The family curse

We have a family curse not unfamiliar to millions of Americans: alcoholism. Especially for the males on both sides of my family, the drink has really challenged the men. My maternal uncles came through it using the 12-step program. My father quit at age 76, cold turkey, after a cascade of serious health problems delivered the final ultimatum: quit or die soon. One aunt by marriage somewhat recently had and survived a liver transplant—which is fantastic. But my brother, Brion, is on a different and heartbreaking journey. 

As I write this, I’m at home in the PNW while my mom is at Brion’s bedside in a San Diego hospital based (inpatient) hospice. Things are so fragile. Time is short. I’m still processing what I’ve witnessed in the last few months and the progression to this present-day byproduct of alcoholism: hepatorenal syndrome (HRS) at end-stage liver disease from alcohol-related cirrhosis. Our family members got a crash course in all the processes, medications, terminology, treatment possibilities and reality checks on end-of-life nuances. There is the emotional grief and frustration—sometimes anger and hopelessness—but always overarching gratitude and love for the time we get with our beloveds. 

Life is complicated. Alcoholism complicates things that much more. I’ve seen the way it creates a deep shame, the way it consumes people out of functional life/work, productivity, lets little problems turn into gigantic problems by not confronting them head on, how it corrodes communication and relationships. It’s a smack in my face. I love my brother. I so empathize with the turmoil I was pretty blind to for the last 20+ years. He hid his disease well after slipping from AA who knows how long ago. 

Brion has a son from a long-estranged relationship. That son is now a young man. Their relationship has been extremely arms-length and it saddens me. To even ask about my nephew over the years was such an obvious pain point that I stopped asking long ago for fear of driving my brother into a tailspin of depression. As Bri has let me into his health records this summer as an assigned medical POA, I’ve been able to advocate for him and speak with his doctors, both in San Diego and Hawaii. He has been very clear in NOT wanting anything to do with his estranged spouse; I honor his request. (I noticed in his medical chart his status was "single" and that was no accident.) He tried divorcing more than once and was met with challenges/refutes each time (in May he sent me doc screenshots of his last attempt and was crestfallen). This frustrated him to drink more. 

By around 2018 Brion was diagnosed with fatty liver. I remember when he called me at home to tell me about it. He had some labs done and the next thing he’s being summoned for scans at the ER. Well, guess what? When you have fatty liver, you’re not supposed to keep drinking alcohol. Apparently he did. He drank beer. A lot of it. At that same time, our father in San Diego was a slow but steady lifelong beer drinker. He had heart issues, even fainted back in 2008 and broke his jaw- requiring the full wire-up and smoothie diet. Later docs put him on blood thinners and he had a brain bleed (stroke), but he was lucky to catch it before it took his life or mobility away. 

In 2020, Dad’s esophagus ruptured! Another alcohol-related obstacle. I spent time rehabbing him at his home and even had the trauma of feeding him through an NG tube and then a liquid diet. When I called on Brion to fly out to spell me, I posted an update on FB that was met with an insensitive comment by his estranged spouse, that we were dramatizing the situation. It hurt deeply, as I sat in my Dad's house while he was so weak and immobile, not sure if he'd even come back from this often-fatal event! That careless comment ended my communication with that person.

While Dad committed then and there to quit drinking, Brion kept on going. Later he’d come back out to San Diego to paint Dad’s house and Dad would notice the recycling filling up with an inordinate amount of beer containers. He didn’t say anything to Brion, but in true Dad ninja form, he noticed. In the past decade, I heard rumblings from papa that B was asking for large sums of money, like he was a human ATM. Dad has a very disciplined style of financial management and he lives spartanly. The more Bri drank, I can only imagine the less driven he was to work. Hedonism is one thing, but the burden of long-term illness is another. As the years passed we were lucky to get an annual, single-line greeting on text at Christmas or a birthday. Holidays I think were also pain points for Brion.  

When my 26-year-old son was visiting Hawaii in the spring (2024) he sought out a lunch meetup with Brion. He introduced Brion to Sophie (Zach’s fiancee) and they took a couple photos. When Zach texted me the photos I about fell over. The gaunt face with mottled complexion and body bruises looked like a shell of my brother. I immediately recalled the 2018 phone convo about the liver and dreaded things had advanced. At first, Brion was defensive and said it was just a bad photo. But there were a couple I saw, none of them encouraging. By July, Brion began feeling ab pain, having sleep trouble, and itchy skin including an ankle infection. In pursuit of treating the infection, the local health clinic sent him for labs and an ab scan. He contacted me and instructed me to log in to read the findings—it was too complex for him. 

“Brion--it’s NOT good,” I told him. “You have cirrhosis and wildly abnormal bloodwork.” I also noticed in the visit summaries they tried to hospitalize him but he absconded AMA. This treatment-bail cycle happened so many times over the next two months that finally, NOW with a quickly declining kidney function (CKD4!), I got a call from his nephrologist saying his noncompliance resulted in a withdrawal of any lifesaving care in the state of Hawaii. Hospice, yes. Dialysis, no. Liver xplant list – no way. Brion made himself non grata. Even in the hospital in August, when Mom, baby brother Kris, and I visited him there, he was an unbearably sour patient to caregivers and to Mom-- I think this was his hepatic encephalopathy talking. It made me sad to see him treat people that way. He refused to let us help him outside the hospital, once discharged. Thankfully he allowed his sober friend Jake to assist in many errands through Aug and Sept. Jake continues to help Brion go through personal effects. 

When the medical rug-pull in Hawaii happened, he had to go split-second fast to extend his life, if he wanted. With just a bag and his wallet, he left Honolulu and headed to San Diego to be near family and for a last-ditch dialysis attempt. I'm just going to say here Bri was in NO CONDITION to be getting on a plane. Already he'd taken spills in the past month just moving too quickly, and barely had the strength to rise from a sitting position. Forget lowering himself to tie shoes and getting back up. The sarcopenia had long set in. The liver was a thief, collecting on debts from a life of drinking. And the ascites (uh-sigh-tees)--not at all pleasant.  

Even with wheelchair service arranged on either side of his flight, Bri managed to fall disembarking at San Diego--probably just getting up from his plane seat--and paramedics attended while Kris and my uncle Rich (who'd driven from his home in AZ) waited curbside and canvassed bag claim to whisk him to the ER. It was a -Weekend at Bernie's- situation. They were getting concerned each minute that passed when he didn't show up. Finally the staff brought him down. Once at UCSD, the team was rattled to receive B in such rough shape. "To say your brother is on thin ice right now is an understatement!" the hospitalist emphasized. 

Sadly his BP was/is dangerously low and all efforts to get his body functioning enough to handle the hemodynamics still couldn’t make it safe for B. It was clear after three valiant tries that he would not ever handle dialysis the conventional, outpatient way. Doctors tried to gently but clearly deliver Brion the unfortunate news. The disease was just too advanced and his body too weak. The staff at UCSD was STELLAR. Dr. Jason Dinh at The Queens Medical Center in Honolulu was above and beyond helpful. In San Diego, Brion’s attitude was much more humble and grateful. We had a beautiful week in the ICU, with many family visits and his good friend Jodi, a kindred spirit. Many tender, hilarious and heartbreaking moments I’ll always remember. 

Last week, Brion was moved one building over to hospice. Freshly dialyzed, the family enjoyed a clear-headed and hungry Brion. This week, the decline is quickly setting in. I came home one week ago and sobbed for three straight days. Weeping in tidal waves. Feeling overwhelmed by love, futility, sadness for all the lost years, gratitude for more time with Brion in 2024 than I’ve had in decades. Holding his hands. Kissing his warm cheeks and forehead. Exchanging I love you’s. Connecting. Kris, Mom and I had the ICU nurse bring a bunch of odds and ends one day to do mini mani/pedi work on the lad. Kris cranked up The Smiths, one of Brion’s favorite artists, and Brion sang along as we clipped, cleaned, brushed and lotioned him up. It was a tender and beautiful day because it was the first time Brion LET US really help him. He was so loving and appreciative.

He is sunsetting. Words are slurred and few. Sleepiness envelopes him. Mom, Dad and Kris are tag-teaming bedside visits. My cousin Carrie and aunt Judy are also visiting. I feel for everyone in this web. I feel for all families going through this journey. So much to process as we face the inevitable.