Losing Precious Time
How isolation and my mother’s illness shaped my experience in quarantine.
Story by Henrik Butz
“Nobody told you?” My twin brother Simon asked, a look of concern on his face.
“Told me what?” I replied nervously.
“Mom has Alzheimer’s. I thought you knew,” he said.
My whole world suddenly came to a halt. My body started quivering with fear. I tried to find a response but all I could stammer out was “No, that’s not possible.”
I doubled over on a nearby bench, tears flowing down my face as Simon explained to me she had hidden the diagnosis, fearful that she would interfere with our plans to move away for our freshman year of college.
In 2016, my mother was diagnosed with early-onset Alzheimer’s. This progressive disease destroys memory, motor function and other important mental abilities.
She covered up her diagnosis for several months because she believed she could handle it. She believed she had to for Simon and me, who were leaving for college in only a few months, and for her students, who saw her classroom as a second home, and saw her as a person they could confide in.
The diagnosis of Alzheimer’s is usually associated with aging, and those diagnosed are almost always 65 or older, according to the Alzheimer’s Association. My mother discovered she was affected when she was 50.
Early-onset Alzheimer’s is a rare form of Alzheimer’s that affects only 5% to 6% of those diagnosed with the disease, developing in individuals aged 30–60 years old, according to the Mayo Clinic.
After learning about her diagnosis in the spring of 2016, I dropped out of college and returned home to spend what precious time I had with her before her symptoms no longer allowed her to live independently. Simon followed shortly after, dropping out of Western in 2017 to return home, joining me and our brother Christoph, who was in his sophomore year of high school.
By the end of 2018, her symptoms had worsened to the point where we could no longer be her primary caregivers, leading to the inevitable move into an assisted living facility — something my brothers and I were dreading.
“It was just like, so [sudden] that we didn’t live with her anymore. It was extremely hard,” Christoph said. “I missed out on most of the environment that kept me happy.”
Despite her move into assisted living, my brothers and I visited her daily as she adjusted to her new living situation. Her doctor reassured us that her symptoms were relatively stable. She still remembered who we were and could partake in daily activities independently.
In December 2019, I left Seattle to move to Bellingham so I could finish school. The move was encouraged by all members of my family, including my mother.
Before the lockdown, I thought I had a handle on the progression of my mother’s diagnosis and what it meant moving forward. I was living on my own in a new city for the first time, and I was ready to begin a new chapter of my life.
All of that changed on March 23, 2020.
The introduction of Washington’s lockdown meant not only the freedom I once enjoyed was swiftly taken away, but so was my mom’s.
The risk of contracting COVID-19 is twice as high for people with dementia compared to members of the general public. Furthermore, these individuals are much more at risk of dying from the virus, according to research conducted by Case Western Reserve University.
In light of these findings, the assisted living facility my mother lived at implemented strict lockdown policies, which prohibited any visits from family members and friends, and barred residents from leaving their rooms. For her, this meant almost total isolation.
We could no longer find her wandering the halls of her assisted living facility, trying to help other residents despite the staff’s friendly but firm warnings, or joining her dad for a brisk walk every morning. The halls of her facility were barren and she was confined to her room. Her extroverted nature and the closeness she sought with friends and family had been hampered by the lockdown.
During the next couple of months, the weekly trips, dinners and visits we used to share were replaced by a phone screen like so many others. Our conversations became limited. She was scared, alone and unsure of what was going to happen next.
“I miss you,” she would say. “When are you coming home? I’m lonely and want to leave.”
“It’s not safe,” I would reply, choking back hot tears, not wanting her to see me falter. “This will all be over soon, and then we can see you.”
As the months progressed, our calls became shorter and shorter. She would repeat herself about every 30 seconds whenever she initiated conversations — a behavior known as looping.
“I can’t be here, I have to go,” she’d say during many of our talks, standing up and frantically walking away from the camera.
My brothers and I began to use short sentences to tell her the stories of our week, how school was going, memories of her friends we had growing up, and long-term memories of events from our childhood.
Her rapid deterioration was sudden and came with no explanation, until later research by the Alzheimer’s Society revealed that isolation causes a rapid level of decline for people with dementia.
“It went so fast once COVID-19 happened,” Simon said. “I just thought it was so brutally unfair, like the timing, and so that really got to me.”
Watching the person who raised you slowly crumble before your eyes, forgetting the core memories you share, and slowly forgetting who you are as each day passes is an agonizing feeling.
It was a feeling I thought those around me could not even begin to comprehend. I felt isolated and disconnected and shut myself away from the world.
I wasn’t the only one struggling. My brothers were forced to watch as her symptoms got progressively worse.
“Just to see the mental decline happen so fast, be shut out and [watch] from the sidelines, [while] not being able to do anything about it or even be by her side through it was just extremely hard,” Christoph said.
By the time winter quarter 2021 started, I was a wreck. Almost a year had passed and I was depressed and anxious. My emotions were numb, and I was totally separated from my support system. My previous coping mechanisms seemed to have no effect, and therapy was out of the question due to the rise of demand caused by the pandemic. I stuffed my emotions as far down as I could, but they consumed me.
All I could think about was my mom. Guilt and anger were overwhelming: I felt guilty for not being able to be there, guilty for not visiting more often when I had the chance and angry that I was spending precious months alone while she withered away. The pandemic taking away almost every aspect of normalcy and society made me face some things I wasn’t prepared for.
After a while, I realized I was missing out on the present by dwelling on the future.
My mind was filled with thoughts of what I was going to do and how I would react when my mom eventually passed.
Now, I try to live every day in the moment, cherishing every second of time I still have with my mom as she enters the final stages of Alzheimer’s.
The progression of Alzheimer’s is broken into seven stages on the Functional Assessment Staging Test (FAST). Her behavior indicates she has reached the bottom of Stage Six, which is Moderately Severe Dementia. Currently, her mental age is two to three years old. In a few months she will enter the final stage of Alzheimer’s, Severe Dementia. She will lose the ability to speak, walk, sit up, smile and hold her head up. The last stage only lasts 12 to 18 months.
I learned to do something for myself every day. Cleaning my room, going on a walk, and reaching out to my brothers helped me escape the fog every day.
I learned to forgive myself for things I could not control. I was angry at myself for not being there when I needed to be. I was angry about being in school. I felt guilty about sharing my academic successes with her. I constantly felt like I was failing to be there for her when she needed me most.
Looking back, I came to realize it is what she would have wanted if she could have understood the situation.
Lastly, I learned the coping mechanisms I had were insufficient. The sudden closure of gyms provided a rude awakening that exercise doesn’t fill the emptiness or cure negative self-talk, and that left me struggling with some of the lowest lows in my life.
In the winter of 2021, I moved back home to complete winter and spring quarters remotely, joining Simon and Christoph who were also doing school remotely. The move home meant I was once again reconnected with my brothers and support system I desperately needed, but most importantly, as pandemic restrictions were loosened, we had limited in-person visitation with our mom after more than a year of video calls.
As Seattle entered stage 2 of its reopening phase, her assisted living facility began allowing distanced visits. We were confined behind a plexiglass divider, but just seeing her was something to look forward to every day. Her face would light up as she saw my brothers and me approaching while she struggled to remember our names.
The results of extended isolation were playing out in front of our eyes. We could see her, but not touch her or spend time with her as core memories of us faded further and further away.
“You’re finally able to see her in person again. That’s when it kind of really set in how bad it was getting,” Simon said.
In the summer, her assisted living facility fully opened its doors to visitors for the first time in over a year, a moment my brothers and I had been looking forward to since the start of the pandemic. But the visits are not the ones we had hoped for: she no longer remembers us, nor is eager to see us.
Our visits consist of the time we spend together on walks, which provide a safe place away from assisted living. On her walks, she is not constantly denied or corrected by staff enforcing safety rules. She is not alone, anxious, scared or confused.
Our walks still make me feel lonely. I inquire about her day and share old memories, but it does not reach her. I have become an observer.
Despite this, I have learned to embrace this feeling and cherish every moment in the present with her, especially moving forward.