I thought my husband had a brain tumor, but he was diagnosed with early-onset Alzheimer's
My husband and I met at Rutgers University, when we were in college. We met the one time he was in the library in four years. And I thought he was adorable. He had black curly hair. I just thought he was so cute. He was also wild. The second day I saw him, he had a bloody gash on his forehead, which I later learned was just one of many head injuries to come. But he was so fun and literally the funniest person I'd ever met in my life.
He was also the smartest person I have ever met.
When we were 23, we got married. He was in dental school in Baltimore, and then did his residency at Johns Hopkins. Then, we moved back to New Jersey. My husband started a general dental practice and did that for 30 years. He was beloved by his patients. He was the most popular dentist and everybody just loved him. He was very patient, very kind and excellent with the work.
We raised our kids, put our three kids through 12 years of college and then finally said, ‘okay, now we're done with college!’ It was like we built our life up to raise our children, pay for them to go to college, and we were on the same page, expecting a new phase of life together. And then we found out about his early Alzheimer’s diagnosis.
For a while I felt literally like I got to the top of the mountain and then somebody just smacked me right off of it. I was back at the bottom again like oh my God. That is how I felt for months, probably a year.
I had noticed that he was getting forgetful and that was not like him. He never got forgetful at all, he was like a homing pigeon with directions. Like if he was somewhere once, 20 years ago, he could drive there. And then he started having trouble getting back home to New Jersey from Manhattan. He was misplacing things. He was forgetting things.
My husband’s Alzheimer’s came on quickly. I knew something was wrong. So I shared it with his parents, and his sister, who's a doctor. They said they didn't think so, but I knew …I knew him so well. So, I took him to a neurologist. We went for some neurocognitive testing. I took him for a spinal tap at Rutgers. I honestly thought maybe he had a brain tumor, but he had Alzheimer's. He was diagnosed at the age of 57.
There is no family history of Alzheimer’s. Of the three known Alzheimer’s genes, he doesn’t have any of them. He didn't have a high level of body inflammation. As a dietician, I know Alzheimer's is sometimes called ‘Type Three Diabetes.’ Didn't have that. He had normal glucose.
However, I think it was his lifestyle: He didn't sleep enough. He slept five hours a night, had a very stressful, fast-paced job, and he had multiple head injuries over the years. He had a skiing accident where—he was really a fearless daredevil—he had skied into a tree on a double black diamond without a helmet. He also fell off Mount Katahdin hiking with my daughter.
And then you pair that with the stress, with not eating as well as I did, not sleeping enough, I suspect it created neuroinflammation in his brain.
He was diagnosed in the worst way, through telehealth. Both of us had an afternoon of patients and in between, we had a telehealth conference where the neurologist said, well, you have, early onset Alzheimer's. So set an appointment for a month and okay, bye-bye. It felt so shocking and so harsh, with no empathy, no support, nothing.
For weeks, I would just cry. I couldn’t talk much about his diagnosis. I couldn't. As soon as I opened my mouth, I would cry. But you have to allow the grief because you can't just hold it in. You have to grieve for the part that you are losing. For weeks, I couldn't even talk about it without crying, but then it passed. Then I thought, ‘okay, this is what it is.’ This is what I have. And so let's do the best we can do with this new life, right?
Being a dietitian/nutritionist, I am a researcher and I read literally everything I could find on Alzheimer's and the cause and the treatment and lifestyle recommendations and the latest research—everything. It just became my mission.
So, I put him on a strict protocol. I got him off of sugar. I put him on a low glycemic index diet, the way that I eat. I started him on time-restricted eating and supplements to help with cognitive flow and to help decrease inflammation. He's a perfect patient. He lost 25 pounds. I make sure he sleeps well. I make sure he exercises. We're doing all the things to prolong this journey. I don't know what will happen in the journey, but I'm doing my best to prolong it.
You can't worry about the future because we don't know what will happen—nobody knows what will happen with anything! You just have to enjoy the day that you're in, and not be reckless. You have to plan somewhat, but not obsess. You just try to live in the moment that you have, that's what we try to do.
When a spouse becomes a caretaker, it's a different relationship. And I think as caretakers, we have to understand that and move with it. For example, intimacy will change, so perhaps it means you’re taking a bath together. You have to adjust to it. Your spouse is not going to be the same. You can't expect that they will be, and you can't get angry at them. It's not their fault. They have it. You have to love them in a different way. The love is the same, but it's a different relationship.
What keeps me going is what I do have. I do have the time that I have with my husband. I’m grateful for the time that we get with our kids. Not every day is a great day but the great days are great days and they make me really happy.
That said, it's hard to figure out the next step when you don't know the timeline of this because it is very unpredictable.
To the spouses who are caretakers, it's really important to recognize that your life will change and accept that it will change and find the best in that change. Life together is different, but it can still be special.
The heartbreak of losing my scientist father pixel by pixel, and using his story for good
Julia B as told to Liz Tenety
My dad was an absolutely amazing, brilliant computer scientist who worked on lunar research with NASA for the team that figured out why the moon reflects light the way it does.
He was part of the team where, when the lunar regolith samples [moon material] came back down in one of the Apollo modules, he actually went out on the Ticonderoga and got to meet the capsule. He also worked with the USSR during the Cold War and worked internationally with scientists.
He was an incredibly curious person, just constantly trying to figure out how the pieces fit together. Asking questions like, why does the moon reflect light? I don't even know how to describe most of the work he did because I don't know those scientific words. Now, I'm trying to read his papers, and I'm realizing I actually have no idea what he was writing about.
I wish I had gotten more of those stories out of him before the early Alzheimer's took his words.
My dad had been losing his words for most of my life in a way that we now realize retrospectively was Alzheimer's.
He was the kind of dad who, when I asked him, so why does the moon change phases? He got out a ping pong ball, a flashlight, and the globe and would try to explain to me. And I like to think I got his version of curiosity.
The hardest part about Alzheimer's was watching his brain lose its curiosity and get stuck in these loops that he couldn't get out of. It was incredibly painful to watch a man who spent so much of his life processing the world around him, then later not be able to process the world. By the end, he hit the point where he couldn't open and read the birthday card that I gave him. He couldn't open it. We're talking about a man who had a PhD.
We knew something was really wrong when he got lost driving to meet me at a place we had driven to together for decades. He got lost driving on the main street and could not find his destination despite having a GPS, despite having a map. Despite having all of that, he could not find his destination. That’s the moment I knew for certain we had crossed the threshold. And that’s when I had to take his car keys.
We basically forced his hand into getting evaluated and at that time, it showed Alzheimer's or dementia of some variety. He fought that; he thought the testing was wrong, which it wasn’t. It was a very difficult time for him to be a witness to his own cognitive decline. He would say, “I’m lost all the time,” which is just horrible because he was aware that he was lost, aware that he was confused, aware that he didn't have his words right.
To see this man struggle and decline, this man who had been such an incredible scientist, working with NASA, spending his whole life engaged in scientific inquiry, it was absolutely heartbreaking. I would not wish this disease on my worst enemy.
It was like losing my father pixel by pixel.
At first, I didn’t identify as a caregiver because my father was living in an assisted living community. But then I realized I was paying my dad's bills, I was doing his laundry, I had taken on most of the responsibilities of caretaking and life coordination for my dad. I became his caregiver.
Even though I was not living with him and he was in an assisted living community, I was still the 24/7 backdrop of his life. I was always on call. I never knew what each phone call was going to give me—because they have to call you for every band-aid, and I wanted them to call me—but it was just absolutely grinding. I was in a constant state of alert. It was hypervigilance: you're waiting for the other shoe to drop at any moment in time.
In the last eight months of his life, when he no longer knew who I was, that's the moment I would say I stopped being his daughter and started being more of a caretaker.
All the resources I had available to me were all very basic. I'm over here drowning! Trying to get him to agree to shower and let me cut his toenails, and he won’t eat his food and he’s trying to move to Australia or walk to Wisconsin. I didn’t need to know what stage of Alzheimer's that is. . . I just need to know how I'm supposed to survive this. There was no manual for that. . . I wish I had had access to the daily tips and tricks of how to work with the Alzheimer's brain.
I want other caregivers to know that they shouldn’t be afraid to ask for help, or to just fall apart every once in a while. You’ll have to pull yourself back together, but it’s okay to fall apart.
It’s the little things that keep you sane during this journey.
For me, I kept a photo of my dad on my desk for years that was classic,‘My Dad’. . When I looked at this photo it's the love in his eyes that looks like the dad I knew. I had to keep that photo on my desk so that when the phone rang for the 27th time with him calling me trying to charge his TV remote with the computer charger, or not knowing which end was up, I had the patience to not let the frustration show up in my voice. I needed to remember who he truly was, and not always focus on what Alzheimer’s had done to him.
When I was able to keep his true essence in my mind, it helped me stay patient, to not let the frustration show up in my voice.
That is the hardest thing: You cannot let them know that you are frustrated because they don't remember. You remember. But they did not choose this. They are not trying to aggravate you, they just don't know anymore. I can't imagine how scary that must be. So trying to hold on to that for them—and being there for them when they are scared.
I am sharing our story because it's what my dad would have wanted. He would have wanted there to be something good that came out of this horrible, horrible experience. And so anything that I can do in his honor, I'm going to do. But that's also who I am–and who he was.
