How I’m Coming to Terms With My Mom’s Early On-Set Alzheimer’s Disease

You’re never truly prepared to deal with the slow and painful decline of a loved one’s mind.

It was 2016 when my mom began showing signs of cognitive decline. At first, my dad didn’t think anything of it. My mom had been known to be erratic in terms of her memory and personality throughout her entire life. However, three incidents over the next few months forced him to begin taking things more seriously.

The first happened when Dad bought a digital photo frame, one that rotates through photos every few seconds. He set it up in the living room and uploaded photos from vacations that my parents had taken together.

One particular set of photos showed my parents vacationing in Germany a year prior. As they looked at the photos one evening, Dad started reminiscing about the trip when Mom asked, “We went to Germany?” She seemed confused and had no memory of having visited Germany.

The second incident occurred when mom was driving home from work like she did any other evening. Suddenly, however, she couldn’t remember how to get home. In a panic, she pulled over into an empty parking lot and called my dad, asking for help. Dad drove out and found her, a difficult feat since she wasn’t sure where she was. When he finally found her, he had her follow him home.

The final incident was when my mom was found wandering outside in the neighbor’s yard one day. My mom was looking for my father, who was at work at the time. At one point, she broke down and started screaming hysterically, catching the attention of the neighbors. The neighbor helped her back inside and called my brother to tell him what had happened.

This neighbor had experience with people with Alzheimer’s, and she suspected that something similar was happening to her based on my mother’s unusual behavior. She pleaded with my brother to seek out help.

Later that night, my brother had a conversation with my dad about our suspicions, and my dad finally agreed that we should see a doctor.

Diagnosis

A few weeks later, my dad set up appointments with several neurologists. On the one hand, we were hoping to confirm our suspicions that she had Alzheimer’s, but on the other, we were hoping it wouldn’t prove to be true.

How could it be true? My mom was only 52 years old. Don’t people usually get Alzheimer’s when they’re 70 or 80 years old? She didn’t even have gray hair yet.

Since Alzheimer’s can manifest years before symptoms appear, it can be difficult to determine how much of the disease has taken hold before loved ones or the affected individual notices.

According to the Alzheimer’s Association, Alzheimer’s is a degenerative brain disease that worsens with time. Over time, the disease damages or destroys neurons in the brain, making it more and more difficult for the person to “carry out basic bodily functions, such as walking and swallowing.” The disease is ultimately fatal.

Alzheimer’s Association states that one in 10 people, aged 65 or older, has Alzheimer’s — an estimated 5.8 million Americans. They also predict the number will grow as the population ages, and that by 2050, “the number of people age 65 and older with Alzheimer’s dementia is projected to reach 13.8 million.”

While Alzheimer’s is a common affliction, early-onset Alzheimer’s, which my mom was ultimately diagnosed with, is uncommon. The diagnosis is given to those who have Alzheimer’s in their 40s and 50s. According to the Alzheimer’s Association, “it is estimated that approximately 200,000 people have early-onset” in the United States.

Additionally, “since healthcare providers generally don’t look for Alzheimer’s disease in younger people, getting an accurate diagnosis of early-onset Alzheimer’s can be a long and frustrating process. Symptoms may be incorrectly attributed to stress or there may be conflicting diagnoses from different healthcare professionals.”

We took her to multiple neurologists to try to get to the bottom of things. Everything about trying to determine if my mom had early-onset Alzheimer’s proved to be difficult as expected. In large part, this was because my mom is a non-native English speaker. My parents are Vietnamese refugees who came to America in the early 1980s. Over the years, my mom was able to master conversational English but still had a thick accent.

At times, my parents had trouble understanding the instructions given to them during the examinations. Sometimes, my parents’ heavy accents didn’t adequately give the neurologists a good understanding of what was going on. Some even jotted down in their notes that they suspected that it wasn’t early-onset Alzheimer’s, but rather, a cultural barrier.

When my dad finally talked with our Vietnamese family doctor, she said, “Why are you wasting your time with all of those neurologists? Go see the doctors at Baylor College of Medicine. They know what to do. They also have Vietnamese-speaking doctors there that can help.”

After a few tests, the doctors at Baylor College quickly determined that my mom indeed had early-onset Alzheimer’s.

Caregiving

As my parents were going through the doctor visits and testing, I was mostly oblivious to what was going on.

For one, my parents and I don’t talk to each other often. We don’t have the sort of relationship where we chit chat or openly express affection. Our phone calls were usually very brief and as-needed. In an earlier article, I write about my relationship with my parents that goes deeper into our dynamic.

My parents also never wanted to worry me, so they’ve been known to keep information from me.

Secondly, my father was in denial for a while about what was going on with my mom. Like many other cultures around the globe, the Vietnamese are notorious for not taking mental health issues seriously. Dad had just figured that mom was going through some kind of episode of depression.

Lastly, I had moved the year prior for a new job in another state. The distance made it difficult for me to accurately grasp what was going on, rendering me ineffective in helping them.

I only ended up getting wind of what was going when my brother called one day to tell me that they had determined my mom had early-onset Alzheimer’s. I was speechless and shocked. When I finally found my words, I asked, “What do we do?”

By then though, mom’s condition had already worsened, due to the delay in getting the proper diagnosis. Her memories had become more fragmented and she was starting to struggle with basic day-to-day tasks.

She couldn’t be left alone anymore and required 24/7 supervision. If she was left alone for hours at a time, she was prone to wander, which was dangerous for her. She was constantly looking for my father, who was usually either at work or running errands, and she called him in a panic every 15 minutes to ask where he was. My dad’s performance at work declined as a result of the distraction and stress.

Over the past few years, my dad had become her primary caregiver — clothing, showering, and feeding her among other things. Hospice or long-term care wasn’t an option. We decided that we wouldn’t be comfortable having her live in an environment where she couldn’t communicate with anyone in Vietnamese. Additionally, her constant need to make sure my dad was within her sights would be an extreme source of stress in an environment that wasn’t familiar to her.

Dad did the best he could. As a refugee immigrant in America, he was accustomed to fighting and surviving, no matter the odds. He was never the type to ask for help. But this was a different type of fight — one where even the most patient person has their patience tested to the limits.

One day, in an out of the ordinary text message, he asked, “When can you visit?”

I told him I had a busy work schedule but might be able to figure something out. Dad replied, “Work comes first, son. Your mom and I worked too hard our whole lives to ensure you and your brothers were successful. Don’t worry about it.”

I read between the lines. I could see the tiredness in his words. He was asking for help. He just wasn’t being obvious about it. I replied, “I’m hopping on a flight next week. I’ll stay there for a full two weeks and help out where I can.”

He replied, “Okay. Mom will be glad to see you.”

A shell of a former self

It’s one thing to be the primary caregiver — seeing the changes in your ailing loved one daily. It’s quite another when you live far away and see the decline only every now and then. The changes are less subtle — shocking, even.

The pandemic had made it hard for any of us to come home. My brothers hadn’t visited in months either. Since her diagnosis, I’ve been able to see my mom a total of 4 times. Each visit, I felt like she was a different person. Each time, I felt like another layer of her shell had been peeled away.

Last month, I quarantined myself for two weeks before taking the flight home. When my parents picked us up at the airport, I gave my mother a tight squeeze. She hugged me back. Her hug had less warmth than I remembered. Her eyes were different too — empty. She saw me standing in front of her, but her gaze went through me as if she didn’t recognize me.

I had been bracing myself for the impact of Alzheimer’s on my mom for years while also compartmentalizing the reality of the situation. What she said next still shocked me. She said in Vietnamese, “Hello, child. What’s your name?”

I fought back tears, gritted my teeth, and smiled at her, “Hi Mom. Don’t you remember me? I’m Quy, your oldest son.”

The last time I had seen my mom was back in 2019, before the pandemic. And it was evident that her condition had worsened drastically since then.

She had scratches and acne on her face as she was constantly touching her face with her fingers. She was always moving her legs, up and down, even when standing still — constantly restless. She had trouble remembering how to lay down. We had to remind her how to close her eyes if she wanted to rest.

She didn’t know what house she lived in. She no longer recognized us in pictures — or herself in pictures, for that matter. Several times, I went through old family photo albums with her to try and jog her memory. The efforts always proved to be fruitless when her eyes wandered off as I turned the pages of our forgotten past.

She had forgotten how many children she had and how old they were. She knew she had children, but forgot that we were fully grown with careers of our own. She kept asking me if the kids (us) were playing upstairs, seemingly not recognizing that her oldest son was standing there right in front of her.

I wasn’t familiar with the effects of Alzheimer’s on bilingual people as there wasn’t much reading material on the internet, but it was evident that her English vocabulary had deteriorated. Because I can’t speak Vietnamese well, my communication with her had become even more limited.

The biggest obstacle for us was her sleeping schedule. Because of a common phenomenon that happens to people with Alzheimer’s called “sundowning” or “restlessness, agitation, irritability, or confusion that can begin or worsen as daylight begins to fade,” the ability to relax or sleep when it was most needed was drastically impacted. My mom had trouble sticking to a consistent sleeping schedule, often wanting to go to bed at 7:30 PM— a major boon for my dad.

Good Days & Bad Days

There were moments where her memory was improved. She would remember my name or remember where the restroom was. She would go to sleep at a decent time and stay asleep for hours, giving dad enough time for rest. Other times, it wasn’t so easy.

Dad told me, “Sometimes there are good days. Sometimes there are bad days.”

I offered to keep mom accompanied on the nights she had trouble sleeping so my dad could get some rest. One tiring evening, I walked her around the house for hours. She kept asking me the same questions. “Where do you live? Do you have a girlfriend? Where are your parents?”

Every time we passed my parents’ room, I peeked in and saw my dad sleeping heavily. He always snored loudly. I felt a pang of sadness. My dad was exhausted. My mom was lost in her head.

Both of my parents had experienced so much hardship throughout their lives after arriving on America’s shores in the early 1980s, after the Vietnam War. They dedicated their entire lives to working hard so they could put a roof over our heads, put us through school, and survive. And when they finally got a chance to enjoy old age and retirement, my mom got hit with early-onset Alzheimer’s at the age of 52.

There were times where I looked at mom and saw how confused, scared, and helpless she was. For the past 4 years, she’s slowly become less of her former self. To me, Alzheimer’s felt like a knife in the side, slowly turning enough to cause pain, but not enough to kill. How can anyone call this “living”?

Why was life so unfair? I grew resentful. Angry. I didn’t know who to lash out at. I was angry that she wouldn’t get to generate or retain new memories. I was angry that our adult years together had been taken early from us. I was angry that mom would never get to know grandchildren, a lifelong dream of hers. She had always wished for one of us to have a girl she could hold since she never got to have girls of her own.

The anger turned into guilt. I felt sorry for myself. I felt bad that I didn’t come home often enough. I felt bad for not calling her weekly. I felt bad that I didn’t tell her I loved her enough. I’ve been such a bad son to her. I started crying uncontrollably.

As we were still walking around the house, my mom noticed me crying and asked me what was wrong. I felt no point in telling her since she wouldn’t know what I was talking about anyways nor remember the conversation anyways. It was futile, I thought to myself.

“Don’t cry. What’s wrong? I can’t help you if I don’t know what’s wrong,” she whispered sadly. I continued to ignore her. After a little while, she said, “I love you, child.”

I stopped crying and looked at her incredulously. “What did you say?” I asked. She placed her hand on the back of my head tenderly and said, “Quy, you're good to me. I love you.”

My eyes started watering again, but I composed myself. “I love you too, mom.”

We continued walking around the house in circles. The house was dark but had enough lighting for us to see in front of us and walk safely. She finally said that she was tired and was ready for bed, and I enthusiastically agreed.

After laying her down and tucking her in, she looked up at me with tired eyes. “Thank you, child. Where are you going to sleep?” I told her that I would stay with her until she fell asleep. “Thank you, Quy. I love you, child.”

I felt a huge weight lifted off me upon hearing those words. The guilt and pain of not being around enough had been eating at me for years. Despite my mom’s condition, I knew if she was mentally sound and normal, she’d known my love for her was unconditional.

As soon as she closed her eyes, she opened them again. She asked to go to the restroom and I helped her up. I took her to the bathroom. I looked at the time — 4 AM.

Upon coming out, she looked at me and said, “Hello, child.”

“Hi, mom,” I replied, tiredly. “Ready to go to bed?”

She answered, “Can we walk around the house?”

I sighed. Like my dad said, “Sometimes, there were good days. And sometimes, there were bad days.”