- [Announcer] Live from your Public Media Studios, WVIA presents "Keystone Edition Reports:" a news and public affairs program that goes beyond the headlines to address issues in Northeastern and Central Pennsylvania.

This is "Keystone Edition Reports."

And now, moderator, Julie Sidoni.

(bright orchestral upbeat music) - Welcome to this special edition of "Keystone Edition."

I'm Julie Sidoni from WVIA News here in our studios near Pittston.

What you're about to see is a conversation, several months in the making, all about and for caregivers.

A study done by the AARP and the National Alliance for Caregiving just this year found that the number of people providing care for a loved one has grown to more than 63 million.

That's a significant increase from just five years ago.

Now that's a national statistic, but we know what's happening here in Pennsylvania, and, of course, right here in our own neighborhoods, so we're gonna talk about it.

We've assembled an impressive panel to provide some real-life perspective on this topic, and it is my honor now to introduce them to you.

Actually, I would love for you to introduce yourselves.

Thank you all for being here, I can't wait to get into this conversation.

We're gonna start with you, Secretary, go ahead and tell everyone who you are and where are you from?

- Well, thank you, and thank you for having me.

I'm Jason Kavulich, I'm Secretary of Aging for the Commonwealth of Pennsylvania.

- Thanks for being here.

- I'm Diane Kennedy, and I'm new to this caregiving experience, as my husband was only diagnosed with Alzheimer's last year at the age of 58.

- [Julie] All right.

- I'm Paula Baillie, and I am the Program Director for the Memory Cafe at the Gathering Place.

- All right, can't wait to hear about that.

- And you?

- Hello, my name is Laura Ness, and I am the President of the Pennsylvania Home Care Association board, and also the Head of Government Affairs for AbbyCare.

- Let's just start with you right now, because I didn't know much about AbbyCare.

Tell me what that program is.

- So AbbyCare is a new and innovative platform that allows parents to be trained as family caregivers, and then be able to care for their loved ones predominantly in the pediatric space.

- [Julie] Wow.

- And be able to get paid and, you know, have the oversight, have the supervision, have the education all provided to them, and create a community around all of these caregivers.

We know that caregivers oftentimes feel very lonely, and it's a very isolating job.

So, AbbyCare works to bring all of those pieces together with technology and community and great education.

- Right.

We're gonna get to more of that in a little bit here.

But, if you don't mind, Diane, I would like to start with you, because I'm curious what your life was like, say, five years ago or 10 years ago, versus what your life is like today.

- Five years ago, I think... Let me talk about what my expectations were for now.

(chuckles) So, five years ago, I would've been 51, and I would've, at the age of 56, been expecting to plan for my retirement, my husband's retirement.

Since his diagnosis last year, retirement is sort of an out the window concept at this point, because we're more consumed in our day to day with the getting through the day to day and knowing that we're dealing with a disease that doesn't get better, it just gets worse.

So, there's a lot of differences between what I expected five years ago and what I'm dealing with now.

- [Julie] And very young.

It's very young that he was diagnosed.

- He was diagnosed at 58, so, yeah.

And, now, I will say in terms of the entire story, he had pursued a diagnosis back in 2015, and at the time, they didn't really test him for dementia or Alzheimer's.

They had done their evaluation and determined that it was stress-induced.

So, he was fortunate that he rebounded in around 2017, he found passion projects that helped him move on and move past the challenges he was having in 2015.

And it wasn't until 2022, I think, that he started having those similar challenges with not being able to recall things.

And this time, it really affected his work.

He worked in information technology, it really affected his work and his ability to program.

So we went down the same path, and, this time, they did a spinal tap and were able to diagnose him with Alzheimer's.

So that set us on this different course.

- Secretary, I bet you hear a version of this story a lot.

Give people a sense of how common this is.

Understandably, the state decided that it was big enough to put together a strategic plan for, and really plan for.

But caregiving in particular is different from the aging space.

So what are you hearing about caregiving when you listen to a story like that?

This seems to me to be just kind of growing exponentially.

- Well, I mean, like you said, 63 million caregivers and family caregivers, 1.5 million in Pennsylvania alone.

And that's all types of family caregivers, whether it be you're caring for your spouse, whether you're caring for your child, or you grandparent raising a grandchild, or, you know, you're a child caring for your elderly parent.

It's growing exponentially because our population is growing and shifting.

But, you know, we recognize the need to work with all age groups, we recognize the need to work with the Alzheimer's and dementia-related field early on in this administration.

And that's why as part of Aging Our Way, PA, and as part of the administration's plan, we stood up a division in the Department of Aging that really serves this population.

It's brand new, it's the first year that we've had it, we are still in the building phases to get it off the ground and launch, but we have great partnership with the Alzheimer's Association, we have great partnership with the Jewish Healthcare Foundation, and other, you know, foundations and people who work in the space of other dementias, like Lewy body dementia, all gathered together on a steering committee to help us really form a path that we're going to take as a commonwealth to serve all people in this space.

It's housed at the Department of Aging, and we are the convener, but in no way, shape, or form, are we just concentrating our efforts purely on older adults.

We are making sure that we talk about this as comprehensively as possible.

- I'm wondering about the distinction between someone who works as a caregiver, as their job, and someone who finds themselves a caregiver and never expected to become one.

And I imagine that's something that you are dealing with.

Did you have any medical background, or how much have you had to learn in terms of how to properly take care of your husband?

- Well, fortunately, he's still in the early onset stage.

So, medically, there isn't a lot, and he's highly functional, self-sufficient.

So I'm fortunate in that, because we are very early in the diagnosis.

But I had to rely on a lot of instinct, I think, more than anything about just caring for somebody else, an adult somebody else, and building schedules and activities and finding community resources that would help him be successful in his day.

Now, fortunately, he had an employer, he was eligible for long-term disability, but then he was gonna be home for five days a week, nine hours a day by himself, because I do still have to work full-time.

So it was about finding resources and other solutions that could help him, like I said, be successful in his day, and still feel that he contributes.

- So, right off the bat, I'll go back to you.

Someone figures out they're now a caregiver, they now must plan to be a caregiver.

What's their first call?

- So, I mean, with just the statistics, that's two-thirds of us will be in this position.

And you're right, oftentimes, no one's prepared for this.

It comes quick, it comes in crisis.

What I recommend people do always is always reach out to your Area Agency on Aging, okay?

Even if your spouse is not age appropriate, they can steer you towards resources and directions, it's still a focal point you can reach out to.

Now, you know, just in the last, you know, we'll just say, in the last month, the department has launched PA Care Kit, which is an interactive online resource housed on the Department of Aging's website that you can reach out to day or night, anytime, to look at and see what individualized resources you should be tapping into.

There's an interactive quiz that is part of the Care Kit that helps inform you what resources on the Care Kit would be most beneficial for you to look at.

It's individualized and it's very practical, easy to read materials.

And there's so many resources there also from the PA Homecare Association, the Alzheimer's Association, the Jewish Healthcare Foundation for you to watch and just get your head wrapped around what your next step should be.

- And if I am someone who doesn't really know technology, or I'm a senior or an older adult who is not necessarily great with my computer or apps, then what?

- Well, we could even take it one step further.

Say you live in a community that has very little broadband access, 'cause there are communities like that across Pennsylvania, you know, we are partnered with our public library system, so that you can go to your public library, there'll be printed materials as well as the ability for you to access the website from one of the libraries resources, and be able to, you know, see what would work best for you.

But we'll make our printed materials available at public libraries, at senior centers, area agencies on aging, and state representative, and senator's offices.

- Well, Paula, you run the Memory Cafe.

- I do.

- And I know we've done some stories about that, but go ahead and explain what the Memory Cafe is.

- The Memory Cafe is designed to create community.

The word that you used was "isolation."

Many people, as behaviors change, friendships kind of disappear.

We wanted to give people a home where they felt safe, where they could connect with other people.

When we designed this, we designed it with the University of Scranton OT department, the PT department, and the Alzheimer's Association.

And I thought as we designed it, that we were designing it just for the person with the disease.

What I found out very, very quickly was the partner needed this as much as that person did.

Within our Memory Cafe, our care partners have an opportunity to talk to each other, and they share their problems, they share their solutions.

It is one of those things that is creating community.

We're not closed to the public.

When we're operating, people can come in, we're in the middle of an art gallery, so things change, so it's very stimulating.

But people can come in and see us from the community.

In other words, we belong here, and that's the point of it.

- So tell me a little bit about the... I like what you said there, that you had started for the person with the disease and quickly figured out that the caregiver also needs something different.

So, tell me a little bit about what goes on.

If I walked into Memory Cafe, what am I gonna see?

- We start off with a standardized opening, because standardization for the person who's living with the disease really eases them.

We start off with coffee, Krispy Kreme Doughnuts, which they like better than what I make at home- (Julie chuckles) - You can't go wrong.

- And bring in.

And we sit and we commune with each other.

We then have trivia, and it gets raucous.

(guests laughing) I have to say, people enjoy getting the answers right, and when they get the answers wrong, there's a lot of laughter.

And from there, we split.

We have an exercise program, we have a craft program, and we have a music program in the form of colored bells, which you think of as something childlike, it's not, it's pretty demanding.

So, people choose what they want to do, or they choose just to sit and be by themselves.

And then we have volunteers who might sit with them for a few minutes to see whether or not they can engage them.

And if not, so be it.

In other words, this is a choice, and we give them power by giving them choice.

- Do you interact there at Memory Cafe with Rob?

- You know, unfortunately, this is the first time Paula and I have actually met, because our story of Rob getting to Memory Cafe started before he was diagnosed, because he took short-term disability and was gonna be home.

And, like I said, I had nine hours a day, five days a week to fill for him that he was gonna be home by himself.

So I had looked up resources of just community events, I used to work in social service, so I was familiar with what was available, but it had been a number of years.

So I just started looking, I stumbled across Memory Cafe, and even though that wasn't his diagnosis yet, he knew he was having cognitive challenges.

So I set him on this course one morning saying, "Okay, I'm going to work, you're going to Memory Cafe."

And he loves to tell the story of the first day he walked into Memory Cafe and there were no men.

- [Paula] (chuckles) That's true.

- And he walked in, he is looking around, and he's like, "Yeah, I don't think this is for me."

(guests chuckling) - Oh, no.

- And, I mean, I always appreciate the fact that he even went, 'cause, shoe on the other foot, I would never have gone- - Yeah.

- 'Cause I just wouldn't have done it.

But he walks in, no men, and he's about to turn around and walk out, somebody grabs him and pulls him in.

So then his goal has been since then to get more men active and involved in Memory Cafe.

So I have never been there yet, because I work, but it's been a reliable resource for him that it was always welcome, it's always been stimulating, and his favorite part of being at Memory Cafe is helping other people.

- [Julie] Hmm.

- So that is every second and fourth Friday of the month, that's where he goes, because it is very community-based, very welcoming, and it's just a reliable resource for us and for many other people.

I know a lot of people have joined since he joined, and he really appreciates, we appreciate, the fact that it's a resource right in our community, 'cause we live in Clark Summit.

- Is it something that you are now looking to expand?

- We don't ask anybody to register, they just walk in, so it has expanded on its own.

For the first three years until the pandemic, we had three people.

And someone said to me, "Paula, what are you doing?"

And I said, "Mm, you know, it's kinda like field of dreams, if you build, it will come."

Well, it did, it exploded.

We got information out to doctor's offices, we built our online presence.

And we get 20 to 28 people, it's a little crowded, but, yeah.

So, in terms of expanding, I would expand the kind of programming that we offer people, I'm not gonna turn anyone away.

- Right.

Well, so, Laura, I'm kind of interested in, I don't wanna say the science behind this, but you mentioned isolation, and obviously they have spoken about how great it is to have that connection with other people.

What does the research say about this?

What is so important about having other people who are going through it with you?

- Absolutely.

So, it's incredibly important to be part of a community for the information sharing, for understanding how disease is progressing, but also just the general health of society.

You know, Pennsylvania, it's one of the most quickly aging states that we have in the nation, I think we're the fifth most aging population, and the Home Care Association represents over 700 different home care and home health organizations that go to people's home and provide this level of care and utilize technology to understand how care is being delivered, and how things are progressing, how we can deliver care better, how we can, you know, help elongate that plateau where people are able to stay in their homes, and how we can provide additional resources and training.

Once you get through understanding what resources are available to you, and you are a caregiver yourself, then it's like, "Well now, how do I do this?"

So, the Pennsylvania Home Care Association has spent years developing My Learning Center with many external partners, including the Department of Aging.

And we have over 315,000 active users on this online platform, which provides a myriad of different training opportunities, and it's free.

So anything from helping to learn how to transfer an individual using a Hoyer lift, or using a piece of durable medical equipment, to learning about how dementia or Alzheimer's progress, and what to look for, and how to continue to engage, a whole myriad of subjects available to caregivers, whether you're paid, whether you're a family caregiver, or unpaid, or, you know, if you're even just a family friend that's coming in to help support on a respite basis, all of that is there and just at the fingertips for you to be able to do as your own self-paced guidance.

- What would you say is the biggest misconception about caregiving?

Or what do you wish people knew?

- I think when it comes to caregiving, there is a misconception that it is for the elderly, and it really runs the gambit.

Home care takes care of individuals from birth to medically fragile children that, you know, 10, 20 years ago would've lived their entire lives in a hospital, or wouldn't have survived, all the way up through hospice and death.

It really runs the gambit, you know, individuals who get into horrific car crashes and then become paraplegics or quadriplegics and need to have in-home care.

So the breadth of community members that utilize caregiving services is really quite expansive.

And what can be done in the home as well, I think is also a misnomer, because folks typically think of your services of maybe helping people get changed or whatnot, but we could really do some very advanced things in the home now.

And with less risk of infection, you know, we know that folks do better in their homes, it's a familiar environment, they're able to engage more, the motivation is there to continue to stay in their community.

So, you know, you can do things like, you know, really complex wounds and taking care of those in the home, to taking care of children or adults with ventilators and trachs or G-tubes, all of that.

So it really runs the gambit as far as what can be done and how family caregiving can be involved in that.

- So anybody here in the audience, anybody at home, could learn the things that you're talking about, those resources are available currently to anyone.

- Yes, all the aid services, certainly, of course, when it gets into the nursing side, you need a nursing license, and that's where a lot of the home care agencies come in and help with trained therapists, nurses, et cetera.

But a lot of what families can do in the home and caregivers can do in the home has a monumental impact on client, on the individual who is in the home, and their ability to be there safely and be there for the long term.

- It makes me wonder, when I said the 63 million, that was a study done by AARP, which I'm sure was designed for aging, and I wonder if caregiving is actually a low number.

- Yeah.

- There could be a lot more caregivers than that.

- I would certainly hypothesize that it is.

(chuckles) - What about you?

What do you think is a misconception about caregiving, or something that you really want people to know?

- Well, not only that, it's just for older adults, but, you know, that it's not difficult.

I think people underestimate the challenges that are associated with caregiving, I think people don't understand the overwhelming stress that the caregiver feels, sometimes the isolation the caregiver feels, and, you know, the stress that just is compounded by that.

You know, the family's reliance on the caregiver to be the caregiver, the individual's reliance on the caregiver to be the caregiver, and not always having the right kind of respite for the caregiver is something that I always worry about and say we don't talk enough about, because we need to have them have the respite and the relief that they need, so that they can continue caregiving.

If you just talk about older adults and say that this is a $22 billion industry of unpaid caregivers in Pennsylvania- - We're $22 billion.

- Billion dollars.

Our system could not handle half of that- - [Julie] Wow.

- If we were to take that on as a paid caregiving workforce.

It would change the landscape entirely, it could not be absorbed.

So we need to think of ways that we can provide respite, we need to be cognizant in community of respite.

Sometimes, it's not something big, sometimes it's helping your neighbor take out the trash, sometimes it's sitting with someone for a little while, so they can run to an appointment, or just get a prescription.

- Take a shower.

- Take a shower.

- Take a shower, you're right.

It is the small things that sometimes make the biggest difference in any given day.

But we have to get back to being more of a society, we have to be more of a community, and helping each other in this space.

This is not something that we are learning new.

This is something we're relearning that we lost, that communities worked more closely together, that they took care of each other.

We see this in other cultures, in other parts of this country, and the other parts of the world, how cultures take care of their older adults differently, how they take care of the needy individuals in their communities differently.

We've gotta get back to doing some of that, if we want to continue to make the progress we're making.

You know, I said, we're going from one in four people being older adults, to one in three people being older adults in five years.

So that's like 3.4 million turning to 3.8 million before you know, and it's not going to change until I'm almost 60, which is a while from now.

(guests and Julie laughing) So we have to, you know, remember there's the caregiver and we have to remember, we need to be cognizant that we have to support those caregivers in the ways that we do.

We have to continue to develop training, resources, information.

You know, the education platform, that Laura just spoke about, is an incredible resource that's completely underutilized, and we're working with the association to find new ways to promote that as well, because the educational materials are outstanding for someone who's just coming into caregiving or is at a different point in caregiving where they need to have more resources.

So, one, keeping the conversation going, two, understanding it's not that easy, three, making sure that we continue to find ways for the care recipient to feel valued as well.

Like, you know, when you were talking about your husband going, and his goal is to bring other men into the group, that sense of purpose is huge, it's very important, and having to remember there is a human side to all this too, and keep it as a person-centered conversation, not a disease-centered conversation.

- I- - I... - Go ahead, go ahead.

- I think you bring up a really good point, in that, the difficulty associated with it, because, in my experience in this new role, I've had a lot of friends and family come and say, "Hey, we're getting to the point where we need to think about what to do with my mom, what to do with my dad."

And, you know, they kind of ask this question of like, "So what should we do?"

And my response has always been to them, like, "First and foremost, whatever decision you make is not going to be easy.

Whether or not they need to be in a skilled nursing facility or a personal care home, or you wanna keep them at home.

None of the choices are easy, and it's going to require coordination, and consistency, and collaboration with your community, but thinking about what's best for that individual and what's best for your family right now, and what is that end goal?"

So you bring up a really great point in that it's not easy, 'cause it's not, but it is something that we all need to kind of work towards and work together with in a very collaborative and very consistent nature in order to help these folks.

- Being a former teacher, I brought a show and tell.

- I love this.

(guests chuckling) - And the reason I brought a show and tell is exactly what the two of you are mentioning, what you're experiencing, every single caregiver that comes through my door gets one of these books, and it's called "The 36-Hour Day."

If you are in that position, you might wanna get this.

Your day is 36 hours, it's no longer 24, it's expanded by the emotional weight of what you're going through, as well as the daily process.

So, there's my advertisement.

(Julie and guests laughing) - Well, I noticed when Secretary was speaking, you both reacted to the difficult part.

You know, I don't even really know that I have a question here, but when we're asking what you wish people knew, what do you wish people knew?

- Well, some of what the Secretary said that I really appreciated, that I was nodding about, was the sense of community- - Mm-hmm.

- Because it's not that I want people to necessarily know what our story is, but just the value of having community around you has been really significant.

You know, Paula certainly has a great community there at the Gathering Place, but there have been so many other people as we've started this journey who have really helped us feel like there's more community than we had before we started it.

- [Julie] Oh.

- So that was a lot of my nodding when he was saying that about community, because I think just being part of that or lending a hand, taking out the garbage, and we have a number of senior neighbors who, when I was walking my dog and garbage would be collected and the empty can would be there, I'd know their age, and I'll push the can back in.

Just small things really do make a huge difference for people on whatever their journey is, whether it's caretaking, caregiving, those small gestures are huge the more I think.

- Do you think other... You said something about other countries I think, about taking care of their aging population, their older population.

What are we doing wrong here?

- Well, I said, I think I said other cultures.

- [Julie] Cultures, sorry.

- That's okay.

But, you know, we look at some of the Asian cultures that we have living in the Philadelphia community, and how well they wrap their older adults in services and supports in sense of community, not necessarily in paid services, but in true community services, and where they will watch out for the wellbeing of each other, that family takes care of family, and then people support that family taking care of family.

We can learn from our neighbors ways that we can do better, and that ways how we should do better.

You know, we're really lucky in Pennsylvania to have the home of community-based services that we have.

That with a sense of community is a really powerful way to make sure that older adults and others, even the disability community, continue to live independently with grace and freedom in the communities they love, that they don't have to make a harder choice than that.

They just have to accept some help.

- I'd like to get into the cost of all of this.

What this does to a family budget, what people need to be thinking about even before they're in a caregiving type situation.

So, first, can we go back to the statistic that you mentioned about how many unpaid caregivers there are, that has to be job loss, that has to be salary loss, that the cost loss of this, I can't even calculate in my head right now.

- Well, when you think about it, you know, caregivers, and primarily women too, you have to remember 60% of the caregivers out there are women, and they carry jobs and they raise families, and they're doing caregiving of a loved one, or their parents.

You know, they're working a part-time job on top of their full-time job.

It's an easy 18 to 24 hours a week additional to their 40 hours.

So, I mean, thinking of it in those kinds of terms that they're working a second job essentially while they're doing their full-time job, while they're caregiving, and while they're, you know, making sure that everything gets taken care of in their lives.

And then putting a dollar, you know, the estimate is $22 billion.

We don't know what the real cost is, that's our best informed, you know, guess that it's $22 billion in unpaid work out there.

But like we said, that's probably a low number.

So, you know, what it cost one emotionally, what it cost physically to families- - Of course.

- There's no number on that, but the resources, we see people, they run through their life savings quickly, we see them run through all of their assets.

In the video that was shared earlier today, you know, we heard a woman go from $3,000 on her credit card to $30,000 on her credit card, because of the cost of caregiving.

That's why we're really proud in Pennsylvania to prop up the services that we have in our lottery funded system.

That's why we continue to work for more resources to make sure programs like the Family Caregiver Support Program and others can be there for families when they need it, and that we can help them the best we can.

We're lucky in Pennsylvania that we have the lottery dedicated to older Pennsylvanians, it's a huge resource.

And, you know, I think people sometimes see it and say it tongue-in-cheek, but it really is a tremendous asset.

When you think about, you know, the Department of Aging has, you know, a $700 million budget, and only 19% of it is a federal resource, the rest of that budget comes from lottery funds.

- The lottery.

- [Jason] Yes.

- It makes me wonder what other states do?

- Yes.

- Right.

So, on this topic about the cost or the resources, what do you think people's first call should be?

I mean, if you understand, not the social or emotional part of it, but if you really have... Sometimes you got one income, now what?

What is a resource where people can go to ask these difficult questions?

- Yeah, well, I think, one, understanding what's out there and available, so the new resource that the Department of Aging is gonna be putting out will be a godsend for many families.

But after that, you know, aside from kind of a lot of informal support groups and, you know, a lot of non-profit disease groups that have resources, there's not kind of a universal ability to get help in in a lot of respects.

A lot of the reliance that we have as far as taking care of older adults in Pennsylvania comes from the home and community-based services, well-being, and that has to do with Medicaid and Medicaid waivers.

And, you know, with the number of folks that we have aging, the home care community is just not able to take care of the number of folks that need services.

There's over 112,000 hours left open and unserved every month because of low reimbursement rates and not being able to recruit and retain the caregivers needed.

So, you know, that is certainly a huge issue for Pennsylvanians and across the United States, to be honest, that we're seeing this, and they deserve to be able to get this kind of care at home.

A lot of long-term care insurance these days do not cover home care services or be able to provide services in the home for a long period of time.

When you're thinking about Medicare, a lot of that is very time-limited or episodic.

We heard earlier today, you know, an individual got kicked out of the hospice program because he wasn't dying quickly enough.

That unfortunately is a reality for millions of Americans and their families.

And so, the Home Care Association, you know, did a lot of advocacy work with getting families and caregivers involved in having greater attention and greater prioritization to these issues and to home and community-based services, so we can serve those, you know, that 112,000 hours left open.

- 112,000.

So you're saying that's a lot of hours where people who might need a professional can't find a professional, or can't afford a professional- - Correct.

- And has to do something on their own.

- [Laura] Right.

- What can be done there?

I mean that's policy, I'm not even sure where you start on that one.

- So, in our world, you know, we see that as our waiting lists grow.

You know, our waiting lists oftentimes are not... You know, the Department of Aging with our lottery-funded services, you know, we have better reimbursement rates in some respect, we still have trouble with getting caregivers.

And so, the waiting lists are not always for funding.

So the waiting list are sometimes for service providers- - Service providers.

- To be able to get the workforce that they need.

And that's why I said this is not a single department struggle, this is a Pennsylvania struggle that we need the Department of Economic Development, the Department of Education, the Health and Human Services, and Aging, and others pulling together to find out how do we, you know, get people who are interested in caregiving motivated and part of a system?

How do we build a career path for them to continue to grow and learn in this system, because there are individuals interested in doing this type of work out there.

It's how do we reach them, how do we keep them enticed in these these professional roles?

Because you want the best people in your home.

You know, when you really think about it, you know, what these individuals do, some of us would struggle to think about what it's like to go into a complete stranger's home and give someone a bath- - Right.

- Okay?

- [Laura] It's a job, you know?

- And then on the other end of that, you're the person receiving the bath.

You wanna know that the person coming through your doors is trained and safe and no harm is going to come from you.

- Right.

- So it's a two-way street for sure, and that's why we all have to continue our work together, our advocacy together, to build a better system and build better support for these workers.

- Obviously, without asking budgetary details, what are some of the things that you're now thinking about when it comes to your family's finances or planning you said?

It used to be retirement, and now it's something different.

- It is something different, and I don't know if Paula knows, I know, I think somewhere when we started this, it was that Alzheimer's is one of the most expensive diseases because of the duration of it.

- [Paula] Yeah.

- So that worries me.

I will say probably one of the first things I did was meet with an attorney, an elder law attorney, to talk about planning, which is, again, we're so early on in our journey that planning is challenging, because I don't know what to plan for.

Planning for retirement probably would've been easier- - Yeah.

- Than planning for an Alzheimer's diagnosis.

So, you know, I take his words, unfortunately, I've always been fiscally responsible anyway.

And it's just navigating that kind of by the seat of my pants, but just also what feels right for me.

And, again, I've never been a big spender, so I have a strategy, I don't know if it's the right strategy, but it's the strategy I'm rolling with at this point, because I don't know how to plan for what people have told me I really can't plan for.

- It's an impossible situation.

- Yeah.

- Yeah.

So it's just, you sort of feel your way through it, and, you know, fortunately, we've both worked full time for a lot of years and we have savings and we have life insurance plans and we have retirement plans, so, you know, hopefully, that will be enough.

But I've leveraged, you know, an attorney, a financial person, the life insurance people, like I've talked to all, and I think anybody should talk to all of those people.

If you have the resources to have those people in your life, I think you should leverage those people.

And those people have all been very helpful to me as I've tried to work this all out.

- And for someone who doesn't have the resources for that, do they come in and talk to you about it?

I mean, I wonder if there's a community, this is where they're going to ask the questions.

- Well, and that's where I send them to people like the Area Agency on Aging.

I send them, you know, there or to the Alzheimer's Association.

I've had people come in who are very upset, I don't have all those answers, I don't have that.

I might with this new kit, (chuckles) but they're the experts.

From my point of view, I'm providing a service for folks, I can guide them, but I can't give them all those kinds of answers.

- I've seen families that where, you know, two individuals wanna get married and one is a paraplegic, and they can't because he would lose his Medicaid, or she would lose her Medicaid.

I've seen families that have been, you know, partners that have been married for 40 years get divorced purely so the individual can go on Medicaid- - Goodness.

- Because of the resource restrictions.

Individuals are just left with impossible choices in order to be able to qualify and get care.

A lot of the pediatric work that we do, these families have become destitute, because there's no one coming, right?

Like, they're not able to get a paid caregiver to come in, because the rates aren't, you know, adequate and they're not being able to be paid a living wage.

So that results as mom and dad can no longer go to work, and then mom and dad eventually lose their house.

There have been agencies that I've worked with where they're providing care to a medically fragile child in a car, in a hotel parking lot, because they no longer have housing.

- [Julie] Goodness.

- So it's incredible the kind of difficult decisions families have to make in order to make sure that their families get the care that they need and deserve.

- The care they need.

Just the basic level of care- - Yeah.

And one of the reasons why I've loved working for AbbyCare is having family members, you know, that we can train and pay to do this type of work.

You know, they're the folks that love them most as well, and they're able to deliver this kind of very sensitive work with dignity and respect as well.

- We've talked a little bit about various types of therapies.

Obviously, talk therapy is something that is an option out there, something that a lot of people find helpful.

But it's not the only type of therapy, of course, there's art therapy, and music therapy, and WVIA News went to visit a senior center in Scranton utilizing that for caregivers.

Take a look.

(tranquil bright orchestral music) - We call Fridays our fun Fridays, because it's just a time to just be ourselves and just let our hair down and forget about life's trouble.

- We all say like Friday is our favorite day of the week because we get to come here and be with this whole group.

- Life is stressful, you have to find something or somewhere to go to cope with all this.

- This is our Caregiver-Care Recipient program at United Neighborhood Centers.

You know, we can look at the arts as a way to improve people's lives, their health, and wellbeing, and really the quality of life, to improve the quality of life, of those of us who are older and aging.

(tranquil orchestral music) It makes my life complete.

- Our approach is if you're human, you know, you're a creative, you're an artist.

(tranquil orchestral music) - I've never called myself an artist, but now I've found this like inner thing within me that comes out and it's now my, as a caregiver, when I have to sit in the hospital for hours and days upon time, you know, days after day, I bring my book with me and I write, and it's my therapy.

It's a great source of decompressing in really stressful times.

(bright tranquil orchestral music) - I wish I could come Monday through Friday here, because it's so spiritual, happiness, peace of mind, everything, and what you say you can't do, you can, because they show you how to do it.

And, you know, they don't pressure you, like, we just do our own thing, but... I'm proud of them and I think I'm gonna be a little artist soon.

- We all have our story and we all have something we want to express.

And that's really what we're, you know, trying to connect to is creating work that has meaning.

- We can still have enjoyment in really hard, end of life situations.

And that's what Arts for Life really is all about, it's life.

(bright tranquil orchestral music) - And we're really excited to have some members from Arts for Life in our audience today.

Liz, if you could go ahead and tell people who you are.

- My name is Liz Faist, and I'm the Assistant Director with The Armature, and a Artist at the Arts for Life program.

- I completely agree with you that people are creative at the heart, and if you can give them a space to do it, they'll come up with beautiful things.

Tell me a little bit about how you work in this space.

- Okay, great.

Our program has both professional artists, we have visual artist, and we have a writer, Don Lees and Gina Rice and myself, we have guest artists also participate in the program, and we have different lessons and we weave everything together.

It provides a space for people to be creative, even if they are not, even if it is something that doesn't come naturally to them.

We're all creatives, and we have a creative community where you could come in, learn, not only new techniques, but tell your story, make something tangible that you can have, that you can read, that you can share, that you can hang on your wall, that expresses, you know, whatever it is that comes out through the prompt that we're working whether visually or with the written word.

- What kind of things do you hear from caregivers who use your services?

- So many different things.

Sometimes, people come in and they'll say, "Well, I can't write," or "I don't like to draw."

And so many times, those are things that we've grown up with, some of that at one point, you know, you think you can't do something.

So it's very courageous that we're all lifelong learners to be able to learn new technical skills that have meaning, that tell your story, that express something that you wanna share.

So, you know, a lot of times someone will come in and say, "Oh, I don't feel very confident in this."

And then, within a few weeks, they're like, "I have a space in my home now, it's my studio.

(Julie chuckles) You know, I would like to share what I worked on this whole week."

So it just doesn't stop in that classroom time, in those two hours, it extends.

You know, creativity once it starts, and once you're really tapped in, you can't turn it off.

So, you know, that's also a wonderful thing, and it's contagious, it spreads, when it's genuine and it comes from your heart, it spreads to others.

So, somebody walks in, and I think other people remember, when they walked in those doors for the first time, and maybe it didn't feel like they had the skills, you know, to enter the room, but you don't need any skills, you just need to be there and show up and it will happen.

And, you know, every week it's something different.

You don't have to attend continuously, if you can, that's great, but, you know, we understand people have schedules or things come up, so you're always welcome to come through the door whenever it works for you.

- Where are you located if someone wants to check you out?

- We're in the United Neighborhood Center in West Scranton.

- All right.

Liz, thank you so much for being here.

I see we have someone else.

You're the artist, huh?

(Jodi chuckles) (Julie chuckles) Go ahead and introduce yourself, if you don't mind.

- Sure.

My name is Jodi Miller, and I am not just representing myself right now, I'm also representing my husband.

I started Arts for Life about three years ago by myself, and, eventually, I managed to talk him into coming, which was totally against his... He was not a artist, never did anything, and he joined.

And, you know, when you're dealing with terminal illness as a husband and wife team, you kind of lose each other as a spouse.

And Arts for Life is our fun Fridays, when he's up to it, it's been about a year since he's been up to coming.

But it was a place for us to have two hours a week where we just forgot about everything.

It was just about what we were there for, and the excitement of sharing.

And so, we found out things about one another that we would have never otherwise known about.

And so, I love to write, and I didn't even know there was a writing aspect to this class, so I fell right into that.

- [Julie] And then you met Don.

- And we have Don, right.

And so, just this past year, his health really deteriorated, and, Christmas time, he made a picture for me, a painting, but I didn't receive it until about three weeks ago, because he was so sick he couldn't complete the whole process, which was to go out and get it framed.

So I got the picture, and I sat in my quiet room, and I'm gonna read what came from my heart, from his picture- - That's the painting there?

- This is his painting.

- That's absolutely beautiful.

- So I call it My Love's Belated Christmas Gift of 2024.

"In the quiet, as I gaze upon his gift, my heart is filled with love, then these thoughts begin to flow.

The colors, they're warm, vibrant, and full of life, the peaks and valleys and the rolling hills are a reminder of our journey, the blueing flower tree trunk represents stability and vulnerability, the blossoms blooms the beauty of our love, the fallen petals beneath the canopy, the life we've lived, memories that now fertilize our true love.

The muted blended sunrise, the hope of things to come, the crusting of the sunrise, the need of reminder that the son," and I'm gonna spell it S-O-N, "Is always there.

Our wedding picture, our commitment to being united, the bling around our wedding picture is God's love and light shining through us.

My love for months of unanswered health challenges and seven hospitalizations, never give up, never quit, the overcomer loving me, trying to complete this gift by getting it framed.

It was his desire to see it through, to get the exact frame to display his gift of love.

Finally, a good day eight months past Christmas, he was able to shop.

With passion in his heart and his aide pushing him in a wheelchair, he accomplished his goal.

True love drives us to do amazing things.

My love, as I call him, is amazing, and I am so thankful he found his inner artist, and I am blessed."

And I just want to share that any outlet a caregiver is able to do with their loved one, to do it, make memories with them while you have them and you're able to do it, live one moment at a time.

And I really don't know where our lives would be if it wasn't for this particular program that we found our niche in, but I am and he is forever thankful for it.

So thank you for all that you are doing to try and create better lives for us caregivers as we are living in such heartwrenching places in our lives, so thank you.

- Thank you for being here and sharing all of that.

- Thank you.

- It's wonderful.

(audience applauding) So people are finding their inner artists, their inner writers, their inner musicians.

Well, you just sat through that, tell me what you think.

- You know, you get that question all the time, when you do what I do, "Why do you do it?"

There's the answer why.

I mean, think about the program.

I mean, I was there when we started that program, and then I had just a few short weeks ago, the privilege of just popping in one day when I happened to be in the center and seeing the real people being impacted by that program.

And that's what makes you get up and do this every day.

We're talking about human lives, we're talking about real humans, that this is affecting their lives.

The work that we do, the impact that we have, we change lives, we help people, you know, make sure that they can live in community and live among us.

And that's what I'm passionate about, making sure we empower communities to do programs like that, making sure that we empower communities all across Pennsylvania to support the people to live in communities as long as they possibly can with what they deserve.

And it keeps me getting up every day, it keeps me coming to events like this.

You know, someone in the audience said, "Wow, I can't believe you're staying all day."

I said, "No, I don't do the drop in."

- Yeah.

- "You have to get rid of me."

(all laughing) But really, the work speaks for itself, and it really, when you talk to the people, especially in the aging space, when you get to talk to the people that your programs impact, it just drives you to work harder the next day.

- Yeah.

You've had a lot of reaction to that.

I'm wondering what you were thinking.

- Yeah, you know, being the President of the Home Care Association, the folks that do this work day in and day out have an incredible passion for this type of work.

And I think in recent years, we've also come to realize how much we need to support the caregiver, whether they're an official part of the care team or not, and provide them with as many resources as we can.

So it makes me really proud of the work that we've done to support those caregivers.

You know, we have a newsletter now at the My Learning Center, we're featuring caregivers on a quarterly basis with Magic Moments, and I just hope we can amplify more and more of these stories and have people really appreciate, you know, the types of connections that can be made regardless of where you are and what circumstances you find yourself in.

- I don't think I asked where you were located specifically, if people would like to check out the Memory Cafe.

- Oh, the Memory Cafe is located in the Gathering Place for Community Arts and Education, which is a mouthful.

We're at 304 South State Street in Clark Summit.

If I could, please- - Absolutely.

- Just follow up on this.

- [Julie] Yeah.

- For a caregiver who is running to get to doctors, to pharmacists, to figure out financials, this is a moment a place like a Memory Cafe, a place like the art studio that these folks can go to, strengthens, and I'm borrowing somebody else's words here, strengthens the caregiver and their partner's relationship.

And what that lady just read was outstanding, because this is what we try to do for these people.

- I have to say, you were who I was thinking of during that Making Memories part.

And is there something that you and Rob do together, or something that you have started to do together?

- Ooh, that's a tough question, (guests chuckle) 'cause we spend every day, every hour I'm not at work, we're together for the most part.

But I wanna speak to the art aspect of what that group does, because one of the things that Rob did start to do again, I said, "Why don't you go do this?"

And, again, he's very receptive to that, and he started doing oil painting.

And what I appreciate about that for someone with early onset Alzheimer's is that, you know, he's challenged where the technology things he used to do left him.

I mean, they come back occasionally, but not the way they were before.

So my thought was, "Let's exercise other neurons in your brain.

Let's get other things going."

And so, an arts program like that is very valuable, because, A, he was willing to go to it.

Once he started doing it, he had all the concerns, all the trepidation, like, "Oh, I stink at doing this."

And he actually really enjoys it, and he was very good at it.

So, and after he finished his first project, I framed it, and he took it to places like the Gathering Place to say, "Hey, look what I did."

- "Look what I did."

- So there was a lot of value to that.

In terms of things that we do together, we do do more things together probably than we did in the past, such as, you know, we go to the RailRiders baseball games, and we go to music events, 'cause music is very significant for him as well.

So we do find more things to do that are community-based if we can, that we see people and interact, because the worst thing is isolation.

So we do work hard to make sure that neither of us is isolated, that we've got plenty of support and activities to keep us and our minds busy.

- Secretary, I'll give you the last word here, if you would like to plug whatever services, or tell people where they can find some resources, or anyone here who might need that info.

- Well, looking into the audience, I know there's so many of our community partners out there, the fastest way we can reach any of them always is call your Area Agency on Aging, and they can connect you with all our community partners.

PA Care Kit is now out there and available on our website for you and your caregiving journey, no matter what place you are in your caregiving journey.

The Department of Aging still answers the phone in Harrisburg, so we have a person that answers.

(Julie chuckles) You can always call us, we will always connect you to where you need to be connected to.

And thank you to my partners, thank you to all of the panelists for being with me today.

Your stories and the work that all of you do really keeps us driving to make a better system and a better infrastructure for us all.

- Well, Secretary, Diane, Paula, and Laura, thank you very, very much for your stories, for your time, for agreeing to be here.

That's gonna do it for this episode of "Keystone Edition."

Of course, we thank our panelists, we thank our live studio audience for being here.

And from all of us at WVIA Public Media, we'll see you next time.

(audience applauding) (bright orchestral music)