The Whole Wide World

Winter was wearing on. Toward the end of January, the hospital asked for a family meeting. I asked my daughter-in-law Angela to join me. As a medical professional herself (as I’ve already mentioned, Angela was a labor and delivery RN and was studying and training to become a Certified Nurse Midwife), I trusted Angela’s knowledge, help and perception with all medical topics. This time, the meeting was held in Leila’s room, with her being present. Dr. Manzione, who was Leila’s primary care provider in this facility and who had been the first doctor we dealt with when getting Leila’s room changed upon our arrival back in early November, was present. In addition, the Chief Nurse, Ms. Wachtel was there as well. The conversation started with Dr. Manzione laying out Leila’s physical condition. He stated that her weight was down to about 80 lbs. They had prescribed medicinal THC in an attempt to increase her appetite, but she still couldn’t eat much. Her physical abilities had not improved at all during her stay at this facility. She still could not stand or walk and had little strength in her upper body, other than the ability to sit up in bed. He noted Leila’s deep depression and anger; though without commenting on any possible causes, such as the effects of inflammation on her brain from the Systemic Lupus Erythematosus. The Chief Nurse then proceeded to tell Leila, Angela and me that she was very displeased with the way Leila treated the medical staff and me. She spoke in a stern and heated manner, expressing her outrage at Leila’s “lack of appreciation” for what everyone was doing for her. I was caught off guard and grew upset at this, feeling like Leila was being attacked, although I understood why Ms. Wachtel was feeling frustrated. Dr. Manzione let Ms. Wachtel speak for a moment, then he interrupted. He went back to the subject of Leila’s continuing physical deterioration. He told us there was nothing more they could do to help improve Leila’s condition. Then he said a word that shocked me: Hospice. Dr. Manzione suggested that we should consider letting Leila go into a hospice facility. He was telling us that Leila was at the end of her life, and his recommendation was that we make the end of her life as comfortable as possible. I felt weak and couldn’t believe what I was hearing. Dr. Manzione kept talking, but I lost focus on what he was saying. I think I just sat there shaking my head. “No,” I thought, “We’re surely not at that stage. Leila can still get better. No, I need to talk to her, motivate her. If I can spend more time here with her, she’ll try harder. This isn’t right. No. No. Not hospice. No.” I don’t remember much after that. I think Dr Manzione and Ms. Wachtel left us to discuss and think about the doctor’s suggestion. Leila, Angela and I sat there together for a little while and chatted. I don’t think we talked about hospice at all; I was still struggling to process what was said and Leila probably didn’t want to discuss it. Soon afterward, Angela suggested that she and I had to leave, that she needed to get home to get the kids, Scarlet and Oliver, to bed. The next thing I remember, Angela and I walked into a small diner next door to the hospital. We were stopping to have dinner since neither of us had eaten yet. We sat down at a table and looked at menus. A waitress quickly came by and took our orders, then left us alone. I was absent-mindedly chattering about something, avoiding the topic most on our minds. Angela was patient. When I paused in my relentless monologue about nothing at all, Angela gently interrupted. “Mom, I know you don’t want to think about this, but you may need to start considering the possibility that Leila might not come home,” she said softly. I think I stopped breathing at that moment. “No,” I said, “they don’t know Leila like we do. You know how stubborn she is,” I insisted. “She wants to come home to Ashlynn. You know she’ll do anything for her baby. We keep talking about what we’ll do when Leila comes home, and how great it will be when she can see Ashlynn all the time. Leila’s not giving up on that.” Angela listened. She is a deeply kindhearted, compassionate woman. She recognized my desperate effort to deny the truth, even to myself. She did not push further. Our food came and we ate while chatting about other, happier topics. I will always remember Angela’s kindness and love that evening. It touches me to this day.