“NOT normal.”
My brother Joel eased himself down on the couch beside Daddy. He’s the tallest one in the family and he looks even taller next to our father. I guess people really do kind of shrink as they get older, and also Dad seems to have lost a little weight over the course of the surgery and radiation. The TV was on, probably CNN, and we had all just finished eating so Mom and I were kind of milling around in and out of the kitchen. Daddy reached over and took Joel’s hand in his and sat there silently holding it, his eyes on the television. They stayed that way for a long time: very still, side by side, not talking, just the sound of the newscaster droning on and on. Joel said later that was the first time he ever remembers anything like that happening. Daddy is affectionate, but his physical demonstrations (especially with his sons) tend to be more of the hug-and-release or pat-pat-patting of the arm variety. Sitting on a couch holding hands with a grown man is a little out of character for guys of his generation. The intimacy of the gesture surprised and moved Joel, and after a while he slightly shifted his position, leaned his head on the back of the couch and turned to Daddy. Gently, hesitantly, he started asking him questions. “Dad, we’ve been talking a little about how it sometimes seems like it’s hard for you to… process things. Mentally, I mean. You know, after all the medical stuff you’ve gone through.” He waited. Dad nodded. Joel said, “What does that feel like?” Daddy just shook his head, sadly. Joel said, “When we’re all together and talking, it seems as if you are following everything that’s going on. You laugh at all the jokes, and you look like you’re taking it all in. Is that pretty accurate?” “Yes,” Dad said. Joel carefully pressed on. “But sometimes when we ask you a direct question it seems like it’s hard for you to get the thoughts in your head to come out in words.” Dad nodded again.
I walked by just then and overheard what they were saying. I slid out of the room and stood around the corner, out of sight and unabashedly eavesdropping. These were the very questions I had been dying to ask, but had repeatedly chickened out from doing so. Daddy’s increasing ‘fogginess’ has been the subject of lots of emails and phone calls among the siblings, and we have worried, whispered and discussed it thoroughly among ourselves; but what I really wondered about was what it felt like to Daddy. How aware was he that his thinking processes were cloudy? Did he know what was happening to him? But I couldn’t bring myself to ask. I was afraid I’d put him on the spot, or embarrass him, or worse– that he wouldn’t be able to formulate an answer for me at all, and I’d feel horrible. I’m kind of a coward that way.
The thing is, there are any number of valid reasons that could explain his obvious struggle with cognizant reasoning– the guy is 93 years old with a heart rate that routinely dips down to 48, for crying out loud. Add to that his history of two, possibly three heart attacks and the onset of a rare, very aggressive cancer and his subsequent surgery including skin grafts for that cancer and the 30 radiation treatments all aimed at the scalp area that also happens to cover his frontal lobes and there’s always dementia and the possibility that he may have suffered some small silent strokes… I mean seriously, pick one. We may never know exactly what’s causing it, and despite my Mom’s most fervent hopes– she can only bring herself to call it “Don’s memory problem”– the situation may not be reversible. (I have now typed the last part of that sentence three times. I have changed it from “may not be reversible” to “is probably not reversible” and back to “may not…” again. Apparently Mom is not the only one fervently hoping.) But even if a cause is determined and some kind of therapy is recommended, my real concern is how it is affecting Daddy inside. It’s funny, throughout all of his medical problems the first questions almost all of us have asked when notified of the latest development are, “Is he scared? Is he sad?” It’s like we can all stand anything but that. The thought of Daddy being lost and frightened inside a mind or body that’s not working properly just undoes me. I have watched him tolerate the physical pain and indignities that come with all of his medical procedures with such grace, faith and good humor. But seeing the look on his face when he struggles to complete a thought, or grasps for words that don’t come, or has to be told three times where the coat closet is– that’s a gut shot.
So when I heard my courageous brother, bless him, lovingly and sensitively giving Daddy a chance to express his feelings about what is happening to him, it stopped me in my tracks. From my hiding place around the corner I listened to Dad haltingly try to explain what it was like to know that your brain isn’t working right, but not be able to correct it. Yes, he understood what was being said to him and around him, apparently even to the point of anticipating the punch line to a joke or grasping the nuances of our family’s insulting kind of humor– not that there are any nuances to be found there, really. But when his brain needed to sort information in order to make a choice between two things, or turn the answer in his head into a verbal response, he couldn’t seem to connect those dots. (Daddy didn’t articulate all of these things, but he was able to answer yes or no to Joel’s carefully worded questions– this is my best recollection of how the conversation went.) Joel asked him if it was frustrating, and he emphatically said, “Yes! I just can’t…. It doesn’t…” Daddy’s voice trailed off. Joel said, “Are you OK with it? Do you just kind of accept that this is the way it is, and try to make the best of it?” Pause. “Yes.” Of COURSE he would say that! That’s what my “Greatest Generation”/child of the Depression/stoic Midwesterner father has always done. Then came the hardest part. Joel gently asked, “Dad, is it scary?” He was quiet for a minute then Daddy said softly, “I don’t know.” And my heart broke a little.
The next morning the girls, Joel, Kri and I were already sitting down at the breakfast table when Daddy joined us. He smiled and greeted us and then glanced over at the TV and remarked on something the newscaster said. He leaned down and ruffled his beloved Pandy’s fur and said, “Hello there, Pandy girl– do you need to go out?” His eyes were clear, and though his words were few he spoke them naturally and effortlessly. Joel and I exchanged slightly startled glances. He seemed so much sharper, so much more like the ‘old Daddy’ that it was kind of disorienting for a minute. These days he usually doesn’t initiate a lot of talking, though he answers when he is spoken to– there’s usually just a lot of sitting quietly and staring going on, so this was definitely different behavior. Mom brought him a plate of pancakes and he slowly but enthusiastically started eating them, glancing at the paper as he drank his coffee. I walked in and out of the room, gathering up odds and ends we had strewn about as I started packing up for our trip home. Within the hour I could tell that Daddy seemed to be tiring a little, and by the time we were almost ready to go he had moved over to the couch and was silently watching television again. Joel turned in his chair to face Daddy and said with a smile, “Dad, today you seemed kind of different when you came in, more like your old self. Were you aware of that?” “Well,” he said. Then he smiled, and looked a little uncomfortable– the way he looks when he’s having trouble formulating an answer. He shrugged, still smiling. Joel said, “Do you feel any different, do you feel more… normal?” Dad’s smile faded. “No,” he said, sadly and firmly. “NOT normal.”
As we walked out to the car to leave, I heard Mom say, “Don, they’re leaving, we need to go say goodbye.” Dad started to reach for the edge of the sofa to help him stand and I hurriedly said, “No, you don’t need to come outside Daddy, we can say our goodbyes in here.” But he and Mom wouldn’t hear of it. Slowly, carefully the two of them made their way to the front door, Mom guiding him with her arm when she needed to, standing back and letting him go it alone when he could. It took a while, but they got there. After we had all hugged everyone and piled the girls and the dogs into the car, I slid into the passenger seat as Russ started to pull out of the driveway. And then I looked up and there it was, that picture I’ve seen so many other times before, two small white-haired figures freeze-framed in front of their house waving goodbye. Against all odds we’ve managed to have another Thanksgiving with both of them, here in their own home surrounded by all six of their children, assorted grands and great-grands. It’s more than anyone has any right to expect, and I’m incredibly grateful. It should be enough, but if I’m honest? It’s not. I want Christmas, too. And if they have to go– and yes, I know they do– I also want some kind of written guarantee from God that death will come gently and peacefully in the middle of a deep sleep as they lay side by side holding hands.
Because Mom told me that’s how they fall asleep every night.
And I really wish she hadn’t, because just like the driveway snapshot, that image is now in my mind forever and the exquisitely painful sweetness of it is damn near unbearable.
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I wrote this for all of you kind friends who have been asking me how Daddy is doing. There’s not an easy answer, really. Please keep them both in your prayers.
