KET special report is funded in part by a grant from the Foundation for a Healthy Kentucky.

>> Welcome to the Caregiving Experience, a KET Special Report.

I'm Renee Shaw, and we thank you so much for joining us.

Caregiving for an older loved one can be both deeply meaningful and intensely demanding.

While it can be a rewarding experience, it can also be a stressful role that can strain family relationships.

Over the next hour, we'll hear from family caregivers as they share their personal journeys, what they've discovered along the way, and strategies that help navigate the demands of caregiving.

Here are some of the voices that you'll hear from tonight.

>> It was a tricky, devastating, sad, hopeful, inspirational time.

>> One of the hardest things is I now have become a mother to my father.

>> An average long term care facility is 18 to $24,000 a month in our region, and most people cannot afford that.

>> There are two young women.

They got enough to do besides worrying about an old woman.

>> We've been able to do for her what she did for us.

Really.

>> Our relationship has changed.

The tables have turned.

>> You almost have to schedule the self-care in order to get what you need.

>> Really?

The first thing is asking for help.

>> According to AARP and the National Alliance for caregiving, 28% of adults in Kentucky almost 1 million people are family caregivers, providing largely unpaid and unsupported care to older parents, spouses and other loved ones.

As the population ages and life expectancy increases, the number of family caregivers is expected to rise.

The growing demand for care is further fueled by the high costs of long term care facilities and the limited availability of affordable elder care options.

But the toll on family caregivers is great financially, physically, and emotionally.

Nearly a third of family caregivers in Kentucky report moderate to high levels of emotional stress.

The challenges that occur while caring for a loved one can bring both deep connection, along with moments of difficulty.

Our Kelsey Starks introduces us to a couple navigating these changes in their relationship, one step at a time.

>> Robin and Albert Sarkis were the kind of couple you would rarely find sitting still.

>> We were very active.

We went to a lot of bluegrass music festivals in Florida, and we had a camper.

You know, we did everything together.

Worked in the yard, cleaned the house.

>> I was very athletic, very active in golf, football and basketball and hockey.

>> I always told everyone I was a kept woman because he took very good care of me.

>> But in March of 2022, everything changed.

>> A neurologist in the ER says he has a meningioma brain tumor.

>> They diagnosed it with that.

>> And showed us, you know, the images and you know, we were just like.

>> It was frightening when I saw that.

I'm like, wait a minute.

>> Shocked.

>> That's me.

>> Yeah.

>> It wasn't cancer, but the brain tumor had to be removed.

But that surgery caused additional damage.

>> It was it was quite a mess in there.

And after they did that, it apparently the left side of my brain was, I guess, damaged.

For the sake of another word.

But when I came out of there, when I came out of surgery, I had no use of my lower extremities or my right arm.

>> They are like, well, he's going to need to go into a skilled nursing facility.

And I just broke down because I'm thinking, what does this look like from here on out?

>> Life looked different not just for Albert, but for Robin, too.

>> After a surgery, you know, we were kind of blindsided and didn't know exactly how to navigate this new life.

And there was no playbook.

I had to get this ramp.

I don't know what I'm doing.

You know, getting to the bathroom, getting back in bed.

I had to order this hospital bed.

I mean, there was so much.

>> They made the decision to move back to Louisville from their home in Florida.

To be closer to family.

Here they found great resources like UofL Health's Community Fitness and Wellness Center, where Albert gets physical therapy once a week.

He's even starting to play his beloved guitar again thanks to music therapy.

But all of that adds up in time and money.

>> I had to give up my job 27 years as a public school teacher at a school where I loved.

I loved my colleagues, and now I am a full time caregiver.

I have to find health care for the first time and that's very expensive.

>> With the help of friends, family, doctors and more, Albert is making enormous progress.

He says he owes it all to his attitude and to Robin.

>> I am going to recover from this.

I am going to be able to walk again.

I am going to be able to use my right hand again.

I just need to do as much as I can for myself to take that burden off of her.

>> Looking back now, Robin says her best advice for anyone who finds themselves in the position of a caregiver is to find your support system, like the friends and family who have helped them along the way, and remember to also be a caregiver to yourself.

>> Take care of your mental health.

If I'm not the best person I can be, I cannot take care of him.

And you know I'm his lifeline.

Our relationship has changed.

Before surgery, you know, we were this lovely, connected.

Couple.

And you know where we were, 50, 50, you know, and we did things together, and we just worked awesome together, you know, bouncing off ideas, navigating.

We traveled and we took care of each other.

Now I'm his advocate.

I'm his protector, and I'm his voice, and that's where I feel like everything has changed.

The tables have turned.

>> Robin says she still often feels overwhelmed and even guilty at times, but their collective feeling is being grateful.

>> I mean, we are very blessed people, even though we've had this, you know, unfortunate situation occur.

You know, we are very blessed.

We have a wonderful family, awesome friends.

We if there's a problem, we work together on how we're going to solve this.

So yeah, I mean, we are we are very blessed.

>> For KET.

I'm Kelsey Starks.

>> Caring for a parent can be an incredibly meaningful experience filled with love and purpose.

However, as adult children step into the role of caregiver, the shift in the parent child dynamic can be challenging.

Our Christie Dutton talked with Doctor Elizabeth Rhodus, an assistant professor at the Sanders Brown Center on Aging at the University of Kentucky, about her own experience as a caregiver.

>> Doctor Rhodes, you have dedicated your career to this, and you work with aging adults and their caregivers, but you also have personal experience with this, too.

Do you mind sharing about that?

>> Sure, absolutely.

I was exploring my own path as an occupational therapist.

I was down in Florida.

I grew up in Kentucky, but flew the coop and went to Tampa for a little bit.

And then I received the phone call that no daughter wants to have and that or receive, and that my mom had cancer.

And so we started to navigate that experience.

I was 24 at the time, so she was in her mid 50s and turned out she had stage four pancreatic cancer, which didn't go well and that I wasn't able to continue my career path in Florida as I had planned.

So I moved back home and I lived in her basement.

I had two little brothers that were both still in high school and one had special needs.

So I found myself as a newlywed living back in my mom's basement.

Even though I had established my career and really had to think about what was my place and what was my role, and continuing to try to maintain my role as an occupational therapist, working clinically, supporting my little brothers as a sister, but also filling in the places where they needed that maternal support and taking care of my mom.

As she faced the changes in the losses related to having pancreatic cancer.

Pancreatic cancer is tricky because a lot of times you only end up with a couple months.

She actually was able to get into a clinical trial with vaccines, and she had stage four pancreatic cancer for 18 months, which is really unheard of.

But that also meant that we had stage four cancer for and it was grueling.

And she had she couldn't eat for the last eight months of her life.

She had TPN nutrients.

So all of her IV or all of her nutrients went through an IV.

And it was a lot of care, tasks and caretaking.

But she was determined to live as long as possible to support my brothers and help get them through high school.

So it was a tricky, devastating, sad, hopeful, inspirational time.

>> What's something that you wished you knew then that you know now?

>> If I could go back and tell myself anything, it would be to slow down, to take the time to just be in the moment with my mom, or with my brothers, or even myself.

Because I was running, I was grieving, and I was angry.

I was lost and confused and things were chaotic.

But looking back, time went on.

And where healed or healing and if you ever heal from that.

But if I could have taken just, you know, a couple minutes here and there to just sit and be with her, to hold her hand, to just sit and be with myself and be okay in that moment.

I would have done that.

>> Did you feel that she also needed that slower time with you, too?

>> Absolutely.

I think about a story or a time as an occupational therapist.

My clinical day job was to help people with everyday tasks like bathing and dressing and toileting.

From a technical standpoint, I knew how to get her safely in the shower, get her washed and get her out, and there was one day that we were doing that in the hustle and bustle of just get her clean.

And she looked at me and said, it, Elizabeth, just let me have a moment.

And at that moment, I had to sit down on the toilet and say, I'm here.

You take as long as you want.

She only took eight minutes, but she sat there in quiet and peace, and she was glowing.

When she got out of the shower.

She needed the time, and I needed that strong reminder that it's her life to.

And not just my mission and my path to provide the best care that I thought I was giving her.

But it was a joint story and a joint partnership.

>> Talk a little bit about how the relationship between you and your mom evolved over those 18 months.

>> So at first we found out that she had cancer and it was like, okay, we're going to do everything we can.

We're going to we're going to go in the clinical trials.

It's going to be rough to get through chemo, but we're going to get through it and we're going to move on.

And then after a 14 hour long procedure, when the surgeon came out and said, there's no way I can get all the cancer cells, then that shifted.

But it shifted in a way still with optimism and hope that it was going to be okay.

We're going to get through it.

And so my natural instinct was to push.

And my mom was a daughter of Italian immigrants, and they came during the depression.

And she grew up in Detroit.

So she had some angst about her.

Right.

And I have that similar angst of like, we're going to work hard, we're going to do it, we're going to get through it.

But over time, having to recognize that getting through it wasn't beating cancer.

>> That was tough.

>> And it shifted my.

It shifted my role in becoming focused on comfort and finding harmony in the moments where she was okay and my brothers were okay and I was okay.

>> What is one important lesson that you learned through that personal experience that you now can pass on to other caregivers that you encounter in your job now?

>> Yeah, I work with lots of caregivers now, and I try really hard to empathetically express several different components of this experience.

First, that this is probably the most difficult part of your life when you're losing someone, or this the roles that you've experienced and the support that they've established and that they've provided for you for so long, and you're having to re-identify yourself and understand the new roles, it's really hard and not something that many people encounter more than once.

So appreciating the fact that this is a really hard time, but also providing some strategies and thinking about the fact that we we will get through this.

There are things that we can do like mindfulness, like being present in the moment by trying to understand the the landscape and the chaos, but know that the chaos is going to settle at some point as well, and to give hope.

So recognizing that things are really hard right now, delivering the strategies that people need to help get through this really hard time and to help give them some hope that things are going to be okay and that it doesn't last forever.

And that time will pass, but things will be okay.

>> Being ready for the unexpected emotions that come with caregiving can make the journey a little easier.

Our Christy Dutton speaks to a psychologist who specializes in aging and dementia about common emotional challenges caregivers face, and offer some practical advice for navigating these feelings with strength and compassion.

>> We're talking about the caregiver and care recipient relationship.

A lot of times, that's caring for a spouse or caring for a parent or grandparent.

How do you often see that relationship evolve over time?

>> Yeah, it's a it's an interesting change in the relationship, right?

Because you have this existing long term relationship, whether a parent or a spouse.

And the thing that's tricky about it is no one tells you in advance that you're going to become a caregiver.

It just sort of slowly happens over time, and you find yourself taking on things that the person used to be able to do for themselves very easily.

You know, maybe managing money or medications or even just keeping them safe in the home.

And so you get a mix in this relationship.

You have the old part, and then you have this new piece that comes in and it really starts to make a shift in those relationships.

>> Yeah.

And for people caring for an aging parent, that is a bit of a role reversal.

How do you see those caregivers coping with this new role, this new identity?

>> Yeah, I think that's a good way to put it.

It is a role reversal.

These are people who took care of you, who were responsible for you for many years, and then you had this transition period where you're on your own, and then slowly you find yourself having to take take on the care of them, maybe making decisions for them.

Again, no one tells you in advance you're going to be doing this.

And so a lot of times people wonder, am I doing too much?

Am I doing too little?

You know, how much freedom should I be restricting?

How much should I let them continue to choose?

It can be really disorienting for them.

>> Yeah, and it becomes parenting your parents sometimes.

Yeah.

And then when for those caring for a spouse, how does that relationship evolve?

What are some of the emotions that have to be dealt with in that arrangement.

>> Yeah.

So there's a little bit different sort of feel to it when it's a spouse.

Right.

So you're sharing life together in the same home typically.

And again you're having to take on things that they used to be able to do for themselves.

And what can be really acute in this type of situation is that there is a lot of fear.

There can be a lot of sadness, fear about what is this mean?

What does this mean for our future?

Sadness about the changes that the person is experiencing.

And what we sometimes see is even that maybe once a diagnosis happens, maybe a diagnosis of Alzheimer's or another dementia, that people start to grieve even while the person is still living, grieving losses they've already seen.

Maybe they had plans to retire together and do certain things, travel, and maybe they feel like they can't do those things anymore.

And they start to grieve that loss.

And they also grieve things that they see coming down the road.

>> Okay.

And you called this pre-death grieving.

Yeah.

I'm sure a lot of caregivers feel this and they don't know the word for it.

So so keep on describing that a little bit.

>> What you're seeing in Pre-death grief is different than the usual way we think about grief is when there is a lot of sadness and loss after the person has passed away, and what we see in dementia, caregiving and other terminal illness is that families begin the grieving process even while the person is still living.

>> And a lot of times I hear from caregivers, once the person they're caring for has passed, that grief feels different than they might have expected.

>> Yeah, so what some people experience and there's good research to support this as well, is when people have been grieving throughout the caregiving experience, sometimes when the actual passing of the person happens, they don't feel the same level of grief as they expected to.

Caregiving can be really hard, and sometimes people feel a sense of relief that that part of their journey together is finished and that can prompt a whole new set of emotions, you know, guilt.

Why do I feel relieved when I've just lost my loved one?

But they've been on this very difficult journey and they again, they've been grieving for a long time.

And some of those people will actually experience less intense negative emotions once the person actually passes away.

>> Okay.

For caregivers, where do they go?

Who can help them kind of navigate these emotions they may feel?

>> Yeah, it's a great question.

I think there are informal means and formal means.

I think the biggest thing that I see is that family caregivers tend to be more isolated, right?

They might be overwhelmed by the tasks of caregiving.

They don't feel like they can leave the person alone.

Some of them feel ashamed about the situation.

They don't want to tell other people.

So for those people, what I encourage is really just finding one person that you can trust to start sharing what's going on so you don't feel so alone.

You don't feel so isolated.

On the formal side, you can reach out to different organizations in the community, maybe a counselor.

Certainly the Alzheimer's Association, the Teri Garr center with U of L, there's plenty of places where you can get support on the caregiving journey.

The point is to find some sort of outlet to share what's going on.

So you're not so alone and isolated, and that can sometimes lead to both emotional support and physical support, helping with the person, maybe some respite care and taking some time so that you can get out and doing the things that you need to do.

>> Yes, because both are very important.

>> Absolutely.

>> Doctor, thank you so much for all the work you do, and thank you for your time today.

>> Thank you.

>> An increasing number of caregivers are finding themselves caught in what's called the sandwich generation, balancing the demands of caring for aging parents with the responsibilities of raising children.

In Kentucky, nearly one third of caregivers are in the sandwich generation.

This growing trend is placing new pressures on individuals who are juggling the needs of multiple generations, often with little support.

Our Laura Rogers shows us how one sandwich generation household manages this important, yet sometimes overwhelming role.

>> I've seen my mother take care of her parents, and I've seen what we had to do with my dad's parents, and I knew the struggle that it would be.

>> But it was a challenge.

Jeremy Vance was willing to accept to support his long time partner and fiancee, Melissa.

>> We are middle aged, but we're also trying to raise our 13 year old daughter, while now trying to care for my 77 year old dad.

>> Melissa's dad, Don, has advanced dementia and needs around the clock care for daily needs like hygiene and meals.

>> Fruits, and a granola bar.

>> That's one of the hardest things is I now have become a mother to my father.

>> Jeremy and Melissa are members of the Sandwich Generation, adults who provide care and support for both their aging parents and their own children.

>> Well, it changed my daily routine because mostly I'm just a normal teenage girl.

I go to school, I do my school work, I have homework.

>> Lee now also helps take care of her grandfather.

>> When you have somebody in the state that my dad is in, it's 24 hours a day, seven days a week.

>> And that comes with sacrifices.

Life runs on a schedule.

>> That his towel has closed.

>> With less time for things others may take for granted.

>> And we can't just pick up and go.

>> One of us have to stay here.

We don't do that.

Family function together three times in the last 14 months, three times.

And I can tell you each time the three of us have actually been somewhere to sit down and have dinner together.

Three days in the last 14 months.

Other than that, I take our daughter somewhere.

She takes our daughter somewhere.

>> It also leaves less time for hobbies and interests.

>> He has pretty much stopped everything to help me take care of my dad.

He's not on the road working anymore.

He's staying around here.

He fishes.

He's not able to fish anymore.

>> Fortunately, Melissa works from home and her employment wasn't affected.

But the cost has been substantial.

>> We've got thousands of dollars wrapped up in attorneys and care and supplies that luckily we had put back.

>> They've also spent money on modifications making their home accessible with wheelchair ramps and a stair lift.

>> Not everybody qualifies for Medicaid.

Medicare does not cover long term facilities.

The cost, an average long term care facility, is 18 to $24,000 a month in our region.

Most people cannot afford that.

>> They say it's hard for others to fully understand what it's like to juggle the demands of being a caregiver and a parent.

>> Unless you are living it, have lived it.

You have no idea that it's just it flips your world upside down.

>> The mental, the physical, the financial.

Every bit of it is 100% demanding.

>> For KET.

I'm Laura Rogers.

>> The responsibilities of the sandwich generation can strain even the strongest family relationships.

A social worker in the field of caregiving offers thoughtful strategies that honor and protect those bonds with loved ones, no matter the generation.

>> We talk about the sandwich generation.

These are people who are taking care of an older adult and their own children at the same time.

Why are we seeing more and more of this?

>> I think there's a lot of reasons.

I think people are living longer.

I think that people are having children later in life.

I think that there there are a lot of factors here, and it's just going to depend somewhat family to family and person to person.

>> So this is becoming more normal.

And a lot of people find themselves in this situation.

But there are extra challenges when you're caretaking for two separate generations.

Talk about what those challenges are, whether it be physically or mentally.

>> Yeah, well, no matter who you're caring for, whether you're caring for just children, just your parents or both, they're still only 24 hours in a day.

So, you know, you only have so much time.

And if you're stretched thin and caring for your children, you're trying to go to your extracurriculars, you're working, you're managing the home.

You're trying to keep it clean.

Everybody's got to get fed.

And then you add in that extra element of being a caregiver for for an aging parent, that that's another thing on your plate.

That's another challenge for you.

So you kind of have to rework your whole life and your structure on how are we going to fit this in, how is this going to now become part of our norm?

What is this going to look like for us?

>> Well, let's talk about the caregivers children, because, you know, they're caring for their children and an older adult.

What are some common mistakes made with that relationship with their own children when they're in this sandwich generation?

>> You know, I think it's really it's hard because you as an individual, when you're a caregiver and you're just trying to make it through the day, it's really hard to kind of sit and reflect.

What has my child seen today?

What has my child been experiencing?

How is this impacting them and their development and their attachment to me, their attachment to their grandparents?

How is this working and on them as an individual?

So, you know, I think forgetting to say, okay, I wonder what this is going to do to you is something that's hard for families.

So I definitely strongly encourage counseling, and speaking to your child's school is a great way to get in with a counselor.

Let them know what's happening.

Hey, we've had a different family dynamic change.

This is a change.

Let me know if you see anything happening and then we'll we'll address it as it comes.

So it's kind of letting these other people in to your circle and saying, I could use some help.

I could use some extra eyes that would be helpful for us.

>> Okay.

That's great advice.

Okay.

What about the caregiver spouse.

You know, that is a relationship that can suffer sometimes in these caregiving arrangements.

What is your best advice there?

>> Communication.

Communication communication I'll scream that from the rooftops.

So letting your spouse know this is where I am.

I'm struggling with this.

When you're a caregiver, you may kind of mourn some of this loss of the individual that that you knew and these changes and these adjustments, and that's really hard to deal with emotionally.

So letting your spouse know this is what you're struggling with, this is what you're feeling.

Letting them in allows them to help you.

If you don't let them in and you don't tell them where you are with things, then they don't know how to help you.

They don't know.

This is the kind of support that my spouse needs.

This is how I can help them.

>> Yeah.

And for this caregiver, you know, you're doubling down on a lot of the stress, mental, physical, even financial stress too.

But there can be positive aspects of it.

Talk a little bit about ways in which caregiving in the sandwich generation can benefit the caregiver.

>> Yeah.

You know, you're going to bring your family a lot closer together.

You're going to spend more time with your close family friends.

You're going to spend more time with your parents.

You may spend more time with siblings, and that can foster that relationship and bring that relationship forward.

If you are opening up communication with your spouse, then you can continue that even if you step out of caregiving role.

So that's practice.

You've been doing this practice, you know, in being open with each other emotionally, and you've been doing this practice in reviewing your children and what's happening with them emotionally and what supports they have.

So you can kind of keep those in place as well.

So it can be a very eye opening experience.

It can be a really healthy experience to be a caregiver in many different ways.

>> Okay.

Well this is all really great advice.

Caitlin Zoller from Norton Healthcare, thank you so much for your time.

>> Thank you.

Thanks for having me.

>> Sibling conflicts are unfortunately a common challenge when caring for an aging parent.

Resentment and frustration can easily build up, especially if one sibling feels like they're shouldering most of the caregiving duties.

Our June Leffler shows us one sibling pair that's making it work with mutual respect and support.

>> Where'd you go?

You went to Jamaica?

>> Yeah.

>> In Canada.

>> Canada.

>> And then got a divorce and went back to England.

>> Back to England.

>> This globetrotting Irish woman eventually settled in Louisville, Kentucky.

>> You were going to stay here for how long?

>> Two years.

>> Two years.

And how long did you stay?

>> Oh, 20 something years.

>> In her words.

She wasn't going to leave once her grandchildren were born.

>> Okay.

Yes, ma'am.

Growing up, she actually lived right next door to us.

Always said I wanted my Nana to live with me when I was older.

In my mind, I think it was with a husband and maybe a kid or two that she was helping out with us.

And now it's just a little bit different.

So.

But we've been able to do for her what she did for us.

Really.

>> Hannah.

Their Nana now lives with these twins.

>> Because, I mean, they're two young women.

They got enough to do besides worrying about an old woman.

You know what I mean?

But they do.

They take good care of me.

>> Hannah has COPD.

>> She's on oxygen 24 over seven.

Also, throughout the time that she's been in our care, she's had, she was diagnosed with small cell lung cancer.

So there's been times where I've been rolling her in a wheelchair and had her oxygen and trying to, like, navigate getting through a hospital and getting through doctor's offices and through the doors and such.

And I, I'm a pretty good driver, but that's quite a lot to do.

>> Along with doctor's visits is daily care.

>> Whoever gets up first, I usually come downstairs and do her morning breathing treatments and get her her first piece of medicine and such, and as well as throughout the week, we divvy up doing her showers and changing her sheets and things like that.

Our mom will come and do a day as well.

>> Living under one roof has its pros and cons.

>> Well, not only like us being able to be close to her, but her close to us, so that like if she does need something, she can let us know.

But also that we can monitor her throughout different things.

Sometimes it does just feel like work after work.

And then even being somewhat hybrid, working from home, it's just like I'm never really leaving work.

>> The sisters share all duties according to their own work schedules.

>> For me, I've had to take on more at work.

So then it does fall on on Kylie to take on more at home.

So trying to find that balance on like, what can I do on the weekends that allow us to be more prepared throughout the week?

>> The sisters are in constant communication, not just about their Nana's needs, but their own needs.

>> They don't argue.

I never hear them argue.

>> Yes you do.

She does.

She comes down like, are y'all arguing?

>> But I don't hear them arguing.

>> Oh, yeah, no we don't.

Yeah.

>> There's no war going on here.

>> We are not irregularly close.

But just differently close than other siblings and I would say even other sets of twins.

I remember in high school, like Kylie said, we went to school with quite a few sets and they would, like get into arguments and be like, I'm not talking to my sibling for, you know, this whole week.

And I was like, wait, that's an option.

A couple weeks ago, we had a conversation.

About, you know, feeling appreciated and what that looks like for one another.

And, and I kind of new season of things what each one of us needs.

>> Clearly that loving familial bond has translated to a peaceful caregiving arrangement for KET.

I'm June Leffler.

>> By working together, siblings can provide emotional support to each other, prevent burnout, and create a more positive experience for both the caregiver and the parent.

Our Christy Dutton talks to a caregiving expert and social worker about common sibling conflicts and proactive ways to avoid them.

>> Kelly Parsons In your work, you work with caregivers and their families.

One common conflict you see is that sibling relationship when caring for their parent.

Tell us, what do you see often and and why that can cause so many problems?

>> Right.

So sometimes you can look at communication where it's clear communication and everybody is on the same page and knows what their roles are.

And then you can also have very stressful communication.

And that's when the needs of the family aren't being met because they're not being said.

That's when people kind of have covert ways to express their needs, or passive ways to say how they're feeling.

So for family dynamics and caregiving, I think everybody coming on the same page and knowing that they need clear communication really affects in a positive way their parent.

>> Okay.

So I'm hearing communication.

Yes.

You know, good solid communication as a common theme here.

So with that primary caregiver, a lot of times feelings of resentment can come up that they're shouldering most of the responsibility.

>> Absolutely.

>> What can they do to avoid that resentment.

How how do you ask for help?

>> Yeah.

So again that clear communication.

But there's also lots of tools that can help organize that ask because it can be it can feel like a monumental ask when asking to help with caregiving.

So the National Institute on Aging has incredible resources.

They have caregiving worksheets.

So you can think about how you're going to caregiver.

Are you going to help with financials?

Are you going to help with medical, with calling in the prescriptions every three months to make sure they get delivered?

And that kind of gives you a roadmap to start with the caregiving tasks.

>> Because different siblings have different strengths.

Exactly.

Somebody may not be in the same state.

So maybe handling finances or calling and making appointments, you know, so everybody can pull on their own strengths.

What other roles do siblings sometimes fall into?

>> So it's really kind of the family dynamic of the household growing up is what they fall into.

So there could be a golden child who, you know is doted on, can do no wrong in the family, and they might be the ones that are won't accept the diagnosis or are the ones coming in and saying, well, mom seems fine.

So because of that, I think it can lead other family members to kind of go with what they see.

You know, the favorite child, if you will, for lack of a better word.

Well, if they think that, then that must be true.

You can see that a lot.

>> So let's say we take a family where we have some of these sibling conflicts in the past, but they have to move forward with caregiving.

What should they do?

Day one?

What can they do to make what could be a bumpy ride as smooth as possible?

>> Yeah, and it definitely is going to be a bumpy ride.

I think going to the Naia National Institute on Aging and getting those worksheets out and seeing really where to start and what questions to ask can be very, very important.

Also, knowing your resources and knowing what's available to you.

So there's the National Family Caregiver Program that offers monetary support for supplies or respite care if you need it.

So really looking at the resources that's available and and designating each other okay, you're going to look at the National Institute on Aging.

And I'll look at the area on aging, the local area on aging.

There's also civil and legal agencies that will help maybe prepare a power of attorney.

Things like that.

So really, I think understanding and you can, you know, it could be in an email.

This doesn't have to be face to face communication.

It could just be the primary caregiver laying out an email with all of the different resources that they've located and say, hey, I need help.

And so I think really the first thing is asking for help, and it's not necessarily help for you, it's help for your parent.

And I think if people can really stop and think about their and this moment in their adulthood, trying to keep their parents safe and independent and with them as long as possible, if they start there, then I think that they might be able to find some common ground, but it really is that common ground that you need to find, and that common ground is there in the parent with the diagnosis.

>> Kelly Parsons, thank you so much for your expertise and for giving us this great advice for those of us with siblings, and even just keeping that communication line open to help with caregiving.

>> Yeah.

Family dynamics can be really, really difficult, but family relationships can really grow and change as they progress into caregiving.

Dyad.

Yeah.

>> Respite care provides short term relief for primary caregivers, which can give them time to recharge and take care of themselves in Northern Kentucky.

One organization provides financial support to make respite care possible.

Our Emily Sisk stopped by the Area Development District's annual caregiver appreciation event to learn more about the program.

>> Kathy Nafus is the caregiver for her sister, who has a disability and her 94 year old mother.

>> My mom is not supposed to be alone.

She has mobility issues and so you can't just go away and leave her without somebody to look in on her.

>> Nafas has help from other family members, but she takes care of grocery shopping, laundry, doctor's appointments, and more for her mother and sister.

>> You almost have to schedule the self care in order to get what you need.

And I have two other sisters that help, and with three of us trying to take care of two people, it's very stressful.

>> And Shirley Hudgins, who also lives in Northern Kentucky, cares for her husband, who has Parkinson's.

>> Every day we, you know, work on trying to keep him from falling.

That's the biggest thing.

I'm very fortunate that, you know, I don't have any ailments of my own.

>> So what resources are available to help caregivers like these women?

The Northern Kentucky Area Development District is one example.

They participate in the National Family Caregiver Support Program.

Through this program, caregivers can find another family member or friend to provide respite care.

Then, that individual can receive pay for up to 16 hours a month.

>> That gives me freedom to do what I want to do.

And then the friend will fill out a little time sheet and mail it in, and they get paid a certain amount.

For helping out.

>> For Shirley Hudgins and her husband, they chose to get help from a family member.

>> At this point, my husband only allows my granddaughter to come and do that.

He's comfortable with her.

>> Heather Hardin, who manages the caregiver programs for the Area Development District, said it can be difficult for caregivers to find time for themselves.

Having an additional family member or friend to step in, even for a few hours can be a big relief.

>> Often, they don't want to leave their loved one alone and go do something that they want to do.

They're not going to be able to continue caregiving for their loved ones if they are burnt out, unhappy, depressed, just worn and broken down.

We got to make sure they're taking their breaks, and when they take their breaks, they're doing something they like to do, or at least benefiting them in some way, whether it's going to the doctors or grocery store.

If they like to do it, let them do it.

>> Sometimes it's just going shopping by myself, just to have time to look around and do what I want to do without having to hurry back for a doctor's appointment or something.

>> As long as I, you know, have some outlets where I can go out with friends or, you know, go play cards or go to a meeting or something that gets me through the week.

You know.

>> Hardin said, as time goes on, resources like respite care are becoming more and more essential.

>> Our population is increasing with older adults, and it's just going to be more of a common occurrence is everyone's going to either be caring for somebody at some time.

They're only going to need more caregivers, whether they're family, caregivers or professional.

We're only going to need more.

>> While this respite care program only provides pay for 16 hours a month, many caregivers like Cathy Nafas rely on that break.

>> You'll take anything you can get.

>> For KET.

I'm Emily Sisk.

>> As the demands of caregiving grow, so does the need for supportive resources, practical tools, and strategies to help caregivers navigate family dynamics and strengthen relationships throughout the caregiving experience.

Doctor Wayne Tuckson talks with a team of caregiving professionals who offer some valuable insights and advice.

>> We have assembled a panel of leading caregiving experts dedicated to empowering and informing caregivers.

They are.

Beth Pace, Beth is the guide program manager at the University of Louisville Trager Institute Optimal Aging Clinic.

Charles Williams.

Charles is a longtime volunteer with AARP of Kentucky.

Regina Goodman Regina is the caregiver support coordinator and dementia care specialist at the Area Agency on Aging and Independent Living for the Bluegrass Area Development District, and Amanda Davis.

Amanda is the caregiver coordinator at the Area Agency on Aging and Independent Living for the Kentucky Hannah Regional Planning and Developmental Agency.

Welcome to you all, and thank you for being with us today.

Let's start off with this.

I want you to name for me and Beth.

We're going to start off with you an essential resource or two that every caregiver of an adult adult should know about.

>> Well, I think it's important for every caregiver, like you mentioned, to not be doing this alone.

And so all of us are involved in different caregiving resources.

But I think finding support groups or, you know, case management, someone that can kind of walk along that journey with you is so important.

>> Regina.

>> As far as a local resource, I would recommend your local area agency on aging and independent living.

There are 15 throughout the state.

Within that agency, you are going to find resources to help with care, caregiver programs that help with respite and the purchase of supplies.

Our Aging and Disability Resource specialist will help with the Medicaid waiver process.

Also, referrals to home delivered meal programs and other home care type programs.

They will.

They will screen the individual as they as they call and will make those referrals for them.

>> Okay, Charles, what are you guys doing?

>> We have a lot of initiatives, and one of those main initiatives is caregiving.

And obviously from caregiving, we branch off into all aspects of the caregiving challenge.

From there, we have identified a centralized location where one can go to AARP for caregiving.

And from there, I like to use the analogy.

It's like Dorothy walking over the land and seeing Oz.

It opens up a whole bright access level of access to the many things that AARP offers for caregivers.

>> Sounds good.

Amanda.

>> I'll echo a little bit of what Regina said.

Your local area agency on aging.

That office will give you the referrals to the programs that the area agencies on aging have, but they'll also refer you to other resources that we may have in our area.

So, like we work with the Trager Institute for Support Groups and Counseling Services, and we can refer back and forth to each other.

But other agencies like the Jewish Family Career Services, the Legal Aid Society, there's so many other agencies that help caregivers help navigate that, that season of life that they're in.

And so we will oftentimes work together.

>> When you just have that one person, there's one adult child taking care of an adult parent.

Do they require more resources, less or different resources than when there are two children taking care of the adult?

>> Sometimes they can need a little bit more support just because they don't have that additional sibling or someone to help them.

But one of the main things that we try to tell caregivers, whether you're doing it by yourself or you even have a support within your family, is you have to take care of yourself first.

And so we really try to encourage our caregivers to take advantage of any, any respite programs or caregiver support that they, you know, that they can.

We want them to be the best caregiver that they can for their loved one.

And so that is going to mean they're going to have to take care of themselves.

So utilize that National Family caregiver support program, that respite, have someone come in and stay with your loved one while you go to your own doctor's appointment, or have lunch with a friend or or whatever that break looks like for you.

We really try to encourage our caregivers to do that.

>> Given what Regina just said, what do you find is the most unused and that program that is running under the radar that most of us don't know about, that would benefit caregivers?

>> I think the support groups are maybe the least utilized, and the caregivers who do come consistently to support groups say they couldn't live without it.

You know, it's it's a very meaningful and helpful program or piece of our program, but something that oftentimes caregivers are either resistant to start or just, you know, finding the time to show up because it is at a scheduled time can be really hard.

>> Regina, what do you find that the thing that we just don't understand or utilize as much as we can.

>> I think sometimes people are afraid to utilize services.

I have had several people when they when they learn about what I do, they'll say, oh, I wish I had known about your your program.

You know, three years ago when I was taking care of my mother.

So I think that it's just encouraging caregivers to to seek those, those resources out.

And sometimes people think, well, I don't know if I need that, but, you know, let somebody else take that spot or use those funds for that.

But I always try to encourage caregivers know you do need that break.

You do qualify for this.

You can utilize.

>> Something else too, that they they will often be afraid of because if if they know the moneys from the federal government, I've oftentimes have had a couple of people, well, I'm not going to take any money from the government.

It's going to mess up my income or it's going to.

I just don't need that.

I'm not going to take anything from them.

>> So since you brought it up, does accepting any of the resources we've talked about so far, does it impact any other aid someone may get, either from the state or from the federal government?

No.

Is it going to increase their tax load?

>> No.

>> Okay.

>> I like I like to take a step back to the fact that a lot of people don't go after the resources because, number one, they don't even know that they're caregiver until they're knee deep into the business of being a caregiver.

Once they figure out where they are.

And the dire straits are in that caregiving places on a person financially, time wise, or whatever the case may be, then they start asking questions.

>> Then they start calling places like the Area Agencies on Aging or the Trager Institute.

And they're they're at their wit's end at that point, and they're pulling their hair out and they don't know what to do anymore.

>> What does it look like in rural areas versus being in an urban area?

And what is that difference?

Yeah.

And what are the opportunities?

>> Rural areas are much more difficult because the resources are not available in rural areas as they are in the urban areas like the Louisville Metro or the Lexington area at and at the Teri Garr in in Lexington, we do have rural counties and we service those rural areas.

But one of the services that lacks desperately in the rural areas is respite.

There are not.

>> What is respite care mean?

>> Respite is giving the primary caregiver a break.

So whether you need to go to the grocery store or you want to go get your hair done, you want to go get your nails done.

Whatever type of break you need, you just want to sit and read for the day, whatever, whatever fits you the best.

And so respite in the rural counties is not available because there are not agencies in those areas to provide those services to the people who live in rural areas.

And that's very difficult.

>> You wanted to add something in there?

>> Yes, a couple things.

So I'm in the bluegrass area, the Lexington area, and we do have an option to provide respite to the rural counties because we offer a reimbursement option.

We have an agency that provides respite, or you can pay a friend or family member to provide that respite for you.

And then we reimburse the caregiver.

Since we're talking about resources, I just wanted to mention a couple that could aid in those those conversations and preparing those living wills.

And one is called five wishes.

This is an actual paper document that we have available at our agency, and Amanda does as well.

And that is a paper document that the person can, you know, specify, you know, who they want to, you know, help in their care and all of those types of things.

And then we learned about another resource at an at a national conference a couple of years ago called Honor My Decisions.

And that is kind of the same thing, but it is more electronic, like you can do it electronically instead of trying to keep up with that paper.

And, you know, in an emergency situation, those.

>> Are a couple.

I'm sorry.

Go ahead, Charles.

>> And one of the things that AARP has is something that we've been doing for several years is a pamphlet called Prepare to Care.

Yes, that Prepare to Care tells us, kind of gives us a guideline of what to do.

Start the conversation, set up your financial situation, make sure you take care of yourself.

And so there's about five, I believe, specific items that we would take out, we would pay attention to from the prepare to care.

That gives a new caregiver guidance.

In that regard.

>> I want the final, your final thought that you think we should know about the caregiving experience.

>> Yeah.

So the caregiver doesn't have to do it alone.

There are tons of resources out there for them to tap into, and just knowing who to call to tap into those resources is probably the most important message I could get out there.

And if you want someone to come speak to your local church or your agency or your group or your club that you may have about these.

We do events, we set up tables.

That's how we get the word out there.

And a lot of times it's just word of mouth.

You know, Sally told me that this program exists, and so she told me to call you.

>> And I would just add to that, that don't wait until you realize that you need help and support to seek it out.

I think oftentimes there's lots of things you can sort of have.

I love the prepare to care, like get these things in place before it's an emergency or a crisis, or you're so overwhelmed that you don't know where to start.

Don't wait until things are super hard to get that help and support.

And we have our caregiver program.

We have a hotline, a caregiver hotline that I'm happy to share with, with people who may be watching.

That rings directly to me.

I checked the messages and then connect people with what they, you know, resources that they need, whether it's our program or others.

But definitely don't wait to reach out until you're overwhelmed.

>> And I have to tell you that from my own personal experience, it is very important to get this preparation.

And no matter how well prepared you think you are, there's always more.

>> Isn't it?

Yes.

>> Well, thank you all for your being here and giving us your opinions and your wonderful advice, and we look forward to talking to you more later.

>> Thank you.

>> Thank you, thank you, thank you.

>> A quote from Senator John Hoeven reminds us caring for our seniors is perhaps the greatest responsibility we have.

Those who walk before us have given so much and made possible the life we all enjoy.

But equally important is supporting the caregivers themselves who selflessly give so much of their time, energy, and love to watch this program again or share it with others.

You can visit us online at ket.org.

There you can also find resources about caregiving and other topics for seniors.

That's all part of our ongoing aging initiative called The Next Chapter.

And remember, whether you're currently a caregiver, someone being cared for, or just setting a powerful example of compassion for the next generation of caregivers, we indeed are all just walking each other home.

Thank you so much for joining us.

Take really good care.

So long.