It’s Inauguration Day here in the United States, a day for which so many of us have been waiting for a very long time.
I’m aware that I haven’t blogged in months. The truth is, that last post caused a lot of self reflection and backlash. I do not regret writing or posting it. I stand by the things I said, and I am grateful that we now have President Biden at the helm of our country. But my posting it led to a lot of decisions and changes in my life.
Shortly after writing it, my Facebook became a hostile place, with friends and family on both sides vehemently arguing. Some of my nieces called me toxic, and I decided to take a break from my family for awhile. I realized that boundaries are healthy, especially with people who demean you or your beliefs. There are times when things get so heated and uncomfortable that the best thing to do is separate yourself from the situation and cool off.
I blocked my family and didn’t call my parents every week as normal. It was like I was doing a fast from negative energy, and it was great.
People have gotten very excited lately about “free speech” and “cancel culture.” But the thing is, it’s okay for people to block or not talk to other people sometimes. You have a right to free speech on a Constitutional, government level, but I have the right not to listen to you. I don’t have to give you a platform. I can “cancel” and call out people in my life who are abusive to me and who I am as a person. I can do that. It’s called choosing your friends and standing up for yourself. It’s allowed.
So I blocked my family. Not forever, not permanently, good grief. My husband and I agreed it would be until at least after the election and things settled down.
But then my dad got very sick. In the end of September, he started forgetting things, like how to drive home from the post office or how to unlock his phone. He gave my mom the car keys and told her she needed to drive from now on. More and more things got lost in his mind, to the point that my mom had to put post it notes all over the house telling him what or how to do certain everyday things. Wash your hands. Take your medicine. Put in your hearing aids. Brush your teeth.
The thing was, he knew that something was happening. It wasn’t like dementia. It was quick, and he knew that he was losing his mind. He called my husband to tell him, and they spoke about what was going on. He went to doctors and a neurologist. Based on the symptoms, they determined that he likely had Creuzfeldt-Jakob disease, a super rare and terminal brain disease that gradually destroys your brain and memory until you go into a coma and die. Most people die within a year of diagnosis.
By the time this diagnosis was on the table, my family (my daughter, husband, and myself) had contracted COVID-19. I was the one currently ill, laying in bed, researching this awful disease and crying, knowing that my dad was probably dying. On a Monday morning in mid October, I broke my ban and called my mom. She began crying, and so did I. And then my dad, who had been napping, got on the phone, saying in broken speech that he felt like he needed to pick up the phone and see who was calling. He couldn’t speak like he used to. He sounded like a child, sounding out and trying to find the right words, but he told me that he loved me and was glad to hear my voice. He cried, and my dad never cries. He was broken, and we all knew it and cried together for the past and what was lost.
We spoke a few more times on the telephone coherently, and he told me how he understood now what it was like to have a brain that didn’t work. He told me it felt like his brain was rewinding. He said he hoped that he would be able to get better so he could help people going through similar issues.
But we knew he wasn’t going to get better.
Progression and Regression
In early November, my brother and sister went out to see him and help pack some things out of their storage unit. My brother sent me videos of my dad at the table, trying to dance and sing along to old songs my brother used to break dance to, as well as to the Beatles “Let It Be.” The next day my sister and mom called to say that the neurologist was pretty certain dad had CJD. In private, my sister and I determined that I needed to come out that next weekend to help my mom.
By that next Saturday, my dad was bed bound and my mom had decided to use hospice care to keep him at home. I arrived to see my dad in a hospital bed and diapers, my two sisters helping to change and feed him. He recognized me and could still speak a little bit, but he mostly communicated with his eyes and squeezes of his hand. The next day, my sister from Texas left, and my oldest sister and I stayed to help my mom take care of him for the next week. We played him music, read to him, and talked about the past. We read stories that people had sent him and showed him their photos. He said silly things and still knew my mom, squeezing her hand, complimenting her, and knowing “their song” when we played it.
But by the middle of the week, he couldn’t speak or eat anymore. He literally forgot how to swallow. He started to get unresponsive. We had my brother and sister call him one last time on FaceTime, and he tried so hard to tell them that he loved them. We would sit with him in the dark, playing music from the 1960s (I’ll always think of Dad when I listen to “Graceland” by Paul Simon now), holding his hand, and wetting his lips. We told him it was okay to let go, that we would take care of mom. And we prayed that he would pass quickly.
I left on Saturday afternoon after staying for one week. I hugged him and told him that this was the last time I would see him on this side of the veil. I thanked him for being a good dad and we both cried, him just a tear. He didn’t have much water left, after all. And I left.
My oldest sister stayed, and she texted us all the next night, Sunday, November 22, to tell us that he had passed. They had put him to bed, mom went to sleep in the same room, and she woke up a few minutes later to silence, rather than his rasping breath. And like that, he was gone.
My brother and his kids, then my sister and her husband, and then my brother again came to be with my mom through the month of December. And now we are living our lives, back in communication, and without our dad. Without him here, at least. But it’s okay.
We’re making it. It’s a new beginning.