In early 2007, just after Mom received the diagnosis that she had end-stage liver disease and would need a transplant, she began working with physical and occupational therapists to improve her strength. But, she would only do the work while she was with the therapists - either in their offices or at our home. Eventually, they stopped seeing her because Mom wasn't making any progress. (Seems like mom needed more visits, not less; but that's insurance for you.) This pained me a great deal. I wanted more than anything for her to get better. I felt like she'd given up. At one point, I even threatened to throw her out of my house for a lack of trying. I told her that I wasn't going to sit idly by while she wasted away. I couldn't be a party to that. Like I said, it was very painful. By the time Hunter and Grace arrived, in March, 2008, mom's health was extremely poor. She was incapable of walking or even standing without assistance. This made the fact that she was on diuretics (for blood pressure - especially in the hepatic artery) and diarrheals (or laxatives, to remove ammonia from her colon before it entered the blood stream) all the more of an issue. There was no way for her to get from the bed to the bathroom by herself. By June, 2008, there was no way to care for her at home. She stopped taking the diarrheal (lactulose) during the day so as to avoid soiling herself while James was at work. This led to a build up of ammonia that caused an encephalopathic episode which put her in the hospital. While she was in the hospital, James and I made the decision to move her to a nursing home (on the advice of a very insistant nurse). It was very hard to watch Mom's health continue to decline. It was especially difficult to think about Hunter and Grace never having the opportunity to get to know, first-hand, what a wonderful, creative, loving person she was. At times, thinking about this made me very angry - angry at mom for not trying harder to get well. Over time, that anger made it difficult for me to be around Mom. I began (subconsiously) avoiding her. And, I dragged my feet when we did go to see her. When I explained all this to the chaplain at the nursing home, during Mom's last week, he explained to me that God is our Father, and that perhaps He was reminding Mom what it was like to be loved unconditionally by a father through my interactions with the twins. This was especially poignant because my Mom never really knew her birth father. He left when she was two or three years old. And, her relationship with her adopted father - the man I know as "Grandpa" - was such that she never referred to him as "Dad." This touched me deeply. Tears flowed out of me uncontrollably. It was as though I'd been allowed a quick glimpse of God's master plan. It was at once extremely emotional and deeply calming. After all, by the time her liver disease was diagnosed, it was already classified as "end-stage," meaning that her liver had completely failed. At that point, she was already too sick to muster the energy to exercise in order to improve her condition. In the end, when Mom passed, I actually felt happy. A deep feeling of peace came over me. Rather than feeling sad, I felt grateful for the time we had.
My mom passed away just after lunch, today. She was 61. Mom died of liver failure, caused by cirrhosis, brought on by nonalcoholic steatohepatitis (NASH). She was diagnosed on December 7, 2006. But, by that point, she was already too weak for doctors to place her on the transplant list. Over the next two years, mom’s health took two steps backward for every step forward. She was in and out of the hospital several times, eventually landing at Providence Marianwood nursing home in Issaquah last June. During the last couple weeks of her life, mom declined rapidly. She stopped eating a week ago. We stopped treating her illness in favor of making her comfortable on Monday. And, starting on Tuesday, the nursing staff began to tell us that she could go anytime. She hung around for another four days. Apparently, she was waiting until she could be alone with her three boys. This morning, James (her husband), Mike (my brother), and I sat in her room, sharing our favorite memories of her. We cried a little; but we laughed more. I think she took it as a sign that we were going to be okay. It gave her permission to slip away. At lunchtime, Mike and I left the room to help Jill feed the twins. James took his lunch with her. Afterward, he came out to check on us. When he returned, ten minutes later, she was gone. Previously, mom expressed to me anxiety about dying. There was no sign of it, today. Rather, after her passing, I experienced a very deep calm. I felt that she was at finally peace, finally resting after years of pain and suffering. Her body failed her, but not her spirit. The family is planning to get together to remember mom sometime this summer. We don’t have specifics, yet. I’ll publish them here when we do. In the meantime, Jill and I plan to make donations to the following organizations in mom’s memory:
- Providence Marianwood Foundation (Where the need is greatest)
- Swedish Medical Center Foundation (Charity Care)
My mom is terminally ill. She has cirrhosis of the liver, caused by a condition know as NASH. And, recently she took a turn for the worse. Since last Friday, she's been in a semi-conscious state brought on by extremely high levels of ammonia in her blood stream - a condition known as encephalopathy. She is able to respond to simple voice commands. She can answer yes/no questions. And, she's eating when someone feeds her. But, she cannot carry on a conversation. She cannot answer anything but yes/no questions. And, her eyes, vacant and glossy, look right through you when you do manage to get her attention. She spends most of her time in a sleepy haze of pain (from various bruises and sores related to spending all of her time in bed) and itching (from the toxins in her blood stream coming out through the skin). The treatment for this condition is a medication called lactulose, which traps the ammonia created during the digestion process in the colon, before it has a chance to be absorbed into the blood stream. Mom is on a high dose of lactulose now, as she has been for a couple of years. And, between last Friday and last Monday, her ammonia level dropped by almost 100 points. But, at that time, it was still over 160. (Healthy people have an ammonia level below 35.) At this point, the prognosis is mixed. Mom could "wake up" tomorrow, regain some or most of her cognitive abilities, and go on to live for many more months or even years. Or, she could stay in this sleepy, itchy, painful purgatory, eclipsed by this veil of ammonia. Or, she could fall into a complete coma, stop eating, and die. There's just no way to know. What we do know is that if she stops eating, she will pass away from malnutrition within two to three weeks. We've known this was a possibility ever since mom was diagnosed back in December, 2006. We hoped that she would qualify for a liver transplant. But, unfortunately, her disease was already too far along when it was detected. She was never deemed strong enough to survive the operation, and was therefore never placed on the transplant list. Now, she's being placed on a different sort of list - she's being placed in hospice. I know my mom loves me. And, I know she knows I love her. But, I would dearly love the opportunity to tell her one more time, to share one more laugh, and to hug each other and cry together one last time, as would all of her friends and family. Please say a prayer for my mom. May God bless her. May God ease her pain. And, may God share our thoughts and prayers with her so they might give her solace on her journey from us to Him, no matter how long it takes.