- The journey of dementia for caretakers is quite an effort.

- I keep asking the same questions.

- I snap a lot.

- The partner becomes the primary thinker, doer, planner.

The stress is unremitting.

- I needed help.

I needed some help.

And we're rural people.

We don't look for help, and we don't ask for it.

We just try to fix it ourselves.

- [Amy] People out here are strong, they are resilient, they are courageous.

- That great independence that we, you know, love about the Mountain West is also something that can work against us to create a sense of I have to do this on my own.

- [Amy] Wyoming is frontier State.

People live far apart from each other, often remote to services.

- Sometimes families are not close.

That can lead to maybe isolation or loneliness.

We're social human beings.

When it comes to depression or anxiety, connecting with people is really important.

(gentle music) - [Announcer] Funding for this program is provided by the Hughes Charitable Foundation, energized by love and faith and inspired by the vibrant community around us.

Hughes Charitable Foundation supports organizations in helping those across Wyoming who need it most.

A private donation from Jack and Carole Nunn, providing statewide support for Wyoming citizens in body, mind, and spirit.

The John P. Ellbogen Foundation, empowering the people of Wyoming to lead healthy lives in thriving communities.

Blue Cross Blue Shield of Wyoming, proudly providing funding for education to raise awareness of the mental health crisis in Wyoming and connect people to available care that promotes positive mental health and hopefully saves lives.

(gentle music) (gentle music continues) - We live about 16, 17 miles west of Riverton, Wyoming.

We have a small farm here.

We grow corn, we grow alfalfa hay.

Alfalfa hay is the biggest crop we grow in the county.

My wife, Minnie, she was a farm girl from Northeast Colorado.

When we met, she was a teacher.

Minnie was always way more academic than I was.

She was a math wizard.

What we had in common is we were rural kids, and that's what attracted us to each other.

I worked for the rec department.

One of my jobs was to be a official for football games.

Minnie coached an elementary team.

And when the game first started, she thought I made a horrible call.

So she walked out on the field.

And so I stopped the game and I said, "We've gotta do about three things here.

First thing is you don't walk out on the field.

If you want me to complain to me about my call, then you tell me and I'll walk off the field.

The second thing is you don't grab me by the arm.

And the third thing is we probably ought to go have coffee and talk about it."

We have been married 49 years in 12 days.

It's been a happy marriage.

About nine years ago, she was diagnosed with Alzheimer's.

I think for me it was hard because Minnie was such a active woman, you know?

She was such a go-getter, you know?

I think back about that, and I think that's gone.

Her memory loss is significant.

And so our day kind of starts with her first medication.

I get up at 6 o'clock.

I give her meds at 6, I give her meds at 8, 10, 1, 3, 5, and 8.

And so that's just my job.

It is the toughest job I ever had in my life.

It's 24/7.

There's no real light at the end of the tunnel.

And let me tell you, you're gonna make mistakes.

I've made lots of them.

- In Wyoming, there are over 16,000 individuals and families that care for a loved one with dementia.

- [Sabine] Our aging population is certainly growing, and our overall population growth is not so much.

And so dementia is on the rise here in Wyoming, as it is in the rest of the country.

- The estimates put Wyoming at having 10,000 people with a diagnosis of Alzheimer's disease or any other kind of dementia.

And that's expected to grow by 30% in the next two years.

The dementia journey is incredibly trying for both patients and their families.

And I see this in my line of work.

My job is to meet people out in the community wherever they live, whether that's in their home or a care facility.

And I sit and talk with the patient, the caregiver, and try to listen for the stressors that they experience.

- Hey, how are you?

- Hi.

Good.

How are you?

- Come on in.

- Thank you.

Good to see you today.

Hi, good morning.

Good morning.

(indistinct) - Yes.

- You brought us good luck.

- Indeed.

Part of my job is to assess where the person is in their dementia journey, and then to anticipate problems coming down the pike.

And in that way we can help families stay on track and experience less stress than they might otherwise.

So how have you two been getting along?

- The two of us?

- Mm hmm.

- I keep asking the same questions over and over.

- And how does that impact you, Ibby?

- I get mad at myself because I snap a lot.

- [Amy] Do you?

Tell me.

- I do, and part of it is because I guess I remember days and situations that were different than, sure.

- Dementia is just the general term for what we call brain failure.

Early on, people have trouble with what we call short-term memory.

That can be quite frustrating for caregivers - Now, that she doesn't cook anymore or clean anymore, she can certainly tell me how to do it, you know?

Criticize and that kind of thing.

And I'm not the most patient guy.

And there's stuff that annoy a caregiver.

We go out on the porch almost every evening, and I hear the same issues every day.

We have a neighbor who has a tree that's falling down, and she thinks they ought to cut it.

And we just have the same conversations all the time, and my wife doesn't know what she's doing, and it annoys me.

But that shouldn't make any difference.

That as a caregiver is probably one of my hardest things to do is be able to live in this environment and not get upset.

- Anger's always there.

Rationally knowing there's nothing their loved one did.

There's a sense of things being so unfair.

Then most care partners take on, on top of that, judging themselves.

I shouldn't feel, I should have, if only.

The partner becomes the primary thinker, the primary doer, the primary planner.

The list is nearly endless.

Personal care, hygiene and grooming, dressing.

That includes eating, food preparation, overseeing medications, assuring the medications are taken.

Essentially, all the needs that the loved one has.

- People also don't talk about how physically taxing it can be to care for somebody.

Most of our caregivers care for their person living with dementia 20 hours a week or more.

Some of them, 24 hours a day without any help.

- [Amy] Patients are requiring essentially an assisted living level of care.

Those staff members get to go home at the end of their shift to recover their energy and their cup.

And caregivers who live in the home do not typically get a break.

- So I feel responsible.

I feel absolutely stressed out.

I do love the person that I'm taking care of.

I'm compassionate, I am caring, I'm loving, but I'm exhausted.

- [Amy] Caregivers are also watching as their person changes significantly.

- We got married in a farmhouse in northeast Colorado.

That was in 1974.

She was dressed in a green wedding dress.

That's her favorite color.

She had long brown hair.

She's always been thin.

She was a beautiful woman.

We have been faithful to each other.

We just knew we were in this deal for the long haul.

I just knew I was gonna take care of her, and I know she'd take care of me.

- Think about getting up every day and seeing your partner of 45, 50, 55, 60 years essentially fading before your eyes.

- It can't help but impact you, being a caregiver all the time.

And there are times where you do get sad.

There are times that remind you of things that make you sad.

A lot of memories there.

Minnie's right here.

This is when Lance graduated out of law school, and that was Gavin when he was married.

Our boys.

I might get choked up.

They love their mom.

So.

I look back at the life we had and the way she care of our kids and the way she helped us live our life, because it took a lot of her to do that.

And she was a champion at that.

- This journey is almost always accompanied by a constant companion of sadness and anticipatory grief.

Before we actually lose someone, we begin grieving their death.

- The mental exhaustion that the caretakers go through is so great that will put them and lead them to develop strong mental health disorders and high levels of stress.

Anxiety, depression disorder, even PTSD.

(gentle music) - There is a thing we call caregiver strain.

It's an actual diagnosis.

It's a syndrome that caregivers can experience when they are overburdened by their care taking.

It can show up in many different ways.

They can experience poor sleep, frustration, a short temper, et cetera.

And it can really impact their physical health as well.

- They begin to have their own health issues due to neglect.

Care partners are also aged and may have their own chronic illnesses that they then do not really tend to.

The focus is exclusively usually on that identified person with dementia.

- Caregivers have a ton of trauma, right?

And secondary trauma of watching someone go through a struggle and not necessarily getting the support that they need, right, because the focus is all on the primary client.

But you have all that, you have, you know, an unconscious message that I'm not as important as them.

- For the care partner, the losses are really significant, not only with losing their life partner, but losing connection, becoming isolated, staying at home because I couldn't possibly leave him with anybody else.

I wouldn't do that.

There is a point where that is not reasonable.

Neither is it sustainable.

- [Amy] Things can quickly get beyond one's control, and you can get into a crisis situation.

- I needed help.

I needed some help.

And I didn't know where to turn.

I'd tried locally different areas, but I couldn't find what I needed.

- [Amy] Wyoming is considered a frontier state.

We have a very low population density.

People live far apart from each other, often remote to towns or cities and services.

People here sometimes have to travel long distances to seek medical care or mental healthcare.

- As you age, you may not be able to drive as well anymore, as far anymore.

And we don't really have a lot of public transportation.

You need to sometimes call on your neighbors.

People are super inclusive here.

People are passionate about caring for others.

On one hand, people want to help each other.

On the other hand, they don't want to ask for help.

- [Amy] People can be ashamed or embarrassed to admit when things are beyond their control, particularly men seem to really struggle with asking for help.

- In this state in the Mountain West, people don't talk about mental wellbeing or mental health because we're independent.

The cowboy code of ethics.

(indistinct audience chatter) - [Amy] The cowboy code really taxes people to be strong.

And people in Wyoming are strong.

They're resilient, they're brave, they have a fierce sense of self-reliance.

It's quite impressive.

- Cowboy code is being able to, you know, grit through something or be able to push through.

The Mountain West is unique in the sense that it is open and vast, right?

But in that open vastness, there's isolation.

You have to have some persistence and determination to even get through a day, whether that's through the weather or through tough conditions to get to work, right?

You have to have this sense of independence.

So that great independence that we, you know, love about the Mountain West is also something that can work against us to create kind of just a sense of I have to do this on my own.

- They're really fixed in, "I can do this myself, I can do it myself."

And they also see asking for help or accepting help as a failure, as I should be doing better.

- Acknowledging that you're experiencing mental health concerns like anxiety or depression, which are quite common, can make people feel weak or experience shame.

- The first step, just acknowledging that this is a problem is the most difficult, I mean, thing for you to do.

Just knowing that this is a problem is the step number one.

And not everyone can get to that point.

- I found some help.

Even though Wyoming people don't like to ask for that.

I called a woman by the name of Sabine Schenck, who was with Wyoming Dementia Together.

- Welcome to the Wyoming Dementia Together caregiver network.

- [Kent] They meet every two weeks on a Zoom.

- So today we have Theresa Robinette who is an occupational therapist.

- In this group there is a team of professionals that deal with this all the time.

- And then also start looking into your home, looking for ways to simplify.

Sometimes, if there's a lot of unnecessary items that they're having to sort through, that's just another layer, another added difficulty.

- They give me ideas, little things that have helped us.

- Theresa, this is Kent.

- Hi, Kent.

- You say early stages.

How do you determine what stage you kind of are in?

- That's always the question that we have is, where are they, where are they on this continuum?

- [Kent] Along with that, there are caregivers who've been dealing with what I've been dealing with a long time.

- Howard, I just had a question for you.

When you went out with your wife, say to a restaurant or a place to eat, how did she handle that?

- Well, sometimes she handled it well, and sometimes not so well.

- [Kent] You find that other people are in the same boat.

- Those are a couple of the things that I did.

- Thank you.

I found some help and it has been dramatic for me.

- When it comes to depression or anxiety, connecting with people is really important.

- Absolutely, but how are you doing in terms of taking care of yourself?

- I think things are going well.

I think we're continually making adjustments of one kind or another.

Don't you?

- Yes.

- [Amy] And how are you doing?

How are you doing?

- I'm doing well.

My painting classes have re-upped it, so I'll go to those every Monday and Wednesday.

- It's very important for caregivers to take a break.

We can only work to take care of other people if we first take care of ourselves.

- This is the one I suspect I'm the most proud of.

And now it's printed and many people have it.

I love it.

- Wow.

- This is one that I did a long time ago at the Cheyenne Artist Guild.

And then over here are.

- We can only be patient, loving, and kind if our cup is full ourselves.

And so I often prescribe and recommend self-care.

Self-care looks a little different for every person.

For one of my patient's wife, she likes to go bowling.

Another spouse meets for coffee with their friends once a week.

Church activities are important.

Whatever a person likes to do to feel a connection to their humanity and that fills their cup.

- Her friends, they come and get her and take her and do some things, which might give me a little break.

I can go out to my, I call it my man cave.

I can go out there and do leather work.

It's just a hobby that I picked up to try and burn some hours.

Started out with making moccasins, started out, and then I watched a guy out of Texas build a shaving kit and so I make those and give those away as gifts because I have a lot of friends, and that's something I can do for them.

You have to continually, you can't just lock yourself up in your house.

You've gotta get out and still be social if you can.

I have personal friends that I love to talk to.

- Social engagement and visiting with other people is very important.

- For them to be able to get out, to have that intellectual stimulation, that social exchange.

Some of my beloved care partners say to me, "I don't think I know how to have a conversation anymore."

- Your main focus is focusing on others, but you also have to focus on yourself, right, because you're a valuable asset for that person.

And if you're not focusing on yourself and taking care of your needs, then that person will suffer as well.

- Should I smile or- - No, because then the crooked teeth will show.

- This better be good.

- It doesn't look like you but you got all your clothes on.

I do better with nudes.

You know that.

(Rick chuckles) Well, honey, this was you about 50 years ago.

(Rick chuckles) Got a lot more hair, darker, but you're smiling.

(Rick chuckles) - [Rick] Fun.

- It's not so bad.

(indistinct chatter) - Oh, you two are doing great.

I'm so glad.

- Thanks to you.

I mean, I think of all the different kind of questions I've asked you that have ranged from the most mundane things to really important things, and knowing that you always have the answers, or at least you're gonna find the answer.

I cannot tell you what a comfort that is.

- [Amy] Oh, I'm so glad to hear that.

- I mean that.

- Likely, at some point in each of our lives, we will step into the role of caregiver or caretaker, where we are actively engaged in helping somebody make it through their day.

There is no shame in asking for help.

All of us need an extra layer of support at some point in our journey.

- I read this beautiful quote.

When we ask for help, it is not because we are weak.

We ask for help to stay strong.

- When someone is struggling with mental health problems, it takes a lot of courage to seek out help.

It's not easy.

Even if the help is available, it takes so much to get to the point to say, "I'm ready."

- [Sabine] Caring for somebody with dementia can be an incredible gift.

You spend time with each other in laughter and communication.

And even as the disease progresses, you can still love each other.

And the love is really what carries it all.

- In sickness and in health that you say when you get married.

We just took that as a goal.

That's what we were supposed to do when we got married.

I'm not saying we didn't have scraps during our life.

Holy mackerel, you can't work cattle together and not have scraps.

But it's been a great life for us.

We're both mid 70s.

We know we're not gonna live forever, and I think it will be a relief to Minnie when she passes.

I can't say that it won't be a relief for me.

Am I looking forward to that?

No, I'm not.

But I don't control any of that.

The light at the end of our tunnel is the love we have for each other.

That's the light.

(gentle music) (somber music) (somber music continues) (somber music continues) (upbeat music) (upbeat music continues) (upbeat music continues) (upbeat music continues)