Just a quick note to thank everyone who attended mom's remembrance ceremony today. It was great reconnecting with family and friends from long ago. We know that mom would have enjoyed herself immensely among the diverse crowd that came together to remember her today. For those of you interested in the videos I showed today, you can view and download them at our MobileMe gallery (scroll to bottom of page). I'm in the process of uploading them to YouTube, as well. But that takes a bit longer. (I'll update this post once the videos are available there.) James, Mike and I would also like to thank TPC Snoqualmie Ridge for their generous hospitality. Deke, in particular, was a great deal of help. Thank you, Deke. Love to all... Alan
James and I are putting together a little get together to remember Mom. James' employer, Snoqualmie TPC golf course, has graciously offered to host the event. We've tentatively scheduled it for Monday, June 15. We don't have a time, yet. But, I wanted to communicate the date as soon as I could to give folks time to make travel arrangements.
I picked up Mom's ashes today. They're sitting on the kitchen counter, in a simple container called a "minimum." We haven't decided yet what to do with them. I'm leaning toward having some custom urns made from Mt. St. Helens glass - one of Mom's favorite things. Still need to discuss it with Mike and James, though.
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)
After a couple of weeks of relative normalcy, Mom is back to having issues. Within the last couple of days, she's started having difficulty keeping food down. And, yesterday, she was running a temperature of 102, which could be related to an infection. More when I have a better idea what's going on... As always, please keep Mom (and our family) in your thoughts and prayers.
Last night, at about midnight, mom woke up! She spoke to the nursing home staff, asked about James, and wanted to speak to him. The staff politely refused to call James, since they knew he'd be there first thing in the morning, like he is every day... When James did arrive, mom chewed him out. She thought he'd been off golfing all this time. And, boy was she mad! (In reality, she's been the one who left the building. James has been by her side almost constantly since this episode began over a week ago.) Jill dropped the twins and I off at the nursing home at about 10:00 this morning. (Jill had an appointment.) My brother (Mike), and his wife (Kristie), arrived a few minutes later. (They arrived from Coeur d'Alene, Idaho last night.) Mom was awake and relatively alert. She made eye contact with me for the first time since this bout of encephalopathy began. And, she coaxed smiles from both Hunter and Grace, who promptly returned the favor. Mike gave her his patented "12 hugs" with kisses to match. It was a very happy room! So, mom is now coming out of her encephalopathy. Last week, she was at "Grade 3" on the 1 to 4 scale of encephalopathy (where 4 = coma). Today, I would say that she's at "Grade 2." She is awake and communicating, though still groggy and having difficulty finding words to express herself. She even fed herself part of her lunch. And, no wonder - her ammonia level has dropped to 106 as of yesterday morning, and is likely still falling as the lactulose seems to be doing its job. I've not spoken to her doctor, but my hope is that her short-term prognosis is now much improved, since she is responding well to treatment. Hopefully, by this time next week, mom will be back to baseline. Though, it is not outside the realm of possibilities that mom could slip backwards. And, quite certainly, mom's long-term prognosis isn't good. The ammonia will be back, and with it will come the encephalopathy. This has been a very scary experience for all of us. Now that mom's regaining consciousness, I'm certain that each of us will find a way to communicate to mom how much she means to us. James, especially, was bouncing around and beaming, today. His girl is on her way back! It was clear to see that he is incredibly happy, which helps mom tremendously. One last bit of news to report today: James went ahead and signed mom up for hospice care. The hospice admitting nurse met with all of us today. She explained the services offered by her team. And, she examined mom, looked at her charts and spoke to the consulting hospice physician about mom's meds. They're going to add something for the itching, as well as a medicine to help with the disorientation/confusion associated with the encephalopathy. More as we know it... Many thanks, again, to everyone who is keeping mom and the rest of us in their thoughts and prayers. We can feel the love!
I just got off the phone with James (mom's husband). He said that Mom appears to be slowly waking up. She is recognizing people and trying to communicate. This could be VERY good news! I'll post more information as it comes in... Thanks to everyone who is keeping mom in their thoughts and prayers.