By Karen Brode
I stood at the kitchen counter slicing carrots for soup and gazed out the window above the sink. I had always thought of myself as the kind of person who would take care of my mother if she needed care. But now that the time had come, where was I? I was crouched in the corner with my hands over my eyes hoping someone else would take over. I felt ashamed of my helplessness and inability to take charge of the situation.
I had a feeling of shifting sands, of things moving beneath my feet, and it seemed all I could do to keep myself balanced. After many nights of lying awake mulling things over, I had decided that if Mother was still Mother, I would be able to take care of her, but who was Mother these days?
Last September the neurologist had confirmed that he thought she had Alzheimer’s Disease. It felt as if a a heavy anvil fell across my back as he said the words. He must say things like that every day so it wasn’t anything out of the ordinary for him. I listened to his projections of what we could expect to happen to her in the future, but it didn’t seem real. These things weren’t going to happen. I wouldn’t let them happen. I didn’t believe she would get any worse. She was just a little forgetful, that was all. That doctor didn’t know anything! He told me I should start looking for a nursing home for her, but that was ridiculous. She winked at me when he said it, as if she, too, understood that it was ludricrous for her to even think about a nursing home. I wasn’t going to put my mother in a nursing home as long as I had breath in my body!
The phone rang late one night in early November. It was Mother and she said, “I don’t know how much longer I can handle this. These people come in here every night and they make so much noise I can’t sleep.”
“What people?” Were people bothering my her? I rushed to her house to try to better understand what she meant.
She explained that every night after she went to bed, people came into her house to sleep in the back bedrooms. They left before she got up the next morning, but she heard them during the night going to the bathroom and getting drinks. It wasn’t that she minded them sleeping back there, it was just the noise she couldn’t stand.
I stared at her with fear and disbelief. I explained that her doors were still locked. No one could’ve gotten in. I truly thought if we worked hard enough to dispel these issues, she could be okay. I believed if I was somehow able to to say just the right words, she could be the way she had always been.
Her housekeeper called on a windy afternoon in March to tell me that Mother was planning to get in her car and try to find my father. He was sick and he needed her to take care of him. My heart broke in so many different places that afternoon when I had to explain to my own mom that Daddy was dead, had been dead for a long time. She agreed that he had been dead, but now he was back. She had seen him and he was sick, and he needed her to take care of him.
I looked into her face and wanted so badly to find the woman who had been my mother. I was scared and I wanted her to come and help me handle this! I looked about the living room and saw the chair she had rocked me in when I was little. I could never have imagined that someday I would live out my worst nightmare here in this room that contained so many happy memories.
I thought wistfully of the days when my son, Brandon, was little. Momma had come to spend the night with us once a week. She had never missed one of his school plays or a soccer game. Almost every childhood memory of Brandon contained his Gigi.
My husband, Gary, and I had brought Brandon home from the hospital to Momma’s house and my heart swelled with bittersweetness as I remembered her coming out into the front yard to take Brandon from Gary’s arms and carry him into her house. It was her arms Brandon felt in the night comforting and cuddling him when he whimpered during that first week. Her loving hands bathed his little body for the first time. Her voice calmed and soothed him and it was she who rocked him in that same chair in which she had rocked me.
In better times, I had often prayed that Momma could live to see Brandon grown, and she had. He was seventeen now. When I thought of Brandon’s childhood, it seemed that those days were bright and sunny while now the days were dark and cold. During the past year, the shadows and darkness had been gathering closer and closer. Even on days when the sun was shining, the light seemed murky, an eerie and not-like-real sunlight at all.
Things got worse as summer neared, but still I held onto the hope that maybe she would just miraculously snap out of it and get back to normal if we gave her enough time. By May, she needed constant care, and I went to her house several times a day. She had begun unplugging her refrigerator every morning, but she thought someone else did it. Small tasks had become overwhelming to her. My once immaculate mother had stopped taking daily baths and it was getting very hard for her to get to the bathroom on time.
I had begun to worry about what she might put in her food if no one was watching her. She no longer wanted to take her medicine for high blood pressure. Reasoning with her was not an option. Even with the housekeeper coming during the day, there was still suppertime and evening to concern us.
Sometimes she was almost herself, and I clung to those moments. I wanted to believe they were real and the rest of it wasn’t.
She stood at the kitchen window looking into the backyard. She remembered planting the trees out there, but the house wasn’t her house. She wanted me to take her home. That hopeless, helpless feeling overwhelmed me as I tried to calm her and explain that she had lived there 35 years.
We took Momma to the nursing home on August 8, 1992. I had hoped for so long that God would intervene, that God would spare me this day of sorrow, but He did not. Tears ran down my face as Momma left her house for the last time. For as long as I live, I will have the memory of her walking down the sidewalk into the nursing home and not really understanding what was happening.
I went back to the nursing home everyday that week. On several occasions I would wake up in the night and think that I should just go get her and take her to my house. But as much as I loved her and wanted her to be okay, I couldn’t make her okay anymore.
My grandparents had been dead for many years, but she often told me they had been there to see her. By that time, I had stopped trying to explain reality to her; it had no place in her life now.
My mother walked out of the nursing home and started across the field thinking she was going to her childhood home. When I saw her sitting in a wheelchair with a vest restraint to keep her from wandering off, I didn’t think I could stand it. But I had already stood so much.
We bought her a baby doll for Christmas. She keeps the doll sleeping beside her or in her lap. There are food stains all around the doll’s mouth where she has attempted to feed it. Her adored grandson, Brandon, went to visit her and she looked into his face and asked who he was. Alzheimer’s is such a mean disease.
At times when this facsimile of my mother talks I try to listen close and strain to hear what my real mother might’ve said. My heart yearns to share this with her, to ask her what to do. Would she understand how painful and sad it is? Would she be aghast at the horror and anguish her illness has caused? I will never know.
There are no prescribed ways to handle any of this. There are no clearcut answers. The only answers I can find are the ones that come to me after tossing through another sleepless night. My mother is gone, and in her place is a little child who needs to be cared for and watched at all times.
She is gone from us as surely as if she had died, but there has been no funeral. There was no moment when she was here and gone the next. There is no time to grieve or to move on. Her death is a living death and she doesn’t even know that she has died.
Karen Brode grew up in Denison, TX and graduated from Denison High School in 1972. She took courses at Southeastern Oklahoma State University and worked in a church office for 25 years. She and her husband, Gary, have been married 39 years and they have one son, Brandon. Karen’s hobbies are writing, sewing, and gardening.