>> Production of Kentucky edition is made possible in part by the KET Millennium Fund.

>> Good evening, and welcome to a special edition of Kentucky edition.

I'm Renee Shaw, and we thank you for spending some of your evening with us tonight.

Highlights from our ongoing aging series called The Next Chapter, where we explore the rewards and challenges of growing older.

The holiday season is a special time to gather and celebrate with family, of course, but it also offers a chance to see how our aging loved ones are doing.

Our Christie Dutton spoke with the neurologist to find out potential signs of cognitive decline and what you can do about it.

>> Doctor Gregory Cooper from Norton Neuroscience Institute is here.

So, Doctor Cooper, when we're with family over the holidays, what signs should we look for that might indicate cognitive decline?

>> Well, really, first of all, we want to look for some type of change.

And that can mean a lot of things.

Our loved ones may have trouble remembering recent events following the train of a conversation.

They may seem more disoriented.

They may struggle more coming up with their words.

All of those might be things that would worry us now in the commotion of the holidays.

We can all have lapses, so you don't want to overreact to that.

But any change would be a clue.

And something else, particularly if we're visiting them.

If they're having more difficulty maintaining their home, or maybe there are changes in their own appearance or their own hygiene, or we see that they're not paying their bills or managing their finances well.

Those might also be indications that would worry us.

>> Okay.

What about the relative that we see that tends to tell the same story over and over?

Is that a sign or anything to worry about?

>> It can be.

It can be.

And again we're looking for a change there.

So I think we all will repeat ourselves.

We all may forget who we told a story to, and that by itself might not be a concern.

But if there's really an uptick in that, if we're repeating ourselves more and more often, and if there's a lack of awareness that we're repeating ourselves, then that could be a concern.

That could be a concern that we're having problems with memory.

>> Yeah.

And November is a big month for Alzheimer's awareness.

Why is it during the holidays that we might notice some of these changes with our loved ones?

>> I think a lot of it is because this is a time we come together again.

So we may not have seen a family member or spent significant time with them for some months, and now there's an opportunity to be with them, to observe them.

And so we see those changes that we might not have picked up just on a casual phone call.

So I think that's a lot of it.

The holidays, although a wonderful time, can be a stressful time.

And that increased stress stresses our system.

It tests us a little bit more.

So some of those changes may come out a bit more.

>> Okay.

So it brings it to the surface perhaps a bit more.

So what sort of changes that we may see would be considered normal should we not worry about.

>> I think if we're just a little bit flustered, that could be normal.

If we're a little more short tempered, that could be normal.

If we're under stress, if we walk into another room and forgot why we walked into that room, all of those things can be normal and just associated with all the commotion and all the excitement of the holidays, so those things can be normal.

>> Okay, that's good because all those apply to me.

>> Sometimes I think they apply to all of us.

>> Yeah.

Okay, so let's say you do notice something in a loved one.

That's something that is of concern.

How do you bring it up.

>> So that can be very difficult.

And people are naturally going to be defensive.

I think all of us would be.

I think that you would want to try saying, well, we notice some changes.

Not sure that's significant, but it really would be a good idea to check that out with your primary doctor.

And if there is a change there, if there is a problem, let's see if there's a solution for that.

Very often I might have memory problems, and it turns out to be a medical condition that I can fix, or a medication problem that I can fix, or if it is part of a real neurological problem, let's say it's the beginning of Alzheimer's disease.

We now have treatments that can meaningfully slow that down.

So let's not wait for this to get too far along.

Let's try to address this now.

Well, we either may find something we can reverse, or at least treat this so that we can really maintain our quality of life.

>> Okay, so if you see something some changes it is important to bring it up in the most compassionate, understanding way.

Right?

>> Yeah.

And I think I'd really focus on there might be something we can do about this and let's not lose that opportunity.

>> Yeah.

And just real quick, let's say it's the holidays and you're with family members that have already been diagnosed with dementia.

Is there anything that can be done to help them during the holidays?

>> So I would say patience.

The holidays are a time when there's a lot going on.

It can be stressful, we can get overdone, we can get taken out of our routine.

When we get taken out of our routine, that's stressful.

So maintain that routine when we can.

And let's not overdo ourselves.

Give ourselves time for rest, and let's be patient.

If I have Alzheimer's disease and I'm repeating myself, give me a break.

Be patient with me and allow me to be me.

>> That is great advice, doctor Cooper, thank you so much for your time and for being here.

Thank you.

Okay, back to you.

>> And thank you, Christy.

One of the major chores of adulting.

Making sure our loved ones know our wishes when it comes to end of life care, having an updating wills and tending to other financial decisions.

I talked with Andrea Sancar, a professor at Wayne State University and author of the book Dying at Home A Family Guide for caregiving, which gives essential information that the dying need to navigate that journey, including the benefits and barriers to dying at home.

Doctor Andrea Sancar, thank you so much for a few minutes of your time to talk about this very important topic.

>> And thank you for having me.

>> Let's talk about this Dying at Home A Family Guide for caregiving.

Give us the overarching impetus for for this.

You've had a couple of these versions of this work.

Why is this so important to talk about and what kind of consequences do we face if we try to ignore the inevitable?

>> Well, unfortunately, can't ignore death.

The impetus for this current version of it is the increase in funding that's available on the federal level, both through Medicare and Medicaid, as well as private insurance.

So that means that hospitals, when they understand that that care is no longer possible and that a patient is terminal, are really pushing people out to be cared for at home.

And there is some support, as I said, through the hospice benefit, but it's not adequate except in very few cases.

And so families are left with a very high level of care.

Somebody may have just left an intensive care in the hospital, and they're at home now, and the family has to provide all that care.

So this book is designed to help families and close friends who are providing that care, understand what the issues are, understand what they're facing, understand where they can get support, and then how to cope with this very challenging task and very rewarding task.

>> And dying at home is key because many people think, I don't know if I want that right for my loved one or for me.

Kind of dispel for us the myths or concerns that people may have about dying at home.

>> Well, one of the unfortunate myths is that if you sign up for hospice, essentially that you know you won't get any more care, and that's signing a death warrant.

Hospice care is available for six months before someone dies.

And it's it's focused on keeping the patient, the person who is dying comfortable and supporting the family that is providing the care.

So it's not a death sentence.

You know, people wait way too long to get hospice care.

Typically, they could start getting hospice care sooner, and then they could have more care in the home.

When you have somebody who is dying, they need a lot of attention and a lot of care.

And often it's around the clock care.

If you have the hospice benefit, you're able to access the resources that hospice provides without that benefit.

If you just have home care or you're trying to do it yourself, it's really difficult.

>> And making the decision that to have that at home hospice assisting.

What are some other considerations or questions you should be asking yourself or discussing with your loved one?

If they're able to communicate at that point?

Because we would think that they may be at a point in their terminal condition where that communication isn't possible.

>> That's exactly right.

Well, a few things.

First of all, a physician has to certify that you, the patient, only has six months left to live.

So that's the first, you know, access point to getting hospice care.

Then you have to as the caregiver you have to assess, can I really do this?

Not everybody can do this.

I mean, if you're an elderly couple and the person who's not dying is as frail potentially as the person who's dying, maybe they can't do it.

Or if you're a young parent with little kids and a full time job, maybe you can't do it.

So even the person who who is dying, who would like to die at home, caregivers may not be able to actually, you know, respond appropriately to that wish, and they may have to arrange a different care settings for the dying person.

And that's okay.

I mean, you need to really say, can I do this?

Do I have the extra support I need in order to do this?

And will the rest of my life absorb my total fixation and attention to caring for the dying person?

>> We always hear the phrase Doctor Sankara about getting your affairs in order, and hopefully many people are doing this before they get to this point.

But if there is a sudden, unexpected turn in someone's health or condition where they're not able and did not make those advance provisions, how do you help someone get their affairs in order?

And what does that really mean?

What's the full extent of that?

>> That's a huge question.

I mean, that can be everything from writing a will, which you don't necessarily have to have an order to be in hospice, to doing advanced directives, to deciding whether you're going to have a do not resuscitate order.

There's a whole range of things that you want to think about now, if you're in enrolled in a hospice, they will suggest that you think about these issues.

So it's not it's not just up to the caregiver and the dying person.

It's you know, you will get professional advice about you really need to have advanced directives.

And advanced directives are what the you know, hopefully the dying person is alert enough to be part of this is to sort of specify what levels of care they want, you know, if something happens, if they start choking and they're in hospice, do they want to be resuscitated or do they want to just let it go?

Then if they have an infection where they're uncomfortable, do they want antibiotics to make themselves more comfortable, which could prolong their lives, or do they just want to let the infection take its course?

So ideally, you want to have the dying person involved in all these decisions.

So when this comes up as a crisis, it's not just all on the caregiver's shoulders.

And the caregiver can, you know, turn back to say, okay, what did my loved one say they wanted to do in this situation?

And that will provide guidance for the caregiver in both the caregiving acts and the decisions they have to make.

>> The process of dying, perhaps there is there are common signs of that when we think about those loss of appetite and the inability to eat and we think, oh my, my loved one is starving to death, right?

But that's a part of the transition process.

Correct.

And are they feeling this in any way?

Is there pain associated with the dying process?

>> The research that's been done so far on the dying process shows that it's completely normal for the dying person to stop eating and to stop drinking several days.

And in the case of eating, sometimes a few weeks before death, and that to force food on them can make them much more uncomfortable, because the body functions like the stomach and the liver are shutting down.

And to insist that they eat can make their body respond negatively, so it can actually make their life more painful.

So yes, those are as you said, those are all natural, part of the natural dying process, and they're to be expected.

And a hospice social worker, hospice nurse will guide you through this as the caregiver.

If this is the first time you've done this, they can say this is natural.

This is what we expect.

>> I hope people will check out your comprehensive guide for caring for a loved one nearing the end of life.

Dying at Home A Family Guide for caregiving.

We thank you so much for writing this and sharing a little bit about it with us today.

We appreciate it.

>> Thank you for having me.

>> The role of a caregiver can be demanding physically, financially, and emotionally.

Our Kelsey Starks introduces us to a couple navigating these changes in their relationship.

One day at a time.

>> Robin and Albert Serkis 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 a 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 U of L 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 are we going to solve this?

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

>> For KET.

I'm Kelsey Starks.

>> Thank you.

Kelsey.

And like that couple, there are nearly a million people who are estimated to be caring for a family member right here in Kentucky, according to recent data from AARP.

Many who are full time caregivers for their elderly parents often balance that role with raising their own children, and they're referred to as the sandwich generation.

Our Laura Rogers spent time with an Allen County couple who have a teenage daughter, and are also the in-home caregivers for an ailing father.

>> 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 Vans was willing to accept to support his longtime partner and fiance, 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, his clothes.

>> 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, in 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 care 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.

>> Thank you, Laura, for that.

A Bowling Green occupational therapist and her mother are helping lead the charge to help older adults age safely and happily at their home.

Here, once again is Laura Rogers, with more.

>> Being an occupational therapist.

I worked with the geriatric population and just developed a passion for it.

>> That passion led Lisa Kearney to begin a practice called Age in Place.

>> What do you do every day?

What do you love to do and how can I help you maintain that?

>> Conducts home safety assessments to see what changes could make the home safer and more accessible.

>> I watched them navigate around the environment.

I see what they need for safety.

We look at the entryway.

We look at the lighting.

Is there enough lighting?

Are there throw rugs?

>> Lisa came along and made me take up the throw rugs in the bathroom.

>> Mary Anne is Lisa's mother.

>> The key is to make a plan.

>> She's helping her mother and others like her.

Make those plans to age safely and happily at home.

>> What tends to happen is people wait until there's a crisis.

A fall can happen in a moment, and all of a sudden you can't bear weight and you have to have a wheelchair and is your home ready?

>> There are also things you can do to help prevent those falls, a leading cause of death and injury for older adults.

>> Balance assessment by a physical therapist.

Getting your hearing checked.

Getting your vision checked.

>> We put grab bars up very quickly when we moved in.

And then I had knee surgery and we were really glad we had the grab bars.

>> Mary Ann says she and her husband considered their goal of aging in place when they bought this house in their 70s.

>> So our house has one step from the sidewalk to the front porch, and one step from the front porch in, and everything is on one floor.

>> She's also spearheading efforts for Bowling Green to join the Village to Village network.

>> There's about 300 villages in the United States right now.

>> All of them different, but with the same goal of connecting seniors to the help they may need.

>> Village movement is a movement to help people stay in their homes.

>> And that means combating two main challenges.

>> Isolation and transportation.

>> Villages Yvette volunteers to help seniors with basic needs.

>> A ride to their doctor's appointment or a light bulb change.

>> Changing a light bulb is now a challenge because we have high ceilings, we can't get up on the ladder anymore.

>> Mary Ann was also inspired by the society for Lifelong Learning at Western Kentucky University.

>> That gives intellectual stimulation, and frankly, that changed my life.

There's a lot going on, a lot of different people providing services, a lot of activities, but there's no one place to go to find out what's going on.

Our village is starting with what we're calling a resource hub.

>> Lisa Carney says the need for these resources continues to grow as life expectancy increases.

>> There's a huge need.

I feel like it's almost getting to a crisis point.

>> She says.

It's also important to know your insurance and what it covers.

>> Do you have traditional Medicare?

Do you have Medicare Advantage?

What does that cover?

Planning is the key.

>> Handedly started the marathon.

>> Well, planning certainly is the key.

And you can learn more about ways to remain independent and your golden years, along with all kinds of aging related topics and other helpful resources, can be found on our website at ket.org.

Next Chapter Forum.

We thank you so much for joining us.

We hope you take really good care, and we'll see you right back here again tomorrow at 630 eastern, 530 central for Kentucky edition.

So long.