Alzheimer’s Stories: Interview with Leslie Martin, Author of “Forgotten Tomorrows, Crazy Todays”

Today, we interview Leslie Martin, author of “Forgotten Tomorrows Crazy Todays”, a memoir of her life as an Alzheimer’s caregiver, wife, mother and struggling standup comedian.

This is the first in a series of interviews with real people, celebrities, authors, artists who want to tell their story with dementia both to generate awareness and honor their loved ones.

More than five million people in the U.S. suffer from Alzheimer’s dementia. It touches the lives of millions of loved ones and caretakers for the people suffering some form of dementia. This includes celebrities and authors who either suffer from Alzheimer’s or watched it diminish the memory and abilities of a family member.

You are not alone.

Leslie Martin, Author of “Forgotten Tomorrows, Crazy Todays”

Most people in their thirties are focused on their careers, personal relationships, and/or starting and raising a family. In my thirties I was married, had two children and I was trying to make it as a standup comedian and then everything changed.

In an instant I went from wife, mother, and comic, to full time caregiver and I WASN’T prepared.

My father’s mother had been diagnosed with dementia several years early. Her diagnosis was sad but she was eighty and had lived a long life. My father took it upon himself to care for his mother on his own. As far as I knew, it was stressful but he was managing. And then I got the phone call that changed everything for me…. My father ALSO had dementia.

I needed answers but there weren’t any; at least not for me and my family. There were no studies of the disease in people of color that I could find. There was no data, other than the fact that People of Color were far more likely to be diagnosed and die sooner than their white counterparts but there wasn’t any information explaining why.

To date, I’ve lost five family members to this horrible disease (my paternal grandmother Wilester Caynon; my father Wesley Martin; my maternal grandfather Robert Liggon and two paternal cousins, Joe {don’t remember his last name} and Frankie Dutchie).

What does that mean for me and my children? Honestly, I don’t know. What I DO know is that we need further research and PARTICIPATION from people of color so that we can get answers.

You have put time and effort into writing books about Alzheimer’s disease and your family.  What motivated you to write them?

That’s a huge question. I was 34, married with two children, I was doing stand up and constantly writing. When I found out that my father had dementia, he had been caring for his mother with dementia for the previous four years.

I realized this was going to be a rough ride. So I kept writing.

My dad was in Florida with my grandmother who had been taken away from him by the State and I didn’t know that. So I got my dad and brought him to Texas, and I became my grandmother’s medical proxy – the person who makes medical decisions for someone with diminished capacity – in Florida.

And I was my father’s sort of medical proxy because he hadn’t gotten diagnosed yet and he was telling everybody he was fine while walking outside with no pants.

Ultimately I had to put him in a nursing home because he became very violent and my kids were small and I’m small plus my husband was away a lot.

What impact do you expect your book will have in the black community that is so heavily affected by Alzheimer’s?

Well, just to say you’re not alone. When my dad got sick, I did not know one person with dementia other than my grandmother. And it all got dropped on my lap. I expect people to feel that they’re not alone. I was alone. I didn’t know what I was doing. I was completely clueless, but I made it through. So, even if you have to do this alone, you can do this. It’s hard, but you can do it.

I also wrote the book because, like I said, my dad and I didn’t really get along. Neither did me and my grandmother. But in the end, it didn’t matter. I didn’t take care of them because they were family. I took care of them because they were human. And it was the right thing to do. I want people to understand that it’s not about love, it’s about compassion. You don’t have to like the person to be compassionate.

And I want to generate awareness to help find a cure. I am now on my sixth family member on both sides with dementia. I don’t ever want to put anyone in my family through what I went through. There is no cure and no one had any answers. I don’t want anybody else to have to go through that.

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How was your relationship with your dad?

My dad and I did not have a great relationship. We had fist fights before when I was in high school. Now that his mind is gone and he’s violent and he does not know who I am and he threatened my kids. And my kids were small and I’m small and my husband was away a lot. So, ultimately I had to put him in a nursing home.

But because he was only 63, he was still super physically fit. He was strong as an ox. No Alzheimer’s unit would take him because most of the Alzheimer’s patients were very fragile and he would fight with them.

So, unfortunately, I had to go with the only nursing home that would take him and it was horrible. It was a terrible place in the hood. It was awful. But I went every single day for hours to make sure that he was ok. On his first week there, he barricaded himself in the dining room. He beat up two patients and threw a chair through a window.

In the beginning, when he was living with me, if you asked him who I was, he could never say my name. He would say. “He, my name”, because my father’s name is Wesley, my name is Leslie, I’m a junior because my parents wanted a boy. When he got dementia, he thought I was a boy. So he would call me “he”, my name.

I just just rolled with it.

Music really helps. My neighbor across the street is a jazz pianist, and I got him to come and play at the nursing home. Everybody was loving it. My dad hadn’t talked for months and during one of the songs he started to cry. And when Arlington Jones, the jazz pianist, came over to say hello to us, my dad started talking to him.

In the end, I was with my father when he died and I sang to him.

I was writing all of this down as it was happening, at the end of the day, which is what I always do as a comic, I would review the day and write jokes about the stuff that happened throughout the day. And there was a lot to write down. And when he passed, I had time and wasn’t working, so I turned these stories into a book.

So when you learned about your first family member with Alzheimer’s, what did the news of their diagnosis mean to you?

Nothing. I didn’t have a relationship with my grandmother. So it was like, well, she’s 80 and she had been loopy for a while. I was 31 when we got her diagnosis, but we didn’t really talk about it.

My dad got the diagnosis three years later. Looking back I realized that he had been suffering probably from about 50. That terrified me. I thought it could happen to me.

That’s why my book is a five year story, in the midst of it, my mother’s dad got diagnosed as well. And my aunt, my mom’s little sister, refused to believe that her dad had dementia for like five years. She was dealing with him like he was being obstinate. So once I realized I’ve got on both sides of my family, that’s when I really got scared.

What’s the most painful memory of all the memories that you have as a dementia caregiver and family member? 

My dad became obsessed with Sudafed. One day my husband was headed to the grocery store and my dad asked to go too. My husband didn’t want to take him because my father was refusing to shower or insisting that he had showered in the upstairs bathroom, except for we didn’t have an upstairs. He was having difficulty showering and was covering up.

They go to the store and come back. My husband is furious because my dad decided he wanted Sudafed. After a screaming match in Albertson’s, my dad bought the Sudafed, again. Now they are both pissed.

And you could always tell when my dad got mad because if he was ok, he would sit on the couch and if he wasn’t, he would sit in the rocking chair. And he would move it just like an inch to prove a point.

He walked in the door, grabbed that rocking chair, moved it and sat down. So I’m trying to talk about the Sudafed, while he screams, “you are trying to lock me up and you won’t let me have stuff.” The reason why I wouldn’t give him Sudafed is because you can’t take it if you have high blood pressure like he did. If you have a cold, you should take Coricidin HBP. The HBP part is for high blood pressure. But he couldn’t wrap his head around that. So he’s screaming and screaming at me.

I finally snapped and started cursing at him, “And I’m f**ing tired and all I’m trying to do is take care of you and help you. And I’m trying to do what you did for grandma.” He replies, “your grandmother hated you.” And I said, “I know that. You got to knock this shit off or I’m going to have to put you away.”

He got real quiet. I’m standing in front of him and he’s still in a coat, hat and everything, and he’s just furious. But he got real quiet and tears started rolling down his face.

It could have been a million years, it could have been two seconds. But I sat down at his feet. And I just looked up at him. And he said something to the effect of “Yeah, I remember when all this started. I heard a pop in my head.” That was it, and we just sat there for a half hour.

And it broke my heart because I’d never seen my father cry.

Would you like to share some joyful memories?

This is my favorite. When my father started getting medications. At first, I put them on his napkin at meal times and he would take them. But later on he wouldn’t take medication from me anymore because he said I was poisoning him. So I had to start hiding the medication in his food or in his drinks. And my dad was a big rum and Coke guy.

So one Friday night, he wanted rum and coke. Normally I would put his medication in his drink, but I’d already hidden it in his food at dinner. I give him his drink and he is about to take a sip when he looks at the drink, he looks at me and takes a sip. He looks at it again and says, “You didn’t put anything in it?” He knew!

Later on that night, we were watching a live boxing match. Nobody knows what will happen, but my father insisted he knew. So he was doing a play by play of what was going to happen, which never did. But then he would go “See?”

Would you like to share another story?

My dad kept running away from home. And when you call the police they ask you if you have a dementia diagnosis. If you don’t they can’t help you. And I couldn’t get him in for a diagnosis.

One day he did this again and it was like 105F in Texas and he leaves the house in dress pants, dress shoes, a dress shirt, an overcoat and a hat.

I sent my husband to look for him. He finds him walking the wrong way down the highway against traffic. I call 911 and I’m telling them what my husband told me and they want to know what my husband looks like. I said “he’s a white dude in a green truck, but he knows who he is. How about asking what my father looks like? He’s the black dude walking down the highway in Texas in the middle of summer in an overcoat. You can’t miss him.”

How was he diagnosed with Alzheimer’s dementia? 

Actually, I never really had an official diagnosis of Alzheimer’s, not even on the death certificate. I think his death certificate says heart failure.

We know it was dementia because he stopped being able to walk. He forgot how. He stopped being able to eat. He forgot how to swallow. He stopped being able to talk. He forgot how. And every once in a while, he would talk. Which was really weird, especially if you asked him a question and then for like 30 seconds, he would be completely coherent and give you an answer. And then it’s gone.

How do you feel about the increased risk that Alzheimer’s in your family poses to you right now?

I don’t know if you want me to answer that question. I have a plan in place. If I get diagnosed with Alzheimer’s, I am going to a very lovely place that has a doctor assisted suicide, and I’m taking myself out. I’m going out on my terms. I’ve seen people die of lung cancer. I’ve seen people die of dementia. I’ve seen people die of lots of different things.

Dementia is one that I don’t want to go out like that. Because of the toll that you take on your family. I will do the fabled Eskimo and iceberg myself if I have to because I won’t do that to my family.

The things that my father said to me. I know it wasn’t completely him, but it was in there. And I don’t ever want to have some random thought spew out of my mouth because of an illness. Not only I cannot take it back, I won’t even know I said it. And they’ll always remember.

I know it doesn’t mean I’m going to get Alzheimer’s. I’m 3 years past where my father was. So I feel good about that. And my grandmother didn’t get it until she was 80 and my mom’s dad was in his 80s. I’m fifty three. If I get dementia in my 80s it’s all right.

The African American community is greatly affected by this memory robbing disease at twice the rate of their White American counterpart. Black seniors joke about having “sometime’s disease”. What would your advice be to people of color?

Stop being afraid of doctors, they’re not going to Tuskegee everybody. Stop being afraid, or if you are afraid, bring a friend. A white one. My first two husbands were white. People listen to you more if you’re with a white person. So, yeah, bring a white friend.

I will give you an example. There are still medical journals that tell doctors that black people are less susceptible to pain. I fight that every time I go to the dentist.

And here’s another one, I got braces when I was in junior high. I had them on for three years, three months and three days. When I got them off I had a gap between my teeth, it’s really small, but I never had one before. I was pissed off and asked the orthodontist, why there was a gap between my teeth. He replied, “I had heard that it’s aesthetically pleasing in the black community. So I gave you a gap.” To fix it, I would have had to wear braces for another six months and I would have been charged. So I have to live with a gap.

Have yourself checked out. Doctors are just people, people who went to school, but they’re just people. They make mistakes. And there’s always new innovations, technologies.

Do your homework yourself because you may go to a doctor that doesn’t know the latest stuff. And if you get a doctor who doesn’t know the latest stuff, do not just take what they say as gospel just because they have MD after their name.

Consult with another doctor, find the people who really know about dementia. Be an advocate for yourself. Because if you’re not going to fight for yourself, who is.

And that’s why people need to talk about Alzheimer’s in the black community and not keep it quiet. And that’s why I wrote the book.

It’s a dramedy. It is super heavy but the stories that I told you are in the book. Because if people don’t talk about it, then there’s no awareness. There’s no sharing of information about what happened to you or who did you see.

I tried to give very accurate information of the places that I tried, things that worked for me, things that didn’t work for me, places that worked for me, places that didn’t. The Alzheimer’s Association did not work for me. They close at 9:00 p.m. Dementia patients sundown. They get really, really loopy in the middle of the night. Do you know how many times I woke up to my father buck naked coming out of my master bathroom?

Taking things with a touch of humor is a great way to cope sometimes. And, that is the biggest takeaway. Laugh. And laugh your ass off at stuff that people tell you isn’t funny. You’re going to need funny.

Do you agree with retired CNN correspondent Candy Crowley that Alzheimer’s dementia needs more researchers and more government funding to find the cure? 

Yes, yes, yes, and yes. There’s not enough funding from the government for dementia. Cancer gets more money than dementia. We want to find the cure, because I really don’t want to have to take myself out because that would suck.

Stone Phillips, a former war correspondent and television news anchor, made a film about his mother in the late early stages of Alzheimer’s. Do you see yourself creating a documentary film about your family to create awareness of the disease as well?

My first husband worked with Stone Phillips. I’ve been trying to get this book made into a movie since the day I finished writing it.

The world has movies about dementia, but it’s always white people. And when they put black people in a story with dementia, it’s always two-dimensional.

This is why I think my book would be a great documentary. I think my book is very much like The Descendants with George Clooney. He’s a middle aged guy and his wife is in a coma and he finds out she had an affair. My book is very much that. It’s not clean or nice but it’s real. And I don’t play myself as the good guy because I did not want to do this. I did not want this responsibility. I tried to pass both of them off to anybody who would take them, and no one would.

You’ve taken the MindCrowd test, how was your experience? 

Research, research, recent research is key to unlocking everything. People should be part of this scientific research. Particularly minorities. We need to be represented.

The MindCrowd test is not easy and it makes you feel crazy, but it really doesn’t matter because it does not diagnose anything. I almost cheated. But I didn’t cheat. But I thought about it.

And this research is online which makes it easy to be a part of.

Take the test, read the articles, get informed, make your own decisions. If you have questions on social media, ask. I noticed that MindCrowd answers people’s questions.

Yes. We send the questions to the neuroscientists and the neurogeneticists for them to respond to people.

One more thing. Black people need to go to the doctor for other things. Because I do know that there’s a correlation between high blood pressure and dementia and diabetes and dementia.

If you get that stuff diagnosed early, then maybe you won’t get dementia or maybe you won’t get another complication. Stop being afraid of doctors.

My grandfather, my dad’s dad was so afraid of doctors that he had his foot amputated. The illness went up to his knee, and then it went up to his thigh, and he died of gangrene.

These are things that if people manage early, can help them lower the risk of dementia. Preventative medicine is much better than trying to fix a problem. Maintenance. Think of your body like your car, – I am talking to black people now – you can put rims on that ride. Well, you know what? Your body is your ride. You need to maintain it as well, if not better than your whoopty vehicle in your driveway. Your car breaks down, you get another. Your body breaks down, you can’t get another one. You only have one.

Leslie’s book can be purchased on Amazon. If you would like to share your story or honor a family member, send us an email. Be an inspiration and relief for other family caregivers.

Don’t miss out on Eric García’s early onset Alzheimer’s caregiving story.