In this episode, Steve O'Leary and Virginia Naeve interview Chelsea Cox, Associate Director of Education at UCI MIND, whose father was diagnosed with early-onset Alzheimer's disease when she was in high school. Chelsea shares an honest account of her family's journey through diagnosis, assisted living placement, end-of-life, and coping with loss. What would like to hear about next? Email us at [email protected]
Steve O'Leary 0:06
From the University of California, Irvine, this is UCI MIND’s Spotlight on Care, the podcast where we share stories, experiences, tips, and advice on caring for loved ones affected by Alzheimer's and other dementias.
Virginia Naeve 0:23
Hello, and welcome to Spotlight on Care. I'm Virginia Naeve, and I'm here with my co-host, Steve O'Leary. Today's topic on caregiving is early-onset Alzheimer's disease. early-onset or younger-onset, as it's sometimes called, is getting a diagnosis of Alzheimer's before the age of 65. Since my mom was 75 when she was diagnosed, I don't have a personal story about this topic. But before I introduce our special guest, Steve, why don't you tell us what you've learned about early-onset while leading your Alzheimer's support group?
Steve O'Leary 1:04
Thanks, Virginia. Yeah, I lead a men's group of well varying between 8 to 10 people for the last five years. And we've had two or three, actually three or four guys in our group who've, in their early 50’s had their wives come be diagnosed with Alzheimer's. And I think the thing that's…actually my wife, Patty was diagnosed at 60 so she might qualify. But I think it's, what's important about the one I wanted to talk about is where everybody is in their life stage. The gentleman that I'm referring to were, had children at home still. And I think that that presents a very, very unique set of circumstances, certainly did for them. Because not only were they dealing with their spouse and helping them adjust to the disease, they were dealing with their own children. And I remember vividly a couple of stories. One of the guys in our group spoke about how his children after finally deciding to move his wife into a community, how they broke down in tears and thanked him for finally making a decision because they felt so much pressure to be the caregiver when he wasn't around. And he didn't realize how much pressure he was putting on them as a part of the process. So I think that the interesting thing here, and I've heard that now reiterated again, that there's lots of caregivers in an early-onset scenario, it's not just the spouse, it's also the children. And are they really prepared to be care caregivers, you know, in their teenage years, so to speak, or maybe even younger? So I think that's the one thing that makes this a very unusual and maybe even more challenging form of Alzheimer's.
Virginia Naeve 3:15
Oh, yeah. Well, I wasn't prepared to take care of my mom and I was 50. So I can imagine what it's like to have young kids in the house having to face this issue. Well, it's good to get the message out there that there's such thing as early-onset Alzheimer's. I think most people still continue to think of Alzheimer's as an old person's disease. And they're unaware that Alzheimer's can happen to people a lot younger than 65. Now, I would like to introduce our very special guest today. Her name is Chelsea Cox. Chelsea has served the last five years as the Associate Director of Education at UCI MIND, which is one of only 32 Alzheimer's Disease Research Centers in the country, funded by the National Institutes of Health. Today, you will hear that there's a reason Chelsea has devoted her life to working in the field of Alzheimer's research, and education. Welcome, Chelsea. It's an honor to have you as our guest today.
Chelsea Cox 4:22
Thank you so much, Virginia and Steve for inviting me. I'm very excited to talk with you about this important topic.
Virginia Naeve 4:30
Well, before we begin to talk about your story, and before I ask you a bunch of questions, the term early-onset can be confusing for some of us. Will you please explain to our listeners the different types of early-onset Alzheimer's?
Chelsea Cox 4:48
Sure, I think that's a really important and great place to start. So the Alzheimer's disease that's most common and that most of us are familiar with is known as sporadic Alzheimer's disease. And that typically occurs later in life after the age of 65. But in some cases, sporadic Alzheimer's disease can occur before the age of 65. And this is often referred to as you mentioned earlier, early-onset or younger-onset Alzheimer's disease. Sporadic Alzheimer's disease may involve genetic or, or non-genetic risk factors. So what I mean by that is that having a parent with it doesn't mean you're destined to get, it might increase your risk. And you can get sporadic Alzheimer's disease even if nobody in your family has ever had it, due to perhaps lifestyle factors. Um, so sporadic Alzheimer's disease accounts for about 99% of all Alzheimer’s cases.
Then there is a rare, purely genetic form of Alzheimer's disease, where a mutation can be passed down from generation to generation. This is known as early-onset familial, or autosomal dominant Alzheimer's disease. And people with this disease form are typically diagnosed in their 30’s 40’s and 50’s. And that accounts for less than 1% of all Alzheimer's cases. So like I said, it's very rare.
And then to further complicate things, we also often hear the term, early stage. Yes. And yeah, so this is this is a term that's just used to refer to someone of any age or any disease type, who was recently diagnosed and is experiencing the beginning stage or the early symptoms of Alzheimer's disease.
Virginia Naeve 6:44
Yes, I've had people say to me, oh, my mother has early onset Alzheimer's. And I'd say, Well, how old is she? Well, she's 72. That is not early on to it. Okay, Chelsea, tell us why the subject of Alzheimer's education and research is so important to you?
Chelsea Cox 7:03
Well, it's so important to me, because this disease runs in my family. And now I'm thinking here at 34 years old, I'm next. Unless, unless researchers find a way to stop it, and society starts talking about it more. So I've made it my life's purpose to raise awareness and education of Alzheimer's, and to research ways to improve how we communicate about it. Because I believe that the more we talk about it, like what you and Steve and UCI MIND are accomplishing through this podcast, the more equipped we become as a society to address it. So thank you for what you're doing.
Virginia Naeve 7:43
Well, you're very welcome. And thank you for being here today. You have so much information to get out there. It's lovely to have you here. So you were in high school when your father was diagnosed? Tell us about that.
Chelsea Cox 7:57
I was. Yeah, so my dad was diagnosed with early onset Alzheimer's disease when he was 52 years old. I was a junior in high school at the time, my brother was in seventh grade, at the time, so even younger. And it was something we hadn't really heard much about, that you know, no other family we knew of our age had had been exposed to Alzheimer's disease. We knew a little bit about it because my dad's mom, so my paternal grandmother had Alzheimer's disease. But she had it, yeah, she had it quite a bit later in life. So you know, in her 70s, and is when she passed away when I was just a baby. So it does run in my family with my grandmother having had it and then my dad who had it younger.
Virginia Naeve 8:53
What was he doing? Why did you all start to get really suspicious that something wasn't right?
Chelsea Cox 8:59
Well, honestly, he was actually the first one who recognized some changes. And he was always very hyper-aware of it because his mom had passed have Alzheimer's disease. He always made an effort throughout his life to eat really healthy and exercise. He ran two miles a day. And he was always very attentive to the way his brain was functioning. And so when something when he started having difficulty, I think it began with calculating numbers. A big part of his job was calculating numbers. And he could no longer grasp numbers as quickly as he once did. And so he became concerned for himself, and actually came to my mom and said, You know, I think something starting to happen, and my mom was like, I think you're overreacting. Don't worry. You're only 52 years old. Let's not worry about it yet.
Virginia Naeve 9:57
You're stressed out about something.
Chelsea Cox 9:59
Right. Exactly. But he was the one who was first to acknowledge that some changes and want to seek help.
Virginia Naeve 10:06
So at what point did your mom say, oh, okay, we need to go to see a doctor about what's going on here. And it must not have been easy to find a physician who even knew anything about someone having Alzheimer's at 52.
Chelsea Cox 10:22
Yeah, um, you know, I think my mom, she wanted to, she trusted what my dad was telling her. And so she was very open and receptive to wanting to help him find help. And they, they though, kept my brother and I very much out of the diagnostic process at that stage until they really knew what was going on. So I don't have a whole lot of knowledge about how long it took, or how difficult it was to get a diagnosis. I know, it wasn't easy, and he saw several doctors. And it did take a little while to get an accurate diagnosis because he was so young and healthy otherwise. But yeah, it was something that they kind of worked with, and dealt with together my parents, as partners. And then ultimately, when he did receive the diagnosis is when they sat my brother and me down in the living room, I remember it. You know, as a junior, like I said, in high school, and they said, your dad has something called Alzheimer's disease. You know, his mom had it. And they tried to explain it a little bit to us, because we really didn't know anything about it.
Virginia Naeve 11:40
So how did you inform other family members and relatives and friends that he had had this diagnosis?
Chelsea Cox 11:50
We were all pretty open about it. My parents from the beginning, they wanted to be very transparent with family and friends. And they wanted to keep people involved. And, you know, let them know that he's going through this, it doesn't change who he is, we hope you'll still be, you know, be involved in our lives as our friends. And so they, you know, not everybody approaches it that way. A lot of people you know, want to keep it more quiet and hush hush, especially when you know something when it happens to someone that young. But that was the approach that they took, and I very much respect it. I think I told my friends about it at the time and same thing where they just kind of didn't really understand what it meant. So, yeah.
Virginia Naeve 12:50
I know that my mom didn't really grasp the fact that she had Alzheimer's. She knew there was something wrong. Sounds like your dad knew a little bit more than that. My mom just knew there was something wrong, but I don't think she could define it.
Chelsea Cox 13:04
Yeah, I like I think he was able to define it because of what he had witnessed with his mom.
Virginia Naeve 13:10
Yeah, exactly. So your dad was still working? And then how long was he able to keep working? And how long did how did he handle leaving work?
Chelsea Cox 13:23
Yeah, it's, it's interesting, because he was still working. And he actually got laid off right before he got the diagnosis. And so looking back on it, you know, we kind of wonder, like, was he laid off? Or like was he fired because he wasn't performing the way that he once was. And so then because of that, it was very, very challenging and actually impossible for him to find other work. And so that became very straining financially on my family. And, you know, my mom had to take over. She was a stay at home mom, and so she had to take over kind of the finances and my parents eventually had to move out of the home that they raised us in and, and move on and adjust their lives significantly because of this diagnosis and how it affected his career.
Virginia Naeve 14:25
Yeah, they sure did. How about the subject of driving?
Chelsea Cox 14:29
So that you know can look different for every family. And for my family what happened was my dad was due to retake his driver's license exam. And I mentioned earlier that one of the first things we noticed or that he noticed was his challenges in calculating numbers. He also lost the ability pretty early on to like read, read letters and string together sentences and communication became difficult. And so when he went in to renew his driver's license, he actually failed the driver's license exam based on the inability to read the letters.
Virginia Naeve 15:10
That must have been somewhat of a relief.
Chelsea Cox 15:13
I think it was for my mom, obviously very depressing for him. He was very much aware of what was going on with him. And so that was like kind of a huge hit to his independence and dignity was the loss of his driver's license, and independence in that sense. And having to rely on other people to get him from point A to point B was very depressing for him.
Virginia Naeve 15:41
It hits everybody like that. And you just do the best you can because you know that they aren't safe driving. Yep, at one point. So your brother was still at home. But you were now going off to college? Did you have that feeling of? Oh, should I be home? Should I be there every weekend? Did you have that feeling of guilt that you weren't around on a daily basis?
Chelsea Cox 16:05
Definitely. I mean, I remember having that conversation with my parents. Like, Dad, Mom, dad just received this diagnosis. Should I really be going across the country to, I went to University of Michigan for undergrad, should I really be going there all the way over there when you have all of this happening at home? And bless my parents, they were so you know, so supportive. And they're like, no, this is your time you need to do what it is that you want to do, and we support you. We’ll be fine. Don't worry about it. But of course, I get there and I do feel, you know, a sense of, of guilt and selfishness and sadness at the same time because nobody who I'm interacting with a college can quite understand the situation I'm going through with my dad dying of Alzheimer's disease back at home.
Virginia Naeve 17:02
Oh, yeah, no way.
Chelsea Cox 17:04
So I didn't really have a lot of ways to cope at the time in college.
Virginia Naeve 17:10
Yeah. Well, recently, my podcast guest, Lisa Up de Graff, was telling us that she really doesn't want to place her mom in assisted living unless it's really necessary because she was afraid that her mom's behavior wouldn't be tolerated. And I think the way she put it was, she would be booted. We were kind of laughing, but that can be an issue. And I know, it's not an easy story for you. But tell us at what point in time did your dad become too difficult to handle at home for your mom and your brother? And the decision was made to place him in assisted living? How did that go?
Chelsea Cox 17:53
So it was a long journey. You know, he lived with the disease for eight years. He passed away in 2012. And, and he kind of it seemed like he slowly progressed over time. There were small changes we could see over time, but he was still you know, able to do many things and do many things independently, and live at home for quite some time. And it wasn't till several years after I graduated college, and started my master's program, that things kind of started to take a turn for the worse, and he became incontinent. He became very restless and you know, would pace back and forth. He became very apathetic, there was nothing that he wanted to do or nothing that interested him anymore, he would no longer go on walks, or really enjoy anything, and just quite seemed quite depressed and agitated all the time. And it just got to a point where my mom as his primary caretaker, I was living in LA at the time, where she could just no longer handle him one on one in the home anymore, especially with the incontinence and getting up in the middle of the night pacing back and forth and challenges with dressing and grooming. I remember there was one weekend when I came down from LA and took over for a weekend so that she could have a bit of respite and time for herself, and I think that was one of the turning points in our decision. I was like mom, you cannot do this anymore. Like we need to figure out how you can get some additional help. Like I was there for two nights. You do this every night. How do you do this?
Virginia Naeve 19:47
Did he wander? Did he want to leave the house and wander?
Chelsea Cox 19:51
Um, he we didn't have a lot of issues with him wandering far from the house. I honestly think that he was afraid to be away from home and to be away from the people with whom he was most comfortable. But also that put a lot of strain on my mom, because it was like she always needed to be present and doing everything for him. And that became so burdensome on her as a caregiver, and she was no longer being able to take care of herself, which is detrimental on her health.
Virginia Naeve 20:20
You can’t even go get your hair done.
Chelsea Cox 20:22
No, absolutely not. And she was just totally burnt out. So we had the conversation about, you know, moving him to an assisted living facility at that point.
Virginia Naeve 20:36
So how did that go? Did they have a conversation with you about how it was getting with him? Or did you just observe it? or How did that go?
Chelsea Cox 20:47
Well, the move to the assisted living facility didn't go well. I think that my dad was angry, he was still somewhat aware. And he became angry, I think, that my family had decided to move him to the assisted living facility. He became very disoriented, being moved out of the home that he was comfortable in and into this new space with new people who were quite a bit older than him was a total change to his environment and surroundings and the things that he was comfortable with. So he started to act out, he started having hallucinations, delusions, and it got to the point where the facility determined that my dad was actually a danger to other patients and to himself, because, you know, he would run down or pace down the halls and not really know what he was doing, but would you know, accidentally knock over another patient. And so it got to the point where the assisted living facility was no longer able to manage care for my dad.
And so at this point, we thought, Well, what are we supposed to do? We can't have him home with this aggressive behavior, we won't be able to manage it ourselves. And the only option at that time was for him to be admitted to the emergency room to see what medications might help with some of the delusions and hallucinations and aggressive behaviors that he was having. And at that point in the hospital, physicians did not really know how to treat or how to care for my dad.
From there, he was admitted to a psychiatric facility, unfortunately, and you know, the psychiatrist had to work with different medications to see what might work for him to calm his behaviors and nothing really did. And eventually, it got to a point where he was administered such strong anti-psychotics and medications that he was bound to a wheelchair. And motionless, he stopped eating, he stopped walking. And it was an incredibly traumatic, depressing thing to see. And we were only able to visit him a few hours in the psychiatric hospital. It was terrible.
And eventually, the psychiatrists determined that my dad was eligible for hospice, so that he only had a few months left to live. And so at that point, fortunately, we were able to bring him back home. And we brought him home, and he passed away just a week later. But thankfully, in the comfort of our home with our family, there to say goodbye to him.
Virginia Naeve 24:02
You lost your father when you were so young. Knowing that he wouldn't be around for the milestones in your life, college graduation, your wedding, the birth of your daughter Quinn, and the birth of your second child, which is like any second now. I’m really glad Chelsea's even spending time with us. How did you then and how do you now cope with the feelings that he's not there to share in your joy?
Chelsea Cox 24:36
Yeah, I like how you worded that question like, how did I then and how do I now cope? Because for me, my dad was diagnosed you know, when I was in high school, and the way that I've learned to cope over time has really changed as I've transitioned from being a kid to a young adult to a professional in this field. When I went to college, I did not know how to cope with the gradual loss of my dad to this disease. I did not have any positive ways of coping, and so I really resorted to, and it's hard for me to admit it and to talk about it. But I really resorted to partying and drinking too much to try to like numb the pain in a way, and of course, it didn't work. Luckily, at the time, I had a boyfriend who's now my husband of nine years, who wanted to hear about my experience, and he wanted to help me through it, and he was incredibly compassionate. And when my parents would come and visit, for parents weekend, you know, at Michigan, he would want to get to know my dad and, and help care for him and, and get to know my family and what we were going through and help us in any way that that he could. And so that really helped me get through and survive really some of those earlier years, right after learning the diagnosis and as my dad gradually progressed.
And then it wasn't really until later, after my dad passed away in 2012 that I started talking about it more and sharing my story. I became motivated to increase education and awareness of this disease, and to really share the trauma that I had gone through, and was still going through after he passed away. And that became a very productive way and a healthier way for me to cope and it's how I still cope with the loss of my dad to early-onset Alzheimer's disease.
And I just hope that if there's any listeners out there who feel like they're going through this alone and they don't have ways of you know, positively coping with the disease that just to know that there are so many of us who are going through this and that there's so many people who can help you. They’re there. Just need to find them and to reach out and people will listen.
Virginia Naeve 27:14
What do you love to remember about your dad?
Chelsea Cox 27:19
Just his like, his goofy nature, he was always so we kind of joke about it that none of us notice the early signs because he was always kind of off and like goofy. He was just such a jokester, and very humorous. And so I really remember and appreciate the joy and light that he brought to our family. Like whenever somebody was feeling down, he would be the one to lift everybody up. Yeah, so yeah, nice, very happy memories.
Virginia Naeve 27:51
Sounds like a very nice man and a nice dad. Well, Chelsea, we can't thank you enough for sharing your story with us today. It's important for people I think to know that Alzheimer’s is not just an old person's disease. You know, I, I want to start my conclusion by saying that I think that everyone who knows you and loves you knows that your education and career path reflect the love that you had for your dad and a real commitment to find a prevention or a cure for Alzheimer's.
I also want to tell everyone who's listening to this podcast that Chelsea has informed us that she was accepted to the University of Michigan and we'll be starting a Ph.D. program in the fall. She will pursue a doctoral degree in health behavior and health education with an emphasis of course on Alzheimer's disease at the University of Michigan School of Public Health. That is so impressive, Chelsea. I might add that she was one of only four applicants out of more than 100 to be accepted to this program. That's outstanding.
Chelsea Cox 29:08
Thank you, Virginia. I'm really looking forward to it.
Virginia Naeve 29:12
Well, I want to keep myself together when I say that everyone is sad to see you leave UCI MIND. But we're happy that you're following your dreams. Chelsea, we know you will keep in touch and we wish you the very best. Steve, would you like to say a few final words to Chelsea?
Steve O'Leary 29:33
Yeah, I think I'd rather say these in person but that may not happen. It's been five years or there abouts since we started working together. You are a rock star. You are a rock star. I've watched you develop and become you know a very talented marketing and you know communication professional. And I think the part that's most admirable about you is that you still maintain your personal touch. There's still that piece about you that that will always be Chelsea, Chelsea-isms. So I want to just say thank you as well for all the efforts that you've put in and again, for your willingness to come on to Spotlight on Sare.
Chelsea Cox 30:25
Steve and Virginia, thank you so much for having me on the podcast today and for your kind words. It's been such an honor, and a joy to work with both of you during my time at UCI MIND, and I am going to miss you so dearly. But I know we'll keep in touch. Thank you.
Steve O'Leary 30:43
Thank you. And I want to just tell all our other listeners to make sure you check for future Spotlight on Care podcasts. We'll be covering some really interesting topics like the benefit of music, the value of support groups, finding help in the home to take care of a loved one, investigating communities or alternative sites for care. So, there's a lot of stuff that we're going to still be talking about. There's lots to cover. So please join us on Spotlight on Care and we hope you enjoyed this session. Thank you very much.
Spotlight on Care is produced by the University of California Irvine, Institute for Memory Impairments and Neurological Disorders, UCI MIND. Interviews focus on personal caregiving journeys and may not represent the views of UCI MIND. Individuals concerned about cognitive disorders, prevention, or treatment should seek expert diagnosis and care. Please subscribe to the Spotlight on Care podcast wherever you listen. For more information, visit mind.uci.edu.