In our LiveTalk series, Being Patient spoke with Anitra Mostacero about her diagnosis of early-onset Alzheimer’s at the age of 42, her faith, her sense of purpose and her mission to maintain a brain-healthy lifestyle.
We all have a vision for our future, aspirations we hope to achieve, whether it be in our careers, relationships or passions. A diagnosis of Alzheimer’s or other forms of dementia, however, not only upturns the immediate reality, but also the anticipated future. There can be times of grief and sadness after a diagnosis, but that’s okay. ‘This too shall pass,’ people who are along the journey of dementia say. And it often takes time and introspection to learn to let go, to foster a support network and to adapt to the changes that accompany the illness.
Being Patient spoke with Anitra “Nia Mo” Mostacero, a veteran of the U.S. Air Force, about the early symptoms of Alzheimer’s that she experienced, the challenges she faced before and after her diagnosis of early-onset Alzheimer’s in 2017, and the keys to living well with the disease.
Being Patient: What motivated you to join the U.S. Air Force in the first place?
Anitra Mostacero: I spent 22 years in the Air Force. That was my entire adult life. I went in when I was 19 because I was working two jobs and had student loans that I was racking up. I had two uncles in the Army that told me, ‘Go into the Air Force, not into the Army.’ I wasn’t going to stay in for very long. I ended up staying in for the long haul and I loved every minute of it.
I was a health administrator by trade. I loved being a First Sergeant and that’s what I retired doing. The First Sergeant’s job is making sure that the people can accomplish the mission.
Being Patient: You were still working at the Air Force when you began experiencing the early symptoms of Alzheimer’s at the age of about 40. What was that like for you?
Anitra Mostacero: It was hard because I felt like I was working doubly hard to keep up. I was making mistakes on paperwork and missing meetings. I was very moody.
Being Patient: How did you compensate for those symptoms?
Anitra Mostacero: I used a lot of sticky notes. I doubly wrote things on my calendar and on my phone because I was on call. I always had to be alert. If you made mistakes, then you could mess up someone’s livelihood.
I had a really good chief and commander. If I messed up on paperwork or misspoke, they didn’t beat me over the head. I don’t think a lot of people really knew I was struggling. But I was.
Being Patient: What did your doctors think was wrong?
Anitra Mostacero: I was told by my primary care doctor at the time that it was stress. They sent me to the mental health department, and I was told, ‘You’re not old enough to have these memory problems, so it’s stress due to your job.’ Then I had a VA (Veterans Affairs) doctor tell me it was PTSD (post-traumatic stress disorder).
When the antidepressants weren’t working, I changed primary care doctors. The primary care doctor sent me to numerous specialists. They ruled out diabetes, heart problems and so many things. The neuropsychologist and neurologist were the ones that diagnosed me with young-onset Alzheimer’s.
Being Patient: How did you react when you received your diagnosis from the doctor?
Anitra Mostacero: I don’t remember feeling much other than feeding off of his reaction. When he pulled up my brain scans and the results of the PET (positron emission tomography) scan, his whole demeanor changed. He just seemed really sad, so I fed off of that. His words of, ‘You have five to eight good years’ spun me into a depression that lasted over a year. All I could think about was the later stages.
“It’s natural to grieve, but don’t stay there. Reach
down into whatever spiritual base you have that’s greater
than you, that tells you it’s going to be okay, and really, really
hold onto that, because it’s going to be okay.
And forgive yourself when it’s not okay.”
I feel like I have a whole lot of life to live. I cannot fathom giving into this diagnosis within such a short timespan.
Being Patient: How have your friends and family responded to your diagnosis?
Anitra Mostacero: My best friend has been growing with me. We talk about twice a day because she’s retired also. If there are things that I’m experiencing, she’s learning about it.
One thing that she has stopped saying, because I asked her to stop saying is, ‘Don’t you remember?’ I think people say that a lot to folks with dementia. Saying ‘Don’t you remember?,’ is not very helpful.
Using honest and open communication with friends and my son is important. My son had a hard time in the beginning with my diagnosis. I don’t think he really grasped the diagnosis until recently, and I moved to Idaho to be near him.
Being Patient: So what’s a better way for a friend to respond instead of saying, ‘Don’t you remember?’
Anitra Mostacero: Go with the flow of the conversation, because sometimes it’ll come back to us, just not at that moment. When we say we don’t remember, it makes us feel bad. If I don’t remember, say what happened and refresh our memories.
Being Patient: What are the symptoms of Alzheimer’s that you experience now from the day-to-day, and how do you compensate for it?
Anitra Mostacero: I forget things. My attention span is very short. I have reminders on my phone for everything. I even have a reminder telling me to set my reminders for the next day. I live by my reminders. But when things happen in the moment, I try not to beat myself up and I forgive myself for it. I mean, what can I do but pick up the pieces?
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Being Patient: Your ongoing work in advocacy has been really important in giving you a sense of purpose. For instance, you’re an early-stage advisory group member at the Alzheimer’s Association, and you’re involved in the Black Dementia Minds group of the National Council of Dementia Minds. From working with people living with mild cognitive impairment and dementia, what do you think are the key ingredients that help people live well after a diagnosis?
Anitra Mostacero: The first one is having some sort of spiritual foundation. Whatever it is that lifts you up that’s greater than you, you need to have that. Then you need to have a purpose, a purpose that’s bigger than yourself, whether it be volunteering at your church or living for your grandkids.
And also there’s healthy living, like watching your diet. Get moving. Walk or go to the gym if you’re still able. If it’s good for your heart, it’s good for your brain. Minimize your stress, because stress just amplifies memory problems. Have a peaceful life.
Being Patient: Any words of advice for people living with dementia who are in a dark place right, and how they can look ahead with some hope?
Anitra Mostacero: It’s okay to grieve because we’re naturally going to grieve our abilities. We’re going to grieve our futures that we thought that we were going to have. I was grieving the fact that I wasn’t going to be starting a second occupation after retirement, that I wasn’t going to be doing prison ministry or working for a nonprofit. I was grieving that person.
“You need to have a purpose, a purpose
that’s bigger than yourself, whether it be volunteering
at your church or living for your grandkids.”
It’s natural to grieve, but don’t stay there. Reach down into whatever spiritual base you have that’s greater than you, that tells you it’s going to be okay, and really, really hold onto that, because it’s going to be okay. And forgive yourself when it’s not okay.
The interview has been edited for length and clarity.
Contact Nicholas Chan at firstname.lastname@example.org