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The moment that ‘broke my heart’ during her mother’s Alzheimer’s struggle


GIBSON JOHNS, AOL.COM
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Eight years ago, Academy Award winner Marcia Gay Harden received news about her mother that would change her life forever: She had been diagnosed with Alzheimer’s disease.

Though it wasn’t a complete surprise — Harden had noticed that her mother kept on forgetting where she had placed her passport on a recent trip — it still shook her to her core.

“It broke my heart,” she told me when I sat down with her recently to talk about her work with Notes to Remember. “I understood in that moment that something was happening.”

Since her mother’s eventual diagnosis, the “Code Black” star has made it her mission to spread the word about the debilitating disease, with particular attention paid to early onset symptoms. One of the ways she’s raising awareness is through Notes to Remember, a campaign specifically aimed at calling out those early signs of the disease.

Read my emotional conversation with Marcia Gay Harden below, where we talk about her mother’s struggle, the embarrassment people feel that keeps them from reaching out for help and what her mother things of her amazing dedication to raising awareness for the very disease she suffers from.

Alzheimer’s disease is very close to your heart. Why is it so important for you to raise awareness about it?

Well, my mom has Alzheimer’s, and she was diagnosed about 8 years ago. I think that’s the first and scariest step — actually getting a diagnosis. Our campaign is about raising awareness about the early signs and symptoms, because they’re hard to recognize. They can look like just signs of aging or distraction.

Or just forgetting something.

Or just forgetting something! We just go, “Oh I do that all the time…” You want to alleviate a person’s worries. This campaign is about helping to distinguish the early signs and symptoms and, if you feel that you’re noticing those things in yourself or a loved one, opening up that conversation to gently and bravely move toward getting a diagnosis from a doctor.

It’s hugely important, because I think a lot of the things I come up against — a lot of the things my mother came up against — is people going, “Come on, ignorance is bliss. Why would you want to know?”

That’s such a dangerous mentality to have, though.

There you go — I’m with you on that. Ignorance is bliss, but knowledge is power. So, if you know, then you can be in charge of picturing what your future is, and letting other people around you or in your family know what you hope for in the future, so they can carry out those wishes.

What was the journey to diagnosis like for your mother? Did you and your other family members notice some of these symptoms that you’ve mentioned?

Mom and I traveled a lot together, so I had seen and heard a lot from her that she had a fear that something was wrong. She had a fear that she was forgetting things. At first, there were totally dismissive moments, like when she forgot where she put her passport on one of the journeys we were on together. Then she frantically finds it and puts it where she will remember it next time, but she would do that two or three or four times. She was very adamant that I not take control of that, that I not say, “Let me just keep it, Mom!” That’s what I was trying to do. But she wanted to put it in her purse and remember where she put it.

As I watched that, it broke my heart, because I understood in that moment that something was happening. I noticed that more and more, but it wasn’t until a couple years later that she was actually diagnosed. I wasn’t with her during her diagnosis — she was with another member of the family — and one of the things that I note for all of us is that we hope your family is cohesive in the understanding of it and the way that it’s handled. But every family is different. What family is ever cohesive about anything? [Laughs] So, the more power you can take upon yourself to be the director of what you’re hoping for, the better.

 

“Ignorance is bliss, but knowledge is power.” – Marcia Gay Harden

 

Since her diagnosis eight years ago, have there been ways that she has been able to treat it? How have you and your family served as her support system?

During a person’s analysis, every doctor will determine something different for what that patient needs. As of this date, there are no cures, but there is a plethora of research being done, and a lot of the research is aimed at the early stages. One of the things we talk about on the Notes to Remember website is you gain a certain power in being able to say, “This is how I want to direct my future.” But you also have the opportunity to join clinical trials, if you’d like. There’s no one treatment or recommended behavior, but what is understood is that they need caregivers. My mother does have caregivers that care for her, but it is a neurological degenerative disease, and the numbers are only getting larger and larger and larger.

How did you get involved with Notes to Remember?

You know, I’ve been helping to care for my mom for the past eight years, so when this campaign came along and allowed me to work alongside Biogen, it was an honor. What I want to do is spread awareness about [Alzheimer’s]. I want to encourage people to have that conversation, and I want to acknowledge that it’s not easy — it’s scary! I want to tell people that the good that comes from [having that conversation] is the gift of time that you give to yourself and your children, and the gift of direction that you give to yourself and your children.

Like I said, you also have the potential to be involved in trials if you want to. The goal is to be a part of the hopeful future cure and halting of Alzheimer’s. That doesn’t happen without activism, that doesn’t happen without awareness and that doesn’t happen without putting your foot forward and taking the stride.

And do you also think there’s a bit of embarrassment that comes with the territory, too? Because of the stigma around Alzheimer’s, people don’t really want to admit they’re being affected by it?

That is true. I use the word “taboo” sometimes to say that, but I like your word of “stigma” or “embarrassment,” because I think that’s more specific. People don’t know how to talk about it! For a long time, people just didn’t talk about it. I think there’s a lot of fear involved, because if you forget things, people think … my mother might think when she forgets things that that means she’s not smart or not presenting herself the way she should be presenting herself. They lose a crucial social interaction, and you don’t want to embarrass them.

This is about opening that door to conversation and awareness. It always starts with awareness. Just by being aware of it, you’re asking your brain to understand it. Then, you start noticing it in other people. I’ve never met one person who hasn’t had a single person in their family affected by Alzheimer’s or dementia.

Has using your platform for good always been something that’s important to you?

You’re 12, so you don’t know all about me, but I have to say that yes, it has. I’m completely blessed that I have a celebrity audience, and it’s just to advocate for things that are important in the world and to put my voice and name behind things that may change the life of someone else for the better. That’s what I’ve always done. But Alzheimer’s is the first time that it’s something that is so personal and could make me cry in a second. [Gets choked up] Yeah, it’s very personal.

When you started raising awareness for Alzheimer’s, what was your mother’s reaction?

That’s a good question. I’m writing a book, and my mother and I will talk about it. I’ll say, “Mother, I’m writing a book for Alzheimer’s.” And she’ll say, “Oh, that’s lovely!” She used to be — she is — a Japanese flower arranger. I don’t know if you know anything about ikebana, but it’s a structured way that you can arrange flowers. There are rules, like how there’s always a triangle in art. They always tell you to take photographs from the perspective of the triangle, and even in writing there is always a triangle. Well, the same thing exists in flower arranging. There’s heaven, earth and man, and you create this sculpture out of flowers. It’s this incredible tradition that goes back to the monasteries and monks. We lived in Japan, and she learned how to do this.

Now, I’m writing a book that will incorporate my mother’s love of flowers, and our friendship and travels together and, ultimately, Alzheimer’s. It’s not about Alzheimer’s, though, because I don’t want her legacy to be Alzheimer’s. She did all of this work and created all of this beauty, and that is her legacy.

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