Be Your Own Caregiver

Bern Nadette Stanis (stahn-es) is best known for her groundbreaking role as Thelma from Norman Lear’s series Good Times. As the first black teenage girl with a recurring role on prime time television, she had the benefit of two families, her real-life family with her mother, father and siblings, and her TV one.

The call on her life came as tragedy struck her real-life family.

“My father was murdered and my mother never really recovered from that,” she says. “She hid her depression from us, her loneliness. I think it changed her.”

Bern Nadette’s mother was diagnosed with Alzheimer’s in 2001. A little while later, Bern Nadette brought her home to Los Angeles to care for her. The eight-year journey to her mother’s death prompted Stanis to take action. Her most recent book, The Last Night, serves as what Stanis calls, a companion book to any caregiver of a loved one with Alzheimer’s. It’s an honest portrayal of the up and down journey that caregivers have to walk. She also reveals some clues to the cause of her mother’s diagnosis, and a caveat to left behind. Be Your Own Answer interviewed her. The full story is below.

Be Your Own Answer (BYOA): How did you find out about that?

Bern Nadette Stanis (BS): We noticed that she wasn’t remembering certain things. And I didn’t notice anything in particular because I was in California. When I came to see my mother, I noticed something was wrong. It was the way she fixed her hair and put her clothes together. She sounded normal and okay. But I knew something was wrong because I knew that wasn’t the way she fixes her hair. Instead of making her feel bad, I told her, “Mom, let me fix your hair today.” She let me do it.

I knew right then I had to bring her home to be diagnosed, because something was wrong.

BYOA: So it had a lot to do with your prior relationship with her?

BS: Yes, I knew my momma.

BYOA: So when you heard the diagnosis, did you understand fully what that meant?

BS: No, I had no idea. In fact, when they told me she had Alzheimer’s, I said, Okay, well, mother, we’ve come through so many things in life. We’re going to get through this too. I really thought I would find a cure for this and I was going to save my mother’s life. I really thought that.

BYOA: Had you heard anything about Alzheimer’s before?

BS: Just in passing. I heard it was a disease, but it didn’t mean anything like that to me. It didn’t affect people in my life. I had no concept of what it was.

BYOA: Did they prepare you adequately for what was happening?

BS: Absolutely not. The neurologist said nonchalantly, I’m going to give you some medication to take with you, to give her when you get home, for what she has. It’s going to be Aricept, because she has Alzheimer’s. Just like that.

BYOA: Was there any counseling or anything?

No. Nothing was provided after that. Nothing was said after that. And I looked at him as if he was very cold. Because he was something he knew about, but he didn’t say, well, this is something..

BS: So I said, well, I think we’re going to find a cure, she’ll take her vitamins, and he just held his head down and shook his head.

BYOA: Wow. You talked about in your book signing that it’s something that affects the Black community twice as much as others. [Statistics state that the Black population in the US is 13% (41.6 million), the Hispanic population is 17% (54.4 million), and Caucasian population is 62% of 320 million (198.4 million) people. 14.5% of 320 Million (46.5 million) are 65 and over. The estimate of Blacks with Alzheimer’s is 3.76 million, representing 9.1% of Blacks vs. 4.08  million Hispanics, representing 7.5% of their population, and 2.9% Whites, at 5.75 million). Even the rate of Black diagnosis is three times as high as whites, the number is larger because whites outnumber blacks 5 to 1.] Source: http://www.census.gov/quickfacts/table/PST045215/00 http://www.alzheimers.net/resources/alzheimers-statistics/

BS: and it affects Black women even more.

BYOA: Have they in any way shape or form given you any reason for that? Is it a health issue?

BS: Yes, it is. They say that high blood pressure and cholesterol are factors. It’s a lot of what we’re eating. Now, we don’t know the cause of it, but they think it has something to do with diet.

BYOA: What about the drugs you get for these diseases?

BS: The drugs for high blood pressure hav a restrictive effect of the blood getting to the brain. They’re also looking at the similarities of Diabetes II and Alzheimer’s, because Diabetes affects the body the same way Alzheimer’s affects the brain. There’s so much to learn.

BYOA: What have you learned? You’ve begun an organization called Remembering the Good Times [this is a fiscally sponsored project under Streams of Dreams in GA.] What was the purpose of starting that organization?

BS: Well, the purpose of starting it was that my mother and I were watching Good Times, and she was in the middle of the “Monster”. I call it the Monster of the Mind. And she was looking at Good Times, and Thelma and JJ were fighting and carrying on, and it was only she and I sitting together and she looked up at me and said, “You know, that’s a cute little ol’ girl.” She had no concept that it was me, but she knew it was something related to me because she spoke to me about it. But she had no concept of what was going on. It was like a knife in my heart that twisted because my mother no longer knew that Good Times belonged to us.

BYOA: Wow. So, tell me about the day you decided to start a foundation?

BS: When that happened I said, when this thing is over, I’m going to start a foundation in her honor, to go around and educate people about this disease because when my mother first got this, I knew absolutely nothing about it. It’s not because I’m an ignorant girl, it’s because not in my community, it’s never been brought up, I don’t know anyone who had it. People don’t talk about it. We suffer in silence with this thing. I said, no more. No more. Because it’s such a taboo thing to say your family has Alzheimer’s because they think you’re going crazy. Or nobody wants to be associated with it. They’re ashamed of it. And so I wanted to wipe out that taboo. I’m going to do that. One person at a time.

BYOA: Excellent. Do you have speaking engagements?

BS: When you do speak to people, they open up. Women, men, black, white, they tell you. My grandmother—my mother, she’s a caregiver. She went through this. Everything you’re saying, we went through this. And you see, I had no one telling me this beforehand. Everything I had was stuff I saw on the internet which was so academic. No one said, this is what I went through. And so when I wrote this book, The Last Night, I wrote it as a companion book. You’re going to read that. I wrote it as a friend, someone who can comfort you in the middle of the night. [It’s for] when you’re in the middle of the night, and tears are falling because you don’t understand why this happened to your mother, or why this happened to your loved one. Why you? Look what I have to do. God help me– I don’t understand this. It’s there until He makes you understand it.

BYOA: Talk about depression and Alzheimer’s.

BS: I wrote the book a certain way. I wrote the book so you could know my parents, know my life, so you could love her the way I loved her, and understand the pain of what we go through when we love someone so deeply. To me there’s a lot of depression involved. My father was murdered, and my mother was 59, and when she turned 69, that’s when we noticed the damage that the 10 years did. She was alone. Being lonely, loneliness has something to do with depression. Depression leads to dementia, and dementia can lead to Alzheimer’s. See how it goes? I believe my mother was suffering like that, and when she turned 70, that’s when it hit. But listen, after my father died, around her early 60’s, she developed Parkinson’s and the Parkinson’s led to the Alzheimer’s. It doesn’t always lead there, but her particular Parkinson’s led to Alzheimer’s. So I do think it was the shock of my father’s death. That’s why I wrote the book exactly the way I wrote it so that people can say, maybe this does lead to something, when you’re shocked and you don’t deal with it.

She just kept going. We didn’t know she was suffering.

BYOA: That’s another Black disease. Keep it moving.

BS: That’s right. Keep it quiet, keep it going. But you see you don’t know what it’s doing to that person inside, their brain structure. So that’s why I wrote it like that, so we can look at that. Because that’s something that we have to deal with. We have to deal with it as a people. I’m going to use the face of Thelma to put a face on this thing. My mother gave me this face. And it happened to her. I want to help so many people, to be aware of it, and start questioning and figuring things out. Ask: Why am I taking blood pressure medication so young, from 25 years old, 35, 45? Why?

BYOA: That’s something deep.

BS: Why don’t they talk to us holistically? Why don’t they tell us to go get apple cider vinegar? 1 TBSP of apple cider vinegar 3 times a day.

http://www.webmd.com/vitamins-and-supplements/lifestyle-guide-11/supplement-guide-apple-cider-vinegar

http://www.mindbodygreen.com/0-5875/15-Reasons-to-Use-Apple-Cider-Vinegar-Every-Day.html

Why don’t they tell us 3 little garlic cloves… 1 clove, 3 times a day, for 3 days will drop your blood pressure.

http://www.livestrong.com/article/434009-how-much-garlic-should-you-eat-to-lower-blood-pressure/   http://www.webmd.com/vitamins-supplements/ingredientmono-300-garlic.aspx

And whenever it rises, do the same thing before it starts damaging your veins, and you can’t do anything but take the medicine. So whenever your pressure starts becoming high, and instead of them putting you on medication you say, Wait a moment, let me go home and try something first. And if it doesn’t work in a couple of days, then put me on it if you have to. But let me try this. So we just have to become more aware so we can eat better and do things starting early. So that we don’t grow into that. We’ve got to change our lifestyle’s way of eating. That grease? All that fired food? That’s the cause of so many things that are happening to us.

BYOA: Sugars, everything else…

BS: And salt! People don’t realize what salt does. Salt causes the pressure to rise.

BYOA: With your foundation, are you discussing these things? Holistic health, etc? How is your foundation helping spread that word?

BS: I do it in my book, and speaking. Our foundation is just 3 years old so I haven’t developed that yet. That’s where we want to go. We want to go with education, teaching and learning more. I’m still learning. It’s a baby. But it’s growing and it’s going to be big. I’m determined. I’m trying to save myself. Because we don’t know if my mom has it and [that means] I’m going to get it. We don’t know what that thing is. We’re trying to do as much as we can now for the education while I can. I don’t know if I’ll get it. But I’m fighting.

BYOA: Thank you so much.

BS: You’re welcome.