How Did My Dad Know He Was Dying?

It's not every day your father asks you to take on the responsibility of taking care of your fully handicapped brother. I know he wasn't comfortable. Something was up. How did he know?

It was fall of 2020 and life was still far from pre-pandemic normals. The weather was nice though and I enjoyed my post-meal walks on the walking path that I created on our property. During those walks, I would often FaceTime with my parents to check in on them. They lived in a town a couple of hours away. They would talk about how their days were going, their health issues, the world, life, anything. Sometimes we would even let it be silent for a minute or two, but we were spending time together. It was only a few short years before that I moved back to Washington State. I had moved away to go to college in the midwest when I was only 17, started my career in teaching, kept going to university, changed my career to image consulting, did all kinds of things, but never had a chance to settle back down in Washington, where most of my family lived.

So, I treasured the opportunity to reconnect on a closer level with my parents. My husband and kids and I would often drive out to visit them on Sundays, and we also had lots of phone conversations. I don’t know why we had more phone conversations when I lived closer than when I was across the country. I was surprised by this, but I guess this might be how it works when people's lives start intertwining in more places than before due to geographical proximity.

So I would often call them when I had a few minutes, such as on my walks. It was during one of these walks my dad was sharing how his right hand was slowly growing numb and he was skipping notes when he played his accordion. He played the accordion every night for quite some time. One of the reasons he would do this is for my handicapped brother, who would sit in his wheelchair and enjoy the live performances. He was their first child and was born prematurely when my mom got sick in the late stages of the pregnancy. He barely survived, but did end up having cerebral palsy. Later, when he was about one year old, he also developed hydrocephaly, which caused extensive brain damage. His body never really developed much, and he remained small, maybe the size of a 12-year-old, and very immobile.

Mom and dad had to take care of every little need for him. It was a full-time job. I don’t know how they did it all those years. Come to think of it, I don’t know how they moved us 7 kids to the United States from Estonia when the Soviet Union collapsed, either. Here’s a picture of us with an Austrian lady who helped our family during our refugee voyage through Europe and onto the US. (My oldest brother is in the baby carriage because they had no wheelchair at that time.)

Back to that phone call, though. My dad was an integral part of taking care of my brother, with all the lifting, changing, and transporting. He and my mom did an amazing job taking care of him for over 45 years. The doctors had only given my brother until around age 35! My mom had had failing health for years at that point and my dad knew that if something was seriously wrong with him, she couldn’t handle my brother by herself. I imagine he must have wrestled with this for days, realizing that something was very abnormal with him. He was generally a very healthy and strong person. He was 73, but his body was probably more like that of a 63-year-old. He could still lift heavy things, do construction projects, and enjoy recreational activities.

I was touched that he felt comfortable enough to ask me. I could tell he was uneasy about it—shy even. It’s a big ask. Knowing how involved it was to take care of my brother, but he did it. He asked it. He saw it as his responsibility to provide for my brother’s care in case he wasn’t going to be around much longer. How could I say anything but, “Of course, dad. You know we would do anything for you”?

Nobody, not dad, not mom, not my husband, and of course, not I ever in a million years believed anything serious was happening to dad. He just needed to go get checked out at his doctor’s office, and his appointment was coming up soon, so we didn’t worry.

Little did we know that even before that appointment, during another FaceTime, we would have to have him taken by ambulance to the nearest hospital because his whole arm was getting numb and he was starting to become disoriented. They did all the scans and the news was bad. He had a tumor on the left side of his brain the size of an egg. This explained his right hand getting numb. This explained his forgetting numbers and basic math once in a while, too. They gave him some steroids to buy time and referred him to neurology at a larger hospital in the city where we live.

My sister drove him half-way and I picked him up to take him to his appointment. I remember getting on the highway to go get him and realizing he was dying. I was calm about it, but it hurt so bad, too. I know we have all lost people close to us, and nobody can fully describe how it feels. I now also know how it feels to lose my dad.

At the neurologist, the doctor said we needed to do a biopsy. “If you want, we can go a step further and just remove as much of it as possible,” he then suggested. We had hope! So, dad signed up for brain surgery. I stayed with him as long as they would let me with Covid visitation protocols. His surgery took place two days after. The doctor didn’t have a hopeful look on his face after the surgery. He told me they could only take out 80% of the actual tumor as it had already taken over more of the surrounding tissue. Oncology would have to get involved.

As dad was recovering from his surgery and trying to gain some function, he asked us to go ahead and take my brother. It was hard for my mom to let my brother go. She didn’t want so much to be abnormal all at once, but having my brother at the house really increased my dad’s stress level, and he just couldn’t deal with it. So we took him, thinking it would be temporary, reassuring mom that as soon as dad was better, we would bring him back. But it wouldn’t be temporary. Turns out, my brother would never live there again.

My sister, who is a nurse, was the one dealing with all the doctors for my dad while I dealt with getting some of their other affairs in order. She called and delivered the terminal news: it was late stage of the most aggressive brain cancer, glioblastoma. The next 2 and a half months were full of the ups and downs of someone dying from brain cancer. I wasn’t at mom and dad’s house as much because we were now busy taking care of my handicapped brother, but two of my sisters, who are nurses, put in a lot of time there. It was a struggle for everyone involved.

We buried dad in February of 2021, just weeks short of his 74th birthday. He was an amazing man. He was strong. He loved his family more than anything. He was generous and empathetic. I think he was a mind-reader and my siblings would agree. He was ultra-protective of his children and never wanted us to be hurt by anything or anyone. The pain of losing him was raw and deep.

He was always responsible and thoughtful. In his dying, he showed it more than ever with wanting to take care of my mom and brother. He was valiant, and once he grasped that he was dying, he wasn’t afraid of it except for the fact that we would all be so devastated, especially my mom.

I will never fully know how he knew that he was about to die when he asked us to take care of my brother, but my husband and I do take care of him now. I wanted to tell you this story because it changed me at the core.

Last time, I wanted to run the business “The Image Architect” because it was so cool to have such a solid approach to wardrobe planning, makeup, colors, and all the rest. This time, it’s all different. I am only here because I want to stay in touch with you, keep giving as much as I can, and maybe make a difference in inspiring people to choose to dress for joy with colors that bring light into their lives, too… and Light Loves Color.

It takes so much more than just wearing the right colors and styles for us to look amazing. This is why the more holistic approach. I love to hear from you, so please don’t be shy and reply.

Love, Tatyana