Homecoming

 

On May 27, 1970, I brought Martin home for the very first time. As his father drove, I carried my precious bundle in my arms, excited and happy – and a little nervous – to begin my career as his mom.

On January 21, 2021, I brought Martin home for the very last time. As his baby brother drove, I carried my precious boy’s ashes in my lap, sad and tearful, missing him, but still his mom, still loving him, knowing that there’s little left for me to do.

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December 30-31, 2020

After Martin’s bad fall on December 30th, I was afraid for him to be by himself, afraid that he’d call for me in the night and I wouldn’t hear him. I slept directly across the hall in the family room so I could get to him quickly if he needed me. He was on full time oxygen at this point, but he was prone to take it off if it became bothersome. I slept poorly for about 4 hours. When I got up, he was groaning with every exhale, so I called hospice for direction. We increased his pain medication, and I called Ben to let him know that I needed him there. He arrived, followed soon after by Briana and the kids.

Martin on New Year’s Eve, drawn by his brother, Ben.

We also called Jason to let him know that Martin was not going to be with us much longer. Soon after, Jason emailed his flight itinerary to me, and I was relieved and thankful that he’d join us at Marty’s bedside on New Year’s Day. I prayed he wouldn’t be too late.

Briana and the children spent the day cleaning, doing laundry, and preparing meals for us. It was such a comfort to have all of them there, to know that I could stay by Martin’s side and not worry if something was needed – that loving, willing hands would take care of it all.

After dinner, Briana and the kids left to prepare for a New Year’s Eve observance with close friends, and a couple of hours later, I sent Ben on his way to be with his wife and children as we all said goodbye to 2020. I had a strong feeling that Martin wouldn’t leave me until the New Year. Ever since he had joined the Navy in 1989, he had called me from wherever he was in the world – both at midnight in his time zone and again at midnight in mine – to welcome the New Year. He would hold on, I was certain. I tuned his television to CNN and, as the ball dropped in Times Square, I welcomed the East Coast New Year with my boy, missing his ability to share it with me.

Wanting to be closer, but fearful that he’d fall on me if he tried to get up, I made a bed of sofa cushions and slept on the floor outside his room. I was close enough to respond immediately if he needed me, but at a safe enough distance that he wouldn’t fall on me if he tried to get out of bed.By that time, it was a new year on the West Coast as well, and I was thankful to know he had survived the most awful year I’ve ever known.

January 1, 2021

I knew upon waking that he wasn’t going to last much longer. Jason’s flight from Illinois was delayed due to weather, and all I could do was pray that he’d arrive in time. Ben and his family arrived later that morning, and we once again took up our vigil, interrupted only by text updates on Jason’s travel progress.

The hospice nurse arrived in the afternoon to assess him. When we discovered that he hadn’t voided his bladder since the previous day, she began to probe his abdomen. With a heartbreaking moan of pain, Martin rose to almost a sitting position and a few minutes later, we discovered that he had emptied his bladder. Although it was obvious it hurt him when the nurse probed, he seemed to relax more in his sleep. Briana, who had been cleaning, cooking, and making sure we all knew when food was ready, left those duties to join the nurse and me to help with personal care for him. He seemed much more comfortable, though his breathing was still labored despite the oxygen. Via telephone, hospice continued to coach me on administering his pain medication and clearing his mouth of secretions.

Finally, Jason’s flight arrived and Ben left to pick him up. He stopped at Ben’s to shower prior to coming to the house, in case he had any COVID contamination from his flight. I was so thankful to have all three of my boys together, especially knowing that it was for the last time.

Jason had brought his old Navy uniform, since it was our plan to bathe and dress Martin following his death and before the funeral home arrived. I appreciated Jason’s thoughtfulness; he knew what it would mean to his brother to once again, and for the final time, wear the uniform of the Navy that he had loved.

Not wanting to sleep on the floor again, but wanting to be close to him, I moved a small recliner into his room – possibly the most uncomfortable recliner I’ve ever tried to sleep in! Nevertheless, I managed to sleep for a couple of hours, holding his hand throughout the night.

January 2, 2021

I can’t really say I woke up because I hadn’t really slept, but the morning found Martin’s condition unchanged. I must have made coffee at some point, and I think I took a shower and changed my clothes. I know I’d been wearing the same clothes for a couple of days.

The house felt full of love with Jason, Ben, Briana, Addison, and Drew there to wait and watch with me. We had another visit from the hospice nurse to evaluate his condition, reaffirm that I was giving his meds properly, and to tell us what would likely happen as he approached death.

I’m sure we ate, drank, talked, and prayed, but so much is a blur to me. Late in the afternoon, I told Jason and Ben that we needed to make a list of who would need to be called – his dad and other family members and friends, and who would call each one. We decided to sit at his bedside as we made our lists, and we pulled our chairs to his bedside – Jason on one side of me and Ben on the other. As we talked and planned, Martin suddenly opened his eyes – the first time in two days – and looked at each of us in turn. It was obvious that he saw us, that he knew we were there, that he knew he was loved. He then closed his eyes and took four more breaths before going into eternity and becoming a beloved memory.

After calling hospice, I called my priest who said she would come right away. We made our other calls, and by the time Mother Esme arrived to anoint him and administer last rites, we had bathed and dressed Martin. We took turns sitting with him until the funeral home arrived and we could begin to wrap our minds around the hole that he left in our lives.

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This has been painful to write, but necessary for me as I process a month – and the rest of my life – without my oldest child. I’m grateful to all of you who have traveled this journey through my writing, and appreciate your expressions of love and kindness.

When a loved one dies, we often make the mistake of whitewashing their lives and elevating them to some kind of sainthood. Martin was no saint; there’s not a person in this family who would ever attempt to paint him as one, nor would he want to be remembered that way. He was a human being. He made mistakes. He fought and argued with me, his dad, his brothers – but we all love him and we know he loved us. We remember him as he was. The most important thing is that he be remembered. He leaves behind no children, so it’s up to us who knew him in life to carry his memory forward, to tell people that Martin Jacinto Cerezo lived, that once he touched our lives and our hearts.

 

Hepatic encephalopathy – a cautionary tale

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.