(upbeat music)
Well, I wanna welcome everybody to our love ideas summit,
and we're gonna be having our caregiver conversation.
It's a great opportunity to spend time with people
that are experts in the caregiving space,
and that's a big issue that we're being impacted,
especially during COVID, and so I wanna do,
to invite you to be part of this conversation.
And I wanna introduce our panelists.
Of course myself as a Wayne Connell,
I'm the founder of invisible disabilities,
and I've been living this caregiving life
for almost 26 years, myself personally, and professionally
as the organization has been around almost 25 years.
We have Amy Goyer,
who is a AARP caregiving expert and columnist and an author.
Gary Barg he's the founder and editor
of Today's Caregiver magazine.
And P.K. Beville, who is the founder of Second Wind Dreams
and the Virtual Dementia Tour.
So I wanted to kinda reach out to each of you.
So Amy wants to share a little bit about your background
and so people can get to know who you are.
Well, I guess the most important thing is that I've been
a family caregiver my entire adult life
starting when I was about 20.
My parents moved to Arizona from Ohio,
where we lived and my grandparents were all in Indiana.
And so my parents were further away.
My mom's mom did pretty well, but, and we had,
I had cousins there.
I was sort of the respite person for her,
but my dad's parents, and my grandmother had Alzheimer's
and we, my dad was an only child.
So I spent a lot of time, long distance caregiving
for them in my twenties and early thirties,
driving six and a half hours.
Y'all know how that is.
Then my mom had a stroke when she was only 63.
And then over years after that,
my dad developed Alzheimer's.
So I moved to Washington DC to work with AARP,
and I was traveling back and forth
and about almost 11 years ago now,
I moved out here to Arizona where I am now to take care
of my parents because they both ended up
needing 24 hour care.
They lived in senior community for three years,
and then they moved in with me
and my mom passed away a year later.
And my dad stayed with me six more years here in the home.
He passed away just two years ago.
So I've had a lot of varying roles, as we all know,
there's a whole continuum of roles for caregivers.
I've also worked in the field.
I have a degree in music therapy and I started out working
in adult daycare centers and nursing homes.
And I worked for the Ohio Department of Aging,
worked for AARP full time,
And then when I needed that flexibility,
I became an independent consultant.
Great.
So P.K. tell us about your journey.
Well, first of all, thank you for, including me.
I feel like I've just gotten moved to the head of the class
by being amongst, such as being colleagues.
And my, I started serving geriatrics in 1983.
Back when chemical restraints, physical restraints, noise,
the smells were all over the place.
And I came to it,
I think in retrospect, at 67 years,
I came to it because I had polio as a child
and was paralyzed from my neck down.
And I know what it feels like to be ostracized.
I know what, how people look at you.
I get it, which is how I created the Virtual Dementia Tour,
because I felt like we as caregivers really can't understand
where our loved ones are coming from,
unless we've taken an opportunity to at least immerse
ourselves somewhat in their lifestyle, in their shoes.
So my work then after working in longterm care,
was used to do a psych assessment,
and it was the geriatric incomplete sentences test.
And I would ask the question,
finish this sentence with the way you feel.
I wish.
And the residents were saying some incredible things.
I wish I could go for a ride.
I wish I could go to the grave site of my wife.
I wish I could have a steak dinner
and that just blew me away.
Now I'm a little short on the intellect and it took me a few
years to finally realize that these are dreams for them.
For them that's a dream.
So I founded Second Wind Dreams in '97,
created the Virtual Dementia Tour as part of my doctoral
dissertation in 2002, and have just enjoyed every single
minute of it in my new emeritus CEO position.
Well thank you so much that's amazing.
So Beville,
You're definitely should be here on this panel,
I can tell you that.
I don't know about that.
Amy, I was also gonna say I too.
I am the caregiver for my father.
He's 93.
He lives with us.
He has vascular dementia and you're you're right.
You can take all the classes you want to,
but until you've done this by the seat of your pants,
it's really hard to articulate what needs to happen.
Yeah, I understand right.
So Gary, tell us a bit about you.
I'm Gary Barg.
Founder and editor in chief of Today's Caregiver magazine.
Author of three books on family caregiving as well,
the latest one being "You Are Not Alone"
which is about caregiving in the time of COVID.
One of the things that we do is also,
these Fearless Caregiver Conferences that we host in local
communities around the country.
And since 1998, we've hosted 287 of them.
Wow.
Unfortunately this year we've had to postpone
about six of them, but now we're taking everything virtual.
So in the fall, we'll have a lot of different virtual,
regional, Fearless Caregiver Conference,
which should be fun.
But one of the things I love the most
about the Fearless Caregiver Conference
was the advice, the wisdom, the support, the tips,
the techniques that other caregivers
have learned from their fellow caregivers.
Because we always hold the events in one room with
the experts being the caregivers, as well as the panelists,
the doctors, the lawyers,
the executive directors of our agency organizations.
But it's always the family caregiver who raises their hand
and says, "Here's how I figured this out."
That always has that piece of the puzzle that 50 of the 300
caregivers in the room have been desperately seeking.
So what we did was in the, "You Are Not Alone" book
we put together those tips over the last 20 years.
The advice, the support,
how a caregiver in New Haven 15 years ago told us
how she got her loved one to easily accept home care.
And we've shared that with family carriers over
the years at these events.
So, since that was missing,
we put all that in the book, and now we,
hopefully caregivers can have the kind of communication
and the kind of shared wisdom that they have
at the live events sitting in their living room easy chair.
My caregiving started in 1990.
My dad retired and developed a bone marrow cancer.
And mom became, chief caregiver,
everything that goes with that.
And immediately from being the fifth year of spouse,
love of life, business partner.
And I was living this,
I were in South Florida and I was living in Atlanta getting
set up to do work for the 96 Olympics, doing some videos.
And so I'd try to come in once every six weeks
or so for a weekend.
But you really can't tell you really never know what's going
on unless you're living through it.
So the summer of 94,
I heard in her voice a crack, I just heard something.
And I said, I gotta go figure something out,
go in for two weeks, I have some time help her out,
make some decisions and come back to my life in Atlanta.
Well the next time I went to Atlanta was
hosting a Fearless Caregiver Conference
because those two weeks were the most
painful dreadful, night and day life
and death decision spiral,
that I was living through with mom.
And right before I left,
I told her innocently,
I can't believe that I came in these two weeks,
look at what you were going through.
And she was dumbfounded because what was the worst
two weeks of my life was a normal two weeks
in the life of the caregiver.
So I came back to Florida and be a come a caregiver's
caregiver to help her as much as I can.
We started today's caregiver magazine and then caregiver.com
and then the conferences in the books.
And the reason I bring this up is because my caregivings
caregiving, was always in support of mom.
I always call myself a serial caregiver.
And so she was direct care with my dad, direct caregiver,
my grandparent father direct care with my grandmother.
And she was also, she's written in the magazine.
She comes to the conferences.
People just love having her there
she'll talk to caregivers forever.
And in June she had a stroke.
So now my sister, my brother and I,
are doing around the clock care, caring for her.
It's a direct caregiving as opposed to being a caregiver
in support of her.
And, the PK and Amy said is absolutely right.
This is the toughest, most loving job you'll ever take on.
And I, I've always respected
and admired and adored caregivers.
But never more than now that I'm doing
it full time around the clock.
Well, I can tell ya.
When I met my wife in 1992,
she was already diagnosed with primary progressive MS,
and in the same year Lyme disease.
So we got married, we thought,
"Oh, this is gonna be just a little journey
and it's gonna be gone and over with and stuff.
And, here we are almost 26 years later.
And even though I signed up for it,
we didn't know what that really meant signing up for,
being a full time caregiver, absolutely.
So, but what's amazing is, everybody that's
on this caregiver conversation has really taken
what they've learned personally and use it to help others.
Cause you find out that it's not just about ourselves,
that maybe as you mentioned,
the tips and the tricks and those things
can have an impact on the other people.
And that's what we wanna do is to provide that.
So I wanna jump into a few questions here.
And any of you can take the, this question,
it's the impact of social distancing
on the caregiver relationship, right?
I mean, we're in the middle of a pandemic.
How is that impacting that caregiver relationship
either personally or professionally?
I'll jump in and start,
and then you guys can jump in as well.
One of the biggest things that I'm seeing
is the relationship with the person they're caring for.
A lot of it depends on where that person is.
So if they're to have a loved one living
in a nursing facility or an assisted living,
or even independent living where they have
not been able to visit it.
It is impacting that relationship it's impacting how
they can advocate for their loved ones.
It's impacting everything about the personal caregiving
experience because so many of them are experiencing grief,
feelings of helplessness.
I mean it's hard enough to advocate for someone
who's in a facility and now you can't even go in there
and see what they're doing and making sure
they're getting care.
And also just taking care of those social needs
of their loved ones and that closeness.
Because many people aren't able to get on a video chat
device, or maybe some facilities,
aren't helping with solving that conversation on video chat.
So I think that's one aspect and then the other aspect
is if you're caring for someone at home,
you are really there with them.
There's no breaks.
There's no getting away.
I can remember when my dad was living with me,
and I did the weekends by myself and then I had helped
during the week so that I could work.
And my Monday morning when I went to work,
it was kind of a relief.
I mean that was my respite.
Work was my respite.
And now they can't, they're not getting that.
They're not getting anything that many of them
are not going to the grocery store even.
So you're just so in it all the time,
and that relationship is challenged.
Any relationship.
We're all kinda stuck with people right now.
And any relationship is challenged when you don't get breaks
and you don't have your usual coping mechanisms
and your weight, all of that.
So a lot of people's relationship with the person they care
for is really, high-strung right now.
Well I think about also the impact of COVID, right.
I mean, I know my wife has extremely high risk, right?
So I'm limiting my abilities to go out
and I do have to go to the grocery store, right.
Or pick up a food at restaurants to go and those things,
but having to take her to a doctor's appointment
and I had to take her to one RESA and they're all day
appointments or the, Ivy treatments and things like that.
And she pointed out, she was like,
"you're getting a break for me."
I mean, that's part of it right?
And it's true because,
I'm working from home and they say and so it's,
you're constantly in that contact and you,
that respite, which we all know caregivers
need dramatically that ability.
But because now we're so isolated in a lot of sense,
we're not getting that respite.
And sometimes, how do we,
what do we need to find out to make a difference right?
Even if it's a conversation with somebody on the phone
that gives you a break from something else,
or going for a walk.
I love to walk out I'm in the country
and I'll go for a walk, just to get away.
You're bringing up something
that I find interesting with families
and being one family caregiver,
we just don't do a very good job of reaching out
to other people for help.
Even during COVID.
To me if, they have on a mask they've been, COVID free,
and dad's obviously at very high risk.
I have lupus I'm at pretty high risk too,
but asking people to help us is something
our families just are not doing.
And haven't, that's been the case.
That's why some of this has been such the great,
horrible secret from people.
The stuff that we're dealing with is because
we haven't been vocal.
Heck yeah, can can't a neighbor,
go pick up the groceries and leave them at the door.
And when they do,
thank them and have a mask to mask six foot,
distance conversation.
We're just not taking advantage of what we need to,
and I will raise my hands and say, I'm just as guilty.
I finally asked my brother to come help who,
he's physically able to do that, but COVID was the excuse.
And we had to get down and dirty with each other.
What bumps I'm in here doing the laundry and taking him
to the telecom telehealth things, which by the way,
my other point I wanted to throw in here is dementia.
Throw on top of all of this,
those people who are living with dementia, Amy,
as you were talking about the longterm care environment,
the preponderance of the elders and people in there
are living with dementia of some type.
So let's, we have to kind of take a step back
and imagine what this looks like for them.
Now, 5.9 million people right now, who are in one
of the situations Amy was talking about,
And we've yet to take much time to look at this entire
situation from their perspective.
What do the masks look like?
What does the PPP PPP look like?
No E.
What does a person approaching you with a mask on
to ask you to do something, what does that look like?
That we have to really pass some of that out so
that we can make it at least somewhat positive
for the person with dementia and a very scary situation.
I believe that we're living in a new, normal.
Again, she coined the phrase,
the new normal, talking about once you step into caregiving,
well, caregiving and COVID is a new new normal.
You put that on top of everything.
And isolation is the killer and normal times for family
caregivers and for a loved one.
So now we're enhancing that.
And I think, PK was talking about tele-health,
we've been doing a lot of news.
Well, where we do a weekly news letter at Caregiver.com
that people could sign up for.
We don't do a lot of hands on tips about living
in the times of COVID.
How you communicate with your loved one,
how do you the best on results from a telehealth meeting?
Because there are risks and challenges there about
what the doctors can and can pick up and what,
I believe that the in person meetings are always better,
but we have to do what we have to do.
And the stress that comes from being alone,
another thing PK was talking about
was getting people to help.
We have something on Caregiver.com,
we call the reverse gift list.
We've had that all four years,
but we've updated it for coping and exactly that.
What are the bite-size easy manageable tasks that,
for you, you have to do 20 of them a day,
but if you can pass it out and say to your neighbor,
next time you go to the supermarket, here's a little list,
and maybe, you can get something free.
Next time you go to the drugstore,
here's a little list not overwhelming.
Your relatives wanna come by and do something,
sure, let them cook once a week
and bring the food to the door.
Or if you feel safe about having them come in,
and having them all massed and PPE it up, maybe you are,
you're lover would love to see them.
My mom adores her, obviously we're great grandkids.
And so we try to get them on FaceTime with her
at least three, four, five times a week.
And it parkles her up and it seems
to clarify things for her.
So the challenge that we have as caregivers and in regular
times with isolation has now been, exacerbated.
And it's something that we have to look at and deal with.
And if our loved ones living in a facility,
how to work with that facility,
maybe somebody in the facility is gonna be nice
and let you use their unit, their phone to FaceTime,
with your loved one.
There are obviously telechats and telehealths
that you can do, or if you're at home with your loved one,
you can get some help, you get some family members in
and just make sure they see other faces.
It's just really important to pay attention
to how intense a challenge this isolation is now
that we're all sheltering in place.
And you mentioned that we were talking about
not being able to get out.
One of the things that I'm hearing the most from caregivers
is if they were members of an in person support group,
that was their primary support,
and that just huge part of their caregiving experience.
And now they're not meeting in person.
And a lot of them have started doing virtual things,
phone calls, conference calls, video chat, zooms,
but some of them have not.
And so, I moderate AARP Facebook
Family Caregivers Discussion Group.
And we've got about,
I think about 3,500 people in there right now.
It's growing fast.
We've only been in existence for a year.
And with COVID it's just boomed.
Because everybody needs that support
and going online as one way to do it.
And they exactly, Gary, I still agree,
the isolation is, we know it's bad for our health.
It's the equivalent of smoking 15 cigarettes
a day to our health.
So, that goes back to your question,
what about, how is this affecting caregiver's health?
It, we don't even know yet the full extent
of what this pandemic is going to do
to people over the long term.
Right.
In fact, I think about that with the stress myself.
And I think about,
I'm stressed about going out stress about now not going out,
there's all these things that are impacting,
Oh yeah, you said you haven't been around anybody,
but I'm not so sure right?
It's and so, I mean,
it was interesting cause I was talking with,
my boss from, I do it as a volunteer,
and my day job and I,
I was talking to my boss and he's like,
so you really don't go anywhere, do you?
And I said, no, I really haven't.
I mean, I had to go to the dentist the other day
and it was like, I need to know everything, right.
Because I don't wanna take any chances whatsoever.
And so, but I know it's impacting my health.
I mean, my stress level has been through the roof.
but, and you talk about isolation.
I think isolation is the real, killer,
in this whole thing for everybody is,
and part of that isolation,
is that we forget when we're not a caregiver,
how important that touch is, and I would say,
we have forgotten the,
I know we talked about zoom and we talk about online, Oh,
I got have 500 Facebook friends or something like that.
Like, well, that's not,
it doesn't really help relationship wise per se.
But I think we forgot the old fashioned telephone
really to hear somebody's voice, just to call up and say,
I'm thinking about you, I'm thinking about your loved one,
and it's not, you what are you doing,
what are you not doing.
To where it's this, how can I solve the issue?
Because in most cases they're not gonna solve it.
I mean, they're not gonna solve dementia or depression
or whatever on their phone call,
but what they're gonna solve is, is like,
I care about you, can I do anything.
You mentioned earlier about going to the store.
This is something we talk about invisible disabilities.
Hey, I'm already going to the store,
can I pick you something up, right.
It's that, or I'm gonna call you every Tuesday
for 15 minutes and I'm just gonna say,
can I pray with you, can I find out what's going on,
can I just give you an encouraging word,
not I'm gonna fix what you're going through,
and I'm gonna want you to be positive
about everything that's going on.
It's like, well, it's not about that.
It's not about being positive.
It's going through difficult times and talking about it is
actually nice if people will listen, right?
The problem is they don't wanna listen right.
And I always say well,
the reason why the person who wants to keep telling you
is because you're not listening.
If you listen to 'em and validate the difficulties they're
going through, then they don't wanna talk about anymore.
They really wanna talk about what's going on in the world.
What's going on, you know, in the neighborhood.
What's, that's a big thing we've joined.
There's a thing called next door,
which is this online thing for your neighborhood.
Wow.
That has been amazing during this time.
People say I've got toilet paper extra,
does anybody need that?
Those things that are helpful, but they don't know.
As we mentioned earlier, they don't know that you need help.
They don't know that maybe you just need a break
for five minutes or an hour just to say,
Hey, can you just be available on foam while I run into town
in case something does happen where
they can reach out to you,
cause I know you can get there faster than I can.
So I think it's fantastic.
I'm a little concerned about the isolation.
The by-product of isolation is fear.
And I'm concerned that once this is over with,
we're gonna have a tough time getting our elderly
counterparts to go back out again.
I'm already having difficulty, even with dad who is,
some days are good and some days are bad
going out for a walk.
He's afraid that he might catch something.
And when people are isolated,
they have a tendency to expound in their mind,
what is actually going on.
And that then can turn into a true, almost paranoia.
And so as far as thinking about what this is going to do
or what some of the by-products are,
I'm very concerned about that.
Almost creating a PTSD kind of thing
with our elders, don't you?
Oh, absolutely.
I absolutely agree.
I think everyone, not just our elders.
It has a level of PTSD from this.
This has been a traumatic experience and we are not done.
No.
And I agree with you.
I think there's so many people who are,
my nephew has anxiety and depression
and he had difficulty going out of the home before this,
and now it's just magnified.
And I think he's gonna have a rough time,
once this is over.
I'm trying to go out more.
Yeah well,
this is gonna be the tough part about this is,
is really helping people understand that,
from an invisible disability standpoint,
people always ask what that is.
It's really the invisible nature of illness.
And now all of a sudden, okay COVID, that's invisible.
Anxiety, fear, depression, isolation,
all these things are happening to us.
And what I think we're gonna part of it,
we're gonna be soon to forget is
that these people that are isolated at home.
We're all feeling what they're feeling right now.
So we're kinda getting that,
it's kind of like the virtual dimension that you're talking
about PK it's like, we're all feeling it.
We're all kind of getting the idea of what it means to be
isolated and in fear and alone.
What my fear is that we walk away from this and we forget.
And those people that are now all of a sudden,
and there might be more of them as we're talking about this
now after this who are either impacted from a health
standpoint of the actual illness itself, getting COVID.
And they came out of it and survived,
or the, all the aspects of the relationship impacts,
which is why we're having
this whole relationship summit right?
That impact is gonna be dramatic.
Everybody at first thought, Oh, great.
We get to spend time with all our families.
We get to see our kids and everybody, next thing,
was like, Oh my goodness,
we're stuck with him for how many months right?
And that whole aspect.
But we wanna make sure that when we come out of this
and I wanna hear this from each of you guys,
what your organizations and your thought process as we move
from, as we start getting through this,
and we start moving to some
that new normal Gary's talking about,
what are you guys doing in his own organization as people
to say, how are we gonna do this
so we don't forget those people.
We don't forget the caregivers now that all of a sudden
weren't caregivers before, in some sense
that's happening too right.
Those or the people that are now still isolated
because of the fear as PK was talking about,
it's a lot longer time to figure out,
cause I'm even wrestling with that,
When am I gonna feel okay.
That's okay for me to spend more time out.
Good news is my day jobs allowing me to work
from home right now.
But there's,
they have people in the office there's gonna be a time
where it's like, "Hey, we need everybody to go back." Right.
So how's that impact is gonna help.
So you guys wanna tackle that one about what are you doing
as an organization and thinking about after this?
I think that's such an interesting point
because on one hand, the way that my brother sister and I
can actually have the 24 hour, oversight of my mom is that,
my sisters can work from home now as opposed to going to an
office and my brother and I have different, schedules.
So we've able to package that.
But you know, once that changes,
we have to be ready for that change.
Where do you pick up that coverage that you are able to do
because you're sitting at home?
I really believe that as we manage our loved ones,
medications and manage their therapeutic protocols
and their appointments and their doctor's appointments.
We also have to make sure that we have a weekly schedule
for social interaction.
Like I said, with my mom,
we don't miss three or four times a week getting her up
with her great grandkids or another three or four times
a week, getting up with her granddaughter who lives away
or having friends interact with her.
So, because you could let that go by if you're dealing with
the stress and the pain and the isolation and the intensity
of caregiving, when you, especially when,
you're sheltering in place, that is a medication protocol.
I think that is extremely important,
making sure that we stay,
however we can virtually telephonically short visits,
connected with the rest of the world as much as we can.
And that's gonna help when we transitioned back into,
I wouldn't say normal times,
but more regular times and more regular, regular schedules,
as opposed to just one moment where shelter in place,
next moment, everything is, is open,
and you have to make decisions from there.
I think you're exactly right when you have to start now
figuring out what your next steps are,
as things possibly open up as people are now being asked
to go back to work.
And that's part of what we do with Today's Caregiver
magazine with the Caregiver.com and we're doing what
the virtual conferences is making sure those conversations
on that advice, that support stays in the forefront.
We just did a where we're in the middle of doing a series
called caregiver conversations,
video interviews with experts.
We, the first one we had Lance Robertson.
The second one, we had Grace Whiting,
and at the same time take clips of the advice that we got
from family caregivers in the conferences over the years.
Cause we always videotape them and also offer them advice
and support and tools that they they would know about.
So these are like 15 minute video tapes that we've been
putting out weekly for the last handful of weeks.
Just to keep the connection just that people don't say,
where is everybody?
I don't, I'm now lost, I'm now isolated.
I'm now just caregiving, I can't get out.
There's no social groups,
there's no senior centers just now.
We have to do a weekend as caring organizations
to make sure that we keep those connections
as tenuous as they are being mostly,
in video or webinars or zoom chats or telephonically,
we have to make sure we plan that those connections
are made multiple times every week.
Because that's, breaking the isolation,
is a key element of keep our loved ones as safe,
and cognizant as they can be.
Great.
I'll just jump in, AARP really pivoted
and through resources and creativity
into addressing the pandemic and has created
a lot of great resources.
You can go to aarp.org/coronavirus
and kinda find everything there.
But one of the really amazing things that they did
was create a site called aarpcommunityconnections.org
And if you go there, it's a listing of mutual aid groups.
So these are people and many of them did not
exist before the pandemic.
And there are people who in their neighborhoods and in their
communities decided to band together and help each other.
And so it's a listing of these groups
and some advice about how to start one,
the things they offer so that you can go in there
and say, yeah,
I don't know a neighbor who can go to the grocery store
for me, but maybe there's a volunteer
who'd be willing to do that.
So that I'm sure will continue at post pandemic.
And I think it's gonna be needed a long time.
One of the really great parts of that AARP Community
Connections is a program
they created called friendly voices.
And it's a friendly phone call.
So you can sign your loved one up for a phone call.
You can sign yourself up for a phone call
and volunteers are trained
and they just give you a friendly call.
And it's people, we've had a huge response with volunteers
wanting to make the calls and so many people,
the isolation, it really has helped.
Again, that's another program I'm quite sure is going
to continue post pandemic, because it's needed anyway.
It's needed for people who are isolated and stuck at home,
and in older adults who live alone and that sort of thing,
those I think are really great.
The other thing is, what is post pandemic?
Is that really six years from now?
Like what is that?
We're gonna come to a point where hopefully
we'll have a vaccine and things will die down,
but it's not gonna be gone for quite a while.
So AARP can, we'll continue to have resources,
like we have a tracking tool so that you can check in every
state what the COVID cases are.
What the COVID cases in nursing homes are,
that are being reported they're not all reporting.
And then things like,
what are the current visitation laws in every state?
So you can, we have state maps, you click on that.
You can find all of that information.
And I think those are gonna be continue
to be useful to people.
And they're gonna need to continue
to have those resources.
And AARP really tries to create online content and videos
and tools that are in practical ways,
gonna help people through this.
One of the things that I've done a lot of talking about,
and I wrote a column for AARP is about how
to keep your loved ones engaged at home.
Like you've run out of ideas, right?
Like the things that you may be were doing,
taking them to the art museum,
doing different things you can't do.
So there's online virtual tours,
there's online experiences where somebody
teaches you something.
You can look at nature pictures, you can play games.
You can, there's just so much you can do.
So AARP is really trying to feed that information.
We have videos, exercise videos that caregivers can do
for themselves to take care of themselves
as well as with their loved ones.
So just trying to kind of wrap around the caregiver
and on our older members there, their whole,
every aspect of their life,
because the pandemic is affecting every aspect of our lives.
Thank you for that Amy,
because we're talking a lot and sharing with caregivers
a lot about what this post pandemic world would look like.
Is telehealth is gonna be the norm.
Is that a good thing?
Should you go to your doctor's office as opposed
to have somebody sit across from you, and be there live.
Are we creating a whole different moral coming out of this?
Or are we relatively speaking going back to the same thing?
And I don't have the answer for that,
but I've seen your tools on AARP dealing with this issue,
and I think they're terrific.
Yeah, we have, there's a whole section on telehealth now.
And I know AARP is advocating,
for that to be able to continue post pandemic,
because it is so helpful to so many family caregivers.
And I really am a big fan of mobile doctors
and mobile healthcare.
I had all the doctors coming to the house for my parents
and they got x-rays and swallow tests and ultrasounds
and EKG and everything at home.
And a lot of people don't even know that's available.
So that's another thing we're trying
to let people know about.
Yeah and that's one of the things
that invisible disabilities that we're really trying to do
is we're not trying to create the,
what you guys are doing already.
We wanna showcase what you're doing, right?
We have a thing called programs for people,
and it really is about, we wanna come alongside
all these great organizations say, look, what's out there,
look at these amazing things and point people
to it so that they can get those great resources.
What we're doing is a little bit different.
I think people wanna help deal with care,
help with caregiving and help with people's basic need
is to help others.
So when I found in Second Wind Dreams,
that's one of the principles I founded it on was knowing
that we could make dreams come true,
but it really would take the people around our elders
to make that happen.
So, and turns out people really do wanna help with that.
So our time has been spent finding more ways
for our volunteers to stay engaged with our elders.
So we have cards of light,
which is continuing to go on and will continue after
the pandemic where volunteers create cards.
We give them a list of the nursing homes to send them to
in packs of 25, the nursing homes so appreciated,
assisted living home health as well.
And hospice.
So cards of light has been huge.
Also for the Virtual Dementia Tour.
We have developed since empathic person centered care
is a big deal to us and walking in the shoes of other people
in order to really understand where they're coming from.
We developed a series of simulations of visual imagery,
that allows a person to kind of go through
what it feels like.
Like I mentioned earlier, when someone approaches you with
a mask on and asked you to do something,
what that feels like, what that looks like.
And so we have a package of those out there as well.
In addition to that, we've written a number of articles
that are on our websites, aarp.org
about COVID-19 and telehealth with regards
to dementia specifically.
Telehealth is a little harder for people with dementia.
They don't understand what all that means and what
those pictures are about and why they can't be where
they're supposed to be to talk the doctor.
In fact, I've heard of some family members having trouble
with their loved ones during tele-health because they don't
believe it's really the doctor.
And so they won't engage at all.
So there is that piece, that's, that's extremely difficult.
So we've written a number of articles on how to deal with
that and how to make it as comfortable as possible,
in this difficult time.
And I'm not a very good prognosticator.
I'm a kinda ready fire aim kind of girl.
And I do feel like though,
what we're dealing with right now will continue.
I have every thing that people want to do better.
People want the idea of being able to pitch in and help.
They just haven't known how, so we're continuing to make
dreams come true in all of the environments that we have.
We find out what the dream is.
We cut the check instead of having the volunteers go in,
or the volunteers bring the donations to the nursing home
or assisted living or home health.
And they make a big party out of it.
I think for a Second Wind Dreams,
this is just the beginning.
I think for the first time,
people are starting to realize that dreams are important
and dreams for elders,
doesn't look like dreams for you and me.
A dream may be as simple as a new belt
because their pants are falling down.
They can't go get the belt.
They don't have the money for the belt
and nobody's gonna bring it to them.
All of a sudden that's a dream.
So I think the pandemic, if anything, may help us shed
more light into what that really looks like.
No, I really appreciate that PK.
I think about the people that actually
come to our organization.
It's actually 85 of the people that come
to our organization are women 35 to 55.
And it's a very interesting group of people that,
a lot of them were career oriented.
They have college degrees, they they're raised families.
And then all of a sudden illness struck them in this,
strength of their life, in their thirties.
And so I think the, the idea of the wishes,
but you're right.
Little things make a huge impact in people's lives.
And when we talk about that,
even with things like accommodations for businesses, right?
It's always something that's,
it doesn't cost them a lot to do,
but it's something simple to do to make a difference
in somebody's life.
And so I wanna, we're gonna wanna kinda wrap up
this conversation everyone.
I want each of you just kind of share.
Give us one or two things that the people are listening
to this can do, that is gonna have that impact,
that's gonna, make maybe a change in as one or two things,
I wanna think about one them as a caregiver.
So what would that one thing they could do as a caregiver
and what would the one thing they can do
for the person they're caring for right?
So whoever wants to jump in and do that would be great.
Well, to me,
I think the one thing that can be done right now is for us
to develop flex that empathy muscle,
when I'm having a tough time with dad or a colleague or all
the issues we have here at work and people coming back
to work, I have to step back and look at things from their
perspective for just to be.
Where are they coming from?
Why is this hard for them?
Why did dad yell at me this morning?
Could it have been because blah, blah, blah.
Once I can put on that empathy muscle and really flex in it
and look at him from that perspective,
as well as other people,
even in our social climate right now.
Empathy would sure go a long way to being able to take care
of some issues, and I sure hope that doesn't go away.
Great.
What did you do for some, what would you say to the person
who is being that you can do
for the person you're caring for?
Being empathetic.
Okay, great.
It works both ways awesome.
It really does.
If I, I'll just jump in.
We always tell caregivers to be the CEO of caring
for the loved one eight.
You're in charge, I mean, for me now,
with mom having so many different doctors
that this one changes this medication,
that one changed that medication on
the actually every time something changes,
I'm putting a new form together and sending all the doctors
who are going, "Oh, I didn't know that."
So you have to be the CEO of caring
for your loved one eight.
But also I think that goes very well
with PK's empathy conversation.
It's you have to find a way to not be so totally responsive
to what you love one does that triggers you.
Because you are a CEO, you are manager is managing
this incredible organization of the most important
organization over manage the one,
keeping your loved one safe and well.
You have to make sure that you understand the intensity
of the family dynamics that happen
when we're all locked in together.
I always say if somebody said something to you in an
elevator that you wouldn't even think twice about,
but if it's something that,
your dad or your mom said to you,
that triggered you, your head explodes.
You have to make sure that you have that emotional distance,
that you are understanding that this is a job and you
are dealing with a challenging situation.
And you're all in this trying to make it work as,
as well as you can.
And also many times you can even tell your loved one with
cognitive challenges that hurt me.
When you said that that was something I didn't appreciate,
And here's why.
So instead of keeping that from them,
I think it's important too,
to just share your feelings as well.
And we've found that to be something that works.
No, that's fantastic.
So, but you're right.
It's the understanding that the listening,
this is a time for us to be the most gracious,
which is the hardest thing, right?
Because we really want you're right.
You're spending time now with people that,
I mean, like an inordinate amount of time,
even as a caregiver, you may have not spent
so much time with somebody, right?
So more and more time, but to really be gracious,
and remember that the stress is impacting everybody,
the anxiety is impacting everybody.
So whatever they're saying or doing to step back and say,
okay, it probably is tainted by all those things right now.
Right?
And despite the people that say, Oh, I got this,
this is easy.
I got it.
No problem, it doesn't bother me.
It does.
I mean, you, can't, we're at a point in our, in society,
in the world right now where anxiety is part
of what we're dealing with, so.
We need to somewhat not embrace it,
but understand that it's part of what we're going through.
So Amy.
You know,
I think I've always encouraged caregivers
to think about taking care of themselves
as not being selfish, just being practical.
And now in spades and during, during COVID-19,
it's even more so.
When I was a care giving and most intensively for my parents
and my sister who lived across the country at the same time,
I learned to look at it like my car,
my car can't run on empty.
And I had this "aha" moment when I filled my
almost empty car up with gas.
And then as I pulled away,
I thought the car actually runs better
on a full tank of gas.
Well, "duh" right.
So I started thinking about ways to fill my tank
and that's the way I look at self care.
And there's a variety of ways to do that.
And now during COVID-19, we have to be even more creative.
Some of the things that filled my tank, I can't do now.
And so I to find other ways to do that.
But look at it as a very self, very practical thing.
It's not selfish to take care of ourselves.
You've got to keep putting fuel in so that you have
something to give and nurture your soul.
And so that you have that emotionally and spiritually
and the ability to give to others.
So I would say, really reach out to other people,
connect with other caregivers, be creative about,
really focusing on even the very little things like making
a good cup of coffee and how that fills you up and be very
consciously and intentionally aware of that.
For those who are caring for.
You wanted to know,
I think one of the most important things right now is to
understand that grief is a big part of this whole pandemic.
Things, losses anticipated losses, the fears,
all of the things that are going along.
And so I think having compassion and understanding,
as you two have both so said so well is having,
that empathy, that compassion,
that understanding where that person is coming from,
I'm doing a lot of coaching caregivers around behavior
changes now, and they don't, they often think
that their loved ones aren't really affected by this cause
they weren't that active before anyway.
And they aren't really getting down to the minutiae of it,
that it actually is affecting their lives as well.
And they're watching TV or they're hearing the stories
and they're afraid.
So really understanding that the pandemic
affects them as well.
And try to come up with new things to do.
I think keeping people active and busy is so important
and just get really creative about it.
I, and yesterday I was posting in the Facebook group.
I found some pictures of my parents when
they were in high school and college.
And I thought, Oh,
I wish they were here for me to talk about with them.
And they could tell me stories.
And so I posted those pictures and said,
"Hey, talk with your loved ones, pull out pictures."
That's a great activity to do right now when you're stuck
at home and talk about, get them to tell stories.
And one of the caregivers said she did that.
And her husband Greg remembered people,
she was astounded that he did.
And so just getting really creative like that with ways
to connect and interact and stimulate.
Well, that's fantastic.
One of the things I wanna say is,
also for the person we're caring for some of them do,
are dealing with dementia or whatever,
they're younger, they're sometimes their children,
sometimes they're, young adults or whatever that is,
but it's providing an understanding that yes,
the caregiver does need to break some times too.
My wife's really good about that.
Sometimes I tell her, I said, "I'm going into town."
Cause we live in the country,
I'm going into town to pick up dinner.
Just because I gotta go into town and get in the car
and go for a drive.
I mean really that's or go to Starbucks or something.
It sounds, seems like a waste of time and a gas and money
and all that stuff, but I'm like, I gotta go take a break.
Right.
And sometimes we, the person who's being cared for,
needs to give the person the ability to do that,
that it's okay for them to make a phone call.
It's okay for them to take a break for a little bit.
And so that's a big part of it too.
Well, I think it's just fantastic.
I was just gonna say, I used to get my dad out and we,
I get him in the car and we go to Starbucks and do the drive
through and get cake pops and lemonade or whatever,
just to get out of the house, cause I needed that.
And it was good stimulation for him.
And I think a lot of people,
you mentioned PK that your dad was kind of reticent
to even take a walk.
People kind of forget that they can get in their cars
and drive around.
And it is a change of pace.
It's a break.
So I think that's a great thing to do.
Well I, this has been an amazing conversation,
and I know that the conversation will continue,
each of you and your organizations in the maze
and the stuff you're doing and we're,
through invisible disabilities, we're so honored to partner,
with you and figure out ways
that we can impact caregivers.
During this relationship summit,
we brought in a bunch of amazing experts,
such as yourselves,
as well as other relationship extras to authors.
And we have, there's a business relationship round table.
There's all kinds of different aspects.
There's some writers talking about it and how they write
about it and their fiction and how it impacts.
It really is about a time to think about relationships
and the benefits that we can provide to them
and do use this as a catalyst for good,
instead of the difficult things that we're going through.
But for people to understand who are watching this,
they are not alone.
We are here to help.
They're not gone through this by themselves,
even though that isolation feels real
cause it is in a sense,
but they need to understand that they are not alone
and they're not the only people going through this.
And we're here to provide that insight,
to provide those relationships and to just provide hope.
And to me, that's what hope is.
Hope is when somebody else reaches out to you in the middle
of what they're going through is difficult
and they share it with you, right?
And how they can impact.
Hope is not that, "Oh, we can the cure of the illness
or whatever necessarily."
The hope is, the humanity saying, you matter,
you have value.
I care about you.
I just wanna call and say hi to you and let you know
that I appreciate you.
So, and I wanna like all of, you know,
Amy and P.K. and Gary,
that we so appreciate you from our organization
to be part of this caregiver conversation.
And we're really thrilled to the future to see how we can
come together as well, and to make a difference.
So thank you so much for being part of the love idea summit
and a caregiver conversation.
And we look forward to how people react as well.
So thank you.
Thank you.
Thanks for having me
Thanks everyone.
(upbeat music)