First, let me preface this with I am writing this to express my feelings for my kids and the hope and desire they NEVER have to go through this as a bystander, caregiver or themselves.
I was looking at a copy of a magazine I get in the mail. The Saturday Evening Post. It comes every other month. I get six a year. For some odd reason I have loved this publication since I was a kid and could read the articles and jokes at my Nanny and Paw-Paw’s house. That is when it came much more regularly. Some of the articles my oldest child Abby has read before. Some she has liked while others, nope. Never.
The article today was only one page. Can you call one page an article? Is it a snippet? Journalism? Does it matter? It got his point across. Vividly, yet without too much detail.
I wasn’t sure looking at the picture and small blurb what it was about. As I began to read it, I had flashbacks. Horrible, terrible flashbacks. The article began with the man talking about the young bride in Oregon who took her life a while back because she was terminally ill. Oregon has a law that allows you to die, on your terms, should you choose it. Essentially some say allowing a person to play God.
When the story came out last year, I remember how the media sensationalized it. Interviewing her, her husband, friends, family, etc. Her husband and her had moved there specifically so that she could do this. She found out after being married a while that she was sick. Terminally sick. Made a bucket list of sorts, did some of it and then finally chose a date to take her life.
The man’s article in the Post relayed how his wife died from cancer and what that experience was like for him. How the disease ate the lady up and that the last year of her life wasn’t so bad. However, that the last week was. How hospice really doesn’t tell you how it truly is going to be. How they try to convince you that the moaning of the person dying is worse for those of us left after they die than it really is for the patient. How things you see as a caregiver for a terminally ill patient sucks. They don’t tell you that either. How you feel hollow and empty in your soul when your loved one dies. How you are pissed off at the whole damn world because the world is the reason they are gone. The doctors, the illness, the preachers, family, etc. You look to everyone to blame for their death. Then you look at yourself. You feel guilty. You believe you should have and could have helped to make it better for them. In some way. Yet, when they die, you realize that you didn’t and couldn’t do anything. That death was inevitable as shitty as it is. That all of what you did was for naught. That you failed. No matter of discussion can change how you feel. EVER.
The flashbacks I had were to some of the same things that he had seen and witnessed. The difference lies in that he saw it in his spouse that he’d had for many years whereas mine was with my mom. He was a grown man with two kids and a grandchild. It was me. And my dogs. At age 14.
April 30, 1989 started like any other day. I got up, came downstairs and ate breakfast. It was a spring Sunday and my mom and I were going to be headed to my aunt’s farm. It was my mom’s sister and we were going later that day for a pig pickin. My uncle loved to cook a pig. And man, he was great at it. He cooked it in a pit in the ground. Not on a smoker or in a barrel cooker.
Mom couldn’t drive because of all the drugs for pain and nausea from cancer. Hodgkin’s Disease. First diagnosed 10 years earlier. That was after being wrongly diagnosed with the flu for two months. She had over a dozen different prescriptions at home. 3 or so nausea pills, two blood thinners, at least two pain meds, antibiotics to stem infections, and fluid pills. Now, on bout #5 of the disease, she had seen it all. Nausea, vomiting, bed sores, hair loss twice, and pain to shake a person to their core. Since she couldn’t drive, my aunt was going to drive up from the country and get us and take us down. My Nanny and Paw-Paw, cousins and their kids and spouses were to be there too. Something to lift spirits and get my mom out of the house.
It was just me and my mom. My father had left several months before. Choosing to leave mom in the middle of her latest bout with this disease. My oldest brother lived in another town, sister lived at home occasionally and sporadically and the other brother was just out of the US Navy and lived in the eastern part of NC at the time. So, mom was shuffled back and forth to chemo and to the oncologist by her folks and her sister. With my father gone, there was me left to do things.
I learned how to cook, clean, change sheets, wipe up vomit, hold a pan for her to vomit in, dispense medications, write a medical journal and prescription log. I brushed hair that fell out. I helped her into and out of the bath when needed. And if I ever needed to, I could have driven that Buick Regal. I missed over 80 days of school in 8th grade. Many days to care for her. Somebody had to do it.
After breakfast that Sunday, I cleaned up myself and the kitchen. Made sweet tea, and a little bit of food for her. She lived on tea and often things such as saltines, rice cakes with peanut butter, rice and other pretty bland stuff. At this point she had quit smoking. She tried to eat it. Another thing chemotherapy does is can give you mouth ulcers and thrush. So, eating was hard for her. The mouth ulcers and vomit really are a turn off to eating.
I helped her to the bathroom. She was going to get dressed and ready as my aunt would be here in an hour. For a cancer patient, it can take a while to get ready. Beyond cleaning one’s self up, there is the ordeal of getting dressed, and for her, adjusting her wig. A cancer patient is tired. Worn out. No energy.
I went back to the den because she needed her glasses. I heard a loud thud. Immediately I ran back into the kitchen to get into the bathroom. She was on the floor. Bleeding. Everywhere. The cause was from hitting her mouth as she fell down. Presumably from feeling light-headed and faint. She knocked out three teeth. She was incoherent.
Right beside the bathroom is the kitchen and it had the phone. I immediately called my Nanny and Paw-Paw who lived 15 minutes across town. No answer. That’s right, it was Sunday. They were at church before the lunch. I called my aunt. She told me to stay there, but to call an ambulance. I called. I stayed right beside her.
They came and took her away. My aunt arrived, from 30 minutes away, in about 20 minutes. She arrived as the paramedics were putting mom onto the stretcher. She was wheeled out and into the ambulance and taken away to Moses Cone Hospital. My aunt loaded me up in her car and away we went. When we got to the hospital we waited for my Nanny and Paw-Paw to come and get me. I went home with them while my aunt stayed there.
Later that day after mom had been put into a room and admitted, I went back. She was tired, heavily sedated and out of it. I got home late that night. My aunt had called my sister who came home. So, on Monday I got up and went to school. When I got home that day, my middle brother was there. So was my sister. The three of us headed up to the hospital where we were met by our oldest brother.
We went in and saw mom. She wasn’t awake. The oncologist came in and said he needed to speak with us all. So, we walked on down to the conference room by the nurses station. Dr. Karb sat down at the head of the table. I sat beside him and the others filled in. He was brief and short. Mom had suffered a stroke on Sunday night sometime late that evening after I had gone home. She couldn’t speak. As well, he said she would be lucky, very lucky indeed to live until the weekend. My father wasn’t there as they were separated and the Dr. had been informed that the decisions were left up to my mom’s folks and us if they weren’t available.
Here lying in the hospital I had been in so many times in my life for her, for her visits and testing, was my mom. Dying. It was the end. In November of 1988 Dr. Karb had told her that he had done all he could and she had 6 months to live. And here we were. Six months later.
We walked back down to the room. Each talking to her to some extent in turn. I went back home that night. Shattered. Numb. I stayed home on Tuesday. Wednesday came and I was home again. I had already missed so many days that year. They called my house. Well, I was there and explained to them what was going on. They asked where an adult was. I put them in touch with my Paw-Paw. They didn’t call again.
On Thursday, my youth pastor came and got me. It wasn’t planned. We had lunch and then he took me out to the driving range to hit balls to take my mind off what was going on. Dinner was in the cafeteria of the hospital. In the basement. I ate more meals there in my life than I care to remember.
After dinner I came back upstairs. My oldest brother was there with his wife. My sister dropped by after teaching school that day and went home. My Nanny, myself, my middle brother and my aunt were there. My father had come earlier that day to ask for forgiveness. To speak alone to her. To repent. How that works with someone who is incoherent and dying I don’t know.
It was Thursday night and it started to rain. My aunt disappeared to the coffee shop. My Nanny, middle brother and I were there. Mom started to hum. My brother told me to go to the nurses station as fast as I could, tell them it was a code blue and to get back. I did so. They didn’t announce it. They didn’t bring a cart. There wasn’t a team. There was a sweet little older black nurse. I sat there with my brother and we watched 4 last breaths. The nurse unplugged the oxygen and monitors.
Mom was gone. Her pain was gone. It was over for her. Leaving on Sunday night earlier that week I neglected to tell her I loved her. I relayed that to my youth minister that day. I told him I was sure I was going back to the hospital on Monday to see her and I guess I figured I would say it then. Being comatose and having had a stroke, she didn’t and couldn’t understand anything. So, she died. Me not being able to tell her that.
Talk about a void. A hollow, empty shell. That was me. I feel guilt for that until this very day. I feel guilt for all of it. Pain is a strange thing. It can be locked in the back of your brain for a long time. Then you read something or see something like that article I did and BAM. It all comes back.
About a year ago I sent to the state records office for her death certificate. You always hear that people die from something other than the cancer itself. Her primary cause was toxicity from the chemo drugs. Poison that killed her that was supposed to save her. Secondary was the cancer.
We buried her on Sunday, a week before Mother’s Day. That was one of the shittiest days. I hope and pray my kids don’t have to live through this ordeal. An ordeal like the man who wrote the article and I lived through. I hope that when I go, I go fast. Or overnight or something like that.
Living through this shit helped me to realize a lot of things. But it also scarred me. It is still hurtful today and for the last couple of years I had dealt with it good. The last year has been great since we moved away from NC and all the thoughts that came with it.
Reading the article today I had things come back that I had not thought about in 20 years or so. Vivid memories that showed up. I pray that my kids won’t have any of that same shit.
I LOVE MY WIFE AND I LOVE MY KIDS!!!