Living with Early Onset Alzheimer’s: Bobbie Joe Cavazos

We want to thank Bobbie Joe Cavazos for so valiantly volunteering to share her story and experiences with her early onset Alzheimer’s diagnosis.

Bobbie Joe Cavazos Advocates by Speaking Up from a Patient Perspective

It’s very important to me to share, especially because we don’t have a lot of time. Early onset is a lot of times faster progressing than some of the other types of Alzheimer’s dementia. And I know that.

So I want to speak out as much as I can while I still can, because I know that my disease is progressing.

I was diagnosed in 2018 and I’ve had some traumatic things happen. I’ve been losing more words and sundowning more as the disease progresses. And having a harder time. So it’s become even more important for me to advocate as much as I can.

That’s why I very much appreciate being able to do this today, because I want to help as many people as I can, including my future family. Because I know I could have possibly passed this on to some of my children. And that kills me, just as a mom. I love my kids and I hate to know that I may have done this to my children.

I want to find a cure. This is why I came back, so I can take care of this before I leave this earth again.

If I can come back after 18 minutes, I’m a damn fighter and I survived. I’m one tough cookie. I used to pitch an 80 mile an hour softball. You’re not getting rid of me that easy.

My Brain Works Differently than Before: People Still See the Old Me

Quite often, I experience agitation, frustration, dizziness, angry outbursts, which would be kind of a human, normal response to having something like this. But it’s magnified and uncontrollable at times.

Not being able to get my words out, losing words. I can’t physically write any more because I’ll try to and realize I am not able to spell basic words. It’s like my memory is not there.

If I’m watching a TV show, a commercial will come on and I’ve forgotten what I just watched. It’s that quick. I cannot absorb anything.

My husband will tell me things and a day later he’ll tell me again. And when I reply, “You didn’t tell me that”, he goes, “I did” – and I know it irritates him. And I try to explain to him I won’t remember as I am not the same person that I used to be. And that’s frustrating to me. I get irritated. I am not in denial.

It reminds me of what I cannot do.

Bobbie Joe’s Advice: Play along and don’t mind repeating it makes a person with memory problems feel better.

Prevention and Living my Best Life are my Key Concerns

Living our best lives, right now. Being respected. Being heard. Like what you’re doing right now, asking me questions and sincerely listening. Sharing our wishes with the scientists.

I definitely think that prevention is what we would most like because we don’t want these diseases to keep being passed on. And we are not all the same, we don’t all age the same. It needs to be approached on a personal level. You can’t treat us all the same.

And I think that’s how you find the cure. If you can prevent it from being passed on, that IS the cure.

I know this is what MindCrowd is all about. Finding a personalized approach to brain aging for prevention of these diseases.

Let’s hope more people participate in MindCrowd because taking the test online is not going to diagnose them. And it doesn’t matter if don’t perform so well because when you get to the end, you realize that, more than likely, everybody else scored pretty much like you did.

Except for me as I’ll tell you right now what I got. I got a big fat zero and it’s okay. My husband took it and he’s normal and it’s just a game. It’s fun.

You actually have the disease and you had the guts to take it?

Yes. Scientists need to find a way to prevent this. There are things that are outside of our control, like how we grow up, the type of stressors we had.

Bobbie Joe, a quote that represents you.

The only quote I always say is, “I’m still here and I still matter.”

It’s hard on the family to think that you’re losing someone for so long. But there should be also a concentration on the person who’s going through it.

You can thrive with any form of Alzheimer’s or dementia in the early stages.

It’s not a death sentence. It’s a choice that you make every day. To get up. And live. I’m living.

And I advocate all the time for everyone with my disease because I get tired of people’s ignorance.

I’m here. I still matter.

Most People Believe Everyone with Alzheimer’s in the Late Stages.

Yes, they believe that we just go from being ok to the late stages. And it’s not true.

We can still function. We may have a glitch every now and then and after two or 3:00 in the afternoon we’re not so good sometimes. And It’s okay. But we’re still here.

And we need to learn to be okay with that. We’re not the same people. And we need to learn to be okay with that, too. It’s hard. It’s okay to be mad because we’re going to go through phases.

It’s a roller coaster. Some days we’re going to be mad that we have this disease. Some days we’re going to be crying because we have it. Some days we’re going to be so happy. Some days not so much. But isn’t that life, anyway?

I’m trying not to concentrate on losing my cognitive abilities because I know that that time is going to come and I don’t want to think about it.

I’m trying to live my best life right now. I’m trying to give my family the best time that I have because God brought me back for a reason. And I don’t want to mourn.

You talk about care partners vs caregivers. What is the difference?

Let me tell you what the difference between a care partner and a caregiver is.

A caregiver is caring for somebody who’s dying. A care partner is caring for somebody who’s living.

I’m living. My husband is living with me. He’s caring with me. He becomes my care giver when I can no longer partner with him. I am blessed to have a great man by my side.

It’s a beautiful and empowering distinction. And I think that it’s so important that people realize that it’s not all or nothing.

Alzheimer’s dementia is difficult because our symptoms are different. Because human beings are different. In our dementia group, we’re not all the same. And there’s a spectrum inside these diagnoses.

So, we may have other symptoms that may or may not be related to the particular dementia. Of course, we don’t know if it is or isn’t, but we would like to know more so we can understand more about what’s happening to us and better manage the disease.

Most of us who are living with this aren’t concerned about the cure. If you were to listen in on our DAA groups, none of us will tell you that we care about the medications. Because we don’t believe any of the medications work for everyone more than for a short time.

What is the DAA?

The Dementia Action Alliance group. We talk about all kinds of different issues every Tuesday and Thursday. It’s all over America. They’ve been around for 25 years DAAnow.org.

And we’re just a group where everybody has some form of dementia. From Alzheimer’s to Parkinson’s to Lewy Body to Mild Cognitive Impairment or MCI. We are literally like a family, we have group discussions on different topics, meet and greets where we can check on each other, How are you doing today? Are you having a good day? Bad day? What’s going on in your week? Did you get a new neurologist? Have you had any new tests? It’s where we can go vent.

Living with Early Onset Alzheimer’s: Who is Bobbie Joe Cavazos

I’m from Merced, California. I grew up in Le Grand, California, a very small farming community. My mom and my dad grew up farming almonds and walnuts and we raised cattle.

I was an athlete. I played softball all through high school. I have been married to my husband for 25 years in April and we have seven children.

I had my first stroke when I was 32. I’ve had a lot of medical issues over the years and a lot of them run in my family. High blood pressure, cholesterol, thyroid problems, seizure disorder, concussions from playing softball when I was younger, and I was diagnosed with spinal stenosis and ankylosing spondylitis. My back is fusing together.

So they kept me on very heavy medications. It was so painful that I ended up in a wheelchair most of the time for 12 years.

My grandmother always said, don’t go out of the house without your face on. So when I woke up on October 13th, I told my husband to get me in the shower so I could spruce up on and put my perfume on and to call 911 as I was dying.

I remember getting into the ambulance. I remember looking up at the paramedic. And then God does a wonderful thing, I checked out.

So we get to the ER entrance of Mercy Hospital in Merced and the paramedic jumps on me and starts CPR. They paddled me eight times and then put me into a medically induced coma. My magnesium and potassium levels were nonexistent, I weighed 108 lbs, and this caused my cardiac arrest and traumatic brain injury.

I was dead for 18 minutes.

And I was diagnosed with early onset a year after my first stroke happened.

Who noticed the symptoms?

A year before, my husband used to work in Yosemite National Park. He was a plumber. And he used to stay there on his work week and come home on the weekends.

I’ve always taken care of our finances. That was my job. And I used to give private pitching lessons at our home for free.

People charge an arm and a leg to girls to get lessons. And I always thought it absurd and unfair. There are a lot of girls out there that can’t afford that, and I got mine for free. I want to give back in any way I can.

As I was giving lessons, I started noticing that I was forgetting how to do certain things. So, I stopped giving lessons on my own because I started to get embarrassed that I couldn’t remember things.

I was more aware of this because of my family history.

And my children started noticing that I was doing weird things around the house, like putting stuff where it didn’t belong.

But the biggest thing was when my husband came home one weekend and he asked, “Babe, why do we have all this money in the bank?”

“What are you talking about?”

I went online and I looked at the bank account and I realized I didn’t pay the bills all month. So I made the appointment with my primary physician. She gave me the referral and it took over a month to get to see the neurologist.

And I did the cognitive tests, the cap test and the blood test. The neurologist really did the whole nine yards.

That was it. And then she prescribed me Aricept and Namenda. I went home that day and cried myself to sleep. And the whole time I was thinking. “I have seven children who I have to explain this to. How am I supposed to do that?”

My husband was crying because his mother has Alzheimer’s. So now both his mother and his wife have Alzheimer’s. There is no cure for this disease. Not yet.

It’s a lot. I had to sit down with my children and tell them that this disease is hard because I could be having a good day, but then, just like that, it can go downhill.

And I knew that I would have good days when they would think I was feeling better and get hopeful. But the reality is that the disease goes, good day, good day, bad day, good day. It’s a roller coaster.

Witnessing Alzheimer’s

Bobbie Joe Witnessed the Treatment of People with Alzheimer’s at A Young Age

My dad’s grandmother, my great grandmother, had Alzheimer’s. She was diagnosed in 1987 or 1988.

She was very wealthy. A multimillionaire. They owned over half of the town that I lived in and farmed almonds and walnuts. My great grandfather used to own cattle and a big ranch in the town that I live in now, Mariposa, California.

Because they could afford it, they hired people to come in and care for her.

They had two daughters, my dad’s mother and my aunt Bonnie. My dad’s mother was an evil and narcissistic woman who could not care less about her own mother. Therefore, when she hired these people, she didn’t care who they were.

I witnessed people putting my great grandmother in a straitjacket and beating her. And she went from talking gibberish to not speaking at all.

It was awful. My dad stepped in and fired them. But even as a kid, I got to see the bad and how people took care of people who had Alzheimer’s.

They finally hired a lady that was gentle with her. She was bedridden by then and they had to turn her over all the time to avoid bedsores.

Thanks to this experience, at a very young age I found my calling in life. I was going to take care of the elderly. And I did. I went to school for nursing.

A Family History of Alzheimer’s

My Pa’s mother was diagnosed with Alzheimer’s. And I took care of her in a loving environment for three years.

I learned what to do and what not to do, if medications worked and if they didn’t work.

My great grandmother would get up in the middle of the night. Her husband, my great grandfather, had been dead for 20 years. But she would get up and think she needed to call him to let him know dinner would be ready at 5:00. She would get up and try to use the phone. And I would sleep in the next room and hear her get up.

So I learned tactics to divert her attention to get her back to bed. I would come up with something and learned to lie.

And that’s something that you don’t hear from neurologists or learn in nursing school. But it’s something care partners need to learn, that it’s okay to play along. It doesn’t hurt them. It is actually good for them because you want to give them a sense of relief and peace. Because if you tell them the truth, you can make them angry and it can make things worse.

I did that a lot. My grandmother, my great grandma had a front porch, and across the street was a pink house. We would sit there and she would start laughing and I’d say, “Girl, what you laughing at?”

She replied, “Do you see the naked man?”

And I would say, “Oh my God, he’s standing over there, again?”

And she would get the biggest laugh out of this naked man that she saw over there.

He wasn’t there but to her, there was a naked man standing across the street.

And I’d start laughing with her. Naked man. And she enjoyed it. We would have a great time just sitting on that porch looking at the naked man.

I had a good time learning from her.

Bobbie Joe’s Personal Story

My mom’s family was from Southern California. Riverside, California. My Pa’s family was Scottish and my grandmother’s family was Native American.

I grew up in a tense relationship with my parents. They were not nice people. My dad’s family – not my biological dad – came from money, so abuse was hidden from public view. I got to experience both worlds, the good and the bad, and I’m grateful that I did cause it gave me a chance to learn from both. I was an observer in life.

I had a set of grandparents that kept me safe. My “Pa” and my grandmother, my mom’s mom and dad, were my saviors. If it weren’t for them, I wouldn’t be the person I am today. I’m very grateful for the both of them.

My Pa was a commander for the CHP (California Highway Patrol) here in California. And the peacekeeper of the family, as well as my protector. My Pa had cancer – this devastated me – but even though I had to move out of my house in Merced at 17, he still made it to every game I played. He would drive from Le Grand to Sacramento, chemo and all.

By walking away from my high school to go to Sacramento, I was leaving all those opportunities I had already earned.

He promised me he wouldn’t die until he saw me graduate from high school. I graduated on June 4th. He died on June 29th.

So, even though I grew up in a small town, I learned a lot.

Do not Question the Validity of my Diagnosis

Reverse ageism can be a huge issue for a lot of us. I’ll illustrate my point with what happened to me during COVID. I was scheduled for a endoscopy and colonoscopy at one of our local hospitals. And as we know, my husband is my full time care partner.

I walk in and tell the lady who takes the temperature that my care partner has to accompany me because I have Alzheimer’s.

She literally looked me up and down and said, “You have Alzheimer’s?” And I said, “yes, ma’am, I do”. And she demands to see proof.

The Alzheimer’s Association has a neat little advocacy form that says do not question the validity of my diagnosis. So, before I handed her my diagnosis paper, I handed her that form, and then, I handed her my diagnosis paper.

No apology or anything of sorts. She just handed back my diagnosis paper and the form. It was evident that she associated the disease with being really old.

Usually, messaging about different dementias comes from the caregivers. But it can’t always come from the caregiver point of view. It needs to come from the people living with the disease as well. The messaging also needs to be more inclusive of mild cognitive impairment, early onset Alzheimer’s, Parkinson’s and so many different forms of dementia.

This is why I want more education in doctor’s offices, hospitals, police officers, first responders need to understand we may be dying but thriving with Alzheimer’s or any other form of dementia. We need to be treated with dignity and respect.