So much has been written about the opioid epidemic, but so little seems to be out there about what living with true chronic pain is like. My husband, Jay, lived and died in incredible pain at the age of 58. As his wife, I lived that journey with him.
Jay is no longer here to tell his story, but I want the world to see what I saw. I want you to know how he went from working 60 hours a week doing hard physical labor, until his pain grew worse and he could not even get out of a chair on his own.
I want you to know the deterioration Jay went through over the last ten years. I want you to know what a good day and a bad day is like when you live with chronic pain. I want you to know exactly what happened when the doctor decreased his pain medication. And I want you to know how my husband finally made the decision to commit suicide.
I want people to understand that when chronic pain runs your life, eventually you just want the pain to stop.
First a bit of history. I met Jay in 2005, when we both stopped drinking. Two years later, Jay began to lose feeling in his legs and started having falls, as a result of compressed nerves in his spine. The pain was so bad Jay had to stop working and go on disability, which started his depressive episodes.
Jay had a series of lower back and neck fusion surgeries. This was when he was first prescribed painkillers, antidepressants and anti-anxiety medications. From 2008 to 2011, Jay tried various treatments to control the pain that lingered even after a third back surgery. These included steroid shots, nerve blocks and a spinal cord stimulator. Ultimately he had a drug pump implanted that delivered morphine, in addition to the pain pills he was being prescribed.
In 2012, Jay was diagnosed with trauma induced dementia. I believe that diagnosis was right, based on his symptoms, but not all of the doctors agreed. Some believed the confusion was due to high doses of morphine and/or his sleep apnea.
By 2016, Jay’s confusion and memory issues were increasing. He was on a steady dose of 120mg morphine daily, in addition to the medication he was receiving from his pain pump.
Jay’s depression seemed to come and go, depending on the day and his pain levels. He was weaned down on his Xanax to 2mg a day to help him sleep. He was aware of the risks of combining Xanax and morphine.
Let me tell you what a good day was like before they changed his medications. I worked a full time job from 2 pm to 10 pm five days a week. I would get home, and Jay would have my coffee ready for me at night. We would stay up and watch TV until 2 or so. When it was time for sleep, I went to bed and he slept in his recliner.
We started sleeping apart after his first surgery in 2007. He was more comfortable sitting up in the chair, but could never sleep more than three hours at a time. He knew sleeping in bed would just keep me awake.
A good day always meant it was not cold or raining. On a good morning, he would be up first and get coffee started. He would take our two miniature pinchers outside in the yard on their leash for potty time.
We usually had at least one appointment a week, but if not we could have a nice quiet morning. That meant coffee in front of the TV. After a couple of hours of that, he might switch over to playing his computer games, but he was never far from his chair.
A typical adventure for us would involve going to Walmart. Jay was not able to walk through the store, but he hated using the handicapped carts. I could always see a look on his face when he had to do it. After going to the store, we might have lunch or an early dinner at Steak n Shake or Cracker Barrel. It always needed to be some place familiar and comfortable for him. More than once we sat, ordered and then took our food home because he was in too much pain.
In the summer we might walk the dogs after dinner. Just a quick two block walk, but a lot of times he would have to stop halfway and go back home. A couple of times I had to go get the car and pick him up because his legs just would not support him anymore.
A bad day was awful for me to watch, and absolutely horrible for Jay to live. It meant no real sleep, just catnaps in the chair whenever he could. He always made coffee for us, but on a bad day he would forget to add coffee to the coffee maker and we would just have hot water. The pain was so much he was just distracted.
On many bad days, I would look over and see tears just running down his face because he was in so much pain. It also made Jay’s depression worse. We spent many cold winter nights talking about how much pain would be too much and would make life not worth living. It is the most horrible feeling in this whole world to hear the person you love most talk about ending their life.
In January, 2017 Jay’s pain clinic decided they could no longer prescribe the high doses of morphine he was on. In addition, they were not going to continue seeing him if he decided to stay on Xanax. The Xanax was prescribed by another doctor, but they did not care.
I begged the pain doctor — yes, literally begged — for some other option. The doctor said that if Jay continued the Xanax he would no longer see him. He would not give another option for medications, and at one point even said that most of his patients with pain were “making it up.”
The last thing the doctor said to us will stick with me forever. He said, “My patient’s quality of life is not worth losing my practice over.”
When we left that day, we were barely in the car and I knew what Jay was going to say to me. I will never forget how sad his voice was when he told me this was it for him. He was not going to continue to live like this.
Through the month of February, as Jay’s medication was decreased, we spent time doing things we did not normally do. We went out on Valentine’s Day, he bought me the first jewelry he had bought since my engagement ring, and we went out to a fancy restaurant for dinner. Jay tried to cram in as many good memories as he could into that last month, but I knew it was costing him.
Jay’s next doctor’s appointment was scheduled for March 2, and we knew they were going to decrease his medications again. The night before, he woke me up to tell me it was time. I knew what that meant, but I tried to be strong for his sake. We talked all night long about what it meant, and how it should be. It was the saddest, strangest, longest night of my life.
Jay knew he did not have enough pills to kill himself. He also knew that if he were to try and purchase a gun, they would not sell it to him. It would have been almost obvious what he was going to use it for.
In the end, I bought the gun that Jay used — and yes, we talked about the ramifications of that action. We went to the park where we had renewed our vows in 2015. We talked in the car for a while, and then we sat in the same place we had cut our wedding cake. I was holding his hand when he pulled the trigger. .
Through the shock and horror, my immediate feeling was one of relief for Jay. To know that he was finally out of pain was a weight lifted off both of us.
Because I purchased the gun that Jay used to end his life, I was charged under our state’s assisted suicide law. This charge was later reduced to reckless endangerment, and I am currently on probation. People close to me want me to be quiet about my role in Jay’s death, and I was at first. But I cannot continue that way.
I know Jay wanted me to put his story out there. I know he wanted people to know what it was like to live with the pain he lived with daily. When the doctor took away Jay’s medications, they took away his quality of life. That was what led to his decision. Jay fought hard to live with his pain for a long time, but in the end fighting just was not enough.