- Coming up on "American Black Journal," we're devoting our entire show to the topic of caregiving.

Millions of Americans serve as caregivers to loved ones.

We're going to hear about a project that provides support for caregivers in Detroit's Black churches.

Plus, we'll talk about financial resources and self-care for caregivers.

You don't want to miss today's show.

"American Black Journal" starts right now.

(thrilling music) - [Announcer] From Delta faucets to Behr paint, Masco Corporation is proud to deliver products that enhance the way consumers all over the world experience and enjoy their living spaces.

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- [Narrator] The DTE Foundation is a proud sponsor of Detroit PBS.

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Thank you.

(upbeat music) (upbeat music continues) (upbeat music continues) - Welcome to "American Black Journal."

I'm your host, Stephen Henderson.

Last month, "American Black Journal" hosted a live virtual town hall on caregiving.

It was part of our Black Church in Detroit initiative, and it coincided with the premier of the PBS documentary titled "Caregiving" from actor Bradley Cooper.

Our panel of guests talked about a family caregivers project that's creating 100 caring congregations in Detroit's Black churches.

We also discussed respite for caregivers, financial and legal services, and the unique challenges faced by aging African Americans.

Here's a clip from the documentary, followed by excerpts from the town hall.

(wind rushing) (peaceful music) - [Malcoma] The king is here!

Come on.

One.

Two.

Three.

Don't fall.

- I don't know what number I'm on now.

- Six.

Seven.

Eight.

I'm a wife that's caring for my husband.

24/7.

Whoa.

16.

Good job, man!

Good job.

We're going this way.

Today is our 21st anniversary.

You gonna dance with me?

- Mhm.

- Dance with me.

(gentle piano music) He was diagnosed with a neurological disorder.

There is no cure.

(gentle piano music) I cry, but never let him see me cry.

Good job.

I'm like, "Okay, girl.

Let's get it together."

You ready to get shaved?

- Mhm.

- All right.

Now I'm doing total care.

Helping him to walk, cleaning him, bathing him.

Thank God for your feet.

Right?

You can walk.

The entire process has been mentally draining.

Physically draining.

One more.

Yeah.

To the point that I could no longer work.

Okay, Ken.

Insulin time.

It took everything that we had left.

My credit card debt went from maybe $2,000 to over $30,000.

You ready?

- Mhm.

- The journey's been tough, but it made me fall more in love with him.

Lay back.

I got you.

Even though he was disappearing, it's like our love was growing.

(peaceful music) You too!

Where we are now is that he has deteriorated to the point that he needed hospice care.

One more.

Finally, there's help.

You can get lotion, razors, any type of continence supplies, as well as a home health aide that can come in and make it a little bit easier.

But as of last Wednesday, I was told that he will be released from hospice.

All of the assistance that was in place for him was gonna be gone.

You'll color a picture for me?

The social worker said that he's not deteriorating fast enough.

Color the bus.

No, no, no, you can't eat that.

You're gonna color the bus.

Come on.

(peaceful music) I'm like, "What?

He's not getting better.

He's getting worse.

What's the problem?"

(dial tone) - [Operator] Welcome to Medicare.

Briefly tell me the reason for your call today.

- I had some questions in reference to when you're released from hospice.

(muffled phone operator dialogue) What do you mean by that?

Okay, so basically, it's based on how many days you have left, and if you're not dead by that time, then you gotta come off.

- [Operator] Correct.

(peaceful music) - Now say that back to yourself and tell me how that sound.

- [Operator] I...

It... Uhh... - We want to to start with an overall look at the unique challenges that are faced by African Americans when they reach their golden years.

Joining me now is author Raymond Jetson, whose new book is titled "Aging While Black."

Raymond, welcome to our town hall.

- Stephen, thank you so very much.

It is a joy to connect with you and to be a part of this important conversation.

- Yeah, yeah.

So, let's start here.

"Aging While Black," the title itself intimates the unique circumstances that African Americans face in this space, caregiving.

Of course, I always say that if you take any situation and add race or racial dimension to it, race is often an aggravator in that situation.

It makes things more difficult, more challenging, or worse.

Talk about the unique circumstances here that affect aging for our community.

- So, thank you again.

I would say, in the book that I just wrote, the top line statement is that aging in America is not a race-neutral experience.

And so very often we talk about aging and the critical components of aging as if it is a universally shared experience.

And the reality is that, for African Americans, the American experience has been different in every way.

So, why wouldn't it be when it comes to aging?

And in particular as it relates to caregiving, we, first of all, find the tension between the systemic inequities that exist and the cultural expectations that are attached to caregiving.

And so the economic strain that caregiving places, especially on Black women who reduce their work hours or exit the workforce earlier to provide caregiving services to family members and loved ones, which leads to lower retirement savings and financial insecurity later in life.

We have health disparities, which are well-documented, that Black elders are more likely to experience chronic conditions that require caregiving.

And you couple that with the complex needs in a healthcare system that lacks cultural competency, as a general statement.

You'll see how these things are aggravated.

And then in terms of our community, that is the strong cultural value placed on taking care of our own, which causes people to oftentimes bear circumstances in ways that are not healthy for them or the people in which they seek to provide care.

And then, lastly, I would suggest that Black elders and caregivers are often overlooked or underrepresented in mainstream aging services.

And this cacophony of circumstances creates a situation where aging while Black and caregiving while Black is aggravated greatly.

- A Detroit family care caregivers initiative called 100 Caring Congregations is creating caregiving ministries in Detroit's Black churches to help congregants prepare and plan for roles as family caregivers.

The project is funded by the Ralph C. Wilson, Jr. Foundation and it trains faith leaders and church members on how to provide guidance on topics like self-care, accessing resources, and having difficult conversations about death and dying.

Joining me now is the project's director, Dr. Marilyn French Hubbard, along with two participants from Oak Grove AME Church, Reverend Brenda Jones, who's the Minister of Pastoral Care, and Andrew Jackson, who is a church member.

Welcome to all of you.

- Good evening.

Good evening.

- Good evening.

- Good evening.

- It's great to have you here.

So, Dr. Hubbard, I'm going to start with you.

Explain what 100 Caring Congregations is and kind of where you are with the project.

- Well, our 100 Caring Congregations has evolved to a wonderful network of 100 trained ministry leaders that are managing and creating caregiving ministries within their churches.

So, we started out, really, with just an idea and we had to go to local churches, and we got almost 50 pastors to say yes to the program.

And so, we're in the churches, the ministries have started, and we trained these leaders.

We're calling them legacy leaders.

And so what's happening there is the goal of the program is to help change the current condition of caregiving and to help to provide resources to caregivers and their families within congregations.

And so the first thing that had to happen was a point of contact.

You know, who's going to lead these ministries?

And then what we had to do was to determine whether or not the culture was right within the churches, because many times we're not talking about death and dying.

So, we're looking at the realities of aging, growing older, and some of the things that are likely to happen as we age, which is caregiving, perhaps disability, perhaps end of life, and as well as look at our own mortality.

- So, Reverend Jones, you went through this project's training.

Tell us what that was like and how you shared this information at the Oak Grove AME.

- Well, thank you for having me.

This program was so needed.

I was struggling as the Minister of Pastoral Care to respond to that panicked phone call from a member saying, "They're going to discharge my mom from the hospital, but she can't go home.

What do I do?"

Or the family member that I encountered a couple years ago who...

I was in the vestibule of the church and she came out of the sanctuary and pretty much collapsed in my arms.

And when I probed into what was going on, she had been caring for her husband, caring for her mom, caring for her aunt, and the weight of caregiving was more than she could handle.

She was an only child of an only child.

And so, the burden was horrendous.

And when we looked around our congregation, we realized there were a number of things missing.

One of them was education.

And then along came Dr. Hubbard with a phenomenal program to assist churches in providing education.

So, this program has meant a lot because now I have tools that I can use within my congregation to talk about those sensitive subjects that we all need to talk about but perhaps don't have the tools to start the conversation or the resources and connections.

And that's the other thing that's been birthed out of this program.

I have 100 other people I can call on who may have had experiences that I haven't had yet but they have.

And therefore, I can tap into our community, our village, and say, "Does anyone know of a resource for this or for that?"

And as we say sometimes, I may not know, but I know somebody who knows.

- "I know someone who knows."

Right?

- Yes, yes, yes.

- Andrew, I know you have a personal caregiving story to tell.

We want to to hear that first, but I also want to have you talk specifically about how being part of this training at Oak Grove has changed that experience for you.

- Thank you again for having me here this evening.

It's changed me in the sense that I am now taking better care of myself in terms of trying to get adequate sleep.

I just joined a dance class at church, ballroom dancing, to get some exercise and some movement in.

And even though I have two left feet, I really have benefited from that program.

But the training has just alerted me to things that I need to take care of to make sure that I am in a good physical and mental place to take care of my mother on a daily and recurring basis.

- Can you talk about the care that you're giving for your mom, how long you've been doing that, and sort of the journey that you've been on?

- Yes.

My mother fell and broke a hip and June of 2022.

And when she was in the recovery process, we realized that she couldn't live on her own.

So, I bought her home in August of 2022 and she's been with me since then.

My wife of 45 years transpired transition in March of 2023, and she was assisting me in caring for my mother.

And since that time, I've had the majority of her care.

I do have a caregiver that comes in four hours each day to more or less get her bathed and dressed in the morning.

And then, from that point, I take care of the rest of her day.

- Financial and legal support as well as adequate self-care are critical for family caregivers, but a lot of people don't know where or how to access these services.

Here now to talk about practical help for caregivers are Vincent Tilford.

He is the executive director at the Hannan Center, wealth advisor, Andre Watson, of the Watson Financial Group, and Jason Lachowski, who is Associate State Director of Government Affairs at AARP of Michigan.

Thanks for being here, all three of you.

Vincent, talk about the respite services that are offered at Hannan Center for Camp Family Caregivers.

Why is that so important to care for yourself?

- Well, thanks, Stephen, for having me on.

I mean, first of all, I'll say that Hannan turns 100 years old this year and we've been serving the needs of older adults for this entire period.

But we really didn't start services for caregivers until about five years ago during the middle of the pandemic.

And one of the things that we discovered when we were creating this program was that there wasn't enough adult day programs for people who are living with a dementia diagnosis and one that also equally supports those caregivers.

And so, while we provide this sort of nurturing and sort of evidence-based programming to people who have a dementia diagnosis, we've spent an equal amount of time, if not more, with those caregivers.

Your earlier guests talked about sometimes how caregivers have to take care of themselves.

Well, we really try to help them with that by taking on some of the tasks that they have to do throughout the day and doing those for them.

We provide quarterly caregiving days, or I should say spa days, where caregivers can come and get pampered while we watch their family members in our program.

We help caregivers navigate resources, we provide counseling, and we help to place them when their loved one is no longer appropriate for our program.

We stay with them, and we help them to find other care that better fits those needs.

So, we are just a program that is oversubscribed.

We serve about 80 to 90 caregivers and those living with dementia on an annual basis.

- Andre, you provide financial advice for our aging population as well as for the family members who care for them.

That's key as well.

Talk about what we do.

I mean, almost no one prepares for this kind of stage in their life, especially caregivers.

What are the things people need to kind of keep their eyes open about?

- Great seeing you again, Stephen.

The one thing is just an awareness that I really applaud Dr. Hubbard for alerting and trying to create a proactive position from a trusted component of our community, the churches, because it gives me a better chance to do what I have to do, which is bring the resources necessary to pull off the care or the ingenuity and creativity that's necessary.

An example would be what type of home should mom or dad own?

What should we do with the inevitable situations that may occur?

Do we engage products such as long-term care?

And we have frank conversations with family members about how they can support that loved one that's in need.

- And when we think about the money side of it, I mean, is there a way to prepare for this?

I mean, are there decisions that we ought to be making in our forties and fifties to care for our parents first when they're in their seventies and eighties, but then also to make sure that we can be cared for when we reach that age?

- Yeah, and actually you highlight the bottleneck dilemma that I commonly confront.

Do you provide all of the resources to take care of the parent?

And is there a compromise in the inheritance?

What role does this care take economically?

Can you stop your job?

All of these situations are, unfortunately, realities that we have to figure out a plan and work accordingly.

Another thing, Stephen, that you mentioned is very, very critical.

We have to learn and evolve.

So, if we watch the care that we're providing for our parents, it is critical that we learn from the revelation that we may experience and learn, I guess, with the element of commitment.

You know, what can I do better that allows me to experience my fourth quarter or those twilight years at a better situation?

You know?

And sometimes that's mental, sometimes that's physical.

But it is critical that we learn.

And unfortunately, due to the disproportionate amount of experiences with wealth in America, the African American community is really going through a crisis in this critical time where some of the gains that we may have experienced could be lost or wiped out complete.

So, actually, it's a very challenging bottleneck that I am witnessing because I'm the individual who's in the room, we make the decisions.

Or I may see some of my clients who are not living their best lives, which, again, is why I applaud the vision that Dr. Hubbard is giving back to the community.

Because this is something we have to stay ahead of if we hope to at least give decency.

And I pray that our community, not just community but our country, comes to realize and own this emergency.

- Jason, talk about the tax and financial relief efforts that AARP is pushing for caregivers here in Michigan and at the national level.

- Well, thank you for having me, Stephen.

AARP is the nation's largest nonprofit, nonpartisan organization dedicated to empowering Americans 50 and older to choose how they live as they age.

And one of the ways we do that is through our advocacy work.

And one of our top priorities is providing financial relief to family caregivers.

We do that at both the federal level, Credit for Caring, but AARP Michigan is also working to advance a state tax credit as well.

This is a major issue for older adults.

At any given time during the year, there's an estimated 1.73 million Michiganders who serve as a caregiver for an older adult, allowing them to live at home, where they want to be.

Caregivers are the single largest provider of long-term care for adults living at home.

And they're the first line of defense for older adults from being readmitted to a hospital or being forced to move into a nursing home.

At AARP Michigan, we're very optimistic about the prospects of a credit.

The legislature is currently in its appropriations process, and the Senate has included a $30-million line item to start the credit.

We've been advocating to the Michigan House, a State House representative, and we hope to introduce the credit formally here in the coming months.

- Yeah.

I mean, that credit would make a big difference, obviously.

Are there other things that we need, from a policy perspective, to kind of change the financial picture for the caregiving environment beyond tax credits?

- You know, that's a great question and one of the things that I always point to is the funding that the states provide to the area agencies on aging for home and community-based services.

These are services that are provided through those area agencies.

They allow older adults to stay in their homes, which is where they want to be, and the services are more cost-effective than being at a nursing home.

- And you can see the entire hour-long caregiving town hall at americanblackjournal.org.

Plus, the caregiving documentary is available on demand at pbs.org.

That is going to do it for us this week.

You can find more about our guests on our website, and you can connect with us anytime on social media.

Take care, and we'll see you next time.

(upbeat music) (upbeat music continues) - [Announcer] This program is made possible in part by Ralph C. Wilson, Jr. Foundation.

From Delta faucets to Behr paint, Masco Corporation is proud to deliver products that enhance the way consumers all over the world experience and enjoy their living spaces.

Masco, serving Michigan communities since 1929.

Support also provided by the Cynthia and Edsel Ford Fund for Journalism at Detroit PBS.

- [Narrator] The DTE Foundation is a proud sponsor of Detroit PBS.

Through our giving, we are committed to meeting the needs of the communities we serve statewide to help ensure a bright and thriving future for all.

Learn more at DTEFoundation.com.

- [Announcer] Also brought to you by Nissan Foundation and viewers like you.

Thank you.

(lively ambient music)