Tonight I watched Jon lead Bo from the kitchen to the family room, Jon walking backward with Bo’s hands in his. Bo moved with mincing steps, unsure of where to put his feet, pulling back, as Jon pulled him along. “Stand up, look at me,” Jon said. Bo’s shoulders were bent, his head down; he looked so old and weak.
In my heart I see a tall, healthy man — a tennis player, a golfer, a skier, an enthusiastic guy headed out for his next activity.
But this is what we see now. We lead him from one place to the other, making sure he doesn’t fall and that he understands where to go. Often our instructions, like “Turn around” or “Sit down here,” make no sense to him. We tell him to lift his arms but he tries to take off his socks. We repeat then repeat again. Sometimes he needs physical pressure to get him to step or sit. Sometimes he thinks the floor has depth and tries to step over a flower in the carpet or over the edge between the carpet and the hardwood floor. Stairs seem to scare him.
People have always told me that the way of Alzheimer’s is decline from plateau to plateau, always downward, and it’s what we’ve experienced over these nine years. For several months he has been on one of these plateaus. There has been little change. At night he sleeps without turning — anywhere from 12, even 14, to 16 hours. We keep the baby monitor on so we can check on him, go to him when he’s restless.
In the morning each day, I awaken him to make sure he’s clean and dry, and then he goes back to sleep until Jon (or Cynthia) gets him up about one o’clock, gives him orange juice, then showers, shaves and dresses him. Occasionally he’s so weak that we let him rest a while before going downstairs, but most days he is able to walk the steps with help and have his first meal of the day at the kitchen table. Then he sleeps on the sofa until dinner.
His eating is unpredictable. Sometimes, like last night, he picks up the fork and eats his food, slowly and messily, but he is in charge. Others, we feed him, reminding him to raise his head or even wake up for the next mouthful. His old passion for ice cream has waned. Some times we offer it and he asks, “What’s that?” even with the dish in front of him.
Although I say he’s been on a plateau, I try to gauge the changes over this past year. Jon has seen a big drop. Cynthia, who has been helping us since June, says she also has seen a decline. This rotten, cruel disease just moves at a snail’s pace, taking Bo away from me, from one plateau down to the next.