My Mama Joe: Hope & Help

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It's what makes us stronger and better, because everyone should be able to get the care they need.

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[MUSIC] If anybody ask you who I am This sweet songbird is my mother JoeAnna.

You can call her Mama Joe.

She is one of nearly 7 million people living with Alzheimer's in America.

I'm her son Herb, and on behalf of my family and those who love her, I'll be guiding you through this journey and sharing just a portion of her story.

A story of family, a story of hope, hope that we can be better positioned for healthy aging and a better quality of life.

I guess it's fair to ask, who is Mama Joe?

Who is Mama Joe ?

That is a pretty loaded question.

She was my beacon.

She was fearless.

Mama Joe to me is a savior.

Someone who took me under her wing and the rest is history.

A sexual abuse healer voice to the voiceless.

She's everything and there will never probably be anyone that has made an impact in my life more.

Jacksonville, Illinois is where our family set roots.

A small town most known for its two liberal arts colleges.

We grew up in a low income neighborhood.

Mom started filling gaps by providing weekend meals to those in need.

Mama Jo worked with Kathleen Furlong long to expand the feeding program into evening meals.

Always with help from volunteers in the community.

She herself a volunteer, then caseworker at Big Brother Big Sister.

Her service to community would include multiple terms on the school board.

She conducted job skills training, provided food assistance, a clothing closet, she was just a helper.

Mom loved children and dreamed of building a gym and multi-use space so that youth would have somewhere safe and positive.

In those days, she did not receive any government grants or corporate backing and our small church alone didn't have the resources.

There were detractors, but Mama Joe was a fighter and full of faith.

Folks like Joy French Becker, Don and Roberta Meyer went above and beyond with their support for her vision.

And the community was generous with donations including labor, materials, even anonymous gifts.

And with zero debt, the Faith Social Services Center became a reality.

And though it would house rec leagues, after school programs, music production, and so much more, people most often just called it the soup kitchen.

For her efforts, she would be recognized by mayors, governors, and even the White House as the 944th point of light.

In typical Mama Joe fashion, while other awardees settled for an introductory handshake, President and First Lady Bush were greeted with a warm Mama Joe hug.

You can't talk about my mother and not mention her faith.

Because it was her faith that compelled her to love and serve others without regard to their race, sex, religious belief, income level, or any other factor.

She loved people, she loved her community.

Not your typical pastor, she was radical with prayer and praise.

A toss up on whether she showed up to the sanctuary dressed in fatigues, a jumpsuit, or clerical attire.

Her heart was for the streets, sick bays, rehab centers, any place people were in need of help and healing, including overseas.

Especially villages and townships near Joburg, South Africa, like Tembisa.

The day that we went to go meet President Mandela at the time, Mama Joe decided to go and to minister at this church.

And then I asked her why.

She said, well, you know, President Mandela was a good man.

But this was an opportunity for me to go and to minister to some people who the Lord had put on my heart to share the word of God with.

And so her ministering to the people at that time took precedent over her meeting this man who was, you know, a man who had been recognized for many things he had accomplished during that time since he had got out of prison.

But that always just stuck out.

So Mama Joe was about people, about family.

And our family may be constructed a bit different than most.

I liked her, but I really didn't really want to put on that.

I really liked her as much as I did.

But when it came time to one point that there was a possibility of me losing her, I really couldn't stand that.

They would marry in Alton, Illinois, November of 1965.

I remember it real distinctly because after the marriage ceremony, I got a draft notice the next day.

Soon they would start a family.

The gorgeous Paula would arrive November of 67, followed by Joy in 71, happily named in response to our parents' spiritual conversion.

Kristi came Christmas of 1972, and finally a boy in 74 with yours truly.

We were the first four, and it would be that way until 78 when Barbara was adopted, leapfrogging Paula as the oldest.

Her brother Andre the next year, Bryan came in just six weeks old, then brothers Antonio and Maurice.

So in just a few short years, our family size doubled, and I went from being the only boy and baby to the middle child with four sisters all older, four brothers all younger.

I'm not very good at math, but I knew that my dad's salary, divided by so many kids, and you're adding more kids, it's less and less and less.

And we already didn't have a lot of money, so I was like, you know, how are we going to make this happen?

To understand my mom's approach to family, we can look to her own upbringing.

The fifth of 10 children, at age seven, the family would be destabilized by the illness and eventual death of their father from tuberculosis.

While visiting the site of their childhood home, Uncle recounts a story of how mom would trick him into sneaking food and other mischief, only to turn and threaten to tell their mother if he didn't agree to do her chores.

She said, "Okay, if you wash dishes for me, I think it was for a week, I won't tell on you."

She said, "I'll give you my meal for the day if you just go down to the basement with me to do the dishes."

Well, I was all for that because, like I said, we were poor people, and that was a meal for my day.

It's not that mom was ducking chores or manipulating her best friend.

She was terrified of being alone in that basement, desperately trying to avoid the abuse inflicted by an older relative lying in wait.

Her father's death left a void of both protection and provision.

Hunger and poverty would be an all-too-familiar part of her childhood.

So mom would have to eat from the garbage cans, or she'd go in the morning and go into the little grocery store on her way to school and steal something for her and Aunt Frances to eat.

That's why she ended up adopting, and she always wanted at least a family of 10 or more, just like she had.

My adopted siblings, they are my siblings.

You know, they're not adopted.

Even my play ones, they're my brothers, they're my sisters.

Whoever she considered her child, that's a sibling to me.

She was my big sister, third-big brother, big sisters, and then kind of just mentored me and essentially took me in.

Her son at the time was leaving to go to college.

I was supposed to go stay for a week and kind of just moved in.

But we decided to make it official.

So at 25, the Caldwells officially adopted me, and I became Latisha Marie Johnson Caldwell.

Or the 10th child and official baby girl.

And along with Maurice, Brian, and Ronald are the youngest siblings, or who I describe as the final four.

Mama Joe pretty much saved me, took me out of an environment, a bad environment, placed me in a good environment around positive people, and didn't just put me there, made sure that I succeeded.

Ronald was in trouble as a juvenile, and the courts would not allow him to return to his home, but gave him the option to be released into Mama Joe's care, although he had never even met her.

While the rest of us were born in or chose via adoption, Ronald is unique in that he chose us.

And though never officially adopted a Caldwell, he is officially our brother, officially family.

My biological mother didn't like the fact that I chose to stay with Mama Joe versus her.

I made the best decision that was for me at that time, because I can almost guarantee, if I was still, if I had to stay in that projects , I guarantee I probably would have been probably either dead or in jail.

My mother has been shared my whole life.

My mother is a mother to a million and one people.

The name Mama Joe derived from her being a mother to other people's kids, other people's families, other people's needs.

Like Candy, who was feeling isolated and found connection with Mama Joe and quickly became family.

We decided to go parasailing.

I've never gone parasailing, and that speaks volumes about who Mama Joe was.

She was 60 years old when she did it.

Neither one of us could swim.

I was in the water and I got scared, but with her encouragement and with the guide's encouragement, I got to go snorkeling.

So I thank you Mama Joe for the warmth that you've shown to my family and I and to all the other loners and strangers that are out there.

It didn't matter how I looked.

It didn't matter if the scars.

It didn't matter if I had hair loss.

It didn't matter.

Man looks at the outer appearance, but God looks at the heart.

This lady is a Godsend and she saw my heart.

Joy said earlier, Mama Joe was an advocate for the voiceless, willing to fight, stand with, stand up for others.

Jagada Chambers, then a college student, bears witness to this.

I know for a fact, you know how.

I just know how much I needed Mama Joe.

Facing attempted murder charges for a drunken college fight during spring break, Mama Joe refused to abandon him, speaking up for a reduced sentence and a second chance.

Jagada credits her early support and guidance as significant to his mental health.

Now 20 years after his release, he's paying it forward, as advocate for others needing support and a chance.

205 01:11:00,723 --> 01:11:03,759 Man, dang, man, at 25, man.

And people think they're so happy I'm helping.

Like they don't have a clue.

You know, somebody that really helped thousands of people.

And she did it all out of love, not expecting anything in return, which is why she was so shocked when given a surprise party for her 60th.

Oh, she cried like a baby, but was soon to be cheered up by my father and his best David Ruffin impersonation.

And like any family gathering involving Mama Joe, plenty of dancing and good, clean fun.

There would be other parties.

This one definitely was special.

But she would forget and increasingly forget.

She had asked me to give one of the girls at church a check.

And so I went and got it.

and... five minutes later, she calls me back into her room and tells me to give this girl a check.

So basically within five minutes, she had forgotten.

She had written a check and already given it to.

Turns out Paula wasn't the only one noticing things off about Mama Joe's memory.

Typically, Mama Joe would borrow my car and she would go drive around and run her errands, go to the bookstore, down to the mall.

And on one occasion, she called and said she couldn't remember how to get back home.

She did make it home, but you could tell it was a challenge for her.

And I think it got more severe as time went on and to the point where she wasn't comfortable, really even wanting to drive.

So I think that was when Joy pulled the trigger and thought, OK, maybe at some point after we moved to Houston, we should probably have her tested.

And so we visited that neurologist.

He ran all the tests, did the official test.

My father had to be there with her.

And a couple of weeks later, I believe it was, we got the results.

And he did confirm that it was, excuse me, early onset Alzheimer's.

Think about dementia as an umbrella term, a big category.

Alzheimer's disease, we think, might be the most common type of dementia.

One of the hallmarks is changes in a person's memory or thinking.

They may have a more difficult time remembering the names of people they've just met, remembering why they walked into a room or what they were looking for in a certain spot.

They may have more difficulty finding their way in familiar places, may forget the names of certain objects, common everyday objects, or how to do certain things that they were able to do without effort before.

And those problems get worse over time.

So it was good they took action and got the diagnosis when they did.

For some families, this isn't the case.

Little less than half of people who say, "My memory's gotten worse than the last year," have actually spoken with their health care provider about that.

So I think we really have a big communication issue here, and that has a lot to do with stigma.

We rely a lot on our brains.

Our brains tell us where our cars are parked.

Our brains are our personality.

Our brains are our identities.

And when we start to have some of those changes in our brains, we become concerned.

Hearing that you have Alzheimer's disease can be difficult news to take in, to let it register, to understand.

And it's important for doctors to be very clear, very concrete about what they think is going on, to use the word dementia, to use the word Alzheimer's disease, and to explain what that means for people.

You know, there wasn't a whole lot of direction.

You know, just basically maybe gave her two meds that we were told don't really do anything, but could help keep the symptoms maybe, you know, from getting worse.

And that was pretty much it.

We were pretty much left off on our own to visit the neurologist, so whoever once a year is what it was.

Age is a leading risk factor for Alzheimer's, and certain groups are at greater risk.

Black people are approximately two to three times more likely to develop Alzheimer's disease than their white counterparts.

And this is based on data from the United States.

Being female also increases your risk for Alzheimer's disease.

And we say it's not our grandmother's world, right?

Our grandmother's world was very different than the world that women are growing up in now.

And so whether it's work and caring for families, or caring for their children or others, the use of technology, the inundation of instant, you know, response rate to others and not having downtime, the need to take care of themselves, right?

All of that has changed tremendously.

So as a woman of color in her 60s, Mama Joe was actually a triple threat for risk.

Blacks are twice as likely to be diagnosed and more likely to develop dementia at an earlier age.

But why these racial differences?

According to Dr. Okey Enyia and other scholars, it's not race per se, but deep rooted systemic issues.

A fundamental reason why there are stark disparities and stark inequities is because of structural racism and the various ways in which it manifests across the healthcare system.

And so when you have barriers to care, where you are treated and talked to differently, all of those barriers make it more difficult, particularly for black and brown people to get the help that they need.

So for instance, you have a community who is showcasing a high trend in diabetes or chronic illness, whatever that situation may be.

And let's say our black population in that community has a higher rate of that disease than the white population.

Well, that is a health disparity.

When we start taking a closer look, maybe we look at that community and say, oh, there's lack of access to healthcare for in the black communities.

There is a lack of fresh food.

Health disparities are differences in how people experience health in health outcomes based on different privilege.

They are preventable.

They are something that we can change because health disparity is not biological.

It's not predetermined.

It is a social problem.

Regardless of what caused the disease, we had a situation on our hands.

Mama Joe needed help and will continue to stay at my sister's home.

But Joy's role would shift from daughter to daughter caregiver, marking the start of a new journey.

I knew it was no question.

We would serve her.

We would do whatever we had to do to make sure she stayed healthy and that she enjoyed her life however long that was.

You know, we all like to be independent in charge of our own life.

And that doesn't change when we get dementia.

And so it's really important to understand what people can do well and invite them and encourage them and structure the day around them so that they're spending more time doing that.

I would say for 75% of the time, once she was diagnosed, she was fine.

You know, she could basically still cook, help around the house, help with my boys.

You know, she was doing some gardening.

We would go walking.

She could still drive for most of that time.

I think probably the thing that we laugh about the most with Mama Joe is that some of our biggest arguments were based on the fact that we both like sweets.

And if I would go to the store, if I bought myself something, I would always get her something of the same sign, cookie, cake, whatever, come home, greet her, give her hers, lay mine down on the countertop, go change clothes, come back, mine's missing and then she would swear up and down and she never touched it.

Now, sometimes I question if that was truly the dementia of that was just Mama Joe playing me for the fact that I found the cookie wrapper under the bed, you know, a day or two later.

We cherish light moments like these.

Still, caregiving is filled with obstacles and challenges.

For me, hardest part was not just the fact that, you know, the burden was, you know, primarily just on me and my family, but to me, the hardest weight was the responsibility.

And that was because she was so precious, you know, and I know so many people counted on her and I didn't want to let anyone down.

So I think to me more than anything, that was it.

And the part that you're servicing something and you're dealing with an ailment, an enemy that you really don't know.

And you might say, what does a caregiver do?

That could be anything from picking up medication and groceries through really complicated clinical tasks like changing feeding tubes or bandages, doing stretches and physical therapy with the person that they're caring for There were times where I had to come off my job because of different issues in different stages she would go through.

One particular stage, she would always say she had already eaten.

And so she wasn't responding to my dad and wasn't responding to my sister who were there to help.

And so I was the only one who could really get her to eat.

You know, no, Mom, you haven't eaten yet.

I need you to eat this.

I haven't... you Sure?

No, ma'am, you haven't.

And she would eat her food.

And that would be that.

A stark reality of caregiving is that you have to anticipate the unexpected, which can be a heavy load to family caregivers.

You feel drained, because for me personally, every time I want to go to my mom, I want to make sure I presented myself happy.

Like she was not a burden.

And so, you know, playing those dual roles, even though it was very draining, very tiring, it affected me differently because I wasn't able to be the mother that I wanted to be, wasn't able to be present like I wanted to be.

Like I would still take care of my mother, come home from work and turn around and go to a football game or swim practice.

You know, it's a devastating disease that robs people of some of the most core features of who they are as a person over time.

But it's a disease that we know affects people way beyond the person who's experiencing the memory and thinking changes.

It affects their spouse or their partner.

It affects their family members across all generations As Mama Joe's illness progressed, it became critical to have all hands on deck.

That meant involving Joy and Eddie's sons, Noah and Jonah.

So by the time that I had, I can remember anything, she was already kind of far into the stages.

And so to me, it was just, that was normal.

I didn't think anything wrong with it.

Like, okay, she's just forgetful sometimes.

That's Mama Joe.

That's my Mama Joe.

Once I got older and her Alzheimer's started getting worse, I started being able to help out, give her medicine and do all this stuff.

And for me specifically, she liked me a lot.

I was like her Noah, Woah, she would literally call me that.

And so I had that special touch and I was able to get her to do things that anyone else wouldn't be able to, we share the love for honey buns.

And so sometimes I'll bargain with her with a honey bun.

Hey, Mama Joe, if you take your medicines, you get the honey bun.

And after a couple of tries, it usually works.

Obviously, I couldn't do the big things like giving her medicine, but at times where she just wouldn't come out of room, I would go check on her and make sure she was all right if she was just sleeping or what was going on.

So I was just there as company, as I would keep her company.

Jonah may feel his contribution was small, but spending time with an aging loved one with dementia is just as important as more complex types of medical care and support.

One of the key things that happens for many with dementia is they are less likely to be outgoing.

They are less likely to seek interaction.

And that's when it's even more important to approach people and try and include them.

At one point, the boys were helping in the care of not just one grandparent, but two, as Eddie's father was moved into the home for hospice with declining health.

It's like two different fronts.

My grandmother trying to escape the house, roam the streets, not wanting to take her medicine.

And my grandfather, who is bedridden, using a commode.

I don't tell people this, but I slept on the couch for like a good month.

I was restless because I was staying up to make sure that if my grandfather needs something, I'll tell my dad.

And I went through like a small depression at this time.

I wasn't submitting assignments, lying about stuff.

And like in my head, I was justifying it.

I was like, I got to take care of my people.

Like, I'll be okay.

I can do that stuff later.

And... ...it didn't get done later, I was just ...it was a dark time - Eddie's father would hang in there for nearly 15 months before dying at home with family.

Both Noah and Jonah looked to band and competitive swimming as an outlet.

- With stress and just dealing with my feelings, swim has just been really therapeutic.

Feeling the cold water, like relaxing my muscles, and then even exercising a lot, breathing hard, heart beating fast, it just gets my mind off of everything.

- Even the Esters, who as a couple cared for 13 individuals over the past 40 years, agree there has to be some form of relief to avoid caregiver burnout.

- Just a break, an opportunity to get out of the house, to go have a meal outside the house, to go to a movie, to do something for yourself where you can take a moment to try to relax and refresh yourself.

- Because you know, it's easy to slip into depression.

It's easy to just totally ignore yourself, because you have to take care of yourself first.

And I had to get to a point where I wasn't doing that.

And I had to really take a step back because I started to see physical signs that, you know, outside of gaining weight, but other physical signs, you know, where I knew I needed to kind of step back and make sure I wasn't so stressed.

So when I get too stressed, I start to forget things.

And obviously, that's pretty scary having a mother who has Alzheimer's, and I'm like oh my goodness It takes a village to be able to deal with the Alzheimer's patients.

It can be very overwhelming.

It is, it can be, it is overwhelming.

It's overwhelming.

It's exhausting.

It's mentally taxing.

- I emphasize the need to focus on self-care, joy, cultivation of joy, and simple tips for managing their stress by taking deep breaths for about three to five minutes with a long exhale, somewhat like sighing.

And do it for three to five minutes.

And what you would find, you're less anxious.

You're slowing your breath and your heart rate and your blood pressure drops.

There is a stigma in black communities communities of color, about mental health and about going to counseling and therapy that something must be wrong.

We need therapy.

Therapy is an unbiased opinion or unbiased person who's giving you information to help you walk through and to help you talk through situations, through things.

- People still feel a lot of shame in acknowledging that maybe they are experiencing some level of anxiety or depression or some level of early onset cognitive impairment.

What I say to them though is there's no shame.

We all go through life.

We all kind of experience our ups and downs at certain points in time.

And there are certain times when we need a healthcare professional to kind of step in.

And the only way that healthcare professionals can step in is if you actually seek them out and you present to their clinic or to whatever form in which they're available.

- Though not always easy, keeping Mama Jo in the home worked out for our family.

But it's not the only option available and there is no judgment for those who choose differently.

- If home care is not appropriate for your loved one, don't let anyone guilt trip you.

You have to do what is best to keep your loved one safe.

And if it means placing them in a facility, find the best one that you can to provide the care that your loved one needs and place them there.

But just don't forget them there.

Make sure you're visible.

Make sure they see you.

Make sure you're involved.

That'sthe best advice that I could give to someone Our cousin Michael understands both sides.

He served as primary caregiver to his mother and Mama Joe's older sister, Mary Alice.

But after repeated strokes, the family decided together with Aunt Mary that 24-7 facility care would be best.

I said mom, "Are you sure you want to stay here?"

And she just continued to shake out, "Yes, she felt safe.

There were activities that she could do.

She was still able to go to church.

She was still with friends.

And it just took a lot of weight off of my shoulder.

So that's how we decided.

We had a small part in it.

If she would have told us no, then we would not have put her into the nursing home.

And that's one thing I would advise anyone who may have a loved one in a facility, make sure you check on your loved ones Cost is another factor families must consider when weighing care at home versus placement in a facility 546 01:28:58,066 --> 01:28:59,500 There are at least seven million individuals who have Alzheimer's disease, which is resulting in about 11 more million people who are serving as their caregivers.

Alzheimer's is one of the most costly diseases that we have in the U.S. - Out-of-pocket costs can range anywhere from thousands of dollars to hundreds of thousands of dollars to support the care for someone.

And so all of those issues combined are increasing the stress for caregivers.

I never knew until it was basically too late that there was something I could have did to separate my mother's income from my father's income so that she can get some of the benefits that they have Medicaid patients.

Now that's kind of crazy.

Why does she have to basically declare herself poor or broke in order to qualify for Medicaid to get some of these resources that everyone should have access to Medicare is a federal health insurance program for people aged 65 and older or those with certain qualifying disabilities.

Medicaid is a joint federal and state program based on income.

Some individuals will duly qualify for both programs.

- Medicare didn't always want to pay for those costs because there wasn't the ability for someone with a dementiadiagnosis to be cured or to get better.

The good news is that Medicare has come around and Medicare does now cover medications for Alzheimer's disease and other costs associated with caring for someone with Alzheimer's disease including visits to a doctor, brain scans.

Summer of 2024, CMS launched the Guide Model These are Medicare supported programs that focus not only on improving quality of life for the person with dementia, but for their unpaid caregiver Very difficult to know where to turn when you need help with different things.

Many caregivers are caring for their own families at the same time.

Where do we go for transportation help?

Where do we go for someone to come in and stay with my loved one while I can't be there?

Where do I go for help with nutritional services, legal issues related to dementia, financial issues?

So there are many services that can help with these things, but people haven't experienced that often.

The care of someone with dementia involves more than just the medical community.

There's a lot of time between those individual medical appointments where caregiver needs to manage their day and plan for the future as it is a progressive illness.

Even professionals who work in this field all the time, when it's themselves who need it, have a hard time finding services and sometimes they're not there.

- In St. Louis, Memory Carry Home Solutions is an example of a provider using evidence-based interventions to help families navigate dementia care.

- When you become a dementia caregiver, no one hands you the instruction manual.

And even if they did, by the time you realize you're a dementia caregiver, you are too overwhelmed to read or make sense of a how-to guide.

We want every family to find solutions they can easily and affordably implement in their own homes.

We show families, for example, how to set the bathroom up for success with the basics, like bathing and toileting routines.

We help people simplify the kitchen to prevent fires and improve safety with medications and making meals.

- They even provide support for folks like Ms Barbara, who doesn't have family and is living with dementia at a senior facility.

A priest and members from a local parish have become her family, collectively serving as guardians over her well-being and affairs.

- And when she needed some special help, people at visitation said, "You ought to let the court point you as guardian."

And I said, "Yeah, that's just what every 85-year-old black woman needs is a priest, as her guardian."

And I think, really, I mean, Carol and I, oh, no, no, she wants you.

So I said, "Fine, but we're gonna do this as a team.

We're gonna be team Barbara, and when we're deciding whether to put her into a hospice program or take her out, and we did that twice, we're gonna decide that.

I'm not gonna do that without us talking and everybody knowing how to be on the same page."

- And when asked how she feels about all this fuss being made over her... Yippy!

join the club.

(laughing) - This is a great example of forming community for those who may not have a large family like ours to assist in caring for a loved one.

Even with lots of support, Alzheimer's is a disease with no known cure, so still very challenging.

- You may experience the gradual loss of someone whom you have loved deeply for a long time.

May get to the point where they no longer recognize you and that the person for whom you are giving care is so different from the person you once knew.

Yes, they're still your mom, and always we hope their memory will be a blessing to you after they've passed away, but you're really witnessing a form of dying of the identity of someone that you love in real time.

- Many refer to this as the long goodbye, and it affected our youngest brother in particular.

- She just had a presence and an aura around her and to see that disease deteriorate that so much.

It's almost like she was a superhero, and it's like kryptonite, and it's like she just, this shell of herself, just, it's hard to see, it's hard to deal with, it's hard to comprehend.

- I never felt like that.

You know, I could always see my mother.

It's not like I was looking at a shell of her former self.

Her personality was always there.

Happy birthday to you Happy birthday dear you Happy birthday to you Oh, I always put that high tone in there.

- Hey, Herb What's up, man?

What's up?

Just put me a check in the mail.

(laughing) ohh, I fell - Bryan and Joy experienced our mothers decline differently, which is not uncommon for siblings.

I actually agree with them both.

While it was hard seeing the disease progress, it was still my Mama, Joe.

As if cognitive decline and memory loss wasn't enough.

In 2022, Mom's Health took another big hit.

- She was given a medication just simply to help her sleep at night.

It was a medication that should not have been given to senior citizens who have dementia.

And shortly thereafter, she had a stroke.

- Though we were unaware at the time, the offending meds were left in her system, triggering a total of three strokes and a host of other complications.

- She fought very hard.

After each stroke, she was upstanding, walking, running, talking, eating, enjoying life.

However, you can only be knocked down so many times and that damage to the brain, eventually, it affects other areas of body.

- Multiple medical stays and emergencies would result in Mama Joe in great part being nonverbal and immobile, intensifying her need of care.

Our family would rally around Mama Joe, like in 2022, when a bunch of us gathered in Houston to celebrate Thanksgiving, including siblings of both my parents, complete with good food, uno, and of course, a mean game of spades.

In 2023, there was another medical scare that lands Mama Joe in the hospital, this time on Christmas, which is also Kristi's birthday.

- I'm a Christmas baby.

I just turned yesterday 20...51.

It was a very nice birthday.

I got my cake, got my candles.

I even had a piata.

- Turns out she was terrible at piata, but it was fun and a welcome distraction for members of the care team.

And though living hours away in Illinois, both Kristi and Latisha provided important support from afar.

Joy in particular became the advocate and voice Mama Joe desperately needed.

Though trained in divinity at Yale, she's equally suited as a trial attorney, smart, observant, and tenacious to hold providers accountable in providing great care for our mother.

- We have the right to ask for certain types of care, any type of care that we need.

We have the right to ask for second and third opinions.

We have the right to advocate for our health, and we have the right to help our loved ones navigate their health journeys as well.

- During this time, Dad would become quite good at administering moms' meds and monitoring vitals.

With the post-stroke complications, Mama Joe's legs had become contracted and her legs were stuck in a bent position.

She was scheduled for a small procedure to free tendons so that she could stand and prepare to walk again.

But before any procedure, I needed to settle the matter of where I ranked among my siblings as Mama Joe's favorite.

(laughing) - I asked the question the second time, and to the delight of my nephews, she answered no both times.

- you got that on camera, see?

working camera, we got in on camera.

- These would be the last words I would hear my mother speak.

Though surgery on her legs was a success, she did not recover from anesthesia, and her heart stopped.

She always beat the odds.

She always beat the doctor's orders and what they projected for her.

And so we were just waiting for Mama Joe to do Mama Joe things.

And so when I tell you that to this day, I'm still stunned to know that my mother is not here on the earth, there's a profound sense of loss.

- And so when she died, the first thing I did when I went to the room was, "Mom, it wasn't supposed to happen this way."

- I was probably pretty angry with God because I felt that, of course, God couldn't do anything so he could have healed her.

- Knowing the person that chose you, wanted you, loved you, is not here, that covering, that level of protection, leaves a big hole.

- I don't have the drive to get up and do this or do that.

I'm not the first person that does all from what.

And I dare tell, won't be the last person that lost someone that's close to him.

So I just got to realize and find out how to navigate through time without her.

[faint singing and music] - The home going for my mother was just a type of service she would have enjoyed being at.

A joyful celebration with lively call and response singing, poetry, funny stories, tributes from her brothers, her children, and a beautiful eulogy from Richard, who considers himself Mama Joe's number one son.

Yet there was pain, hard to see the hurt on my siblings faces, watching my father say farewell to his wife of nearly six decades.

A big hug from grandson Owen provided dad a bit of comfort.

Ultimately, ashes to ashes, dust to dust.

[music] ..."We are family" (water splashing) - Days without Mama Joe have been tough.

No two ways about it.

But our hope is that you can be better informed and equipped not only for caregiving or dementia, but position for healthy living and aging.

So in these last few moments, want to share both hope and help.

Hope looks like The Outlet.

A male mentoring program founded over 20 years ago by Michael Phelon.

Though a nephew was more like a son to Mama Joe, and out of all of us, he best demonstrates her heart for outreach.

And is still passionate about bringing hope, help, and health, not just to young males, but to their families and the community at large.

- As an organization, we are Mama Joe.

And if I could get a T-shirt, I would.

Because this place oozes Mama Joe.

And I hope even when I'm gone and the legacy is still here, they will know that if it wasn't because of Mama Joe pushing me out front and said, "Mike, I believe in you."

You can do it even when you didn't believe in yourself.

Aunt Joann really, I think embodies service.

- My baby brother, who may be the smartest of us, admits that he knew nothing about dementia until it hit our family.

We have hope that awareness will be increased through outreach and education, as demonstrated in Northeast Ohio, where he now lives.

- And what I'm seeing more of is interdependent outreach, which means that different organizations with different interests come together to help serve the community and to help them get access to different resources and information.

- Whenever there's an opportunity, whenever there's a free lunch and learn, whenever there's a community event, and if it's a healthcare event, take advantage of the free resources that are given.

Just take advantage of any learning opportunity.

- Deborah Cloud is founder of a long-standing support group for caregivers.

And Rosetta Moore frequently shares her caregiving experience to encourage others.

- Some of the benefits offered by a support group have to do primarily with a sense of belonging.

And then people say it's nice having someone to talk with who is going through the same thing that they're going through, people who can identify with their plight.

- Even though every person that has the disease responds differently, but I can share my experiences with joy, with peace and with love, that they can go through the same thing.

- Truth be known, the church, especially in black communities, should not be discounted as a hub for information and outreach support.

- So why not take the opportunity not only to provide the spiritual help, but the connections around health inequities, around the social ills that face our communities.

We are the connector.

And so if we stop connecting, who will?

- Many healthcare professionals lack understanding of how to care for a patient with dementia and their family.

We find hope in specialists like Deb Kostiw, who has developed online courses to help train providers.

- I was trained in medicine and in geriatrics at one of the best medical schools, Harvard Medical School, but I learned so much from Deb's course.

We tend to go to medications right away, but a lot of the medications really aren't safe for older people.

For instance, the medicines to help someone from sundowning at night, those medicines actually elevate the risk of stroke.

- I have had so many healthcare professionals come to me.

I think the thing that kind of surprises them the most is how easy it really is.

So another good piece to this to add in would be, if your person with dementia is eating dinner and they're only eating one side of the plate, then probably one of these glare spots is right there.

So simply turn the plate, just turn the plate, and then they might be able to see it.

Does that make sense?

- If facility care becomes an option for your family, in addition to a clean and safe operation, consider matching the interest of your loved one to the amenities offered by the facility.

For instance, Mama Joe was a social creature and enjoyed board games.

So a place with a thriving activity program would have been a must.

We find hope in knowing there are quality senior living facilities like this one that offers a more affordable alternative to assisted living.

Jerry Doss, who is both pastor and developer, cautions us to get an early start in preparing for our future.

- We are getting older and we wanna prepare for that, whatever that looks like, because it's not fair to our children or our relatives if we put them in a position where their life is altered greatly because we didn't prepare.

Don't be caught off guard.

- There is also help in understanding Medicare and insurance options.

- Medicare is an indeed complex, mysterious language.

The good news is that there is lots of help available.

In all 50 states, there are programs called SHIPs, and that stands for State Health Insurance Assistance Programs, and there is federal money, specially designated for Medicare counselors like I am to help beneficiaries and their families understand how Medicare works.

We have no financial stake in any decisions that we might guide a beneficiary to make.

We understand how Medicare parts A, B, C, and D work, what kind of coverage is available and how to guide beneficiaries toward making their best choices so that they can get the health care that they need.

- With all that I've learned about Alzheimer's, course of filming, like family history increases risk and that blacks may show signs at younger ages, I knew I needed to be proactive.

So the day after my 50th birthday, I strolled into the Smith Center for Alzheimer's Research and Treatment at Southern Illinois University's Medical School.

Hi, are you Mr. Caldwell?

I am.

I am.

I'm Cindy Womack.

Recently I've had minor concerns, like at times certain words that have been staples of my vocabulary, escape me during conversation.

It's no secret that men are less likely to see their primary care providers, even more so for black men, even when they have the insurance and means to do so.

I did not want to be here.

I was scared.

I did not want to do this exam, but I had to.

Dementia is real and I needed to know for myself as well demystify the testing process for others.

So what's making you uncomfortable?

Oh, just because it's making you face the possibility that there could be an issue, right?

So what did it mean if I couldn't write 11 after 10?

What if it, what did it mean if I couldn't remember wagon, paper, donut?

And then what comes next?

So those kind of questions are kind of stirring.

Well, let me reassure you, you passed all of that.

Okay.

So this is a screening exam.

We're looking for red flags in your cognitive responses.

We're checking your attention.

I was relieved to get the good news that I passed, but you can see I'm fighting back emotions and tears.

My mind is wandering and I am wondering what if I'm a joke could have gotten tested early at age 50?

The earlier you come in, the better it is for you, because if we can establish a diagnosis, this opens up other opportunities for you.

We wanna catch people where they have, where they haven't lost as much brain volume or kind of functional capacity of the brain, and where interventions are more likely to be effective, and also to prepare the individual and their family in terms of what to expect, like what's gonna come down the road so they can start to plan and kind of preserve quality of life and for both the patient and their family.

- There is hope and help in terms of advances in research for Alzheimer's, including disease modifying therapies approved by the FDA.

- So, Lecanumab is an antibody that binds to clumps of amyloid beta protein, and that's the protein that forms the amyloid plaques in the brain.

So, Lecanumab binds to clumps of the protein that can either be floating around or be in plaques and clears them out of the brain.

So, by clearing these clumps of amyloid protein and plaques, we're slowing the progression of Alzheimer's disease.

- Over 20, around 20 years since we had a new treatment out for Alzheimer's disease.

So, this is a very important first step.

- We are not endorsing Lecanumab or any treatment or therapy.

Like most drugs, there can be side effects, brain swelling and bleeding in this case.

Always consult with your provider about the risk, benefits, and cost of any therapy or treatment.

- The two main drugs that are FDA approved right now, one of them, you have to come in for infusions every two weeks.

Another one, you have to come in for infusions once a month.

So, when you talk about rural communities or people that simply have issues with transportation, this can be a big challenge in trying to serve those people.

- In rural communities, people are, they don't have access to healthcare.

So, they may not even, the diagnosis may go missed.

The care may be delayed.

- As an alternative, there is non-pharmacological research like the Sharp Walking Study in Oregon.

So, what Sharp is, it gives older black adults a place and a purpose and a time to engage in healthy activities.

People walk in groups of threes and they can have healthy memories or perhaps they have some memory problems or maybe they have early stage dementia.

And they are walking together three times a week over the course of, it could be four months or six months, but the goal is three times a week.

And they're given a tablet device, one for the group.

And on that device, pre-navigated routes, one mile loops and images pop up.

They're GPS linked historical images of the neighborhood.

And so, that is the reminiscence piece.

These are prompts.

They can stand on the corner and look at what is and they can look at an image of what used to be, right?

Especially in the gentrifying and historically black neighborhoods.

And in this case, it's here in North and Northeast Portland.

This is a way that people can focus on their brain health while actually focusing on what is important to them, what's meaningful to them.

And that is their history, their neighborhood, their community connections, and the memories and the stories that they have attached to their neighborhood and to each other.

- Advocacy at the state and federal level provides hope for policy change.

Policy change that improves access to quality care for all.

- My mother taught me that service is the rent that you pay for the space that you occupy.

I wanna see things change for other people.

Find your passion.

If you have a loved one or someone that's been touched by Alzheimer's and dementia, get active.

Let your voice be heard.

You think you don't make a difference, but you're not by yourself.

- In 2030 in the United States, older adults, age 65 and older, are going to outnumber younger adults under 18.

That's fantastic.

But with those increasing years comes an increased risk for dementia.

We know people can live healthy, productive lives.

We wanna make sure that health span matches lifespan.

- It's a blessing to get older, but we also want to enjoy that.

And that's where the quality comes in.

So when it comes to healthy aging, it's all about nurturing our mental, physical, and spiritual health on a daily basis so we can live at our highest capacity and really live out our life's purpose.

- There is hoping that there are opportunities to participate in research, which could be an observational study or a clinical trial.

- What I would like to see is the first survivor of Alzheimer's.

- So we have a program called Trial Match, which essentially is like an online dating service for research trials and helps individuals, whether they're those with Alzheimer's or dementia, as well as healthy adults, because we need all of them to participate in research to recognize the difference between someone dealing with a cognitive change and someone who is not.

And so there are all kinds of trials across the country that people can participate in.

- One of the problems that we have though, is that much of the recruitment of those clinical trials often don't happen within communities of color.

We can creatively work with the community to provide education around clinical trials while also thinking about ways to have the community, especially communities of color, engage in research.

- We are living in this new era of treatment that has not happened for the 100 years, 120 years before that, the people never had access to these things.

And so we are literally kind of at the forefront and hopefully what is the beginning of the end of dementia.

- We have new therapies coming out that were recently approved.

There's more coming down the pipeline that are being evaluated in clinical trials.

So I really do think that there's a lot of hope for the future.

- My family and I are hopeful.

Mama Joe was hopeful and is at peace knowing that even in death through her story, she is doing what she has always done, which is help others.

- Just seeing her give her life away, just seeing her sacrifice.

And I think that is who Mama Joe is.

- Maybe we should let Mama Jo tell us for herself exactly who she is.

If anybody asks you Who I am Who I am Who I am If anybody asks you Who I am Just tell them I'm a child of God I tell them I'm a child of God [Music] Healthcare should be easy and avaiable for everyone At Molina, this idea has been at the heart of our mission for over 40 years It's why we connect so many people to medical and mental healthcare Its why we donate our funds and time to local communities through the Molina Cares Accord Its what makes us stronger and better Because everyone should be able to get the care they need At Health Forward Foundation we advocate for a future Where people are healthy, power is shared and communities are equiatable and just We partner with trusted commmunity organizations in Kansas and Missouri Our puspose areas remove barriers, amplify community voices build health & wealth, and reshapes systems and policies Change is possible If we continue to champion a better brighter future for all Together...Let's move forward