A Powerful Early Onset Alzheimer’s Caregiving Story
When Eric’s mom was diagnosed with early onset Alzheimer’s, he moved back from San Diego to Miami to care for her.
Eric wanted to honor the memory of his mom by sharing his early onset Alzheimer’s caregiving story with us. And we asked for his advice to the Latino community about caregiving for families with dementia.
He was born in Miami, son of a Cuban immigrant and a Jewish mother. With storytelling heavily embedded in both the Cuban and the Jewish cultures, his attention-grabbing Uncle SCotchy podcasts will have you listening for hours.
Uncle SCotchy is Eric’s alter ego. A fun and memorable character he created as his brand. He tells us, “My character was born in the fifties, had a brother and all this stuff. And it’s just been kind of fun to not be Eric García for a minute.”
This is the early onset Alzheimer’s caregiving story of Eric García, career musician, story-teller/podcaster and creator of Uncle SCotchy.
What impact would you like your mom’s Alzheimer’s story to have in the Latino community?
Latinos will get the story more because I’m in Miami, my name is Garcia, although I’m not a very good Cuban. I don’t speak Spanish very well and so that makes me a bad Garcia. But this is Miami. Everybody’s Latin in one way or another.
I want people to not be afraid to discuss it.
And I’ve noticed a lot of Latinos that have dementia cases in their families. “You know, my abuelita. We don’t talk about her and the thing she has.” You stop seeing her around because they kind of keep her hidden, you know?
I remember it was a natural reaction when my mother got sick. It was a big secret. My father said “we don’t tell anybody about this”. He would still bring my mom out when she was still functional.
She was a tough, feminist woman and an art gallery owner. She knew what was going on. I could tell if she did or not. You know the look, when you know the look.
And she would smile and everybody smiled and be quiet when she did. And she pretended that she was ok, even though she was embarrassed and didn’t want anybody to know.
Why is it shameful for Latinos to have a family member with Alzheimer’s?
I think it is because of a basic belief in the afterlife. Because if you feel that somebody can forget their life, then what’s the meaning of a soul? Do they remember everything after they die or have they forgotten their entire life?
It’s scary to have your memories wiped out. People can say things like “until the day I die” or “remember that?”. Well, that’s not always the case and that’s one of the worst things that can be taken away from you.
As if you were struck with this disease that slowly takes everything and your memories away.
Is Alzheimer’s disease considered a punishment from God?
Yes. But it isn’t. And if Latinos really see it as such, the punishment isn’t even so much to the person with Alzheimer’s. It’s a punishment to the people around them.
She started forgetting to wipe after going to the bathroom number two. So I would have to wipe and sometimes she would not recognize me and think that I was violating her. She would freak out on me, “don’t touch me!”
Five minutes later, she’s asking me what’s wrong with me that I look so bad. I’m all messed up from that whole experience.
She gets to forget it. I got to live with it. Here I am. All these years later, I still remember it like it was yesterday.
So it affects everybody. It’s a punishment for all caregivers and it doesn’t make a lot of sense that God would punish everybody.
What would you like the world to know about Alzheimer’s?
Everybody needs to start talking about dementia and be open about it and not be scared. Listen to podcasts. There are other people that have it and support groups.
Let’s open up, talk, learn from each other and share caregiving experiences because you’re going to feel like you’re the only person in the world when it gets bad and nobody wants to help.
And Alzheimer’s is the worst. I wouldn’t wish that on anybody.
Take care of yourself in order to avoid cognitive decline and dementia. Diabetes and obesity are prevalent in the Latino community and that increases the risk.
If you’re not healthy, you’re not going to be able to take care of that person, and nobody’s going to be able to do it as good as you either. So you have to make sure that you’re on point.
You’re going to want to drink through it. But you’ve got to be on point. There’s plenty of time for that afterwards. Keep it together and just know that there’s other people. You’re not alone. That’s the main thing I want everybody to know.
What’s your advice to Latinos regarding dementia?
My advice to Latinos would be my advice to anyone, but more so to Latinos with the whole stigma thing.
Your family can be a tremendous support system when caregiving for a family member with dementia. And for Latinos, families are very much a support system, more so than for a lot of people. And more than anything, you’ll need that.
That’s something that angered me more than anything because the more advanced the Alzheimer’s stage, the more everybody disappeared. And I needed help.
My father wound up having a triple bypass. I was the only one and had to stay with her, sleep in bed with her as if I was my father.
I wanted to go visit my father at the hospital. I wanted to go outside and not worry about anything for a little while. And nobody would come and take care of her or offer support.
And more than ever, one of the strengths of being a Latino can be family helping you deal with a dementia patient. Cousins, tías, uncles, sobrinos, everybody.
There’s this thing with Latinos.
In the last few years, I found out a lot of my uncles are really technically my uncles. They are like a Cuban uncle, because they’re around a lot. So Uncle Ruben, was not my uncle, he was my father’s friend from Cuba. I called him uncle my whole life.
But that’s the whole support system that you think you have.
Every nochebuena everybody gets together. There’s more and more family everywhere. You have the abuelita there. They put the abuelita in the room by herself with the TV on and not include her.
Thinking back, maybe some of my relatives also had Alzheimer’s. An old family member they never talked about and they put in the side room. I wouldn’t know. I was only there once a year for nochebuena.
Use your Latinness as a strength. Don’t see dementia or people with Alzheimer’s as an embarrassment or a weakness.
Everybody will be better off if you use your family and your cultura to support each other. That’s my advice.
Have you taken the MindCrowd Attention and Memory test?
I did take it. I scored 42% I think. Just under average. It was a lot harder than I thought!
I want to take it again in a sharper state of mind 😊 and I advise people to participate but drink coffee first!
What motivated you to create your podcast series about Alzheimer’s?
When the pandemic started I got laid off and my dog needed a very expensive knee surgery. And after her surgery, I had no money left and nothing to do. With quarantine and her not being allowed to run for eight weeks, I sat with her and started playing virtual tip jar at home.
Then, a friend suggested putting together a blues opera. Similar to the rock-opera Tommy. Story, song, story, songs, and I have a lot of stories. While it was an interesting idea and I’ve been playing for people for over 25 years, the thought of just talking scared the hell out of me.
And that’s why I need to do it.
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And I started listening to stories on The Moth, a podcast that does live storytelling from all over the world. I started studying them and practicing them in front of my dog. She would fall asleep and I would get offended.
Finally, a friend who has a small venue – where I perform right now – was allowed by the state of Florida to host calm and controlled events at limited capacity. I pitched the idea and he gave me every Wednesday.
Uncle SCotchy storytelling time live, where all stories had to be personal and true. So I opened it up to people. It was limited to 35 capacity, masks were mandatory, everybody had their own microphone, and socially distanced.
I work hard at my stories. I write them down, analyze them to understand how they relate and intersect. So, you have the blues opera, my mother, my father, abuelita, heartache and breakups, my instruments, childhood, demon curse. And that’s how I started writing my stories.
It’s a huge undertaking but my mother’s story was a success. A sound-man friend of mine helped me get the Uncle SCotchy podcast started. A lot of it is based on my mother’s Alzheimer’s story and in generating awareness. I am working on my father’s story right now.
How was your relationship with your mom?
We had a very close bond. My dad always said, “you’re your mother’s son,” because I’m very much like her.
My mother was a bit of a rebel. She was married briefly to a Bulgarian artist that was like 20, 30 years older than her. She had moved to New York to become a professional ballet dancer but she realized that being a curvy 5” Jewish girl doesn’t fly in the most competitive ballet cities in the world. As good as she was, she never made it.
But she was very much on the spiritual side of things. And I could talk with her about things I couldn’t speak to my father about, like spirituality and religion.
When I was a child she taught me how to meditate. And I would ask, “what is God, mom? She would answer “God is love. God is love.” And she never really pushed for a particular religion.
My dad was raised Catholic and my mom was Jewish. When I was seven or eight years old, they considered I was old enough to pick the religion I wanted.
They took me to different churches, a synagogue, a Catholic church, everywhere. Finally, we went to the Unitarian Church. They were playing Stevie Wonder, everyone was dancing and finger painting. And I liked it. So I did that for a while.
Back to my mother. She was studying Raja yoga, it’s more meditation and spiritual. She really tried to lean heavily on that to try to find ways to self heal.
But the disease is going to do what the disease is going to do. It was really hard to see her process when she got sick and especially when we had to take her car away and she lost her independence.
How was she diagnosed with Early Onset Alzheimer’s Disease?
There is a big Alzheimer’s center at the Mt. Sinai Medical Center in Miami and my cousin’s husband’s parents were a major donor or one of the main founders, I believe. Their doctors are very highly rated and it takes sometimes years to see them for a diagnosis. They were able to get her to the front of the line.
They gave her a series of tests and they officially diagnosed her with early onset Alzheimer’s, when she was 59.
How did you react to the news of her Alzheimer’s diagnosis?
When she got diagnosed with Alzheimer’s, I was happily living in California. This was 2002 and I’ve been there for eight years and I never thought I would move back to Miami. But I didn’t see a choice when she got diagnosed, as it was my duty as an only child to come and help out. I didn’t know what I was getting into at all, but I knew I had to be there.
I didn’t know what to think. I started reading about it. I remember realizing that she’s forgetting things and noticing the early stages of dementia.
I was walking into something and I had no idea.
There’s a book somebody gave me called “The 36-Hour Day”, and it helped me a lot. It’s not the kind of book that you just read cover to cover. There’s different stages to Alzheimer’s disease. So you read the part in the book that references the situation that you’re dealing with, the severity of where it’s at. And you get hints.
For example, if a dementia patient says “I was in France yesterday with my friend Ernie.” You’ll respond “oh, how is Ernie?” Because it doesn’t matter, you’re not going to fix it and they get scared.
That little thing in their brain, makes them retract and the disease is going to do what it’s going to do. And that confrontation only makes it worse. That’s something I learned.
How did your mom and dad meet?
She bought a 1966 powder blue Mustang from him.
This was in the 60s in Miami.
My dad was one of the first Cubans in Miami and he was very charming. When he came to this country, he went to night school to learn English, which I respect. I have a hard time with people, especially Cubans that come here that move to Little Havana and refuse to learn the language.
He worked at a car dealership and this little Jewish girl was in there with her dad and bought a 1966 powder blue Mustang from him.
The story goes that she left her little green umbrella in his office. So she came back by herself to get the umbrella and he asked her out. But she always maintained that she left it by accident. And he always said that she left it on purpose, so she could come back without her father giving him an opportunity to ask her out.
It was a big deal for her conservative Jewish family going out with him. And I just found this out recently while reading her journal.
They would go out to dance at these new Latin clubs in Miami and as she was a ballet dancer, she learned how to dance Latin music very well. And he would whisper into her ear the translated words to the song. That was so smooth of my dad.
What’s the most painful memory you have as a dementia caregiver?
One time she brought me into her room and she was crying and she grabbed my arm and she made me promise that when she got bad, I would find a way to kill her.
That was brutal.
Other than that, the day she died, how that all went down.
My dad always made me promise that we never put her in a home, but it just got to be too much. She started attacking my father. She thought I was an intruder. She was still kind of strong. I mean, she got it early. She got it at 59 and died at 67.
So we actually found a really cool home for her, a house from a woman named Josephine from Spain whose husband died of Alzheimer’s. It was just a few little old ladies living there like roommates.
My dad would visit her every day before and after work, and I would go as much as I could.
She hadn’t recognized me for two weeks. And I got a call that she had collapsed. Later on, Josephine told me that she was in the bathroom looking at herself in the mirror, and she asked, “Where’s Eric?” That’s the last thing she said. And then she collapsed.
Because the brain gives the wrong signals to organs, bile started coming out of her mouth. And I remember the smell when they rushed her to the hospital. It was the worst smell ever… We were right outside the operating room. It was a death and bile smell. My father was crushed and I was so mad because we didn’t let her go there.
While still working on her, they asked if they could let her go. And my father said no, save her. Dad. Really. And they did save her, but she was placed on life support. She was unconscious. They could have let her pass.
So while at the hospital, we had to decide to pull the plug. I went up to the ICU, the critical care, and there’s a breathing pattern called Cheyne-Stokes breathing that happens where the dying person’s breathing deepens and speeds up, then gets shallower and shallower until it stops.
It takes a while before they go and so she’s out, breathing, breathing, breathing, stop. It’s almost like contractions that happen closer and closer together. And the times where she stops breathing become longer and longer.
My dad was a mess and had to be taken away. And I sat there alone in the dark room with her basically while that kept happening. And it took hours until she passed.
We had prearranged for her to be cremated and the service that was supposed to pick her up was about an hour away. It’s 2:00 in the morning on a Tuesday. And the hospital wanted to take the room because they needed it.
The nurses said they would put her in the cooler. I said no. I sat there with her and they sent in security guards. And they saw my face and left. They realized it was not going to be worth it.
And I just sat there with her all night long until the crematorium service came and took her. And to be honest, I was super relieved that she was dead.
I felt bad I didn’t fulfill my promise to kill her. Because I saw how my father would visit her every day and night, just waiting for a moment when she would recognize him. And it was a promise I had a break.
But I knew she didn’t want to live like that. I knew she didn’t want me wiping her, and she didn’t want to be a burden. So, her death was a big relief. I didn’t even cry. I was out of tears by then.
Would you like to share some happy memories?
There were some funny things. People living with Alzheimer’s and dementia go through sexual phases.
We were in line at the deli and there’s a big guy behind us and she grabbed his penis and went “Whoo!”. So, I started apologizing to the guy and taking her away. She replied, “What? What? He was cute.”
You never think you’re going to have to tell your mother not to grab somebody by the penis. And she said “Eric, you need to lighten up and sometimes you just got to go like this” She made a gesture of going with the flow. And she kept doing this little hand dance in the car and I did it with her.
Sometimes she’d be getting dark and I would start doing the hand dance for her. And she would do it too and lighten up.
All of a sudden she had a dirty mouth and she started cussing us out and we just started laughing. You have to laugh at those moments. You can’t be all that sadness. You have to let the funny things happen.
Even if they’re dark and weird.
She had this phase she went through for a while where we were always late. We had to be somewhere, but she never knew where. It was super annoying.
“We’ve got to go. We’ve got to go. What are you waiting for?”
My dad was doing dishes and I asked her “where do we need to go?” She replied, “We are hours late. I wanted to leave here,” and then she puts her finger on my dad’s forehead “but fucko over here can’t get his shit together. We’re never going to get out the door.”
We all started laughing. She started laughing. I never even heard you say, “fucko”. Now my dad’s “fucko”? What’s going on here with you?
But we weren’t helping her out. We weren’t leaving. We were listening to her. And there was nowhere she had to go.
My dad was extremely caring and loving. The whole thing really broke him. I can’t believe he survived 10 years after she passed.
You are a musician, did your music help her?
Yes, and the best song I’ve ever written, actually, is about her. It’s called Sande’s Song. I wrote it while I was taking care of her. She liked it a lot and she liked music. I’d play it for her.
And that is the one thing I also advise. Use music as much as you can with dementia patients. That’s that’s the one thing that no matter how bad they are, can still touch them.
Sometimes they won’t respond. But, if anything is going to do it, it’s music. And whatever they like just put it on at all times and play.
Yes, my music helped her and it helped me playing and writing that song.
I used to not be able to sing Sande’s song without crying. And then I felt bad that I didn’t feel like crying when I told the song. Was I desensitized or was it this Jewish guilt that I had and I feel bad that I don’t feel bad? It’s such a Jewish thing.
The first verse is “Please Mama, please mama. Don’t go away. Even if you don’t know who I am it don’t mean that I won’t stay”.
Thank you Eric “Uncle SCotchy” for sharing your story about your mom’s early onset dementia with us.
We leave our readers with a link to Sande’s song on Spotify and another one to your Uncle SCotchy podcast. And if others want to honor their loved ones just like you did on the MindCrowd blog, all they have to do is reach out to us.
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