Hepatic Encephalopathy and long-term care: My experience
My mom, Jennie, is a solider in every sense of the word. As a young woman, she served in the military. After being honorably discharged to raise our family, she ran a tight ship at home. Today, she is up against the greatest battle in her life – fighting complications of liver disease to make it to the next day.
It's funny how life works. We go to sleep at night, thinking that in the morning life will be the same, just as it was the day before. For my family and me, a call in the middle of the night changed our way of living for the rest of our lives.
At the age of 61, my mom suffered a major hemorrhage due to a complication of her cirrhosis. In order to save my mom's life, we decided as a family to have a TIPS procedure performed, which redirected her blood to bypass her liver and flow through her body almost totally unfiltered. While it saved her life, the procedure left my mom with the debilitating brain disorder known as hepatic encephalopathy (HE). HE is a condition that occurs when toxins no longer filtered by the cirrhotic liver reach the brain, causing Alzheimer's disease-like symptoms, including severe confusion, forgetfulness and poor concentration.
The rates of liver disease and HE are growing. Liver disease affects six million people in the United States. Approximately 600,000 people develop cirrhosis and roughly half of these patients develop HE.
As I search for support within my friends and community, I find that those with parents and family members suffering from Alzheimer's have stories much like my own. Just like in Alzheimer's patients, my mom suffers from daily confusion, forgetfulness, and memory loss because of HE. I relate when I listen to stories of families with parents suffering from Alzheimer's disease as they share their memories of the way their parents used to be before the disease took hold. Remembering days when our parents had their independence and could make their own decisions, knowing so well the frustration and the anger that comes from the diseases take over our loved ones' brains and steals their thoughts and memories. At the end of the day, our hearts break as we look into the eyes of our loved ones and see the loss and confusion where hope once gleamed.
I never expected to have to care for my mom at this young age in her life. I had always thought that that time would come much later. But this illness does not know age, it does not care that my daughters lay in the emergency waiting room in the middle of the night with their pillows and blankets waiting to know if their grandma will be okay.
As a caregiver for my mom, and a single mother of three young daughters, I am torn. I wonder if my daughters will resent my mom or her illness every time plans change due to a hospital stay or ER visit. Do I allow my children to watch as my mom slowly loses her mind, or allow them to spend whatever time that we may have with her whether it is good or bad? My daughters and I have learned that patience is a virtue; I try to remind them (and myself) many times that it is not my mom's fault that she may ask the same question or tell the same stories over and over. And she, just as much as us, does not want to spend time at multiple doctors offices, or waiting for labs to be taken or waiting until the next procedure is finished.
One day I hope that one of my daughters will become a nurse or a doctor. They have gained so much knowledge from helping me care for my mom. We could not have come this far without the help of our family and the many nurses and doctors that we have come encounter with thru this difficult journey.My mom has been fortunate enough to be surrounded by professionals who care about their patients. At a point when my mom was coming out of a coma due to her high ammonia levels, she became aggressive and needed to be restrained. Her nurse took great care and was gentle with not only her, but our family as well, and talked to us and explained to us what was happening. It was a very scary and emotional time, and this nurse, to this day, will take time to see my mom when she is in the hospital. He could be working on a whole different floor but makes the time to stop in and check on her. I feel so lucky to be able to leave my mom in the care of great people.
In recent months, my mom's hepatic encephalopathy has progressed, and her health is deteriorating. Her care is ongoing – she sees her primary care provider every other month and her gastroenterologist every three months. In addition to these routine visits, she has an ultrasound twice a year and labs drawn every other month. My mom is not a candidate for a liver transplant and will one day lose her life to end-stage liver disease or the complications of hepatic encephalopathy. Every day that I have with her is a day that I am grateful for. Similar to those who suffer from Alzheimer's disease, we, too, are in a race against the clock. I will hold my mom's hand until the very end. I will choose not to remember her as the woman who could no longer recognize my face but the mighty soldier in the little frail body whose faith and will has never failed me.