Hello I'm Karen Walker and welcome to Arkansas talks health.

According to the all time.

Association in Arkansas, over 60,000 seniors live with Alzheimer's dementia.

They are supported by approximately 175,000 unpaid family caregivers, who contribute more than 268,000,000 hours of care annually.

These services are valued at roughly $5 billion.

For those simple reasons, we wanted to provide a program dedicated to these family caregivers to help discuss the topic.

We have an amazing panel of experts who provide resources to family caregivers of those living with Alzheimer's disease and other related dementia.

First, we have Todd Price.

Todd Price serves as the director of outreach at Carolyn.

Can you tell us a little bit about what your organization does?

So, Carolyn, is the area on aging for Central Arkansas, and we provide resources to adults in six counties, and that would be Celine, Faulkner, Pulaski, Prairie, Lonoke, and Monroe.

Wow.

You cover a big part of the state, don't you?

We do.

And just so you know, there are other ways in the state that cover all the other counties.

But what I'll talk about today, maybe a little bit different across those other Rs.

But you can call ways, call our office and we'll connect you.

That's wonderful.

That's wonderful.

Welcome.

And now I'd like to introduce Miss Kimberly Kinder.

She is the executive director of all times Arkansas.

Welcome, Kimberly.

Thank you so much.

Can you tell us a little bit about your organization?

Sure.

Alzheimer's Arkansas is a resource for caregivers in the state of Arkansas.

We are separate from the association in that we are based in Arkansas.

All of the money stays in Arkansas and all of our funding and resources and help go toward the caregiver for their loved one who is dealing with Alzheimer's, dementia.

Other chronic diseases?

Yes.

It's going to be a good show, isn't it?

Yes.

Yes.

Now, I want to introduce you to our next guest is Courtney Fowler.

She's the territory account manager for life.

Touch help!

Yes.

Thank you for having me.

We are formally Arkansas Hospice.

In October, we actually changed our name to Live Touch Health.

Because at the end of the day, that is what we're trying to do.

And we are more than just hospice and palliative.

We have so many programs.

And so we just pulled them all under an umbrella.

And so every day we get to help people make one of the hardest decisions that they will ever make.

But we get to help the families too.

So we're not just here for the patients.

We're here for the caregivers as well.

Love it, love it.

Welcome, welcome.

And today we have a caregiver with us who's on this journey that's going to be able to provide us with great information.

Welcome.

Miss Teresa Woods, tell us a little bit about you.

Thank you.

Good morning.

I am a caregiver.

I take care of my mother.

I've been tasked with.

The responsibility to completely take care of my mom.

I've had her since 2022, when my father passed.

He was her caregiver.

So, yeah.

So this journey has been quite a journey.

But I couldn't do it without these resources.

Yeah.

So grateful to be here.

And we're glad you're here.

I think all of you are going to add to a rich conversation today.

So before we delve deeper into the conversation, I want to remind our viewers that this program does not replace talking with your health care professional about you and your family's health.

Okay, so let's talk.

Can you give us a brief description of what exactly is Alzheimer's disease and other related dementia?

I believe, Kimberly, you can jump in and give us that information.

Sure.

Truly, Alzheimer's is a form of dementia.

It just happens to be the most common form of dementia.

Approximately 60 to 80% of all forms of dementia end up being Alzheimer's.

That is what the statistics show.

But people are probably familiar with a number of other types like frontal, temporal, vascular.

Louis body Parkinson's is under the dimension umbrella.

So there's a lot of disease that affects the brain, brain health, the ability to make decisions and just live your life normally.

Wow.

So as today we focus in on our caregivers, we just want to have the conversation that's going to be most helpful.

Many family notice changes even before they get a diagnosis.

So what are some of those warning signs that it's probably time to talk to a health care provider.

So what I like to say is it's not a matter of noticing those warning signs.

It's admitting sometimes those oftentimes aren't normal memory loss.

And so not remembering a name or recall of of I can't remember Teresa's name in five minutes later I'm like, oh yes, it was Theresa.

It is more learning a new task and you can't recall being able to put multiple steps together.

I've baked this same cookie recipe for 57 years and now I can't do it.

But more than that, it's changes in mood affect personality.

People will notice.

Oftentimes someone's maybe anxious, angry, upset in situations they never were before.

So really paying attention to behavior as much as memory is very important.

Yes, that's very good.

Because what we've found is that a lot of times people delay asking for help.

Why?

Why is that?

I think sometimes they're scared.

We are all from a generation here where we're supposed to be our loved ones, primary caregiver.

And I think sometimes if we ask for help, we feel like we're a little less than.

And I was the same way.

I wanted to take care of my mom.

She was my mom.

And so I pushed off services.

And after my mother passed, I realized that the whole organization was there as much for me as they were for my mom and how much they really took off of me.

So I think it's just a stigma within our society that we have to do it on our own.

And asking for help makes us weaker and it doesn't.

For me, the title of mother, my mom was always in the forefront.

And so when I would think that's odd or I would make excuses not realizing it because that's my mother, and when she would do something that was very much out of character again, I would at my say, oh, she's getting older.

It the the signs of dementia really shocked me.

And I'm an occupational therapist by trade, but that means nothing when it's, you know, behind closed doors and you're wearing a different hat.

So I would go to a workshop and I would hear things.

I would here signs and symptoms for other people.

And I would start thinking, My mother does that, but it really wouldn't go much further because my mother is my mother.

She took care of me.

She did all of these things so often.

It's a slap in the face when it comes to maybe she has an appointment at somewhere and doctor's appointment or an appointment to get her hair done, and she just totally missed it.

And that's odd.

The signs have become really loud sometimes for the caregiver to realize something is not normal here.

So yeah, yes, I know that we pay attention to our loved ones and we want to believe that.

Oh, they're just having a bad day.

But sometimes there's really something going on.

So once you get the diagnosis, what's the first steps you should take when you get the diagnosis of your loved one has dementia all timers.

I think for me it's asking for help.

A lot of times we need to start with our PCP.

One of the things that I do here in town and in the territories that I cover, is go out and visit with doctors and physicians, even hospitals, so that they know the services that we offer.

And a lot of times, I will find those physicians don't really like to have hard conversations.

They would rather myself do that, and I don't mind at all.

But if a family says, hey, where can we go from here?

They at least have some information, or they can say, hey, this girl came by and this is a pamphlet that she left for me.

But sometimes it's just making that first step and asking the physician, and there are resources.

There are.

There are thousands of resources available.

Ask your friends.

I mean, I have some people that I have found and we've helped from social media.

I'll see someone cry out for help on social media, and I'll slide into their messages and say, hey, you don't know me, and that's okay.

But this is who I am and what I offer.

Would you like to visit?

Would you like some coffee?

And it's just any way we can help someone.

But, you know, different people are going to ask for different things in different ways.

And I think it's our responsibility just to find that out.

Yes.

I think I had taken a plan.

As soon as you hear about the diagnosis and then when you get to the point to where what's next, then reach out for resources, which is one of the reasons why we wanted to be here today.

We want to your audience to know that we are a resource for them, and whether Care Link is going to provide the service or we source it out to one of these programs here.

You're not alone.

And that's what we want you to remember.

And it's okay to ask for those extra resources.

Yes.

That's good.

If I may, I would add get a good diagnosis.

There are times when dementia is diagnosed and it's not actually dementia.

There can be other disease processes that can present that way.

New medications.

So finding someone who will truly go for that.

So or go through all of that with you.

But one of the things that is the biggest problem is we're in a desert in Arkansas, and many states are there are not a lot of geriatric providers.

And so when you talk about neurologists, there are about ten per 10,000.

So that is a very low number.

We do not have enough practitioners doing neurology diagnosis geriatric care.

And your PCP is not an expert.

They're a generalist.

So sometimes they will tell you it's normal aging when it's not.

We run into that a lot and we get a lot of stories about the length of time it takes to get a good diagnosis.

That's good to know.

Well, you know, caregiving is a big job.

So how do you identify that someone is a family caregiver?

Because sometimes we feel like, oh, I'm just helping mom out, but how does it go from I'm just helping mom out to know I'm actually mom's caregiver.

How do you know when they've made that switch for me?

My mother, she moved in with us when my father passed.

And although I was taking care of her, my mindset was, she's living with us now where a family, she's going to do this, I'm going to do that.

And it gradually I started realizing I was responsible for everything.

Meal prep, helping her keep up her social skills.

It it was like an onion layer by layer become a reality.

Me to me, that wow, I can't do everything for her.

And maybe a year or two I realized, wow, I'm a caregiver as opposed to my mom living with with, you know, she just moved in with her family that it took a while for me to start.

And I think for me, I didn't believe or I didn't.

I wasn't aware that it was really a thing.

Theoretically, you know about dementia because you heard about it at a workshop and you, you see in a movie.

But because my mother was able to still do many things, there were more things that she was not able to do.

And so I just gradually moved into the caregiver role.

And then that's when it became very frightening, because now I'm responsible for another human being who is my mother, and I'm taking care of my teenage son.

Like it just became overwhelming.

And I think I didn't want the title caregiver because that's serious.

That's like major, but with the resources it is so doable.

But without resources, it is.

It is unbelievably difficult.

So I took a while for me to recognize and happily where the hat caregiver.

Yeah.

Because I know people who fight the the role of caregiver because it it it means something for them that may not be real.

It might be some traditions and.

Well, I can't do that.

That's my father.

I don't know if I can do that, because the title of who that person is to you sometimes is still larger than the reality of your caregiver.

You're still their son, you're still their daughter, but you're also a caregiver.

And so that that takes some training and conversations to embrace that.

And those conversations sometimes can be hard.

I know many of your organizations receive calls all the time, and caregiving is not just a child taking care of a parent.

Sometimes it's a spouse taking care of the, you know, the other one, the spouse.

How does that differ?

Caregiving for child to parent versus when some a husband is now caring for their wife, or a wife is caring for their husband?

Well, I have this conversation daily, and I know we've had this conversation before, but as a caregiver, I tell everyone you cannot take care of anyone else until you take care of yourself.

And that's something that I really proud our organization on through the nurses and the aids that we provide.

We're not there every day.

We can be, but we can teach the family skills.

And while we're there, we can do this together.

We can walk through this journey together and hold each other's hand.

But we can we can take a little bit of that burden off of the family, where the spouse or the sibling can go back to being the wife, or go back to being the daughter.

And for a few moments you have a little bit of normal.

And we are the state's only nonprofit hospice service.

And so through our foundation and other resources, we're able to provide respite care.

And that's something that I love so much.

It's a little bit harder with Alzheimer's and dementia patients, because sometimes they don't want to leave their home or leave that bubble, but we can work around that.

But for five days and five knots, we can get a family respite services.

And sometimes that break makes all the difference in the world.

You know, you can go away, whether it be a vacation or just that's what I tell people.

I'm like, I'll never ask you if you want to just stay in your bed for five days and five nights, I don't care.

That's okay.

That's normal.

And when you come back on that sixth day or that seventh day, I mean, we'll work however long we need to.

But when you come back, you're going to have a whole new mindset.

You're going to be refreshed.

You can pick back up and take care of that loved one.

We'll hold your hand and we'll walk you back through it.

So I think sometimes we just have to stop and take care of ourselves and realize we're all doing this, and it's hard, but there are people there that will make it easier for you.

I love it, you know, Courtney, your organization, you said it used to be Arkansas Hospice, but now you've changed your name because it really reflects the services you offer.

Can you tell us a little bit more about, you know, hospice care?

I know used to when you hear that name way back, you would think, oh my goodness, my loved one has two weeks to live or something.

And that's truly not what hospice is in this day and age.

I'll share part of my story.

I was a teacher by trade, found myself in marketing in hospital and loved my job, intended to retire from there.

And that was that was my calling, I thought.

And so my mom got sick and my mom was in Oklahoma.

I met with a doctor and he said, hey, he was during Covid and he said, we need to pull some strings.

We probably need to get your mom in your facility.

She needs therapy, rehab.

She needs to get stronger back on her feet.

Okay, we can do that.

Well, I'd had marketers come in and visit with me, and I knew enough, you know?

And when they started speaking to me about hospice, I threw hands like I was like, stop, everybody stop.

My mom is not about to pass away.

And they looked at me so crazy.

But in the 80s, at my grandma's house, if someone got through that party line and said, Miss Joe is going home on hospice, my grandma was taking us to the little country church, and we were cleaning and organizing because we were about to have a service, and then we would go to the cemetery and make sure wherever we were going to be was clean.

So in my mind, even in 2019, 2020, hospice meant death immediately.

And I even though I had I had information, I had resources, I worked in the medical facility.

It didn't matter.

I had those life decisions that I had seen happen.

And so for four months, I put off my mom's help.

I put my mom through therapy and rehab.

She was in pain that she didn't have to be in, and I was like, no, we're doing this, the doctor said.

And mom's like, Courtney, I don't I don't want to do this.

I mean, my mom was on a liver transplant list and I was her donor, and we went through all of that and she would say, I don't want to do this, but I will for you.

And my mom actually passed away on the day that she was supposed to receive the transplant.

She didn't want to do that.

But instead of getting my mom four months of help.

I got her for days.

So I actually become the stigma that now I get to teach everyone about because I didn't know.

And so after I had walked that journey and lived that journey and saw how hospice had helped my mom for four days, I couldn't walk by that room without thinking how they could have helped my mom and myself and my family for four months.

Because like you Tresa, I was trying to maintain a home, a job, and still be there for my mom.

And so I was running on fumes and didn't know it, you know?

And then so after I knew better, I was like, okay, we have to we have to do better now.

You know, now I know.

So now I get to walk with families and be like, it's not too soon.

You know, hospice does not mean that someone is about to pass away right now.

We've had patients on hospice for years.

It just means that they have a diagnosis.

We are not going to seek aggressive treatment and we need someone to love us through this.

And so that's what we're there for.

And a step before that we have palliative I mean under our umbrella of care on palliative.

You can still see any doctor still go to any physician.

You can go to 50 specialists if that's what you want.

But we'll send a nurse practitioner to your home every 4 to 6 weeks or so.

And while that nurse is there, she's going to sit on the couch like this and visit with your family, visit with the patient.

And she's going to find a lot of things that we miss in a physician's office.

But if we can get a family, then we can love them longer.

So when it's time to make that transition to hospice, the family knows, okay, these people are going to come in.

The patient has a relationship with us already and it bridges that gap.

And it's it can be a beautiful journey.

Like I always say, we are making the hardest decisions of our lives.

And I don't take that lightly because I did it.

You know, I've walked this, but if someone could hold my hand and walk through it with me, it can be beautiful.

That is exactly my story of the palliative nurse.

She came, she did my mom's vitals and all that good stuff, and she looked at me and she said, let's, let's just sit down and talk.

And I'm thinking, oh, gosh, okay, well, I need to finish that.

Okay.

We'll talk.

And I'm telling you, five minutes later I was just in or she was just so careful and so human.

And she saw the struggle in my home, which is just, should I put this blanket on, mom, or should I use the sheet?

You know, stuff that didn't even matter.

But it mattered to me because it was just filler time.

I find myself just nervous.

So the palliative nurse, we spoke, we talk about my mom's care, and then she said, I want you to consider something.

I said, sure, because I trusted her.

She had been coming to her home and she mentioned hospice.

And I said, well, I mean, mom, mom's getting therapy and she's doing really good with that.

And she said, yeah, but she she said, I want you to think ahead.

The disease process and all the medical piece.

And she said, I just want you to consider that.

And I considered it because I trusted her.

She she sat down on my couch.

She didn't look at her watch.

She didn't respond to I got another patient in ten minutes.

And in that 15 minutes I thought, well, gosh, she wouldn't be making this up.

Let me consider.

And that started the process of me looking beyond today and listening to my mother, because my mother would say sometimes, oh, why are we doing all of this?

Because I, I'd get off work, have dinner, put her in the car, go for a ride, point out all the beautiful trees and all of that.

And sometimes she okay?

Yeah.

It's nice.

She sounded tired, but I'm like, we've got to do this and then get back home and do a little bit more therapy at home.

And when I look back, I was just it was just for me because my mother really didn't need that.

And a couple of months later I said, you know what?

I need to have the conversation.

But it took me a while to even get to that because I'm seeing my mom, you know, she's walking, she's eating.

She's still being a little Henry.

And I thought, oh, okay.

Yes.

She's here.

Yeah.

But she was she was gradually leaving.

And so that was the best conversation.

And I didn't even know.

I didn't know, you know.

So when the hospice team came there was no pressure.

They just talked to me.

We sat in my house for an hour and I kept saying, I know you got to go.

And they said, no, no, we don't.

And it made me nervous because I thought, I've never had this type of service.

Like I said, what if I don't decide to put my mom on hospice?

They said, that's fine.

I thought, wow, this is amazing, the love from the services.

And it's funny because I started with Arkansas Alzheimer's that led me to Care Link.

That led me to life point.

And so I was it's just amazing this full circle.

So I'm so grateful.

And my mother is happily, she's in peace, she's not in pain, and I love her in a different way.

I even helped my family, my extended family love her and not focus so much on what she can't do is this year has just been mind blowing because of the services.

Wow.

That's amazing.

I know, Todd, you get a lot of calls to your office.

What?

What are you talking to caregivers about?

What type of help are they looking for?

So oftentimes when we get callers, they're calling warning services for their loved one that they're taken care of.

And then we let them know there's so much more out there for you, because we know caregivers are not taking care of themselves because they're so focused on their loved one.

So when we start talking about that, most of the time they're not ready to hear that yet.

I just want the service for my loved one.

So we will email them services or send them pamphlets and say, okay, call us when you're ready.

But what we do is we have several programs like support groups along with Alzheimer's Arkansas and Life Touch Health.

And then we have some evidence based programs.

One is called Super Noggin, and it's a year long brain fitness program that you're with us for now, you can't have a diagnosis of dementia.

It's for the caregiver.

And we will take 18 weeks of classes every week.

And then we meet monthly for a year.

And you're working in notebooks, you're journaling, you're taking time for yourself, noticing nature.

You're exercising, eating right.

Where we focus on your sleeping life reviews, we go back to remembering things that you know makes you happy because we know positive thinking and laughter kind of leaves falls by the wayside.

And we need to bring that back into your life.

And we have one other program that we're really happy about is a family caregiver counseling, and we want people to take advantage of that.

We will connect you with a professional so you can go and talk and take care of your needs.

And if you have insurance that covers that, we'll take care of the co-pays.

If you don't have insurance, we'll take care of the cost of the session.

So please, please call us.

And remember, you have to take care of yourself so you can take care of your loved one.

Absolutely.

That's great information and your story, Teresa.

Being able to share your journey with your mom, because that's many people's stories and they don't hear enough that people can relate to me.

One of the things I know that's important is planning.

So why is planning so important before a family has the crisis?

From our perspective, that is what we do is give education and planning.

So what I would say, the reason that people plan is so that you can age how you want to.

You didn't know how your mom wanted to plan.

You didn't know how your mom wanted to plan, but what you didn't do was sit down and ask them, how would you like for your life to go if you were diagnosed?

So the importance in planning is planning ahead.

That is actually the theme of our workshops this year is planning.

So that is from the diagnosis.

What do you do after you get a diagnosis?

You go to the doctor, you get the diagnosis.

And then most people are like, okay, what do I do next?

And they don't really get answers.

So reaching out is how you get those answers.

Unfortunately, that is on the caregiver and their person.

But if you don't have a conversation and that person gets to the point they can't make decisions anymore, then you can't do the legal things either.

You can't get a Po in place and you needed to.

You don't know if they want to be cremated or buried.

You don't know if they want to never be on life sustaining treatment.

Get a, you know, a pulse in place, a physician order of life sustaining treatment so that follows them from facility to facility versus a DNR at one place that doesn't actually affect them at another.

And those are things we don't know until we need to know them.

So planning is all parts of that.

How do you want to be treated?

How do you want to age?

Do you want to be at home?

Would you rather be in a facility?

But really it is.

How do we get through this together?

Because they're going to need you whether they want to or not, and you're going to need to have some peace with how that progresses.

But you need to take care of yourself.

So that's part of that planning is how do I also take care of myself in the mix of being a full time caregiver?

And what does that terminology look like?

Like one of the things that when we're talking about, how do you determine if you're a caregiver?

Just learning terminology like ADLs and IDLES, activities of daily living, independent activity, daily, daily living.

If you're not recognizing that they're no longer independent with they no longer have the ability to go through multiple steps, and then you don't change your ability to communicate and say, oh, they can't follow four steps anymore.

So I can't say, hey, let's go ahead and get your sweater on, go get in the car.

Then we're going to the doctor and then we're going to have lunch.

They need to hear, let's put your sweater on.

And then you move on because you have to communicate in a different way.

That's all in the planning process.

Yes.

So how do you does your organizations help caregivers get a roadmap to planning?

We do.

We actually on top of our our ends who come in our CNAs who visit.

We also have a social worker and a chaplain and a volunteer coordinator.

If there's not a plan in place, the social worker is so great to do that they can help with funeral arrangements or even choosing a crematory, but they'll sit down with the family and say, okay, so we've not done this yet, you know, has your mom ever mentioned this or can we talk to mom about this, the chaplain, the same thing.

I mean, we have so many people who they don't know until they don't know.

And then when they know, they're like, I need I need this chaplain.

Will we provide that?

And the volunteer coordinator as well.

We have some families who just want a visit once a week to sit there and read a book to mom, because mom likes that.

And while that volunteer coordinator is, you know, making that happen, the family can go do a load of laundry or sit on the porch and have some coffee.

But all of those things in place can make a perfect plan, because we don't always plan in advance.

And prior to that, we have caregiver workshops that are educational brunch and learns.

So there's a lot of opportunities.

That is the whole goal of Alzheimer's Arkansas is to get information out there before so that when it comes time to decide on hospice, they already know what that is.

But but caregiver workshops, brunch and learns.

We have all sorts of things that we do in the community.

Just care time, respite activities.

So just when you make those calls, you call Carolyn and find out what are the services, respite grants and so that all links together, just like like we were saying, Teresa made the point.

It's a full circle.

The planning piece is life sustaining for the caregiver.

I'll tell you why I was so focused on my mom and her care, my son, everybody else.

And one day I had set my work clothes out.

Sort of like according to what?

Which day I need to have, which scrubbed.

And by Wednesday I said, wow, oh my God, I'm wearing the same outfit for the past three days.

Didn't even I would never do that.

And it made me laugh.

And I said, you know what?

I learned that the caregiver workshop, you got to take care of yourself.

I did not really know what that meant.

I just thought that meant, you know, you get up, you brush your teeth, you brush your hair, you make your coffee, and then you start with your mom and you start.

And no, I, I was I had missed doctor's appointments.

A friend were calling and say, hey, I missed you at the book reading.

Oh, was that this week?

It was last month.

Like, I had no idea how I was neglecting myself because when they said, you got to take care of yourself, I'm just thinking, well, I'm eating and I'm drinking, but life is so much more than that.

And so the the second caregiver workshop had gone to because the first one had gone to it, there was so much good information.

It just it was surreal.

It was surreal.

So I went two months later when when they had the next one and I started learning what when people always say, take care of yourself, like, what does that mean?

And the people at my table would just give examples and and I was like, wow, I started seeing myself.

Those people would say, yeah, I went three days and didn't even change my ponytail.

And that, oh my God, that that was me.

And so that made me look at the resources that they give out.

And it gives you literally like things to do.

How do you take care of yourself?

And I know that sounds crazy, but you forget about you.

And so so my mom is in hospice now and the social worker called me.

She said, Teresa, you're not using your respite days.

And I said, well, I'm going to wait to to July because we have a family reunion.

She said, but it's just February.

I said, no, I'm I'm going to wait till she said so.

She called me back.

She said, we need for you to take your respite days.

And then I thought, well, where is she going to go?

Like, it was just I think I needed more help than my mom, you know?

But yeah, they could just hear in my voice the exhaustion.

And I went away for two days, and the hospice nurse would say, I don't want you calling.

We're going to call and check on your mom.

It was just amazing.

So now I just came back from a family reunion.

I was gone six days and it was amazing.

I was able to breathe.

I thought about my mom, but it was just.

I'm telling you, these services is a life changer.

It's a life giver.

I could not I could not do this.

And as my mother progresses, the resources become like food.

You just because you don't know if you.

If I didn't have the plan, I would be paralyzed with fear, to be honest.

And what helps me is now when I go to the caregiver workshop, I align myself with a few folks that's new, and helping them actually helps me.

And I just want to say one other thing to my nervousness.

And my fear was impacted.

My mom, she'd say, Teresa, are you happy?

And I think, am I happy?

Who has time to be happier?

I've got to do all of this.

And my mom used to do that.

She would ask me like a rhetorical question to make me think, well, there's still pieces of my mom that comes through.

And when she asked me that, I said, okay, I need to stop and breathe.

And so that tip I learned from the resources because they said, still listen to your loved one.

So it's just the planning piece has enabled me to actually have a life, a quality life.

So thank you.

I'm glad she said I needed more help than the person I was taking care of.

And on staff.

We have a family services coordinator and that's her job.

She does a case management workup for our family caregivers, and she follows them throughout their journey and checks with them monthly to say, are you doing okay?

Is there anything that you need?

And so we really want family caregivers to realize, I need help and reach out to us so we can provide that for them.

Is there a cause for your services?

No.

So all of that is provided through grant funding.

And so we want people to take advantage of those services.

Wow, wow.

And see, a lot of people don't realize that there's a lot of help out there.

And each of your organizations are able to provide that help.

But, you know, sometimes caregivers need help with just the behavior.

For instance, they struggle with like, repetitive questions that their loved one is asking, or sometimes agitation or wandering.

What type of advice do you give them into how to communicate better with their loved one when they see these behaviors?

A lot of times the advice is figuring out what it is.

Those behaviors are oftentimes because they cannot communicate.

There's something going on.

Maybe they're hot, but they can't say I'm hot and they're taking their clothes off.

Why are you taking your clothes off?

We're in public, but they just can't communicate.

And then their behaviors seem odd, or they get upset or they're very pushy, or they're just adamant about something and it's trying to figure out what is it that they need to communicate.

So routine is very important in my opinion.

Keeping a routine, it just makes their lives easier.

It makes them not guess as much.

The more that confused they are, the more anxious they are oftentimes.

And so not knowing what is going on or not being able to put those steps together confuses them more.

So asking them over and over to do something that they can't figure out how to do doesn't get them to do it.

It just frustrates everyone, the caregiver and their loved one.

And so really, I think it's just step back.

Maybe you take a moment and then you start over and really try to assess the situation and figure out what is going on.

And they might try to communicate something that they can't verbally.

Right.

So arguing really is an effective hunt, very ineffective I mean, in general.

Right.

And you're not going to win.

You're not not going to win.

My mother started touching people.

She would reach out for their hand or their shoulder, and I would take her out to lunch.

And I'd be so embarrassed because the waiter would come and she's touching her hand.

And I'm like, you know, we just come out the pandemic, but we still don't, you know?

No, no, mama, you can't do that.

And she does it even more.

And I'm like, oh my goodness, you know what?

Well, you know what?

I just watched her one day and my mother's vision has really changed as well as her hearing.

And so when someone comes to her or comes in her space, she touches them to make sure they are there, and she wants them to know that she's there and then she'll start interacting.

And I, I thought I was embarrassed because all those times I was like, mom, you don't do that.

You can't touch children, you know, stranger danger and all this stuff.

And but she because she wouldn't she wasn't able to say, hi, I'm Lucille.

And that was her way of introducing herself.

And I learned that from one of the resources.

I'm with everybody here, and I learned it from a conversation y'all were having with someone.

And I said, you know what?

My mom does that.

And it helped me to to understand the behavior because just like a child, child doesn't say my hands are sticky from the candy I snuck, you know, they're going to just hit stuff or white and you're not sure what's happening.

So yeah, the behavioral pieces really helped me understand and love my mom more unconditionally and peacefully.

Yes, it seems like the more information we have, the better we're able to care for our loved ones and also to care for ourselves.

But, you know, it's becomes challenging sometimes for people in rural areas to receive services.

So how does your organization help people in the rural areas, or where can rule Arkansans get services that are like yours in their in their spaces and places.

So I cover my mail all the way through Perryville, Conway, Greenbrier, Clinton into Heber and Fairfield Bay.

So I have some towns, I have some hospitals, I have some families who haven't seen a physician in 15 years.

But they need help.

They refuse to go to the doctor.

They have no diagnosis.

We help that a lot by doing face to face.

We're using communication technology where we can.

But when we talk about the more rural demographic area, those families don't know how.

So on a normal day, I'll go with a tablet and I'll do a face to face with a nurse practitioner, and we'll make that visit happen using technology.

We'll pull what medical records we can, but a lot of times a conversation fixes most things and we can talk, you know, one on one and get them a diagnosis.

Then get the family the resources, get them the help.

So I say every day I may start out in central Conway or at a hospital, and I may end up on a dirt road on a dead end road.

In some situations that aren't exactly ideal.

But, you know, sickness doesn't have a timeline, it doesn't have a time frame.

And that's why we work 24 hours a day.

We have daytime staff.

We have not time staff.

We can staff, holiday staff.

Most of the time processes don't occur on a Wednesday at noon.

You know, it's Easter Sunday at 3 p.m.

or 3 a.m.

and we're able to take care of that.

So even if a family member hasn't received, you know, a diagnosis that we need and we can get that through technology and we can still get them to help, they need.

Wow.

So you're going to the places that are not necessarily the metro spots.

Absolutely.

That's great.

What about your organization?

We are doing the same.

We have case managers in each one of our counties.

And we also take tablets and we can do telehealth as well.

We also for support groups because we know support groups is where you can really benefit from other people.

That's going through the same experiences that you are.

So we also have a zoom support group, so you can just zoom in from your home and get all the benefits of talking to the people in your in the same situation, so we can reach those rural families as well.

Oh, I love it, I love it, but you know, what are the signs though, that a caregiver is hitting burnout?

So so you know, honestly it is their own lack of patience, their tiredness, their fatigue.

They don't always recognize it themselves.

But talking to other people, one of the things that we do is we do facilitator training for support groups in communities.

So we have support groups all over the state of Arkansas that are live and in person.

We have zoom as well.

But the problem is, is, like she said, sometimes they don't even have Wi-Fi.

But you know, when someone's in Grady, Arkansas, they want resources in Grady, Arkansas.

They're so tired of driving to little Rock.

So if there are people in our communities that would like to create a support group through churches and different organizations, it really is sometimes just speaking to other people.

People speak life into people.

That support means it is okay to say I am tired or I don't want to have to care every single day, full time for my husband that I said, for better or for worse.

So sometimes admitting to yourself that it's a harder job than you really thought you signed up for.

But truly, if if someone is struggling with their own health and the statistics are about 70% of unpaid caregivers have their own health conditions.

And we're not talking about controlled diabetes.

We're talking about chronic conditions, things that are actually affecting their health as well.

Wow.

So what are some small daily habits that caregivers can develop to help protect their mental and emotional health?

Sorry, Todd, I have a gentleman who came to the Wiser Wednesday meetings at the library and I met with him.

We spoke.

I knew his story.

He didn't accept our services for a year and that was okay.

But I watched him every month decline.

And he started out this this gentleman who would tell his story about his career.

And then I would see him come in on Wednesdays and just sit there deflated.

And I watched it like I watched that year trajectory take place in front of my eyes.

And I thought, he knows me.

We've talked about this.

He knows where I am.

He knows what he needs to do, but I can't convince him of that.

And then he randomly called and said, Courtney, it's time.

I can't do this.

I'm declining now.

And he knew the resources, but it was still that mental block and we signed them up on services.

And in six days I saw him again.

I saw the difference.

But our admit nurse was with me that day too, and she looked at me and she said, Courtney, he looks like a different man.

And I said, he does.

And we visited with him after, and that was one of the things that he said.

He said the stress I had is gone.

He said, can I visit with people and tell them my story?

And I said, absolutely.

So now he calls himself my best unpaid employee, and he'll come to meetings and speak and he'll say, this is my journey, this is my story.

My wife was a nurse.

She dealt with dementia and Alzheimer's.

Then she found herself in that situation.

I did as well.

I struggled in these ways.

But now I'm better because.

And we would just sit there and cry, you know, because we had watched him decline and then watched him come back.

Wow, that's a powerful story, I think.

Were you going to.

I was going to say, you know, what we try to focus on is making sure they stay engaged in their communities.

And we have 22 senior centers in our six county area that run different programs that if they are inclined to go to one of those, that's great.

If not, we find out.

What did you enjoy before you became a full time caregiver?

And then we try to encourage them or help them get to those activities again.

You know, just taking a break is will do wonders for you.

And there are so many respite services.

There's the organization you can take your loved one to and give you a break, a vacation, a family reunion, or even a respite grant that can just give you just a few hours during the day to take care of yourself.

And that's what we really encourage the caregivers to search for.

Yes, I love it.

Well, I'm going to give you a phrase, and I want you to complete this sentence for me.

Every caregiver deserves.

Every caregiver deserves.

We'll start with you, Miss Kimberly, to maintain an identity.

Yes.

Take time for yourself to be loved and appreciated.

To know your resources.

Yeah, because that's the lifeline.

Absolutely.

What's one resource every caregiver should keep nearby?

Well, I'm going to say call Carolyn, because if we don't provide the service ourselves, we're going to connect you with the person that does.

And it's just like Teresa said, she's worked with all three of us.

We all work together.

And, you know, if we can't take care of something, I'm going to be on the phone with Kimberly, on the phone with Courtney and say, hey, we have someone, we need to take care of them.

So I'm going to say start with Carolyn.

I love it, I love it, I love it.

What's one thing you wish every Arkansan new?

I wish every Arkansas knew that hospice does not mean death, that it is paid for by insurance, and that no one is going to take their home or their assets.

That is something I fought every day.

I guess that happened way many moons before myself, but the families in my rural area are like, are you going to take my home away?

No, but we'll come in and love you through it.

And that's hard.

That's a hard barrier to break.

Yes, yes, I would say I wish they knew that.

It's easier to plan than they think.

I think it's intimidating to even do like a power of attorney.

You don't actually have to have an attorney to put that in place.

You can print off the paperwork, get it notarized, and it's done.

But I think it's intimidating.

They think it's much bigger and much more expensive, so they don't do it.

And if everyone would just make that a part of their general life plan, just knowing that planning is easier than you think, it's just a little bit intimidating.

I wish they knew that.

It does take a village and the organizations that are out there providing these services really care.

We have empathy for what you're going through and we're going to walk the journey with you.

Oh, wow.

I totally agree with Todd, completely with everyone.

But you have to allow yourself to have an open mind and be willing to have help from other entities.

We don't have to all have curly hair.

You know, your new family does not mean it's a blood family.

If someone.

I just feel like God didn't create us on islands so we don't have to live like we're on islands, that there are people.

When I say genuinely care, it is absolutely amazing.

I was sometimes when I was really struggling and I would I would call one person from Carolyn thinking I was talking to another agency and I'm talking they say, oh, you know what?

You're you're you're you're referencing Candace at this agency.

It's like, wow, y'all know each other.

Two but amazing.

You have to be open because if you're open, I feel like things you're be more likely to accept when you just just keep it in and suffer in silence.

It doesn't have to be.

It's like right.

In a term paper, you took weeks to start that paper.

Then once you start the paper, it's like, this wasn't that hard?

Yes.

I wish every Arkansan knew that there are resources and that you can ask for help.

It is fine.

It doesn't make you less of anything.

And matter of fact, I think it shows your strength and your love for that person.

Because we can't do it by ourselves, right?

Yeah, that's good information.

You know, as we're coming down to a close, I want to ask you, what's something we didn't ask you today that, you know, people need to know.

Well, we cover most of the state, so I will talk with a family.

And they're like, well, my loved one lives in South Arkansas.

You can't help them.

Yes, we can.

And if it is somewhere that's a little more rural than we go in one of the four corners, I probably know someone there that can help you.

Or they'll say, I didn't call you because we weren't ready for hospice.

That's fine.

I have the resources for other things.

Everyone is not ready for hospice, and that's okay.

I can connect you with other people and get you the other help that you need.

So just really that we cover the whole state, there's not much we can't do and there's not many resources that I can't put you in contact with.

I love it.

Anyone else?

Any question that we didn't ask that you think that you can offer information for.

So I think a big thing for me coming from a therapy background is what is the decline look like.

And what is true is all of the progress of dementia is different for everyone.

But the functional decline is very similar.

They start off and functionally they are very capable.

They can still go and brush their teeth and get dressed to do all the things.

They may need some reminders, but eventually things are going to be progressing to where they cannot do those things, and eventually they're a total care potentially if if it progresses that far.

What does that look like?

Because you can be prepared for it if you know what to expect.

And so then you're not surprised, or all of a sudden they can't get out of bed and you can't figure out why.

And it's because they just can't put those pieces together anymore.

How do you assist them?

How do you help them get up and down and things like that?

So that ability to just recognize functional decline and what it should look like and what it will probably be like before it happens.

And on that note, I'm going to ask Theresa, what is one word of encouragement you can give to caregivers that are tuning in today?

One word.

Well, one thought.

How's that?

Believe that there are resources that can help?

I love it.

Thank you all for joining us today.

I think it was a great conversation, and we hope that those tuning in will be able to take advantage of some of the services that your organization offers.

So if this program has shown us anything, it's that no one should have to navigate caregiving alone.

Across Arkansas, organizations are ready to help.

We hope this information is helpful.

For more information and current resources about caregivers of those living with Alzheimer's disease and other related dementia, visit our blog at Arkansas TV.

We hope everyone in Arkansas creates coalitions of care for our loved ones with autonomous disease and other related dementias.

Thank you for joining us today.