. There's a great safety section on the
website as well, and.
Speaker 1 (14:45):
We're going to talk about that right after this short
break when we come back. We'll get into the safety issue.
How do you keep someone safe at home? How does
technology day and play a role in that, What is
the current drug trials and treatments, and what are the
new treatment that are out the infusion therapies that are
out on the market today, and then how do you
manage this from a financial perspective because the cost of
(15:09):
caring for someone with Alzheimer's disease can be astronomical. So
stay tuned, stay with us. This is a great show.
Don't go away. I'm Lupierr, your host with this morning.
We are live in studio and I'll open up the
phone lines shortly and we're going to be right back
after this short break. Today's show is not an easy
(15:30):
show to think about. It's not anything that you expect
that's going to come into your life. But the name
of this show is life Happens. Are you prepared? And
we hope that today's show can help you prepare whether
you're in the midst of caregiving, whether you have a diagnosis,
or whether you're someone whose family may has a history
(15:52):
and a predilection towards the disease. And again, there are
many types of Alzheimer's and different dementias that can afflict people.
And Diane Mikkel Gottabiowski is the vice president of client
Services at ever Home Care Advisors and we are very
happy to have her here in a repeat visit. And
(16:14):
we have Erica Salamita of the New York State Coalition
of Alzheimer's Association chapters. So we have the Alzheimer's Association,
we have a private concern that provides care and services
to individuals going through this. And I'm going to open
up the phone lines if you have questions, if you
are a caregiver, if you have questions on the disease,
(16:35):
the treatments, We're going to get into those in the
second half of the show. Eight hundred talk WGY give
us a call. Eight hundred eight two five five nine
four nine again eight hundred eight two five five nine
four nine And Diane, when we broke for the commercial,
we were talking about safety in the home, accessing care
(16:57):
and being able to manage, monitor and and coordinate care
in the home. And that's what you do, So talk
a little bit about that and the kinds of resources
that you bring to the home.
Speaker 3 (17:08):
Sure with ever home care advisors, we have life care coordinators,
so different types of professionals from nurses, social workers, occupational
physical therapists who go into the home and we start
with an assessment, and that assessment starts with what do
you need, what are you looking for? And safety is
a huge part of that assessment. Our recommendations can be varied.
(17:35):
We can refer you to other organizations. We can refer
you to one of our sister organizations also that has
technology to help keep people safe at home and connect
a caregiver and the loved one, which we can talk
about in a little more depth later if we want,
but it's using monitors and communication devices to help some
(18:00):
of those gaps and care when you can't be with
the person twenty four to seven, or there's just a
need to walk outside for a little while and get
a breath of fresh air, you're still connected to that
person and help to keep them safe in many many ways.
It could take the whole show to talk about it.
Speaker 1 (18:17):
Yeah, and just to kind of give people a little
lay of the land for this. A lot of people think, oh,
I'm going to call my state agency or some group
that's going to plug me into everything that I need.
But what's happening is there are all of these little
pockets of innovation that are occurring, and one of them
happens to be right here in the Capitol region and
(18:39):
that is the Everhome viv Links Company. And what's out
there in the field. This isn't something that you're going
to see out there that's going to be promoted it's
something you have to kind of search out, and people
call a lot of different phone numbers. There's advertising. You
call a place for mom, and you know when you
(19:00):
call a place for mom, it's a great service if
you're looking for assisted living facilities and they place people
in assisted living. But if the place mom wants isn't there,
it's home, that's not where you want to go. So
there are different avenues that people get pulled down. But
talk about Everholme's mission, what you do and how that
technology helped you care for your mom.
Speaker 3 (19:21):
Sure, I speak from personal experience, and when I started
my journey with Everholme and then Viva Links, I was
not ready to stop working and I was able to
continue to do that. So what we as I said,
we do an assessment and figure out what the needs are.
(19:43):
So I'll talk about my case where well, I'm a
physical therapist, I've been in healthcare for a long time,
I live close to my parents, I'm a strong person.
I don't need much help. Is where my mind was at,
and that's not an uncommon We talk to caregivers and
loved ones and clients themselves. We're doing okay, We're doing okay.
(20:06):
We don't need help.
Speaker 1 (20:07):
Yeah, denial, tough denial, the denial, denial, denial, denial is
not a river in Egypt, It's in every household. And
people refuse the help from the Alzheimer's Oh, I'll call
them when I need them. Well, you need them now.
You need to prepare now, you need to access the
Alzheimer's Association now, and these resources early on you get
(20:29):
the best chance of success.
Speaker 3 (20:31):
One of our long standing clients, as a matter of fact,
I think client number one says, if you wait until
you're in a crisis.
Speaker 4 (20:40):
It's too late. It's too late.
Speaker 3 (20:42):
You need to start thinking about about just getting things
in order.
Speaker 4 (20:46):
And that means conversations.
Speaker 3 (20:47):
That go back years, well before you know a diagnosis
of Alzheimer's is even on the horizon. We should all
be having conversations, very honest conversations. So asking for help
is not a weakness. It's not a weakness at all.
As a matter of fact, I found it makes you stronger.
Speaker 2 (21:06):
It certainly does. And it also is a way that really,
you know, when you get that support, when you get
that education, and when you get those resources that you need,
even if it's before your you know, you really strongly
need them. You're going to be able to keep your
loved one in your home for a lot longer or
in their home where they want to be for a
lot longer.
Speaker 1 (21:23):
So Erica, just quickly, what are some of the signs
people should be looking for? And we try to do
this theme in our office and I'll talk about it
more as we go through the show. It's the holiday season.
Families get together for Thanksgiving, families get together for Christmas,
for Hanukkah. You come together and you see, oh, jeez,
(21:43):
you mom isn't balancing her checkbook the same way she
used to do. She's having a little trouble writing checks.
What are some of the things that families should be
looking for in this holiday season?
Speaker 2 (21:54):
Yeah, I think it's a great time to be on
the lookout and you know, talk about some of these things. So,
first of all, if you go on our website again
alz dot org and just search ten warning signs of Alzheimer's,
there's a ton of information there. We want people to
know that there is some just normal age related memory
changes that happen, and that's okay, it's going to happen
(22:15):
to all of us. But then there are more concerning ones.
And it's not just about memory. So short term memory
loss that would be, you know, an obvious one and
you know, really a big, big warning sign there. But
also problems in you know, judgment reasoning, ability to solve problems.
Personality changes could be one. We even see some issues
(22:38):
with visual and spatial deficits. So what would appear to
be an eyehealth issue. Maybe all of a sudden there's
little dings and dents in a person's car, or they're
saying things to you, like they had a little fall
in the house and they slipped, or they missed the
bed or they missed the chair. Sometimes our brain starts
to misinterpret how our eyes are seeing things, and those
(22:58):
results are you know, are those things happen because of
what's happening in the brain. So not just memory. Personality,
as I said, judgment, reasoning, problem solving communication challenges would
be another big one. There are ten big ones. So
I would encourage people to take a look on our website.
Speaker 1 (23:15):
So alz dot org and go to the caregivers portion
of the website and get the ten warning signs for Alzheimer's.
And then the toughest question is, once you see these signs.
How do you get the person to accept help.
Speaker 2 (23:30):
Yeah, that's really tough. So one thing that we can
say is that, you know, maybe let's not relate this
to Alzheimer's disease right away. You might be thinking in
the back of your back of your mind, especially if
there is a family history, could this be. But you
might consider saying something like, you know, I noticed that
you're having a little bit more difficulty with X, Y
or Z. Next time we go to the doctor, why
(23:51):
don't we mention that to him and get that checked out.
You don't want to say, why don't we get you
to the doctor, I'm concerned you might have Alzheimer's disease,
because that's going to probably stop the conversation.
Speaker 1 (24:00):
That's going to shut it down.
Speaker 2 (24:01):
Yeah, yep, so gently, you know, you might want to
try pairing it with a fun outing, So going to
get some of these minor things check that just happen
to people as they age, and then going.
Speaker 4 (24:13):
Out to lunch.
Speaker 2 (24:13):
You don't have to have all of these things heart
difficult conversations on one day. Break them up, you know,
do it at a time when it's best for people,
both of you.
Speaker 1 (24:22):
And pulling the family together. Around. This is so important.
Speaker 2 (24:27):
Absolutely.
Speaker 1 (24:28):
You know, one child tends to be the bad child
and brings up the issues and talks honestly to the parent,
and then the others kind of ride their coattails, but
pulling together is crucial. We're going to take a short
break for the news. When we come back, we're going
to talk about technology, the new drugs that are out there,
and all the other things. Stay with us coming back
(24:49):
into life Happens Radio. Are you prepared? And today we're
talking about a very sensitive subject, but a very important one,
and the numbers are startling. The number of people who
have a diagnosis of dementia or maybe you're even undiagnosed,
and the number of people in ten years, twenty years,
thirty years that are going to have this diagnosis is incredible.
(25:10):
So we're talking today about resources and I just want
to give everyone a heads up at an opportunity to
join us. This coming Monday, November eighteenth. We have a
program that we do called Medicaid Mondays, and we're going
to get into the financing of this. How do you
pay for it, how do you get care that you
can afford, and then how do you pay for it
when you can't afford it any longer. That is Medicaid,
(25:33):
So we're going to talk about that. But on this Monday,
we're actually going to turn the page a little bit
and talk about hidden gems that keep you in your
home without Medicaid. And for that we have a very
special guest, Rebecca Privy, who's the executive director of the
Association on Aging in New York, and Becky is going
to talk about the Office for Aging resources that you
(25:54):
don't have to financially qualify. For some you do have
to pass an income test, but all of the other
things that you can access in your community without having
to go through that step of creating Medicaid eligibility. We
will talk about that in the second half of the show.
And if you want to learn about Medicaid, we've been
doing Medicaid Mondays now for two years. They're all broadcast
(26:17):
and on our website. They're thirty minute videos about every
aspect that you can think of about Medicaid and you
can access that at pyrolaw dot com. Frank Heming, Aaronconnor, myself,
and a number of very special guests have come in
to talk about the resources available through Medicaid. This Monday,
the eighteenth of November twelve to twelve thirty. You can
(26:38):
register on the website at pyrolaw dot com on the
events page and Becky Preview is going to go through
this with us and talk about all of the various aspects.
And Dan, you've had some work with Becky in a
pilot program that we can talk a little bit about.
But it's something where every arrow in the quiver needs
to be used, and the Alzheimer's Association and all of
(27:01):
these caregiver resources help pull all of those things together.
Speaker 2 (27:05):
Erica, absolutely, you want to make sure you're tapping into
what's out there, and we are fortunate in the Capital
District we do have a good number of resources available.
But for folks that are out in you know, some
surrounding territories, rural territories, some of these newer technological resources
could be really valuable to them. So using it again,
not something that you can do by yourself.
Speaker 1 (27:27):
And we're going to dive into the development. So let's
talk about two of the biggest developments, and one is treatments. Yeah,
what are the treatments that are currently out there on
the market. And we had, as I mentioned, Beth boven
As a good friend of mine and has been here
as a guest, and she's one of the experts in
this field and helps sen up Albany Medical Centers Alzheimer's
(27:47):
Clinic there. But what's on the market today, what are
the trials that are out there, and what's on the horizon.
Speaker 2 (27:54):
Yeah, so we truly are in an exciting time. I've
been in the field for about twenty four years now.
This is really the most hopeful I have ever been
that we are headed in a good direction here. So
currently now, there are two FDA treatments on the market
that are available. They are infusion treatments. They are both
anti ameloid therapies. So amyloid is a protein that builds
up in the brains of people with Alzheimer's disease, and
(28:17):
these anti amyloid therapies work to remove the amyloid from
the brain. So these drugs you probably have heard about them.
They are called lacanamab and denanamab and they're being marketed
as Lakembie and kissen La. So as I mentioned, they're
in fusion drugs. They're working to remove that amloid from
the brain and give people more time, more time to
function independently, more time with their families in a meaningful way.
(28:41):
So that's really exciting, you know.
Speaker 4 (28:43):
That.
Speaker 2 (28:44):
Being said, lots of other therapies in the clinical trial pipeline.
Now we know that there are so many different mechanisms
in play with the diagnosis of Alzheimer's disease. It's not
just about that build up of amyloid. There's another protein
that we know builds up with Alzheimer's and it's called
TAO protein. So we've got some TAU therapies and clinical trials.
(29:05):
We've got some drugs and clinical trials that are working
to reduce the inflammation and in people's brains with Alzheimer's disease,
because we know that that is a huge challenge. There
also drugs that are looking at cell death keeping the
cells healthier. So lots of different things, including some trials
for medications that are already approved right now for other conditions.
(29:28):
And you may have heard over the summer there was
a big news story that came out about the GLP
one weight loss drugs and how they have a potential
impact on brain health. And what they found was that
after a year of taking these drugs, there was a
significant improvement in a person's cognition in their scores. So
that's going to be a big topic this year. We're
(29:48):
going to certainly be investigating that more. But lots and
lots of exciting things coming down the pipeline.
Speaker 1 (29:54):
And I mentioned that my mom had Alzheimer's and I
use the alz dot org website religiously because they track
all of this research and they track all the drugs
on the market and the trials. And I found a drug.
This goes back almost twenty five years now. It's amazing,
but there was a drug that was on the market,
but not here. It was in trials here, but it
(30:14):
was improved in Europe and it was the leading Alzheimer's
drug in Europe. So I did my homework, I did
my research, and we were treating up in the University
of Southern Vermont with a physician there. They have an
wonderful Alzheimer's clinic there, doctor Paul Solomon. And doctor Solomon
you know, I said, what about this drug? And he
had my mom in a different trial. He said, well,
(30:36):
you can get that drug here, but you have to
go through this process. I said, oh, and it's not
a trial. We get the real thing. We don't have
a placebo. He said, yeah, and you know your mom
is pretty advanced right now, and this is where the
drug is having the most impact. And it was a
drug called memon Team, which is here marketed as an amenda.
(30:58):
And so I went through and I went on the
website and went to you know, the United States government website.
Can I do this legally? Yes, you have to get
a prescription. So we got a prescription. You have to
send the description to a pharmacy in Europe and we
found it for the Miherberg pharmacy in Germany, and I
sent the prescription and it was not cheap. It was
a very hefty cost. But I said, it's worth a shop,
(31:21):
you know, because at that point, if you're a family
member and a caregiver and you see your your loved one,
in this case, my mother going through this, you'll do
whatever you can do, absolutely turn that condition around. So
two days later, on my doorstep appears what was marketed
in Europe as Ebixa, but it was the mementine and
(31:42):
so we started giving it to my mom and she
had she was in a position where she couldn't use
a telephone, you know, she was I don't want to
put too much into it, but she was non functional
in so many ways. And then about two weeks later,
my sister got a phone call from my mother who
hadn't used the telephone in over a year, and it
(32:05):
started to turn her around. And we literally turned back
the hands of time for my mom for about a
year and a half. That's great using the nomenda, and
so I went bought stock in the company that sold
Amenda YEA. That was just an amazing revelation, but it
all eliminated from the alz dot org website.
Speaker 2 (32:26):
Yeah, and that's you know, just like in any other
condition and other diagnoses, clinical trials are the way that
we get these drugs to market. So prior to being
able to get the nomenda here, it had to go
through those rigorous trials and testing to make sure it
was safe, you know. And at the time that was
around twenty fourteen, I would guess, you know, the drugs
(32:46):
that we had for Alzheimer's disease, Nomenda, air acept, the
Excellent patch, those are still being used today. They're the cocktail,
the cocktail, right, they're not considered disease modifying drugs. They
help with the symptoms and some people they help them
to be a little bit more clear, function a little
bit more independently. But it's helping the symptoms, it's not
(33:06):
removing the amyloid from the brain like these current drugs
that are considered disease modifying. So we've come a long way.
Speaker 1 (33:12):
Great point, and the TAO is where they're looking to
go to next.
Speaker 2 (33:15):
Yep, how anti TAO therapies are in trial right now
and are looking very promising. So lots of exciting things.
Speaker 1 (33:23):
So how do people support this? And I do support it?
There are walks. I think it's Alzheimer's Awareness Month.
Speaker 4 (33:29):
Yes, so it is.
Speaker 2 (33:30):
It's Alzheimer's Awareness Month. It's also National Alzheimer's Caregiver Months.
So I'm glad that we're talking about caregiver resources today
and we just finished five of our walks here in
this Capital Region area. But there's still plenty of time
to donate. You can go on our websites alz dot org,
slash walk wa l K, you can look for the
walk that's nearest you, and you know you can still
(33:53):
donate that way. Our programs and services that we provide
every single day to help family caregivers, the search dollars
that we need to get those next treatments to the market.
Those come from donations and from the support of our
community members and like you, of course, people that have
been through it and want to see this disease, and
so plenty of ways to donate.
Speaker 1 (34:13):
So get involved. Folks, get involved, Join a caregiver support group,
join the Alzheimer's Association, become part of it. We were
able to organize a walk in Hudson, New York, and
it was my mom, the Geneva Piro Walk, and we
got a couple of physicians wh would come down and
do a lecture and then we would do a walk,
and then we had a nice reception and started to
(34:35):
raise money to the point where the Alzheimer's Association was
able to hire a staff person for Columbia and Green Counties,
because back when my mom had this disease, there was
no resource there. There was no person in Columbia Green
County that we could talk to. So now there is,
and so you can make a difference. Folks, get involved,
support the Alzheimer's Association. If you have this anywhere in
(34:56):
your family, you want these drugs to be developed quickly,
and I want them to be available for me in
my family because it's hereditary in my family, you know,
the one side has a lot of Helzheimer's in it.
Speaker 2 (35:10):
Absolutely, And if I could just make one more point
low when we talk about the medications, I find it
just as exciting to talk about where we are in
research with risk reduction, especially if you are a person
that has a family connection. We now know that there
are things that you can do, you know, positive modifications
to your lifestyle that are going to reduce your risk. Yep,
So I love talking about I could talk about it
(35:31):
for way too long. So I don't know that we
want to fully go down that road.
Speaker 3 (35:34):
But all right to.
Speaker 1 (35:36):
Flip it over to you, Diane, And again Diane is
the head of ever home Care Advisors and Viva Links.
You are a caregiver, you are a professional physical therapist,
You've been in home healthcare for many years, and so
how does this play out for you as a caregiver?
A little bit of personal but also how do you
(35:57):
get these resources into the home and how can people
utilize them?
Speaker 4 (36:02):
Sure? Well, the first thing that I'd like to say
is at ever.
Speaker 3 (36:06):
Home Care Advisors, we meet once a month with our
Columbia Green representative and our area representatives of the Alzheimer's
Association and also with another organization, just to make sure
that we know what resources are out there and we
have clients that we have in common. So communication is key,
(36:29):
So knowing what the resources are, knowing what the particular
situation is, and a point I'd like to make is
that every situation is completely different. Every situation is individual.
So it's great to share stories, but you have to
also always look at your own situation and see what's
important for you and your family member. So that's part
(36:52):
of the processes what is important, What are the resources
that you have, what are the resources that are available,
and let's go look for some of that aren't there
if that's necessary as well. We really become detectives in
the process and just supporting people and knowing that they
can always call us for help if it's technology that's
(37:13):
going to help at a certain point in time, and
things are going to change, things are going to.
Speaker 4 (37:17):
Progress, or things are going to improve.
Speaker 3 (37:19):
Hopefully we see more of that in the future, and
what you need may change as well, so being able
to adapt to the needs of the moment really important.
Speaker 1 (37:29):
So how does this then play out? For the carrier
and you are one am And how does Vivi links
your Viiva l y n X. How does that work
for caregivers and for the patient in the home.
Speaker 4 (37:44):
Sure?
Speaker 3 (37:44):
So, right now, our technology model is that there is
a device in the care recipient. We call the patient
or your loved one, the care recipient in their home
a communication device attack that becomes the hub, the wellness hub,
whatever you know. We're calling it each day and that's
(38:08):
where the person, when they're able, can check in, can
see photographs, can connect with their themselves. I will say,
in my mom's situation, even as she was progressing, she
was able to interact with this device in the home,
and what she really loved is looking at it and
seeing pictures of herself when she was young, seeing pictures
(38:32):
of my brother and I when we were young, of
her grandchildren, of her new great grandchildren.
Speaker 1 (38:38):
So talk about how that works because the family can
be connected into that homebutely through the vivil links app.
And I know that you can post pictures, family members
can post pictures, you can put videos of the grandkids
on there. But as people progress in their dementia, very
often they're relating to people from the past. And I
(38:58):
know when you're in an assisted living facility, a lot
of times they'll have at the entrance to the room
those old photographs so people can relate back. How do
you do that with this tablet and with the other
devices in the home.
Speaker 3 (39:11):
Sure, so there's the in home device which I mentioned,
but then the caregiver, which would be me in this situation.
I have an app on my phone that connects to
that in home device, and so I can handle schedule medications,
I can get pictures. When my niece, my parents' granddaughter,
had a baby in Florida, we had pictures of that
(39:35):
great grandchild on that tablet that day, and my mother
might not have really understood who it was, but she
knew it made her happy and it made her smile.
And that's what I always appreciated about those things. And
it was also a connection to who she was. It
was a connection to her identity. So we're looking at
(39:55):
what her schedule is, what my dad's schedule was, because
he's there as her caregiver and just trying to keep
on top of everything. So that we're using our resources.
And for myself, I went to work every day. It
allowed me to go to work, and if it was,
you know, I had a few moments, I could pop
(40:18):
in and I could give my mom a call, I
could talk with her, my dad could continue doing what
he was doing, escalating right up to having door sensors, cameras,
motion sensors in the home to help monitor what's going
on and help see trends, to plan for what you're
(40:38):
going to do.
Speaker 1 (40:38):
Sure, and when you're at home, a lot of healthcare
is now being pushed into the home, so more treatments
in the home, telemedicine in the home, but an ability
to monitor and diagnose things that are happening, fall risk,
fall detection, laundering risks, Putting motion sensors or door sensors
in knowing when someone's in bed, when they're out of bed,
(41:00):
when they're out of bed for too long, when they're
in the chair. All of those things can be done
and monitored. And then how many people could be on
the app in terms of the children and the people
that are part of that responsible family group.
Speaker 3 (41:15):
Sure, I always use this example to hopefully make people laught,
But if you have nineteen or twenty kids, nineteen or
twenty kids could beyond the app. It's limitless really yeah,
and connect all of them and caregivers connect paid caregivers,
you can connect unpaid caregivers. It's again part of the
plan that we develop who needs to be connected and
(41:38):
who is going to need this information and can use
this information?
Speaker 1 (41:42):
So how is it? What is the relationship between ever
home Care Advisors and the people there and then the
Viva Links technology.
Speaker 3 (41:51):
Sure, while we work hand in hand, the ever Home
Care advisors, care coordinators and staff are also the staff
of Viva Links and help to monitor the technology. We
determine what exactly the client needs, whether they need the
monitoring in the home, who is going to get the monitoring,
(42:13):
how much information? Each setup is a little bit different
and can be customized because I said before, each situation
is different. As we know, things change over time. My
mom was mobile and pretty functional when we started this journey,
and as that changed, we increase the interventions and how
(42:37):
we were using the technology as well. It doesn't have
to necessarily change. It's the technology itself, but how you're
using it, whether you need to get alerts or whether
you're just going to look at the information to determine
uh oh, now Mom's getting up five or six times
a night when it used to only be twice a night.
Or from a safety perspective, we talked about safety door
(43:00):
sensor on the front door. That front door opens. In
my mind, that was an unusual situation. Did Mom open
the door and let somebody in, or did somebody who
we've told a hundred times to use the back door
use the front door. But you know, I always say
that we're acting based on information, and that's what the
technology is giving us, this information to help us make
(43:23):
informed decisions.
Speaker 1 (43:24):
So it sounds like kind of a triangle. You've got
a care coordinator with ever home. You've got the family members,
and then you have the patient at home, all connected
by the devices in the app.
Speaker 3 (43:35):
Absolutely and my mom. In my mom's case, I was
able to interact with her caregivers. She was eventually on hospice,
and I was able to interact with her hospice caregivers
from my office or from my home if I happened
to be at home, if something was going on, I
(43:56):
could speak with them, I could see their interaction. And
then the care coordinators keep in touch and can reassess
the situation and help is it time to.
Speaker 4 (44:07):
Pull in this this resource or do we need to get.
Speaker 3 (44:09):
More Do we need more financial help in that situation?
We kind of look at things holistically there.
Speaker 1 (44:17):
How can people reach you, Dan and ever.
Speaker 3 (44:19):
Home Everhome Ever Homecare dot Com is our website and
our phone number is oh this to me all the
time eight four four six three three three eight five
two eight four four six three three three eight five
two Ever Homecare Advisors and for information about Viva Links
Viva links dot com, vi I v A L y
(44:41):
n X dot com.
Speaker 1 (44:42):
Gret. We're gonna take one more short break. When we
come back, we're going to talk about money and how
expensive this care is and how you can prepare and
plan for that. You're listening to Life Happens Radio here
on Talk Radio WGY. We'll be right back. I'm Loupiro,
your host for this morning here at Life Happens Radio.
(45:02):
I'm in studio with Erica Salambida of the New York
State Coalition of Alzheimer's Association Chapters, and Diane Mikel Gottabiowski,
the vice president of Client Services at Ever Home Care Advisors.
And this show, folks, we're talking about resources. Great resources
here with the Alzheimer's Association, Local resources here with Ever
(45:25):
home care advisors. But technology, new therapies, new drug treatments.
The game is the same, but the rules are changing.
And so we have an ability now to get treatment sooner,
to look at people who are developing the disease now,
but who may in the future develop the disease. And
(45:45):
as you were talking about Erica, things we can do
who are in the change. Some point it's going to
come into our lives directly. People can start preparing for
that now, yep.
Speaker 2 (45:56):
Start preparing for that, you know. And generally we say,
if it's good for your art, it's good for your brain.
So adapting some healthy lifestyle habits, making sure you're keeping
your numbers, you know, cholesterol, blood pressure, blood sugar, all
of those things within normal limits are certainly gonna.
Speaker 4 (46:12):
Go a long way.
Speaker 1 (46:13):
And avoid stress.
Speaker 2 (46:14):
Avoid stress.
Speaker 1 (46:15):
Yeah, I haven't been able to figure that one out yet.
And tend from the everhome and Feovilenks perspective, you know
that the financing streams, and I'm going to talk about
medicaid very briefly, but the financing streams haven't really caught
up with the innovations in many respects, right.
Speaker 3 (46:32):
So one of the things that our care coordinators can
can help you with is looking at the financial situation
and what resources are available to you, and sometimes exploring
resources that you weren't aware that you were eligible for,
different different types of funding, looking at how to pay
for care. Are there grant is their grant funded care?
(46:55):
Things like that, So we're it's a full time job.
And I think that's the point I I wanted to
make that it's a full time job to care for someone,
and it's a full time.
Speaker 4 (47:05):
Job to search for resources.
Speaker 3 (47:06):
So when someone just says, oh, yes, here's a list
of resources, you know, I'm sure you can find something there.
Speaker 4 (47:13):
If you're working or if you're physically.
Speaker 3 (47:16):
Caring for someone, you have to find the time to
do that, and sometimes the only time you have is
ten o'clock at night when they're not available. So care
coordinators can help, and asking for help is difficult, as
I said, but they can take that a little bit
of that burden off you, gather and put that information
together and sit down with you and help you access
(47:38):
those resources, point you in the right direction.
Speaker 4 (47:41):
One person can't do it all.
Speaker 1 (47:42):
So this Monday, the eighteenth of November, we have Rebecca
Previey who is the executive director of the Association on
Aging in New York, to talk about non Medicaid services,
and we're going to cover gamut. So if you really
want to learn what you can do and how you
can access financial and other resources is through the aging
networks in your community. Listen in or watch in on
(48:05):
Monday at noon. It's a webinar thirty minutes and we'll
have it available to you. You can sign up right
now at pyrolaw dot com on the events tab. We
have also talked about Medicaid on Medicaid Monday, so if
you want to learn more about that, you can access
our prior shows and future shows through the same portal.
But Medicaid is a program that is means tested. We
(48:27):
talk about it a lot on this show. Pierre O'Connor
and Strauss is an elder law firm, so we are
deeply entrenched in the Medicaid process. And the sooner you
plan for Medicaid, the better. Just like planning for your
health planning to prevent the disease, you want to plan
to prevent financial ruin. Because the cost of care nursing
(48:50):
home care is up around two hundred thousand dollars a year.
If you need dementia assisted living, it's ten to twelve
thousand dollars a year just on the assisted living side.
And if you need to bring care into the home,
if you just crunch numbers and you go to a
home health agency and hire twenty four to seven care
for mom or dad, thirty five dollars an hour, twenty
(49:12):
four hours a day, three hundred and sixty five days
a year, it's about two hundred and sixty thousand dollars
a year. So Medicaid is the program you need to
look at. You need to access to defray the cost
of that care, and it becomes more and more complicated
every year because of the number of people who need
it and the dwindling budgets to pay for it. But
(49:33):
to get eligible for Medicaid, you can only keep about
thirty one thousand dollars of assets and you have limitations
on income. So when we do this as elder law attorneys,
we look at creating a trust called a Medicaid Asset
Protection Trust, where you can safeguard your assets in that trust.
We structure it as flexibly as the law will allow,
(49:54):
which is pretty good flexibility. If you need Medicaid home
care and that's what we're talking talking about here, staying
out of a facility, staying at home. How do you
marshal your resources to keep yourself at home. There is
something called a pool trust that allows you to keep
your income, the Medicaid Asset Protection Trust that allows for
(50:15):
asset protection. Today. We do not have any look back
period people have heard of five years. That's nursing home only.
You can access Medicaid home care today. You can set
this plan up, protect your assets, protect your income, and
qualify for Medicaid support. Diane, I want to thank you
for being here and Never Homecare Advisors and Viva Links
(50:36):
and Erica from the New York State Coalition of Alzheimer's
Association Chapters, thank you both. It's been a great show.
And this show will be available on Spotify. If you
have a friend who you think might be able to
use it and benefit from the information, you can find
it there. And Life Happens Radio and we'll be back
every week here on WGY. Thanks for listening.
Good morning everyone, Welcome to Life Happens Radio. I'm your
host Lupiro for this morning, and we have a very
important topic for all of you out there, because this
topic touches so many of our listeners and ultimately our
clients and our clients are of a pure O'Connor and Strauss.
That's our law firm based here in Albourne, New York,
but with offices around New York State, in Florida, New Jersey, Connecticut.
(00:24):
We do a state planning, elder law, special needs planning,
business succession planning. We do litigation like guardianship litigation, and
a state and trust litigation. So at our law firm,
many of our practice areas are touched by this next
topic because we have clients who come in, we have
families who come in, and of course the topic I'm
(00:46):
speaking of is dementia. What happens when you get that
diagnosis and what happens. It's a stunning diagnosis, especially early
stage Alzheimer's. Someone who gets diagnosis in their late fifties,
early sixties, people who are in their eighties nineties. I
heard a statistic very recently that of all people age
(01:10):
eighty five, almost half have some form of dementia. So
the longer you live, obviously, the more prevalent this becomes
in your age category. And it touches though not just
the person who gets that diagnosis, but everyone around them,
their entire family, their friends, the people that care for them,
(01:31):
that love them. It is a very much family disease.
And we have a couple of people here today who
are expert in the field who are going to help
us discuss, unravel and talk about how to deal with
the diagnosis of Alzheimer's or dementia and what it means
to the family and what resources are available, and of
(01:53):
course we'll touch on the latest research we have done
this year over year, we have had Beth Boven, the
director of the local Alzheimer's chapter, and today we have
another special guest, and that is Erica Salameda. I hope
I pronounce that right. And Erica is with the New
(02:14):
York State Coalition of Alzheimer's Association Chapters, and we'll talk
about that and what that is in just a moment.
But we also have a familiar guest with us, Diane
Mikkel Gottabiowski, who is with ever Home Care Advisors and
the name ever Home I think has carefully chosen, Diane,
because people want to be at home, and if you
(02:35):
do have dementia, how do you get the services into
the home, how do you prepare yourself for that, and
what kinds of services are available. So we have a
lot to cover in this hour, and we're going to
start right in with Erica talking about your organization. And
I'm not as familiar with the New York State Coalition
(02:56):
as I am with the Alzheimer's Association locally. I was
on the board there for six years. So tell us
a little bit about your organization and what it does.
Speaker 2 (03:03):
Thank you, Thanks so much, Loue for having me today.
So as you said, I'm Erica Salameda. I am the
director of Community Outreach for the New York State Alzheimer's
Association Coalition, and that is we are part of the
Alzheimer's Association. That is our coalition of our seven Alzheimer's
Association chapters across the state of New York. One of
those chapters is the Northeastern New York Chapter and I
(03:24):
work out of there primarily, but do work on behalf
of all seven of our chapters. We do cover all
sixty two counties in New York State and serve constituents
with you know, dementia and their family caregivers across the state.
Speaker 1 (03:38):
And it is such a family issue, and you're sitting
with two people here in studio who have experienced it
as family members. But tell us about that focus, because
we're going to talk about the research and what's going
on in the research side of this, because there have
been some breakthroughs, but it has been a really long
process to get to this, And tell us about how
(04:00):
families get impacted and what kinds of resources they should
be looking for.
Speaker 2 (04:03):
Absolutely, and I'm sorry to hear about your personal connections.
I too have one. Both of my grandmothers had Alzheimer's disease.
They both died with this disease. So it's near and
dear to my heart. And you know, it's definitely a
disease that impacts the entire family. It takes a huge
emotional and mental toll on a family, also a financial
toll on a family. This is a disease that can
(04:25):
be very long. On average, you know, a person lives
from four to eight years after diagnosis, but many of
them live for a long time. And I think the
longest person that I know of a family that I
helped with this disease had it for about twenty four
years start to finish. So that's a really long time
to watch your loved one experience all of these gradual
(04:46):
losses while at the same time have to figure out
how to increase the care needs as their care needs,
you know, increase along the journey. So lots to consider,
certainly a disease that's a little bit unique because as
you have such a sense of anticipatory grief that sometimes
you don't have with other diagnoses.
Speaker 1 (05:05):
Yeah, you mentioned the losses of the patient who has
the diagnosis, it's the losses of the caregiver are equally
dramatic and equally impactful because you're grieving but you don't
have a chance to You're losing someone day by day
and they're in front of you, changing into people that
(05:30):
you don't recognize and they don't recognize you, and that
sense of loss you never really cope with. I think
as someone who dies of a heart attack, you have
a very sudden event, you have an ability to grieve,
you have an ability to move forward. But when someone
else has Alzheimer's, that process and twenty four years is
(05:50):
a very long time. Our family's experience with my mom
Geneva was eight years, and Diane, I know that you
have family experience as well.
Speaker 3 (05:59):
Yes, the challenge of diagnosis and getting that diagnosis, and
then you know, just traveling with my mom through her
journey was about three to four years.
Speaker 4 (06:13):
But I'm sure that.
Speaker 3 (06:15):
Erica could talk about the role of diagnosis and when
it actually happens, the struggle to get the diagnosis, not
that you're looking for it and you want that stamp
of yes, you have Alzheimer's or yes, this is Alzheimer's.
Speaker 4 (06:31):
So you know, you talked.
Speaker 3 (06:32):
It's funny, Erica when you just said anticipatory grief. That's
exactly what I was writing on my notebook at the moment.
And I'm also learning about ambiguous grief, so there's a lot.
Speaker 4 (06:43):
That goes on there.
Speaker 3 (06:44):
And yeah, twenty four years, that stopped me when you
said that.
Speaker 1 (06:48):
And when you're going through it, you don't diagnose yourself
with anticipatory grief or any other type of You're just
trying to cope on a day to day basis and
deal with all the issues that you have to deal with,
finding care, you know, filling in all the voids in
aone's life, who is losing the ability to perform all
the vital functions. In many cases, it's the person who
(07:10):
has taken care of their family. My mom was our
rock and you know, the whole family when she was
going through her Alzheimer's trajectory. Our whole family just kind
of went with her and said, okay, so how do
we do all the things that she used to do?
And that's the family issue in dealing with this. Yeah.
Speaker 2 (07:29):
Absolutely, And I think you know, one thing that we
don't really talk about enough is, you know, the other
losses that the caregiver might experience outside of the losses
of having a loved one go through this disease, like
becoming isolated because they can't leave that person at home
alone anymore. Sometimes the loss of other important relationships and
(07:49):
friends as they start to kind of step away a
little bit. Maybe they're uncomfortable with the disease themselves, or
they don't know exactly how to help the person. But
there's a lot of other losses that go along for
just that caregiver.
Speaker 1 (08:01):
So yeah, I'm thinking about thousand anecdotes about my mom
right now, but one in particular, she had a group
of friends, one was her sister in law and other
friends and she was the only one of them that drove,
And so every Sunday they would look to her to
(08:22):
drive them to church, and unless they were telling her
where to turn and where to go, she would not
have been able to make it the church. But they
were using her to get the church and be their ride.
And then lo and behold. You know, we left the
car for her for a period of time and I
got a call from the police department in East green
(08:43):
Bush and my mom lived in Hudson, so that's about
a thirty minute drive to East green Bush and they said, well,
your mom, you know she's here. She's kind of not
knowing where she's going. Oh yeah, why is she there? Well,
she was going to the supermarket, which is right around
the corner from her house, and she ended up thirty
minutes away. So we had to figure out a way
(09:03):
to deal with the cars. It's one of the many
issues that families deal with. And Diane, you you have
dealt with this in your own family with your own
mother and all the issues that Erica was just talking about.
How do you fill in those gaps voids and make
sure that someone is safe at home where they absolutely
want to be.
Speaker 3 (09:25):
So as we were starting to navigate this journey, I
just for your information, I'm a physical therapist and have
worked in the healthcare profession for many, many years. And
working in the healthcare profession, you think you know all
the resources, or you think you're supposed to know all
the and just.
Speaker 1 (09:44):
To put a little color on that, you worked in
a home health agency correct for twelve years doing home
health care right.
Speaker 3 (09:51):
And I worked in skilled nursing and I have been
the professional on the team with many many Alzheimer patients.
Speaker 4 (10:00):
So my message right now is whether you're a doctor,
a lawyer.
Speaker 3 (10:07):
A nurse, a physical therapist, anybody who's a medical professional,
just because you're a medical professional doesn't mean that when
this might happen to you, you have to know all
the information and you have to be the expert and
be the person in charge.
Speaker 1 (10:24):
Or the chair of the New York State Bar Association
Elder Law section, which I was when my mom got diagnosed,
and I had every resource I thought available.
Speaker 3 (10:33):
To me, right, so I stumbled upon quite literally this
company called ever Home, and I was not looking at
it from a personal perspective. I was looking at it
from a resource perspective in my current my role when
I was with the home care agency, so I started
exploring it and my eyes just opened wider and wider,
(10:55):
and I said, I have to learn more about this.
And well fast forward to today, I'm part of ever
Home and helping people find those resources and get the
help they need.
Speaker 1 (11:08):
So the resources eric are so important and the coalition
works with all of the different Alzheimer's associations to help
marshal those resources. So what are some of the things
that are being done in the field and how can
families work and access the help that they need.
Speaker 2 (11:26):
Absolutely, so, you know, Diane, thanks for sharing a little
bit about your story too, and you too, Lou as well.
Really important for families to understand. You know, even if
you are a professional in this field, you can't do
this alone. You cannot do this alone. As we said,
this could be a long journey. Many times it is
and there are just a lot of ups and downs
along the way. So you know, with any diagnosis, when
(11:48):
you get that diagnosis, we want you to get some
disease education first and foremost, and oftentimes that does not
happen in the physician's office. They don't have time to
do that.
Speaker 1 (12:00):
It's the last place you're going to get counsel.
Speaker 2 (12:01):
Yeah, and we understand that, so you know, we work
with physicians to make sure that they make that referral
to the Alzheimer's Association. But if they don't, we want
families to call us. We're going to sit down. We'll
offer you a free care consultation. We'll figure out where
you are in this process, where you are in the
diagnostic process, how many years this has been going on for,
and then you know what you need as a caregiver
(12:23):
and what your loved one needs. And then we'll start
connecting you to local community resources that can.
Speaker 4 (12:29):
Help you along the way.
Speaker 2 (12:31):
It might be a connection to Everholme. It might be
a connection to Pier O'Connor and Strauss for some legal
and financial planning. It might be a referral back to
our own organization for disease education classes, how to manage
difficult behavioral challenges that pop up, or how to communicate
effectively with your loved one. It might be attending a
(12:52):
support group or finding those resources where you can get
on demand and online support when you need it. The
best way I can tell families to figure out how
to connect with their local chapters by calling our twenty
four to seven helpline and that number is one eight
hundred two seven two thirty nine hundred. You can call.
(13:13):
There's a master's level clinician that will answer the phone
and answer your questions, and then you're going to get
a connection to your local chapter and they will be
able to help you with where you are right now
and what resources you might want to tap into.
Speaker 1 (13:25):
And if you didn't get to write that down, we'll
come back and we'll give out all of that information again.
There's also a great website and you can access the
Alzheimer's Association through that website. It takes a little more
time now to get in because they have a lot
of other stuff on there. Wow, So how do people
drill in and find these resources? It's a simple website
to find, but once you get in.
Speaker 2 (13:46):
There, once you get in there, yes, so thank you.
Our website is very robust, lots and lots of information
in there. So alz dot org. All's dot org is
our website. You can go in and there are all
sorts of different sections under standing Alzheimer's and dementia, understanding
the resources of the Alzheimer's Association caregiver Support, and that's
(14:07):
generally where people start, is the caregiver Support section. When
you open that up, you're going to find all sorts
of educational information, but also something that we have that's
called our Community Resource Finder, where if you're looking for
an elder law attorney, an assisted living community that has
a memory care neighborhood, a home care agency, you can
(14:27):
put in what you're looking for in your zip code
and it's going.
Speaker 4 (14:30):
To give you those resources.
Speaker 2 (14:31):
So alz dot org go to the caregiver section first,
but we've also you know, we've talked just briefly about
some safety circumstances today, and that's a real big concern
with this disease. There's a great safety section on the
website as well, and.
Speaker 1 (14:45):
We're going to talk about that right after this short
break when we come back. We'll get into the safety issue.
How do you keep someone safe at home? How does
technology day and play a role in that, What is
the current drug trials and treatments, and what are the
new treatment that are out the infusion therapies that are
out on the market today, and then how do you
manage this from a financial perspective because the cost of
(15:09):
caring for someone with Alzheimer's disease can be astronomical. So
stay tuned, stay with us. This is a great show.
Don't go away. I'm Lupierr, your host with this morning.
We are live in studio and I'll open up the
phone lines shortly and we're going to be right back
after this short break. Today's show is not an easy
(15:30):
show to think about. It's not anything that you expect
that's going to come into your life. But the name
of this show is life Happens. Are you prepared? And
we hope that today's show can help you prepare whether
you're in the midst of caregiving, whether you have a diagnosis,
or whether you're someone whose family may has a history
(15:52):
and a predilection towards the disease. And again, there are
many types of Alzheimer's and different dementias that can afflict people.
And Diane Mikkel Gottabiowski is the vice president of client
Services at ever Home Care Advisors and we are very
happy to have her here in a repeat visit. And
(16:14):
we have Erica Salamita of the New York State Coalition
of Alzheimer's Association chapters. So we have the Alzheimer's Association,
we have a private concern that provides care and services
to individuals going through this. And I'm going to open
up the phone lines if you have questions, if you
are a caregiver, if you have questions on the disease,
(16:35):
the treatments, We're going to get into those in the
second half of the show. Eight hundred talk WGY give
us a call. Eight hundred eight two five five nine
four nine again eight hundred eight two five five nine
four nine And Diane, when we broke for the commercial,
we were talking about safety in the home, accessing care
(16:57):
and being able to manage, monitor and and coordinate care
in the home. And that's what you do, So talk
a little bit about that and the kinds of resources
that you bring to the home.
Speaker 3 (17:08):
Sure with ever home care advisors, we have life care coordinators,
so different types of professionals from nurses, social workers, occupational
physical therapists who go into the home and we start
with an assessment, and that assessment starts with what do
you need, what are you looking for? And safety is
a huge part of that assessment. Our recommendations can be varied.
(17:35):
We can refer you to other organizations. We can refer
you to one of our sister organizations also that has
technology to help keep people safe at home and connect
a caregiver and the loved one, which we can talk
about in a little more depth later if we want,
but it's using monitors and communication devices to help some
(18:00):
of those gaps and care when you can't be with
the person twenty four to seven, or there's just a
need to walk outside for a little while and get
a breath of fresh air, you're still connected to that
person and help to keep them safe in many many ways.
It could take the whole show to talk about it.
Speaker 1 (18:17):
Yeah, and just to kind of give people a little
lay of the land for this. A lot of people think, oh,
I'm going to call my state agency or some group
that's going to plug me into everything that I need.
But what's happening is there are all of these little
pockets of innovation that are occurring, and one of them
happens to be right here in the Capitol region and
(18:39):
that is the Everhome viv Links Company. And what's out
there in the field. This isn't something that you're going
to see out there that's going to be promoted it's
something you have to kind of search out, and people
call a lot of different phone numbers. There's advertising. You
call a place for mom, and you know when you
(19:00):
call a place for mom, it's a great service if
you're looking for assisted living facilities and they place people
in assisted living. But if the place mom wants isn't there,
it's home, that's not where you want to go. So
there are different avenues that people get pulled down. But
talk about Everholme's mission, what you do and how that
technology helped you care for your mom.
Speaker 3 (19:21):
Sure, I speak from personal experience, and when I started
my journey with Everholme and then Viva Links, I was
not ready to stop working and I was able to
continue to do that. So what we as I said,
we do an assessment and figure out what the needs are.
(19:43):
So I'll talk about my case where well, I'm a
physical therapist, I've been in healthcare for a long time,
I live close to my parents, I'm a strong person.
I don't need much help. Is where my mind was at,
and that's not an uncommon We talk to caregivers and
loved ones and clients themselves. We're doing okay, We're doing okay.
(20:06):
We don't need help.
Speaker 1 (20:07):
Yeah, denial, tough denial, the denial, denial, denial, denial is
not a river in Egypt, It's in every household. And
people refuse the help from the Alzheimer's Oh, I'll call
them when I need them. Well, you need them now.
You need to prepare now, you need to access the
Alzheimer's Association now, and these resources early on you get
(20:29):
the best chance of success.
Speaker 3 (20:31):
One of our long standing clients, as a matter of fact,
I think client number one says, if you wait until
you're in a crisis.
Speaker 4 (20:40):
It's too late. It's too late.
Speaker 3 (20:42):
You need to start thinking about about just getting things
in order.
Speaker 4 (20:46):
And that means conversations.
Speaker 3 (20:47):
That go back years, well before you know a diagnosis
of Alzheimer's is even on the horizon. We should all
be having conversations, very honest conversations. So asking for help
is not a weakness. It's not a weakness at all.
As a matter of fact, I found it makes you stronger.
Speaker 2 (21:06):
It certainly does. And it also is a way that really,
you know, when you get that support, when you get
that education, and when you get those resources that you need,
even if it's before your you know, you really strongly
need them. You're going to be able to keep your
loved one in your home for a lot longer or
in their home where they want to be for a
lot longer.
Speaker 1 (21:23):
So Erica, just quickly, what are some of the signs
people should be looking for? And we try to do
this theme in our office and I'll talk about it
more as we go through the show. It's the holiday season.
Families get together for Thanksgiving, families get together for Christmas,
for Hanukkah. You come together and you see, oh, jeez,
(21:43):
you mom isn't balancing her checkbook the same way she
used to do. She's having a little trouble writing checks.
What are some of the things that families should be
looking for in this holiday season?
Speaker 2 (21:54):
Yeah, I think it's a great time to be on
the lookout and you know, talk about some of these things. So,
first of all, if you go on our website again
alz dot org and just search ten warning signs of Alzheimer's,
there's a ton of information there. We want people to
know that there is some just normal age related memory
changes that happen, and that's okay, it's going to happen
(22:15):
to all of us. But then there are more concerning ones.
And it's not just about memory. So short term memory
loss that would be, you know, an obvious one and
you know, really a big, big warning sign there. But
also problems in you know, judgment reasoning, ability to solve problems.
Personality changes could be one. We even see some issues
(22:38):
with visual and spatial deficits. So what would appear to
be an eyehealth issue. Maybe all of a sudden there's
little dings and dents in a person's car, or they're
saying things to you, like they had a little fall
in the house and they slipped, or they missed the
bed or they missed the chair. Sometimes our brain starts
to misinterpret how our eyes are seeing things, and those
(22:58):
results are you know, are those things happen because of
what's happening in the brain. So not just memory. Personality,
as I said, judgment, reasoning, problem solving communication challenges would
be another big one. There are ten big ones. So
I would encourage people to take a look on our website.
Speaker 1 (23:15):
So alz dot org and go to the caregivers portion
of the website and get the ten warning signs for Alzheimer's.
And then the toughest question is, once you see these signs.
How do you get the person to accept help.
Speaker 2 (23:30):
Yeah, that's really tough. So one thing that we can
say is that, you know, maybe let's not relate this
to Alzheimer's disease right away. You might be thinking in
the back of your back of your mind, especially if
there is a family history, could this be. But you
might consider saying something like, you know, I noticed that
you're having a little bit more difficulty with X, Y
or Z. Next time we go to the doctor, why
(23:51):
don't we mention that to him and get that checked out.
You don't want to say, why don't we get you
to the doctor, I'm concerned you might have Alzheimer's disease,
because that's going to probably stop the conversation.
Speaker 1 (24:00):
That's going to shut it down.
Speaker 2 (24:01):
Yeah, yep, so gently, you know, you might want to
try pairing it with a fun outing, So going to
get some of these minor things check that just happen
to people as they age, and then going.
Speaker 4 (24:13):
Out to lunch.
Speaker 2 (24:13):
You don't have to have all of these things heart
difficult conversations on one day. Break them up, you know,
do it at a time when it's best for people,
both of you.
Speaker 1 (24:22):
And pulling the family together. Around. This is so important.
Speaker 2 (24:27):
Absolutely.
Speaker 1 (24:28):
You know, one child tends to be the bad child
and brings up the issues and talks honestly to the parent,
and then the others kind of ride their coattails, but
pulling together is crucial. We're going to take a short
break for the news. When we come back, we're going
to talk about technology, the new drugs that are out there,
and all the other things. Stay with us coming back
(24:49):
into life Happens Radio. Are you prepared? And today we're
talking about a very sensitive subject, but a very important one,
and the numbers are startling. The number of people who
have a diagnosis of dementia or maybe you're even undiagnosed,
and the number of people in ten years, twenty years,
thirty years that are going to have this diagnosis is incredible.
(25:10):
So we're talking today about resources and I just want
to give everyone a heads up at an opportunity to
join us. This coming Monday, November eighteenth. We have a
program that we do called Medicaid Mondays, and we're going
to get into the financing of this. How do you
pay for it, how do you get care that you
can afford, and then how do you pay for it
when you can't afford it any longer. That is Medicaid,
(25:33):
So we're going to talk about that. But on this Monday,
we're actually going to turn the page a little bit
and talk about hidden gems that keep you in your
home without Medicaid. And for that we have a very
special guest, Rebecca Privy, who's the executive director of the
Association on Aging in New York, and Becky is going
to talk about the Office for Aging resources that you
(25:54):
don't have to financially qualify. For some you do have
to pass an income test, but all of the other
things that you can access in your community without having
to go through that step of creating Medicaid eligibility. We
will talk about that in the second half of the show.
And if you want to learn about Medicaid, we've been
doing Medicaid Mondays now for two years. They're all broadcast
(26:17):
and on our website. They're thirty minute videos about every
aspect that you can think of about Medicaid and you
can access that at pyrolaw dot com. Frank Heming, Aaronconnor, myself,
and a number of very special guests have come in
to talk about the resources available through Medicaid. This Monday,
the eighteenth of November twelve to twelve thirty. You can
(26:38):
register on the website at pyrolaw dot com on the
events page and Becky Preview is going to go through
this with us and talk about all of the various aspects.
And Dan, you've had some work with Becky in a
pilot program that we can talk a little bit about.
But it's something where every arrow in the quiver needs
to be used, and the Alzheimer's Association and all of
(27:01):
these caregiver resources help pull all of those things together.
Speaker 2 (27:05):
Erica, absolutely, you want to make sure you're tapping into
what's out there, and we are fortunate in the Capital
District we do have a good number of resources available.
But for folks that are out in you know, some
surrounding territories, rural territories, some of these newer technological resources
could be really valuable to them. So using it again,
not something that you can do by yourself.
Speaker 1 (27:27):
And we're going to dive into the development. So let's
talk about two of the biggest developments, and one is treatments. Yeah,
what are the treatments that are currently out there on
the market. And we had, as I mentioned, Beth boven
As a good friend of mine and has been here
as a guest, and she's one of the experts in
this field and helps sen up Albany Medical Centers Alzheimer's
(27:47):
Clinic there. But what's on the market today, what are
the trials that are out there, and what's on the horizon.
Speaker 2 (27:54):
Yeah, so we truly are in an exciting time. I've
been in the field for about twenty four years now.
This is really the most hopeful I have ever been
that we are headed in a good direction here. So
currently now, there are two FDA treatments on the market
that are available. They are infusion treatments. They are both
anti ameloid therapies. So amyloid is a protein that builds
up in the brains of people with Alzheimer's disease, and
(28:17):
these anti amyloid therapies work to remove the amyloid from
the brain. So these drugs you probably have heard about them.
They are called lacanamab and denanamab and they're being marketed
as Lakembie and kissen La. So as I mentioned, they're
in fusion drugs. They're working to remove that amloid from
the brain and give people more time, more time to
function independently, more time with their families in a meaningful way.
(28:41):
So that's really exciting, you know.
Speaker 4 (28:43):
That.
Speaker 2 (28:44):
Being said, lots of other therapies in the clinical trial pipeline.
Now we know that there are so many different mechanisms
in play with the diagnosis of Alzheimer's disease. It's not
just about that build up of amyloid. There's another protein
that we know builds up with Alzheimer's and it's called
TAO protein. So we've got some TAU therapies and clinical trials.
(29:05):
We've got some drugs and clinical trials that are working
to reduce the inflammation and in people's brains with Alzheimer's disease,
because we know that that is a huge challenge. There
also drugs that are looking at cell death keeping the
cells healthier. So lots of different things, including some trials
for medications that are already approved right now for other conditions.
(29:28):
And you may have heard over the summer there was
a big news story that came out about the GLP
one weight loss drugs and how they have a potential
impact on brain health. And what they found was that
after a year of taking these drugs, there was a
significant improvement in a person's cognition in their scores. So
that's going to be a big topic this year. We're
(29:48):
going to certainly be investigating that more. But lots and
lots of exciting things coming down the pipeline.
Speaker 1 (29:54):
And I mentioned that my mom had Alzheimer's and I
use the alz dot org website religiously because they track
all of this research and they track all the drugs
on the market and the trials. And I found a drug.
This goes back almost twenty five years now. It's amazing,
but there was a drug that was on the market,
but not here. It was in trials here, but it
(30:14):
was improved in Europe and it was the leading Alzheimer's
drug in Europe. So I did my homework, I did
my research, and we were treating up in the University
of Southern Vermont with a physician there. They have an
wonderful Alzheimer's clinic there, doctor Paul Solomon. And doctor Solomon
you know, I said, what about this drug? And he
had my mom in a different trial. He said, well,
(30:36):
you can get that drug here, but you have to
go through this process. I said, oh, and it's not
a trial. We get the real thing. We don't have
a placebo. He said, yeah, and you know your mom
is pretty advanced right now, and this is where the
drug is having the most impact. And it was a
drug called memon Team, which is here marketed as an amenda.
(30:58):
And so I went through and I went on the
website and went to you know, the United States government website.
Can I do this legally? Yes, you have to get
a prescription. So we got a prescription. You have to
send the description to a pharmacy in Europe and we
found it for the Miherberg pharmacy in Germany, and I
sent the prescription and it was not cheap. It was
a very hefty cost. But I said, it's worth a shop,
(31:21):
you know, because at that point, if you're a family
member and a caregiver and you see your your loved one,
in this case, my mother going through this, you'll do
whatever you can do, absolutely turn that condition around. So
two days later, on my doorstep appears what was marketed
in Europe as Ebixa, but it was the mementine and
(31:42):
so we started giving it to my mom and she
had she was in a position where she couldn't use
a telephone, you know, she was I don't want to
put too much into it, but she was non functional
in so many ways. And then about two weeks later,
my sister got a phone call from my mother who
hadn't used the telephone in over a year, and it
(32:05):
started to turn her around. And we literally turned back
the hands of time for my mom for about a
year and a half. That's great using the nomenda, and
so I went bought stock in the company that sold
Amenda YEA. That was just an amazing revelation, but it
all eliminated from the alz dot org website.
Speaker 2 (32:26):
Yeah, and that's you know, just like in any other
condition and other diagnoses, clinical trials are the way that
we get these drugs to market. So prior to being
able to get the nomenda here, it had to go
through those rigorous trials and testing to make sure it
was safe, you know. And at the time that was
around twenty fourteen, I would guess, you know, the drugs
(32:46):
that we had for Alzheimer's disease, Nomenda, air acept, the
Excellent patch, those are still being used today. They're the cocktail,
the cocktail, right, they're not considered disease modifying drugs. They
help with the symptoms and some people they help them
to be a little bit more clear, function a little
bit more independently. But it's helping the symptoms, it's not
(33:06):
removing the amyloid from the brain like these current drugs
that are considered disease modifying. So we've come a long way.
Speaker 1 (33:12):
Great point, and the TAO is where they're looking to
go to next.
Speaker 2 (33:15):
Yep, how anti TAO therapies are in trial right now
and are looking very promising. So lots of exciting things.
Speaker 1 (33:23):
So how do people support this? And I do support it?
There are walks. I think it's Alzheimer's Awareness Month.
Speaker 4 (33:29):
Yes, so it is.
Speaker 2 (33:30):
It's Alzheimer's Awareness Month. It's also National Alzheimer's Caregiver Months.
So I'm glad that we're talking about caregiver resources today
and we just finished five of our walks here in
this Capital Region area. But there's still plenty of time
to donate. You can go on our websites alz dot org,
slash walk wa l K, you can look for the
walk that's nearest you, and you know you can still
(33:53):
donate that way. Our programs and services that we provide
every single day to help family caregivers, the search dollars
that we need to get those next treatments to the market.
Those come from donations and from the support of our
community members and like you, of course, people that have
been through it and want to see this disease, and
so plenty of ways to donate.
Speaker 1 (34:13):
So get involved. Folks, get involved, Join a caregiver support group,
join the Alzheimer's Association, become part of it. We were
able to organize a walk in Hudson, New York, and
it was my mom, the Geneva Piro Walk, and we
got a couple of physicians wh would come down and
do a lecture and then we would do a walk,
and then we had a nice reception and started to
(34:35):
raise money to the point where the Alzheimer's Association was
able to hire a staff person for Columbia and Green Counties,
because back when my mom had this disease, there was
no resource there. There was no person in Columbia Green
County that we could talk to. So now there is,
and so you can make a difference. Folks, get involved,
support the Alzheimer's Association. If you have this anywhere in
(34:56):
your family, you want these drugs to be developed quickly,
and I want them to be available for me in
my family because it's hereditary in my family, you know,
the one side has a lot of Helzheimer's in it.
Speaker 2 (35:10):
Absolutely, And if I could just make one more point
low when we talk about the medications, I find it
just as exciting to talk about where we are in
research with risk reduction, especially if you are a person
that has a family connection. We now know that there
are things that you can do, you know, positive modifications
to your lifestyle that are going to reduce your risk. Yep,
So I love talking about I could talk about it
(35:31):
for way too long. So I don't know that we
want to fully go down that road.
Speaker 3 (35:34):
But all right to.
Speaker 1 (35:36):
Flip it over to you, Diane, And again Diane is
the head of ever home Care Advisors and Viva Links.
You are a caregiver, you are a professional physical therapist,
You've been in home healthcare for many years, and so
how does this play out for you as a caregiver?
A little bit of personal but also how do you
(35:57):
get these resources into the home and how can people
utilize them?
Speaker 4 (36:02):
Sure? Well, the first thing that I'd like to say
is at ever.
Speaker 3 (36:06):
Home Care Advisors, we meet once a month with our
Columbia Green representative and our area representatives of the Alzheimer's
Association and also with another organization, just to make sure
that we know what resources are out there and we
have clients that we have in common. So communication is key,
(36:29):
So knowing what the resources are, knowing what the particular
situation is, and a point I'd like to make is
that every situation is completely different. Every situation is individual.
So it's great to share stories, but you have to
also always look at your own situation and see what's
important for you and your family member. So that's part
(36:52):
of the processes what is important, What are the resources
that you have, what are the resources that are available,
and let's go look for some of that aren't there
if that's necessary as well. We really become detectives in
the process and just supporting people and knowing that they
can always call us for help if it's technology that's
(37:13):
going to help at a certain point in time, and
things are going to change, things are going to.
Speaker 4 (37:17):
Progress, or things are going to improve.
Speaker 3 (37:19):
Hopefully we see more of that in the future, and
what you need may change as well, so being able
to adapt to the needs of the moment really important.
Speaker 1 (37:29):
So how does this then play out? For the carrier
and you are one am And how does Vivi links
your Viiva l y n X. How does that work
for caregivers and for the patient in the home.
Speaker 4 (37:44):
Sure?
Speaker 3 (37:44):
So, right now, our technology model is that there is
a device in the care recipient. We call the patient
or your loved one, the care recipient in their home
a communication device attack that becomes the hub, the wellness hub,
whatever you know. We're calling it each day and that's
(38:08):
where the person, when they're able, can check in, can
see photographs, can connect with their themselves. I will say,
in my mom's situation, even as she was progressing, she
was able to interact with this device in the home,
and what she really loved is looking at it and
seeing pictures of herself when she was young, seeing pictures
(38:32):
of my brother and I when we were young, of
her grandchildren, of her new great grandchildren.
Speaker 1 (38:38):
So talk about how that works because the family can
be connected into that homebutely through the vivil links app.
And I know that you can post pictures, family members
can post pictures, you can put videos of the grandkids
on there. But as people progress in their dementia, very
often they're relating to people from the past. And I
(38:58):
know when you're in an assisted living facility, a lot
of times they'll have at the entrance to the room
those old photographs so people can relate back. How do
you do that with this tablet and with the other
devices in the home.
Speaker 3 (39:11):
Sure, so there's the in home device which I mentioned,
but then the caregiver, which would be me in this situation.
I have an app on my phone that connects to
that in home device, and so I can handle schedule medications,
I can get pictures. When my niece, my parents' granddaughter,
had a baby in Florida, we had pictures of that
(39:35):
great grandchild on that tablet that day, and my mother
might not have really understood who it was, but she
knew it made her happy and it made her smile.
And that's what I always appreciated about those things. And
it was also a connection to who she was. It
was a connection to her identity. So we're looking at
(39:55):
what her schedule is, what my dad's schedule was, because
he's there as her caregiver and just trying to keep
on top of everything. So that we're using our resources.
And for myself, I went to work every day. It
allowed me to go to work, and if it was,
you know, I had a few moments, I could pop
(40:18):
in and I could give my mom a call, I
could talk with her, my dad could continue doing what
he was doing, escalating right up to having door sensors, cameras,
motion sensors in the home to help monitor what's going
on and help see trends, to plan for what you're
(40:38):
going to do.
Speaker 1 (40:38):
Sure, and when you're at home, a lot of healthcare
is now being pushed into the home, so more treatments
in the home, telemedicine in the home, but an ability
to monitor and diagnose things that are happening, fall risk,
fall detection, laundering risks, Putting motion sensors or door sensors
in knowing when someone's in bed, when they're out of bed,
(41:00):
when they're out of bed for too long, when they're
in the chair. All of those things can be done
and monitored. And then how many people could be on
the app in terms of the children and the people
that are part of that responsible family group.
Speaker 3 (41:15):
Sure, I always use this example to hopefully make people laught,
But if you have nineteen or twenty kids, nineteen or
twenty kids could beyond the app. It's limitless really yeah,
and connect all of them and caregivers connect paid caregivers,
you can connect unpaid caregivers. It's again part of the
plan that we develop who needs to be connected and
(41:38):
who is going to need this information and can use
this information?
Speaker 1 (41:42):
So how is it? What is the relationship between ever
home Care Advisors and the people there and then the
Viva Links technology.
Speaker 3 (41:51):
Sure, while we work hand in hand, the ever Home
Care advisors, care coordinators and staff are also the staff
of Viva Links and help to monitor the technology. We
determine what exactly the client needs, whether they need the
monitoring in the home, who is going to get the monitoring,
(42:13):
how much information? Each setup is a little bit different
and can be customized because I said before, each situation
is different. As we know, things change over time. My
mom was mobile and pretty functional when we started this journey,
and as that changed, we increase the interventions and how
(42:37):
we were using the technology as well. It doesn't have
to necessarily change. It's the technology itself, but how you're
using it, whether you need to get alerts or whether
you're just going to look at the information to determine
uh oh, now Mom's getting up five or six times
a night when it used to only be twice a night.
Or from a safety perspective, we talked about safety door
(43:00):
sensor on the front door. That front door opens. In
my mind, that was an unusual situation. Did Mom open
the door and let somebody in, or did somebody who
we've told a hundred times to use the back door
use the front door. But you know, I always say
that we're acting based on information, and that's what the
technology is giving us, this information to help us make
(43:23):
informed decisions.
Speaker 1 (43:24):
So it sounds like kind of a triangle. You've got
a care coordinator with ever home. You've got the family members,
and then you have the patient at home, all connected
by the devices in the app.
Speaker 3 (43:35):
Absolutely and my mom. In my mom's case, I was
able to interact with her caregivers. She was eventually on hospice,
and I was able to interact with her hospice caregivers
from my office or from my home if I happened
to be at home, if something was going on, I
(43:56):
could speak with them, I could see their interaction. And
then the care coordinators keep in touch and can reassess
the situation and help is it time to.
Speaker 4 (44:07):
Pull in this this resource or do we need to get.
Speaker 3 (44:09):
More Do we need more financial help in that situation?
We kind of look at things holistically there.
Speaker 1 (44:17):
How can people reach you, Dan and ever.
Speaker 3 (44:19):
Home Everhome Ever Homecare dot Com is our website and
our phone number is oh this to me all the
time eight four four six three three three eight five
two eight four four six three three three eight five
two Ever Homecare Advisors and for information about Viva Links
Viva links dot com, vi I v A L y
(44:41):
n X dot com.
Speaker 1 (44:42):
Gret. We're gonna take one more short break. When we
come back, we're going to talk about money and how
expensive this care is and how you can prepare and
plan for that. You're listening to Life Happens Radio here
on Talk Radio WGY. We'll be right back. I'm Loupiro,
your host for this morning here at Life Happens Radio.
(45:02):
I'm in studio with Erica Salambida of the New York
State Coalition of Alzheimer's Association Chapters, and Diane Mikel Gottabiowski,
the vice president of Client Services at Ever Home Care Advisors.
And this show, folks, we're talking about resources. Great resources
here with the Alzheimer's Association, Local resources here with Ever
(45:25):
home care advisors. But technology, new therapies, new drug treatments.
The game is the same, but the rules are changing.
And so we have an ability now to get treatment sooner,
to look at people who are developing the disease now,
but who may in the future develop the disease. And
(45:45):
as you were talking about Erica, things we can do
who are in the change. Some point it's going to
come into our lives directly. People can start preparing for
that now, yep.
Speaker 2 (45:56):
Start preparing for that, you know. And generally we say,
if it's good for your art, it's good for your brain.
So adapting some healthy lifestyle habits, making sure you're keeping
your numbers, you know, cholesterol, blood pressure, blood sugar, all
of those things within normal limits are certainly gonna.
Speaker 4 (46:12):
Go a long way.
Speaker 1 (46:13):
And avoid stress.
Speaker 2 (46:14):
Avoid stress.
Speaker 1 (46:15):
Yeah, I haven't been able to figure that one out yet.
And tend from the everhome and Feovilenks perspective, you know
that the financing streams, and I'm going to talk about
medicaid very briefly, but the financing streams haven't really caught
up with the innovations in many respects, right.
Speaker 3 (46:32):
So one of the things that our care coordinators can
can help you with is looking at the financial situation
and what resources are available to you, and sometimes exploring
resources that you weren't aware that you were eligible for,
different different types of funding, looking at how to pay
for care. Are there grant is their grant funded care?
(46:55):
Things like that, So we're it's a full time job.
And I think that's the point I I wanted to
make that it's a full time job to care for someone,
and it's a full time.
Speaker 4 (47:05):
Job to search for resources.
Speaker 3 (47:06):
So when someone just says, oh, yes, here's a list
of resources, you know, I'm sure you can find something there.
Speaker 4 (47:13):
If you're working or if you're physically.
Speaker 3 (47:16):
Caring for someone, you have to find the time to
do that, and sometimes the only time you have is
ten o'clock at night when they're not available. So care
coordinators can help, and asking for help is difficult, as
I said, but they can take that a little bit
of that burden off you, gather and put that information
together and sit down with you and help you access
(47:38):
those resources, point you in the right direction.
Speaker 4 (47:41):
One person can't do it all.
Speaker 1 (47:42):
So this Monday, the eighteenth of November, we have Rebecca
Previey who is the executive director of the Association on
Aging in New York, to talk about non Medicaid services,
and we're going to cover gamut. So if you really
want to learn what you can do and how you
can access financial and other resources is through the aging
networks in your community. Listen in or watch in on
(48:05):
Monday at noon. It's a webinar thirty minutes and we'll
have it available to you. You can sign up right
now at pyrolaw dot com on the events tab. We
have also talked about Medicaid on Medicaid Monday, so if
you want to learn more about that, you can access
our prior shows and future shows through the same portal.
But Medicaid is a program that is means tested. We
(48:27):
talk about it a lot on this show. Pierre O'Connor
and Strauss is an elder law firm, so we are
deeply entrenched in the Medicaid process. And the sooner you
plan for Medicaid, the better. Just like planning for your
health planning to prevent the disease, you want to plan
to prevent financial ruin. Because the cost of care nursing
(48:50):
home care is up around two hundred thousand dollars a year.
If you need dementia assisted living, it's ten to twelve
thousand dollars a year just on the assisted living side.
And if you need to bring care into the home,
if you just crunch numbers and you go to a
home health agency and hire twenty four to seven care
for mom or dad, thirty five dollars an hour, twenty
(49:12):
four hours a day, three hundred and sixty five days
a year, it's about two hundred and sixty thousand dollars
a year. So Medicaid is the program you need to
look at. You need to access to defray the cost
of that care, and it becomes more and more complicated
every year because of the number of people who need
it and the dwindling budgets to pay for it. But
(49:33):
to get eligible for Medicaid, you can only keep about
thirty one thousand dollars of assets and you have limitations
on income. So when we do this as elder law attorneys,
we look at creating a trust called a Medicaid Asset
Protection Trust, where you can safeguard your assets in that trust.
We structure it as flexibly as the law will allow,
(49:54):
which is pretty good flexibility. If you need Medicaid home
care and that's what we're talking talking about here, staying
out of a facility, staying at home. How do you
marshal your resources to keep yourself at home. There is
something called a pool trust that allows you to keep
your income, the Medicaid Asset Protection Trust that allows for
(50:15):
asset protection. Today. We do not have any look back
period people have heard of five years. That's nursing home only.
You can access Medicaid home care today. You can set
this plan up, protect your assets, protect your income, and
qualify for Medicaid support. Diane, I want to thank you
for being here and Never Homecare Advisors and Viva Links
(50:36):
and Erica from the New York State Coalition of Alzheimer's
Association Chapters, thank you both. It's been a great show.
And this show will be available on Spotify. If you
have a friend who you think might be able to
use it and benefit from the information, you can find
it there. And Life Happens Radio and we'll be back
every week here on WGY. Thanks for listening.
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