Grieving My Grandfather's Death by Dementia in a COVID-19 World

Five years ago I went with my grandparents to a neurology appointment. My grandfather cognitively was on a decline. It wasn’t rapid but it was noticeable enough to warrant medical attention.

My grandma and I sat in a waiting room as I listened to music, not knowing what was happening with my grandfather on the other side of the wall. When the doctor brought us in to tell my grandmother of the results of his tests, I listened closely.

In front of us, the doctor asked my grandpa a question about his memory. Confidently, he lied. He lied as much as he could pretending that there were no problems with him until he couldn’t. He broke down in tears right in front of all of us. It was the first and last time I saw my grandfather cry — embarrassed because he knew he was declining. He still had time back then. Five years to be exact, but he knew. That was the first time it occurred to me that one day I wouldn’t have my grandfather with me.

My grandpa, the most consistently positive male figure in my life, passed Monday. November 23, 2020 in the early a.m.

The decline continued. Imagine sitting a shape toy in front of someone and telling them to put the square in the square spot, the rectangle in the rectangle spot and the circle in the circle spot. In the beginning, while it took him a moment to do so, he could still do it. Squares and squares, rectangles and rectangles. Then, over the years, it became harder. The squares and rectangles would look confusing and they wouldn’t fit quite right. After a few moments though, he’d be able to solve the puzzle.

Then I moved away. I would hear stories of the different things he would do. My life continued. I found new jobs, met new people all while knowing in the back of my mind that my grandpa was not OK, but what was I to do? He, along with all the other adults in my life, sacrificed so much to enable me to live my life away from home — to grow, live and love. Always worried, I continued on.

I don’t know when he started putting circles in the square shaped holes. I don’t know when it became so that you couldn’t convince him that he was wrong even though the circle block was sitting on top of the square shaped hole. I don’t know when he became a time traveler, traveling back in time to being a young boy on a farm in Alabama without ever leaving his living room chair, but it happened.

This past summer I went home for the first elongated period of time since I moved out and that’s when I saw the subtle Dr. Jekyll and Mr. Hyde transformation. Without telling me and without warning, he was no longer my grandpa. He was just Jeremiah Johnson, intent on finding his way home. At the risk of sounding overly poetic, he finally did.

He was a prisoner to his memories. Unable to disengage with the narratives and roles his brain wanted him to play. He knew when he would come to what had happened, I believe. He knew that everything wasn’t OK. He would look at me, my brother and my cousin knowing that he just went to far off places we could never visit. He knew at some point it would happen again.

His head was a prison and in his death he finally found freedom.

The last time I wrote about death and passing it was two months ago about Roxey, the light of my life, dying at age 14. Before this year I had never experienced death in a personal way. People in my bloodline died before now. People I grew up seeing, but no one close enough that it emotionally impacted me would pass. This year I learned one of the scariest and hardest lessons of my life:

Sometimes they don’t get better.

The last time I saw Jeremiah Johnson was this summer in July. I told him I was going to help him find his way home, knowing that home was his bedroom and not the farmland from his childhood.

The last time I saw my grandpa was only a month later in August. He was so excited to see me, but I had to stay distanced because of COVID-19 and I had a friend I had to get back home. Seeing him so excited that arthritis be damned, he jumped up to try to catch me before I left is truly who my grandfather was — selfless, determined and passionate about those he loved. He was an example of true love, having been with the same woman since he was a boy and giving her so much in a time where Black people weren’t allowed to have anything. He escaped the country and ran up north. He built a life for himself and his two daughters that would impact the life their children had and have.

Whether he remembered me in those final moments earlier this week, the last time I saw him he knew who I was — an extension of his blood and soul and the love he shared with my grandmother by proxy.

COVID-19 kept me away. I know the risks that come with living in a hot spot, even if I quarantine. I couldn’t be the one to be asymptomatic and go home, dooming my grandparents to a fate that so many other human beings have had to suffer through. I knew I was going to try to make it home for Christmas. I thought that was when I would see him again. It was when I’d fall asleep on a western with him sitting next to me again, and when I’d watch him go to the kitchen and concoct a meal truly too grotesque to watch him create but too confused to look away. I was responsible and stayed away for his safety, and because of that he died due to natural causes and not hooked on a ventilator surrounded by tired and overly worked first line workers who are fighting the battles of their lives for us.

I think about whether I wish I  said “Screw the stay-at-home order!” or “I don’t care, I’m going home,” but I was right to stay away. I was responsible. He got to live out the rest of his days that he was supposed to because I was responsible. Everyone dies at the end of the day, but I did not contribute to the COVID-19 body count.

If COVID-19 wasn’t around, then yes. I would like to think I would have found ways to be home more. I like to think I would have visited maybe two or three more times, even before Roxey passed away. Busy with work, I would have found time to see my family. Those are memories and times that were stolen from me by this virus, our current government and all of the people who won’t stay home and stay put.

As I write this I am in the process of quarantining myself away so I can go home safely and hug my grandmother so tightly that her body leaves imprints on mine. I’m quarantining myself so I can cry in my mother’s lap and then laugh afterwards with espresso martinis in hand. I am suffering and grieving alone through the hardest year of my life where I have lost so much so I can go home responsibly.

I can’t help but be angry and jaded at everyone who isn’t doing the right things. I’m angry at people who keep going to theme parks for their “mental health” not giving a damn about the people who can’t make it out of bed because of their physical health. I’m angry at people who throw events in the middle of a pandemic as if their birthday parties, weddings and other loud celebrations couldn’t wait one year. I’m angry at the people who insist on traveling to new places by plane. I’m angry at everyone who is deciding to self govern in a way that could put others at risk while I feel forced to stay home because of them and their utter negligence.

While COVID-19 did not cause my grandfather’s death, it is complicating the period of time post-death where you flock to your loved ones — the only people who truly know the pain you’re experiencing. Instead I sit alone in my apartment, with an injured dog trying to nurse her back to health, afraid out of my mind because of what I learned this year — sometimes they don’t get better. I’m cautious because I love my grandfather. Even with the lost time, I know I did the right thing no matter how much it hurts. I would ask everyone else to do the same thing. Stay put. Stay home. Be careful, but I know they won’t. I know they will continue to experience their lives as if COVID-19 is not real or as if they cannot be impacted by the simplest of infected cough drops from someone in a CVS.

I don’t know how to end this. I don’t know what to say. Nothing I say will bring him back, I suppose I do not want him to come back, though. Not if it was under the same quality of life he had.

I know better. I know he’s laughing on the other side. I know he’s finally with his mother again and his sister and brothers. He’s able to fish again without his arthritis mocking him. He can laugh and move his body free from the chains that come with growing older. He’s with the rest of my ancestors who will help him adjust and take care of him, and us, fondly.

To love someone is to acknowledge what is best for them, and life was no longer the best option for him.

When I was a little girl I used to tell everyone I knew I had the best grandpa. I would say he was the strongest, smartest grandpa in the world who could fix and build anything he thought of.

I wasn’t lying.

I’ll miss you grandpa. Deeply and consumingly. I will miss you so much.