Lauren Johnson’s very personal story continues. Here she opens up about acting as her grandmother’s caregiver, and shares the emotional roller coaster ride that role carried her on.
By the time I arrived they had gotten her pain under control and she was sleeping soundly for the first time in days. I placed my power of attorney on file at the hospital and the doctor came in to speak to us. Mimi didn’t hear the conversation. It was just her sister and me there. The news came in doses. They had done a CT scan when she arrived; it showed cancer in her liver, lungs and kidneys. They were going to send the pulmonologist in to talk to us about what would come next. He would assess her, decide which way would be least invasive to do a biopsy to find out what kind of cancer it was, and go from there. I spent most of that day there waiting, then finally went home. The nurse found out the pulmonologist would be there in the morning and I made arrangements to be there.
When I returned to the hospital the next morning, Mimi was awake. Her words were a little slurred, but she seemed to be becoming more and more coherent. I did my best to help make her comfortable, but it was often short lived. I brushed her dentures, combed her hair and helped her get positioned in the bed. I got her some coffee with half and half (the only way she’ll drink it) and as she began to liven up some, I tried to prepare her for what the doctor was going to say. Although I had her power of attorney, I had no intention of steam rolling her out of the process, especially if she seemed to have the mental capacity to make decisions. I gave the news in small doses. Her responses varied from denial to avoidance. When the doctor came in, looked her in the eyes and said, “You have cancer”, her response was a quiet “No I don’t…but go ahead”. Then the next round of news came.
The doctor told her that there are two reasons people do biopsies: when you have a need or desire to know what kind of cancer it is, and to figure out what course of treatment is recommended based on the results. Then he said that in her case, the second reason was off the table. It didn’t matter what kind of cancer it was, because he wouldn’t recommend treatment. She likely wouldn’t be able to endure it and it would only make her worse. He asked her if she wanted to know what kind of cancer she had. I felt the weight of the universe come over us. In a cloud, she suddenly looked more confused than I have ever seen her. She muttered simply, “Baby, help me.” Based on the information he had given us, I didn’t see any need to put her through unnecessary stress or discomfort. But I still wanted to be diligent. I asked him hopefully, “but, what if it’s the treatable kind of cancer, couldn’t it be that?” The look in his eyes said it all. He pulled me to the computer and showed me the scans. The cancer had advanced rapidly and wrapped around her bronchial tube, restricting her air intake. I didn’t want to ask him to play God, but I wanted to make the best use of our time. The prognosis gave her three weeks to three months.
I now had to relay that information to all the family members to discuss what our next steps would be. I hoped anyone would help with the upcoming hardships. Throughout that day I tried several times to have a conversation with Mimi and include her in the decision making process. It appeared our options were few. The hospital wouldn’t keep her forever and we had to develop a plan. Every time I started to talk about it, she would come back with a joke or make some wise crack. When I called her on it, she said she knew it was serious, but she didn’t want to think about it. She told me she didn’t want to cry. All she really wanted was to go home and stay in the house that she and Papaw had made together, until she went to be with him.
In order for that to happen, someone would have to be with her around the clock. I hoped that, in light of this turn of events, someone would volunteer to make her a priority for the short time she had left. But I completely recognized the impracticality of that happening, and was left feeling frustrated. My heart ached every time she repeated her one desire. I left the hospital that day thinking we could take advantage of a skilled nursing facility for the few weeks, to help her build up her strength. Maybe Medicare would cover the cost, just until we figured out the next step. All along the way I kept trying to figure out a solution that would give her both what she wanted and what she needed. I just couldn’t come up with it. I went home drained. I fell asleep with these thoughts permeating my dreams. I woke up at 4 am and turned to my husband (who I hadn’t had more than a few conversations with in days), and said, “I think I’m going to bring Mimi home to live with us.” Without hesitation he said okay. As I unraveled the events of the last few days to him he suggested, “Why don’t you just go stay with her?” Well, of course I had considered that – but I have a job, a husband and three children! We weren’t talking about a few miles away. But he gave me the encouragement and support I needed, and we worked out the details.
I told Mimi I’d need a few days to get things prepared. While Mimi was clearly happy to hear the news, a few days wouldn’t be fast enough for her. She made it a point to let everyone know she wanted to be home! Once again I found myself trying to figure out how I could rearrange my life to get her home sooner. I didn’t know then, that this would be the last day we could talk to each other. I saw the hardships ahead. I saw she was constantly crying in pain and discomfort. By the end of the day she only spoke in brief sentences, “I can’t breathe. I hurt. Help me.” I would ask her how I could help and she would muffle a cry of, “I don’t know”. I began to have bouts of anxiety as I would wonder if I really knew what I had just signed on for. I imagined being away from home for weeks or months. I hoped that it wouldn’t be that long, and then felt awful for what that meant.
The next day hospice got all the papers in order. I was told there was a possibility that I could have a nurse with me for the first night. We were to set things up at the house and the hospital would bring Mimi to us. It pretty much happened that way. The nurse came out to meet us too, which I later realized was a sign that had progressed more than I knew. When the ambulance arrived with Mimi, she was restless and in pain, but not coherent beyond that. It took a while to stabilize her with pain medication. A few friends and family members dropped in for a brief time. I stayed up talking to the first nurse until another one came at 10pm. I fell asleep for a few hours and woke up at 4am. Both nurses had prepared me that Mimi probably wasn’t going to make it through the night. They told me her blood pressure had steadily dropped from 100, to 90, and then 75. I knew I’d better not go back to sleep. I sat in the chair next to her. I held her hand. I spoke to her a few times. I told her that her children would be there in a few hours, if she could hold on that long. I told her if she couldn’t, Papaw and Jesus were waiting for her. She would be loved no matter where she was. And we sat there.
She took her last breath around 7:30 that morning. I waited a minute or two before I went to the back of the house and began to cry. I had been calm up to then. Her son from Oklahoma was five minutes away when she died. I stayed to see my aunt arrive later in the day and watch them take my grandmother out. Then finally, exhausted, I went home.