I don’t often specifically request that people share something I’ve written, but I’m asking it this time. It’s of specific interest if you have liver disease (cirrhosis or cancer) or if you know someone who has liver disease; but it’s also important because you might not know that you know someone with liver disease.
This information is being shared because of the recent death of my oldest son, and the bereavement of our family. It’s being shared out of the pain that I feel due to not knowing how cirrhosis was affecting Martin, and, by extension, his relationships with family, friends, and employers.
After Martin’s most recent diagnosis of liver cancer in late August, and his prognosis of six months or less, I began noticing symptoms of memory loss, word-finding problems, and other indications that more was going on with him than just physical symptoms. So, being me, I began doing research.
I discovered that liver cancer patients can develop hepatic encephalopathy (HE), or a decline in brain function. A simplistic explanation is that the liver’s job is to remove toxins from your blood, and an impaired liver cannot do this efficiently – or at all. Those toxins remain in the bloodstream, and begin to affect your brain, resulting in encephalopathy.
As the cancer advanced, Martin’s symptoms became more and more noticeable, and were a source of great frustration to him. Eventually he was using words that made no sense, and some of the signs were very similar to what I had seen in Jim as his dementia revealed itself. (One specific event was Martin’s attempt to tell me something about 7-11, which he called “Seven vanilla.”)
Martin also began to develop a noticeable tremor in his hands, which I attributed to a familial condition called “benign essential tremor.” It may have been BET, but, as I’ve since learned, it’s also a symptom of HE. His previously better-than-perfect eyesight (20/15 in one eye, 20/10 in the other) began to decline, and I often teased him about his “ageing eyes.” In retrospect, the rate of impairment was much greater than it would have been under ordinary circumstances.
Martin died on January 2nd, following a rapid decline – he’d been up and participated in a small family Christmas just eight days earlier.
When I shared my new information with his brothers, Jason and Ben, they both told me that they had noticed a difference in Martin’s acuity and behavior over the past ten or more years. Since they saw him infrequently, they were in a better place than I to notice what, to me, was just Martin being difficult and argumentative. We’d had a contentious relationship for years, and, although our arguments had become more frequent, I attributed it to the fact of two strong-willed adults sharing living space.
This past Sunday, just four weeks after his death, Ben and I discovered that, when Martin changed the oil in my car last summer, he had installed the oil filter incorrectly, which was resulting in an oil leak. This may not sound like a big deal, but Martin had made almost every oil change in my car since he was in his 20s, as well as the oil in numerous other cars. He knew how to do it, and he didn’t make mistakes like this. Ben also recalled a previous problem Martin had with an oil filter, months before his cancer diagnosis.
Once again, I began research. I learned that HE (hepatic encephalopathy) was a fairly common occurrence – not just with liver cancer, but also with cirrhosis, a disease with which Martin had been diagnosed in 2000.
Suddenly, so many things began to make sense. His increased irritability, his chronic fatigue, his difficulty to understand written instructions or remember things we’d discussed, his inability to make repairs on his car that had been so easy for him in years past; even his deep fatigue, which had cost him a job he had loved in 2019.
My first reaction was anger: anger that none of his doctors had warned us about HE and what symptoms to look for, or what treatments might provide some relief. Then I felt deep sorrow and guilt – which I’m still working through – for my impatience with his forgetfulness, his failure to complete what I thought were simple tasks, his clumsiness. I knew how to react to someone with declining mental capacity from my time with Jim during his illness. I could have been kinder, less impatient, less demanding. Our last few years together could have been more loving, less argumentative, had I known I was asking more of him than he could give. It breaks my heart.
I will say that I gave my all to him during his final four months of life. We were fully reconciled, and I was happy to be able to care for him, to meet his needs, to pamper him. I just wish I had known much sooner how much he was struggling.
And so I have laid my heart bare, and it’s my sincere hope and prayer that someone’s eyes will be opened. That some person out there in FacebookWorld will gain insight into a friend’s or family member’s struggles and respond with compassion and understanding instead of impatience and anger.
If my words can relieve even one person’s anguish, it will be worth the tears that I’ve shed as I’ve re-lived my greatest pain. So please share.