>> As the state's population grows older, more and more Kentuckians will face the challenges of caring for an aging loved one.

In fact, there are more than 600,000 caregiving Kentuckians.

What resources are available to help those helping others.

And how can caregivers address burnout and even isolation.

National caregiving expert Amy Goyer guides us through it now on connections.

♪ ♪ >> Thank you so much for joining us for connections today.

I'm Renee Shaw of the more than 4.5 million Kentucky ends 610,000 are caregivers.

>> KET is dedicating a new initiative to aging issues and we started with a recent forum on caring for the aging.

You can see that on demand online at KET DOT Org today, national aging and caregiving expert Amy gory or joins us.

She's not just a text book expert, but she's been a caregiver sense her college days.

She's scared for grandparents, parents, a sibling and others.

Thank you, Amy Goyer for your time.

It's good to reconnect with you once again.

>> Wonderful.

It's really good to see you again.

Monday.

>> While since we last talked in 2018, you've had even more changes and more experiences with your caregiving journey.

But I want to go back a bit.

You have almost 40 years of experience with this issue as an expert in someone who is rendered caregiving care.

But when did it start for you and what did it look like and how did it escalate?

>> But, you know, it started for me really when I was in college because my parents moved from Ohio where I lived.

It was going to school 2, Arizona and my grandparents were in Indiana.

And so they were very far way my moms family.

I have an uncle and cousins there who helped.

But my dad was an only child.

And so for my mom's mom, I was the rest.

That kind of caregiver.

I go over and take your church and take her to the grocery store and get my cousins and my aunt and uncle a break.

My dad's care.

And there was no one else.

And so I would drive over my grandmother developed Alzheimer's, and I would help my grandfather figure out how to care for her.

You know, I got meals and we'll set up for them financially.

We've got a home health aides and they eventually had 24 7 care in the home we would do things now that I would drive over and put the Christmas decorations or I You know, I think one of the things I remember talking about this before is that and that it would have me threat a whole bunch of needles with different colored tread so that he could ending and things he couldn't thread the needle to still do some selling that and eventually he needed care too.

I so it was a long journey.

Long distance for Mi 6 and half hours away.

But my dad was, you know, 2000 miles away.

At that time with armored.

My mom had a stroke when she was only 63 so well.

We're still caregiving for my grandparents.

My mom had a stroke, so my dad had became her primary.

Your first well as you mention, all the finances and various things of that might be legal matters.

Everything from my grandparents.

And so my sisters and I stepped in and tried to help my mom.

She was not paralyzed so she could walk, but she had pain, constant pain and chant of Asia so she never could drive again.

She never could cook again because sequencing didn't work.

And so over time I arrest.

But I might add my sisters and I, you know, would take turned.

I would come in, especially because I worked in this bill that I would help her.

I get into new new program.

Some kind of KET, Sarah, but you're something that would help her.

My dad had a hip replacement tonight came as a short term a few months, UNOS and telecommuting.

So I can't help out of the house while he was recovering.

I eventually I moved to Washington, D.C., and of course, my grandparents passed away on Chile.

Over time.

Then.

Probably my dad was in his early 80's.

We start seeing some things in him that were worrisome.

And indeed he developed Alzheimer's disease as his mother had had.

And so then I became a long-distance caregiver.

More for him.

I had a sister lived nearby a e. I think the thing for dad was that he he first struggled with more complicated things and it got harder for him to manage mom's care.

So we would help more with that.

to give you that the shorter version I ended up moving to Arizona.

I'm moving into my parents house.

They moved into a senior community for through about 3 years and then they move back in the house with me my mom past year later and my for a total of 6 years and we took care of him at home and he passed away at home.

And I feel very proud about that because that was his wish.

and my grandparents and had to go into a nursing home the last few weeks of their lives.

And that was not a good experience for us or them.

So that wonderful.

And I learned an awful lot.

You know, I work in the field of aging this whole time.

So it was different when it was my family.

So I was able to apply my professional expertise.

But you learn so much more when you're living it.

Right.

And for those who are watching, who are?

>> Listening to your story and thinking, oh, my gosh, that sounds like the trajectory that I am on right and made it.

I'm in a remote area where I don't have service is readily available.

What would you advise people to do when they realize, first of all, I am a caregiver because we often don't realize that it wasn't all.

Is that right?

And they want to do next.

Once you come to terms with this is where I'm going to have to focus and commit some of my valuable time.

>> Well, when I think the most important thing is to kind of assess the situation because the situation changes over time.

And as you heard, I had different roles as a caregiver.

I wasn't always the primary caregiver.

And I got to tell you, I was also caring for my sister who lived in Maryland at the same time.

So she had cushion dizzy.

She had different issues and I was her power of attorney.

But she had a network of friends that helped.

So I think the important thing to do is first figure out like Hoosier caregiving team.

What family can help, what friends, our neighbors can help.

It might be that they provide support for you.

So you free up your time to be the caregiver.

I you know, I have people would mow the grass for me in run errands for me and do all kinds of wonderful things that help me.

I have less stress and be able to spend time caregiving.

My sister had friends who helped turn when we can be there to help her.

Some look at that team.

Part of that team is organization.

If you're in a rural area, it is harder to get services.

I grew up in Southeast Ohio.

I know how that is, but you first at least find out what there is never assume there are any support every area agency on aging has a caregiver support program of some type.

So contact the area agency on aging and find out what can be provided for me and my loved ones.

So they have caregiver support and they have support for your older adult loved ones as well.

>> What is the typical profile of a caregiver?

I know that's changing.

We've been reading and hearing stories about millennials who are providing more and more care for their aging parents.

But what's the typical profile and maybe even gender?

>> Right.

we we do have caregivers and every single generation now Gen Z Millennials Gen X is right baby Boomers are the largest sex and caregivers and that but the Jets are coming right up and being pretty pretty close.

We still have some silent our greatest generation carriers, Tucson, don't forget, we've got many, many people in their 80's, even their 90's, caring for a spouse.

You're in for a sibling.

And they need support as well.

We do know that about 60 percent, roughly are female.

And and about 40% are male.

We know that people are caring for all kinds people with all kinds of health conditions.

We know they're caring for folks with men shop about 60% of family caregivers are working.

Important point, Renee, because if we are working, we take on caregiving can be like a whole nother job.

You know, it can something that takes up so much time.

And yet we're working full time or even part-time.

It's it's really a struggle.

But we need that income and we need it for our own financial security.

When we're caregivers.

So I think that's really important to pay attention to.

We have a lot veteran family caregivers.

you know, you're caring for veterans.

But about 60% of those who are veterans who may be eligible some spur, some support from the VA are not taking advantage of them.

About half are not using them.

So, you know, we need to to look into that as well.

The VA was a great sport for me.

When I was caring for my dad, he was a World War.

2 and Korean War veteran.

And there were we've got home based primary care from the VA and we had help with paying for content, supplies and medical equipment, all sorts of things.

So, you know, look at your veteran caregivers.

I think, you know, the big thing that we need to think about is that family caregivers of providing so much care.

We are the backbone of the long-term care system in this country.

And the value of that is about 6 100 billion dollars.

600 billion dollars in the state of Kentucky alone.

The value of the care that 610 family caregiver, 610,000 family caregivers provide about 570 million hours of air.

And the economic value.

That is 8.6 billion dollars just in the state of Kentucky.

>> And that is on paid service that's being rendered, right, that those rang family and friends who were volunteering that amount of time.

That is equivalent to a full time job and then some rides 60 something hours a week is is average perhaps even more for those who, you know, they're starting off and they are they are curious about, well, what if mom or dad get to a point?

Well, I cannot provide the in-home care.

What would you advise them do?

What should they be seeking out?

>> Okay.

So only about 3 or 4% of people are cared for in assisted living or nursing homes.

It's a small fraction.

The vast majority of people are either cared for in their own home or their loved ones home.

And so that first day when you start thinking and I can do this anymore, look at what help is available at home.

First because the cost of care.

It's unbelievably high cost of care facilities is something in that people just don't have any concept of until you really start looking at it across the nation.

If you do have some of the adult day care center, for example, 5 days a week that's going to cost about $19,000 a year.

And there are adult daycare centers around the country.

Some in rural areas.

$59,000 a year.

If you have a home care home maker coming in to help I-44 hours a week about 62,000 a year, if you have a home health aide who has a little bit more training.

And assisted living facility is going to cost about 54,000.

Now, this is the national average is in your local area.

It may be slightly different.

So it's always good to do the research.

But in the nursing home, $95,000, the year and a nursing home with your own road, you know, with no $108,000 a year that letter, the national averages.

So.

First of all, again, contact the area agency on Aging.

Asked about home and community-based services which may include adult day care, which is generally lot less expensive than paying for one-on-one care at home.

And find out.

You know what meals on wheels might be available.

Is there a someone who can do a medication reminders the way we can use technology to KET our loved ones safe at home.

We do some home modifications in and make sure they're living all on.

One foreign are navigating stairs.

If none of those, you know, you get to a point where that can't happen.

The first thing to do is really get the lay of the land of what's available close to where you live as the caregiver.

And I say that because when someone is living in a facility, you really need to be there every day to make sure that they're getting the care that you expect him to get.

And that they are, you know, sitting there waiting to go to the bathroom for 45 minutes out of that, they're getting that they're eating their food that, you know, they are close, haven't been lost.

You know, you just need to be on top of it.

And I have found a knife or to facilities that the people get better care when they know that family members are coming around.

The stress of We talked about this before.

We spoke a few years ago in 2018 about one of the things that you had said or written is that it's hard to be a caregiver.

>> If you don't take time to care for yourself and we know that the physical and emotional toll and maybe even social isolation that comes with caregiving for those who are doing that.

Talk to us about that and what tech makes should caregivers be practicing when it comes to self care?

>> Well, we always put our house at the bottom of the list because we think our loved ones are more vulnerable than we are.

And the fact is that we've caregivers, we are vulnerable who are very vulnerable because we are socially isolated.

We don't put our health appointments because we're focusing on them.

We often have so much stress that we have some unhealthy behaviors.

You know, we're eating a lot more.

Candy are drinking more alcohol, reading, more comfort food, banning some way to our health can be affected in so many different ways.

Those important take care of yourself.

It's ugly mentally and emotionally as well.

And for many people, spiritually is a big part of that.

Having support from other caregivers is a really key thing.

I think in terms of self care, I moderated Facebook group for AARP and the AARP Family Caregivers discussion Group.

We have about 18,000 members and so much of what goes on in that group, his support for each other.

You can do this.

You know, people will post I can't do this anymore.

All right.

So frustrated and I'm so stressed out and some burnout.

And now get that support to say, OK, how can we help?

What can we do?

And and you can do this.

You know that moral support and many carriers, just how isolated they don't have that kind of social support.

So you can at least find in an online group.

And that's definitely better than nothing on the others.

No, no, no, nothing that can replace a hug in person, but you can get some virtual hugs.

I'm taking care of yourself.

I learned a I told you a little bit about my caregiving story and there was a point where I was sober now and I was trying to make changes because I could recognize that I was burned out.

It was losing my temper.

I I'm not sleeping.

Well, I was exhausted all the time.

I was gaining weight.

There are so many various actors that I can tell he's having back pain.

And so I started thinking about okay, how can I take?

Here's my Southwest.

Still taking care of that.

And I actually went to the gas station when Darren and the car was on Tim's right?

Because I had and running around hadn't got gas.

And I was so hoping and hoping I make it without breaking down.

I got there.

I got asked.

And when I pulled out the gas station, I thought to myself, it was so interesting.

The currents that are on a full tank of gas.

Well.

That it right?

I I can't run on empty either.

And I expected myself to kind of run on fumes all the time.

Be just as efficient and run just as well.

That made it very practical for me.

I started thinking about the fact that care for myself.

It's not a selfish thing.

We often feel kind of guilty if we spent time on ourselves from what they're getting.

It's actually a practical thing.

I need to put feel it so I can KET going and take care of others.

So I started thinking about what fills And sometimes it's just but things like getting a cup of coffee here, texting a friend or going on a Facebook group that type of thing may be doing jumping jacks, having fresh flowers in the house, but maybe it's you need some you know, bigger premium Phillips by going to a class.

Listen to Evan are going to support group meeting going out to dinner with friends taking your loved one's out to dinner with you.

That just everybody's tanks, you have to do routine maintenance and go to the doctor and sleep sleep.

Sleep sleep is might top priority when you're caregiving.

Got to get that quality sleep.

And then exercise and eat well.

All those things, but also you have to have tuna and to me and to know does it break from caregiving when you're not taking care of anyone, you're just doing your own thing.

And that may be an afternoon a weekend.

It might be.

You know, I tried to get a week every year with either my best friend or my boyfriend would make sure I got a vacation.

You know, those things are critical because they make us better >> you know, that's such good advice.

And we think about how to do self care.

And the other thing that I was just thinking of all you're speaking as we love the people that we care for, obviously, but the relationship then becomes kind of lopsided that it becomes a dependency where where we we don't conversations with them because we're so consumed about making sure their meds are administered when they're supposed to be or that there are, you know, having the assistance to get to the restroom and being fed properly, that we forget that we are nurturing a relationship.

How do you maintain that balance of not being overly?

I'm concerned about the caregiving also humanizing the person to be the one who loves that makes sense.

>> Absolutely.

You know, and because we get very focused on taking them and making thing house, making sure they that they eat something.

Are they getting enough fluids, you know, taking care of the to the toy lighting in the restroom and the phasing in getting in the sleep at that time.

You know, we we we have to make it very clear intention to have quality time with their loved ones because that that relationship and and, you know, in the end, it actually behooves us as well.

I found that what film I take more than anything would be just getting a smile from my dad or hug and just laughing, you know, making a joke and laughing or singing together.

I did.

I was a music therapist.

So we sang all the Time News News music.

A lot.

I was standing again.

Remember, they are who they have always been.

There may be some layers of illness disease.

You know, that are are layered on top of who they are.

But they're they're that they are even if they have dementia.

That is still your parents, your spouse, your sibling, your and your uncle, your grandparents.

Remember all of those they've had in the past and try to tap into those, you know, looking at all the pictures together and, you know, sharing a laugh watching your favorite TV show.

My mom.

Nice to watch Downton Abbey.

Just like no side of town.

We want to watch it after that lead to bad and that was our thing, you know, and that was just the 2 best girls watching TV together.

You know, and I you know, with that was an hour when I wasn't buying your drink something or take a pen or whatever that scheduling those times and is actually really good idea because, you know, if we don't put it on our schedule and it doesn't happen.

And and and also bringing in outside so intergenerational relationships, make sure have great kids in the home, you know, take them out for family gatherings.

Yeah.

As even if it's once a month that can make a big, big difference in terms of connecting with them on a personal human level.

Yeah.

>> And finally, as we as we wrap me and I'm so appreciative your time, it is a financial toll that caregiving can take even if we've done our very best to make sure our assets and our finances are in order.

And by the time, maybe some of us get to that point.

We can't even calculate the cost of care ride because it is always mounting.

Talk to us about how that can be a frustrating experience and daunting experience and how perhaps even you personally had to deal with that and recover from that.

>> Yes, a financial challenge.

Those were huge for me.

And, you know, I need to to say that my parents didn't plan.

They had.

>> A long term care insurance.

My dad had a pension.

They will have Social Security.

Mom didn't have a lot.

It was something.

you know, those things.

They thought they had it all planned out.

But my dad had dementia and he did make some financial decisions and take some money out of their savings and investments that probably were the greatest idea before we kind of got involved in realized, you know what was happening.

That was all depleted.

By the time I got involved.

you know that the cost of care is I mentioned before.

Just unbelievable.

And most people don't have that much in their retirement planning or even long term care insurance isn't covered off because yes, they make a for a caregiver, but you have to have a roof over your head.

You know, I pay for the mortgage and a half and then utilities and the food in their clothing and and the Astros.

Anything that was uncovered by Medicare, all those things.

And that adds up.

And so you have to think about that aspect of it when you're planning for your own, you know, aging experience.

And when you're caring for someone.

Yes, he put up a pen puzzle together of thanks to help them mentioned the VA help dad had got 8 in attendance benefits from the V a maybe they have long term care insurance, maybe their savings, their home and community-based services that can help save money by providing maybe a meal or someone to come and clean the house or help with chores.

Transportation so cobble that together is a puzzle.

And as a caregiver, I didn't.

I once I figured out that feel you're taking it pretty good job of trying to take care of myself in those ways.

But I don't think I'd put enough importance on protected and taken care of myself financially and I took on debt in order to cover everything.

You know, I I my one regret is that I didn't spend the money to get a financial advisor for me.

My parents had a financial planner who would work with them and he did their taxes and help me with their things.

But I didn't have anybody looking out for my finances.

And I was so focused on their care.

And so, you know, one crisis after another in terms of health care and and then managing, you after my mom died and my sister died.

That I didn't take the care of myself financially.

So it's really crucial that get help from a professional help.

Make sure that you're protecting your own finances are taking good care of their loved ones as well.

Well, Amy, thank you so very much for your time.

If I can ask you to give.

>> Just a couple of main takeaways for someone either in who's starting their caregiving journey or maybe the they're ending their caregiving journey.

If you could talk a little bit about life after there are a what would you advise for those people?

>> If you're starting your care gaming journey, reach out and meet other caregivers.

It's really we learned the most from each other.

Join our Facebook group go to a local support group.

Talk to people in the waiting room at the doctor's office.

We really we get all the good tips from each other look into services that are available now and maybe you'll need them in the future.

So do some homework ahead of time as their loved ones need more and more care.

Make self-care part of your caregiving plan.

It is not optional.

It's not something you do when you get around to it, make that an actual part of your carrying plan, this going to take care of mom?

What am I going to have breaks of?

Who's going to take care of mom?

Well, I have right.

You know, when I get to go to my doctor's appointments, you know, I I didn't play as once a week.

That was my kind of thing that I really held onto those that took care of me.

Try to have some of those deal-breaker items that, you know, yes, there were times I couldn't go because there isn't a health care crisis or something, but make that a priority.

Not optional.

After caregiving.

You know, my dad passed away in 2018 and my mom and my sister had both already passed away.

So I you know, after more than a decade of very intensive care, giving and then a lifetime as it is.

You heard of caregiving for other people and different roles.

I had a much harder time adjusting that.

I thought it would.

And I think it was because when we stop caregiving, we lose our loved one who's passed on.

But we also lose his role that has become such an important part of who we are.

We wrap our lives around that and I planned everything around that.

And I made a lot of effort to bring joy to my grandma to my parents and my grandparents.

I then when that wasn't, they are I can have forgotten how to just create joy for And I had to wrap my mind around the fact that I did a good job and I have no regrets.

Well, thank you, Certainly this has been such an enriching conversation.

I hope help someone else.

>> As they take this caregiving journey along with so many others thousands, hundreds of thousands across this nation who are doing that incredible rewarding work.

Thank you so very much for sharing your story and your expertise with us.

>> Thank you so much for having me and be sure to visit a R p dot org.

Slash your giving for more information for family caregivers.

Thank you, Amy.

>> Thank you so much for joining us for connections today and KET an eye out on future programs connected to KET initiative called The Next Chapter which focuses on aging issues and resources to help us all navigate our golden years.

Stay in touch with me on the social media channels and download Connections podcast.

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