When I was staying with Mom that first summer of her diagnosis, and after moving in with her in the fall, I slept in my old bedroom upstairs, the room I had from the ages of eight to eighteen. I never thought I’d sleep in that room again, and there I was, back home, 35 years later. I remember laying in bed and reflecting on what life was like back then. Things were so simple and carefree all those years ago, when it seemed nothing bad could ever happen. The sounds of the lawnmowers outside, kids playing down the street, the gentle breeze blowing the curtain open, all reminded me of those young years I hung out in my room with my best friend, doing homework, writing in my diary, or getting ready for school. I was quickly brought to reality when I heard Mom call for me and I would rush downstairs to see what she needed. There she would be, looking frail and older, showing visible signs of dementia, and needing me, and I was brought back to reality.
When Mom kept getting up during the night and moving around the house, I felt it was best to sleep downstairs to keep watch on her. I worried that she might turn on the stove and forget about it and then the house would burn down. What if she choked on her food? I couldn’t live with myself if that happened. The problem was, there was only one bedroom downstairs, and that was Mom’s room. The only option was to sleep in the living room. Since the couch was not very comfortable to stretch out on, I decided the only other option was to sleep on a sleeping blanket on the living room floor. This was to become my bed for the remaining months that I stayed there. Every night I would unroll the blanket and lay down, exhausted, after Mom went to bed. And in the morning Mom was usually up first, so I would get up and roll my bed up and we’d start the day together. Here's a picture of my bed.
There were nights that Mom didn’t sleep through the night, in fact, that happened often. She would usually go to bed pretty early and then wake up before daylight and be ready to start her day, but some nights she would be up still at 10:30 or 11:00. After she went to bed that was when I could relax and watch television or talk on the phone. Mom didn’t like it when I was on the phone when she was around. She seemed to think I was ignoring her and she would often tell me to get off the phone because she wanted to use it, even though I was most often using my cell phone, not the home phone. She would interrupt me and start talking, not seeming to notice that I was on the phone. I accepted that Mom didn’t like it when I was on the phone and I would always try to make important phone calls or personal calls when she was napping or in bed for the night.
Some nights Mom would get up in the middle of the night and turn on the lights and go to the kitchen to fix something to eat. Then she’d come into the living room and turn on the TV. I would ask her to please turn the TV off because it’s the middle of the night and we need to sleep. Sometimes she would apologize and turn it off, other times she insisted on watching it. She could be stubborn. It just depended on her mood. I remember a few times she’d yell at me for sleeping there and tell me to go upstairs and sleep. Then she would constantly turn on the ceiling fan and then turn it off, turn it on again, and turn it off. This happened all during the day, too.
Mom wasn’t always obstinate. She just wanted to live her life the way she wanted and it wasn’t her fault that I invaded her territory. If she wanted to get up in the middle of the night to eat a snack or take a shower, then she should be able to, and who was I to tell her not to? Usually she wasn’t up long and she would go back to bed. Other times she would fall asleep in her rocking chair (she loved that rocking chair) at the foot of my make-shift bed, until she would wake up again and start rocking and/or get up to get something else to eat.
I have to admit that once in awhile I got irritated that Mom would keep me up during the night. I’m one of those people who needs eight hours of sleep to function well the next day. Mom would take naps during the day but I could never get used to doing that no matter how tired I was. Mom’s naps were always taken in little fragments. She would often sleep for 5 minute stretches, and occasionally she might dose off for an hour or two. I’d watch her enviously, because I couldn’t fall asleep like that.
There were times that I’d hear Mom get in the shower in the middle of the night. Often I would have a struggle to get her to shower during the day. She would say she just took a shower yesterday, even though it was three days ago that she did. It was an ongoing battle that she usually won. So when she took a shower at 2:00 in the morning, I let her do it. I would listen for her to make sure she got out ok and turned off the water. Once she was in there forever. I was worried and went to the bathroom to check on her. She was ok and out of the shower, but the water was still going. It was coming out cold. I don’t know how long she was actually in the shower.
It’s funny when I look back on it, how Mom would sometimes get so irritated when she saw me sleeping on the floor. She would say, “Get up, you’re always sleeping!” Or she’d tell me to go upstairs and sleep in the bed. I’d give her the excuse that it was too hot or too cold up there. That usually worked because she did know that. Other times Mom just accepted that her oldest daughter was camped out on her living room floor, whether she understood why or not, she realized I wasn’t going away.
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