Alicia Oliveira’s memoir, "Las Perlas de Alicia," explores the painful things endured, the lessons learned and the joy found in between that helped shape her life as a mother, a daughter, and a Venezuelan American.
She writes about her experiences caring for her mother, who is living with dementia, and raising a son with autism.
"Las Perlas de Alicia" in English means "Alicia’s Pearl." Oliveira writes that a pearl begins as something that hurts but then forms something precious at the end.
Her self-published memoir's release date is Oct. 25.
On Wednesday, she talked about the book and her caregiver experiences on WUSF's "Florida Matters Live & Local," with host Matthew Peddie.
The following interview transcript was edited for clarity and brevity.
How did the pearl synonym become a way to understand the life experiences that you’ve had?
When something is very traumatic or bad happens in your life and you have to survive it, it's up to you to decide if you obtain a pearl out of it. I'm not romanticizing trials or something bad that happens in our lives, but also a shift in attitude will help you get something positive out of that experience.
Can you share an excerpt from your book?
This chapter talks about how I found my voice.
“So I started speaking, not because I wasn't scared. I was terrified. I spoke while afraid. I advocated while afraid. I made decisions while afraid. I kept going while afraid. And maybe that's what courage actually is. Or like Mom used to say, 'Don't let fear paralyze you.' And after everything life has taught me, I would add, don't let fear make your decisions for you. I was still afraid, but for the first time, I began to understand that fear didn't have to silence me. It could sit beside me without holding the steering wheel.”
You write about losing pieces of your mother as dementia changes her. How did you make sense of that grief, of mourning when somebody is still physically there but their personality is not?
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It's a very ambiguous process, and you don't make sense of it. You just flow. If you're rigid, you cannot survive this journey. So every time I notice a new piece is taken from her and from us, I just go with the flow and go to the next experience with her. I cling onto the stuff I can still have with her, like laughter and kisses and hugs, and that's how we cope. To be honest, it's really fascinating, in a bad way, to experience because you're losing the pieces of this puzzle called your loved one.
How does music help people living with dementia connect and make sense of themselves as they go through this journey?
My mom loves music, and she's always dancing to salsa because she's a good Latina. We connect our kids or my husband, all of us when we go visit her, we connect through music and dancing.
You write about moments when you initially saw your mother’s behavior and realized something must have happened to her brain. How did you make that connection?
It's been many years that I've noticed a lot of the early symptoms, especially the behavioral part, like apathy and recklessness. The moment when I knew something was completely off was when one time she fell for a scam online and she lost over $10,000.
Have you always had the idea of dementia as a possibility for your mother to have, or was it never on your radar?
I had no idea what dementia was. I know that in pop culture, we use demented as a term, and people really don't know what that means. We use it to describe insanity or craziness, but dementia is an umbrella term. And I had no idea what Alzheimer's or dementia or frontal temporal dementia was.
You write that during parts of your childhood you felt alone, which made you learn how to speak up. At what age did you realize that finding your voice was part of your healing process?
Recently. I'm 40 years old, and it's just been a process of understanding that it is OK to speak up, and it is actually needed to speak up in a healthy way. When you don't have coping mechanisms, and you've been neglected in your childhood and gone through so many variants, it's hard to express what you really need to express in a healthy way.
You write about always feeling needed by your three kids as their parent. How did you learn your limits and learn what you needed among everything going on in your life?
Limits are important, and when you grow up alone with no guidance, you don't know what limits are. And I had to learn how to establish healthy boundaries so that I could have room to breathe and also continue to be functional for all the people that needed me.
I talk about experiences in the book where I had to put limits on Mom because it was driving our whole family dynamic. It was derailing because I had no idea what was going on, but I knew something was. So that was making me crazy, and I couldn't contain her or keep her safe. So I had to create limits. For example, one limit is that she can't show up unannounced because when she would come to my house, even if the babies were napping, she would take them out the crib, shake them and scream. So, all of these changes in behavior were really causing a ruckus in my house, and I had to put limits, although I didn't want to.
There's a line in your book about the idea that caring for someone doesn’t mean you have to disappear yourself. What does that look like in practice?
A lot of people say “you have to take care of yourself,” or “think of yourself first.” But it's hard when you have to go after a parent that's trying to escape from the safe place, and at the same time, you have a toddler that's in the bathroom needing your help, you have a phone call from work, and then you have the stove going at the same time. So I describe that because there is really sometimes no space for the caregiver, but when it comes to not disappearing, is choosing those little moments, those little breaths, those little opportunities to maybe go to the supermarket by yourself, or stuff like that.
You write about having a son with autism. How did that shape you as a mom? And how did you balance him with the other part of your role as a caregiver?
My son, Elijah, started my caregiving journey, and he has come a long way. In the beginning, he lost his speech at 2 years old. He had very challenging behaviors, eloping, aggressiveness, and we had to work through that all throughout his childhood. But now he is very functional and is an electrician, as well as a caregiver for my mom as well.
That shaped me in the way that it gave me a purpose in my life because up until I had Elijah and his diagnoses, I was just an arrow that was shot in the air since I had no purpose. So, I found a purpose through having to care for him, understand him and change the blueprint of the mother that I wanted to be for him.
What would you say to someone who is also experiencing frustrations while taking care of a parent with Alzheimer's or dementia and may feel guilty about it?
I say that I see you and that the feeling is valid. You're human and that you're showing up. You're doing what your heart tells you to do and what your moral compass is telling you to do. So you can feel all those feelings, and at the end of the day, you're still caring for your parents.
This story was compiled from interviews by Matthew Peddtie for "Florida Matters Live and Local."
