Months ago when I heard a scuffle in the kitchen and the clatter of crashing plates, the metal tray crashing, and found Burt on the floor with his head against the kitchen island, I knew our life had changed. We took him to the nearest trauma center where he was diagnosed with a massive brain bleed. I didn’t know what the future looked like…I still don’t. I try to get a pattern of behavior so I know what to expect, but it doesn’t happen. Every day is a little surprising.
I think this is the hardest part of this journey: not knowing what to expect. I wonder constantly if Burt needs me,. I find that every bump or tap in the night causes me to react in a panic. I listen for a ping on my phone or sound of footsteps coming down the hall to alert me to a need. The night caregivers remind me again that they can “handle it,” but just as a mama with a new baby, I feel that it should be me. That’s because no one knows or understands him as I do…except now sometimes I don’t. There are times I wish the people helping care for him would all leave us alone, yet the thought of having all the responsibility is overwhelming. Every day my heart cries out for him to be surrounded by those who can see past some of his confusion and odd comments and instead, see the strong, courageous, determined, and confident individual he once was.
Sometimes this same man emerges and he makes clever comments and I know he’s still in character. In reference to the number of times he calls for me each day, I said to him,”I’m about to go into the living room and visit with my friend. Don’t call me one hundred times!” “Okay,” he replied. “I’ll just call you ninety-nine.”
Recently one of our granddaughters said, “I miss seeing Pops the way he used to be.” I smiled when she added, “although now he’s nicer than he used to be.” I have to agree with her. For most of the time he’s very easy and “chill” (as the kids say). He’s not as bothered by their actions as I’ve seen him be in times past. They can tease and toss indoor snowballs,make silly faces and turn his cap around on his head, and he seems unfazed by it all. If they’re running on the grass, the lawn he’s tried to maintain for years, he makes no comment–even when he’s wearing the tee shirt that says “keep off the grass” ( a fun Christmas gift a year ago).
Now I see the tee shirt as a reminder that he’s no longer the same person. His efforts to have a pretty lawn require more energy and ability than he has to give. The memory of him on his knees trying to get off the ground after turning a sprinkler, or using a push mower to prevent tire marks from the riding mower, touches my emotions because he was making those efforts to have a pretty lawn because it was important to me.
Somehow it doesn’t seem to matter as much any more.