My mother died at 6:20 in the morning and I had been with her until about 9:30 the night before. She slipped in and out of a hallucinatory state. I sat at her bedside, held her cool hand, stroked her arm lightly, still too heavy a hand for her. I brushed through her hair with my fingers, urged her to take a little water. I knew. And yet, I didn't. My mind wouldn't allow me to believe that she was really dying. A twenty-year case of diabetes, undiagnosed, claimed her life, and the amputation, limitation, quintuple bypass, congestive heart failure and kidney failure all combined, within a period of about five years, to steadily extinguish the flame of her life.....her extraordinary life of giving and gift, her gusto and enthusiasm, her verve. My brother, who lives five hours away, and I urged her to seriously consider dialysis when, during her last hospitalization, it became necessary. She didn't want dialysis; she wanted to die. No life- prolongers for her unless that life was quality living. She was ready, but her children were not. She managed to come back time and again and again.....until now. Her doctors, and the nurses at the nursing home told us that they were surprised she was still alive. She was receiving dialysis treatments three times a week, getting weaker and weaker. One day it was suggested that my husband and I go with her to the dialysis unit. It was an experience that will forever remain etched in my memory. I looked at my mom in the recliner as the toxic wastes were being removed from her system. During the five-hour process she lay pale and weak in the chair, and I remember my shock at hardly recognizing her. How, I ask myself over and over, is it possible not to recognize my own beloved mother? She looked unhappy and resigned, defeated and sad. The nurse who cared for her with tenderness caught us and moved us to a sheltered area. She wanted to talk. "I am not suggesting that she terminate treatment, but I do want to tell you that dialysis is not having a good result for your mother. Yes, it's keeping the wastes from her body, but it is not improving the quality of her life. You may want to think about talking with her about stopping." Ice traveled through me! Dawn had arranged a meeting for us with the nephrologist. I have rarely experienced such kindness as what then transpired. Other therapies were suggested, but I could hear the reality. It's time. Your mother is going to die. That night I called my brother. He said, "No way! Make sure she stays on dialysis." But then he visited, saw her, and changed his mind immediately. The doctor had said that regardless of whether she stayed on dialysis or not, she had about a week and a half to live. It was an agonizing Friday as my husband, my brother and sister-in-law and I talked with Mom about what was happening. She had been expressing her displeasure about being on life support since it was first recommended. She said she would try it for a couple weeks "for you kids." I came to realize what a difficult struggle it must have been for her. Throughout her life and until her last moments she did things for her kids. I thought there would never be a time when I could be ready to let her go. But when I saw her there, saw her pain, discomfort and weakness, my understanding changed. I needed to do something for her. The biggest offering of my life was upon me. I had to give my mother what she wanted, and that meant saying goodbye to her. My words cannot describe this. We sat with her, talked about what ending dialysis would mean. I remember this conversation: "Mom, if you stop dialysis, do you know what would happen?" "No," she replied, but I remembered that very recently she spoke openly about it with me. I knew that in a deeper place she knew. "It means, Mom, that you would die." Speaking those words aloud felt excruciatingly unbearable. "Good," she said with understanding and warmth in her voice. We spent the day holding her and talking with her, even laughing. She said, "You know, I don't want to die, but if I can die laughing, that's all right." There is nothing unfinished between my mother and any of us, and that is a blessing beyond words. We followed the protocol of letting the medical professionals know our decision. The rest of that bittersweet day was ours with her. Every minute we questioned whether we were doing the right thing. We paced, we cried, we stayed with her, we memorized her face. We could not break away. Finally my brother and his wife had to leave. We stood sobbing, my brother holding me trembling in his arms. "It's the last time you'll see her, you know," I said to him, as if that would give us more time with her. "I know," he cried, and both of us had to force ourselves to make this separation. My husband suggested massage to ease her discomfort of having to lie in one position during dialysis and lying so still in bed, unable to move without assistance. Twice a massage therapist comforted her, and we were happy when she said how good it felt. Comfort was important then.
Five days later she died. She said to the nurse who'd spent the night caring for her and was now about to turn her to face the window, "I'm going home now." When the nurse turned from closing the curtain between the two beds, my mother was gone. I'd decided that I would go to the nursing home after she had died if I wasn't with her at her moment of death, and, at 6:28 AM, I was awakened from sleep by the call. Difficult as it was to enter her room, I was finally able to gaze from the foot of her bed up to her head. I found, after an initial sobbing collapse into my husband's arms, that I could touch her. I stroked her arm, her forehead, her hair. I kissed her cheek and nose. I looked and looked at her. It's so hard to say what these moments meant to me. I saw my mother in life, a woman strong, fun and unconventional, accepting and expansively loving. I know the privilege of being her daughter. And I saw my mother in death. I had been with her in hospitals, in physical therapy, in strength, in weakness, in joy, in tears, in well-being, in pain.....in life.....and now in death. Saying goodbye to her, whooshing her ashes to the winds, arranging a meaningful memorial service, all have been painfully difficult for me, but somehow also enormously healing. I cannot believe that she has been dead for ten months. I am a changed person. I feel her gifts strongly, and my love for her will only enlarge
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