Author/Actress Kathryn Leigh Scott has written several books of fiction and nonfiction. She starred in the TV cult favorite “Dark Shadows” and has recently appeared in a recurring role on “The Goldbergs.” She grew up on a farm in Robbinsdale, Minnesota and currently resides in New York City and Los Angeles. Learn more on her website.
Last Dance at the Savoy: Life, Love and Caring for Someone with Progressive Supranuclear Palsy
Cumberland Press, an imprint of Pomegranate Press, Ltd.
©Kathryn Leigh Scott 2016
From “Indian Summer”
We had spent such a lot of time apart during my mother’s illness that once Geoff and I were together again in Los Angeles, I was able to see him with fresh eyes—and I was concerned. Gestures that had once seemed idiosyncratic—such as the way he fumblingly adjusted his eyeglasses or scratched his head or tapped surfaces with his fingertips before setting something down—now struck me as odd behavior. Sitting with him at dinner, I found myself pressing my thumb on the base of a stemmed glass so that when he reached for it he couldn’t tip it over.
I’d hoped the time apart would ease the tension that had been building up between us. It wasn’t so much that we were bickering, but more that we were trying so hard not to do anything that would lead to an argument or hurt feelings. I made a point of not commenting in any way if Geoff tripped, stumbled or tipped something over. He hated being seen as clumsy or awkward, and avoided any situation that required dexterity.
Yet, he would somehow manage to hurt himself doing the most ordinary task. He favored one hand and would therefore drop dishes, newspapers, cartons of milk, or injure himself just lifting the lid on a rubbish bin. He was simply not capable of holding the lid up with one hand and using the other to toss in a sack of garbage. If he broke something, he became sullen. He didn’t apologize. He didn’t offer to clean up.
When Geoff retired from Los Angeles magazine, we joked that I would have to take over as “staff.” In fact, “staff” became his funny nickname for me. Adding paper to the copy machine or wrapping a package were tasks he simply could not handle because of his growing difficulty coordinating two hands. He’d try to fill ice cube trays in the old refrigerator in the garage where we kept beer, wine, bottled water and juices. Hours later I would find pools of water on the garage floor and the ice cube trays in the freezer compartment were barely filled.
When we gave dinner parties, it was Geoff’s job to “set the scene.” While I worked in the kitchen, he lit candles, chose music, filled the wine bucket with ice and set glasses on the bar. But on a couple of occasions I found him struggling to open bottles of white wine hours before dinner. Once I stopped him from opening a bottle of champagne more than an hour before guests were to arrive.
“Stop! Why are you doing that?”
“I don’t want to be stuck opening bottles when everyone’s watching me.”
“But it’s too early.”
“Then do it yourself.”
So I did—and also took on the job of lighting the gas logs in the fireplace when it became dangerously apparent that Geoff could no longer do it. One evening I smelled gas and found Geoff sitting on the living room couch trying to reach the gas peg while struggling to click the fire starter.
“You could have blown us up!”
“I’ve been doing this for forty years,” he shouted. “If you don’t like the way I do it—.“
“Use two hands! You can’t do this without getting on your knees and turning the gas on with one hand and lighting the logs with the other.”
“So you do it!”
Doing everything came at a price. The more I took on, the less confident Geoff became. If he was slow to do something, I stepped in and then bore the brunt of his frustration. “You just have to show me up, don’t you?”
Geoff, who had always been a warm, gracious host, deft with conversation and full of good stories, had begun to fall silent once the meal was served. He’d prop his elbow on the table, lean awkwardly over his plate and use only one hand to eat. He handled a soupspoon like a shovel and couldn’t manage to hold a fork to eat salad.
I’d continually remind Geoff not to clutch his wine glass, but set it on the table; to use both his fork and knife; take smaller bites so he wouldn’t choke and to please, please cover his mouth when he coughed. I sounded like the dreaded hall monitor, or the nanny from hell. Geoff was sick of hearing “a laundry list of complaints.” Sometimes we argued, often we rode home from an evening out in silence. I could not understand how he could have become so oblivious and ill mannered, and he wondered why I’d stopped loving him.
“You never used to complain,” he’d say.
True. No matter how hard I tried not to, I’d begun to complain a lot. So I saved my complaints for important things, such as, “Please shower and get dressed so we can leave on time!” Then, as we were walking out the door, I’d notice he wasn’t wearing socks, or had forgotten his belt. My husband, who had always cared about his appearance, was no longer willing to wear certain shoes, pants or shirts. We struggled and argued over the most mundane things.
It wasn’t until one evening late that summer, when we were getting dressed for a black tie event that I realized how difficult it was for him to get dressed. I ended up helping him with everything, including his socks and shoes. I teased him about needing a butler and gave him a kiss, hoping our evening wouldn’t be spoiled.
Life was becoming a lot less fun. Too often I’d offer help when he didn’t want it, which annoyed him. Worse, I failed to notice when he did need help. Frustrated, he’d give up and we’d suffer the consequences.
“Why didn’t you just ask me to put your belt through the loops?”
“I didn’t want to bother you.”
At the least sign of exasperation from either of us, tempers flared and we ended up saying hurtful things neither of us meant.
“Leave me alone! You don’t love me anymore. Divorce me!”
“I don’t want a divorce. I just want you to put on a clean shirt.”
We loved each other and our marriage would not come to an end over table manners and wardrobe issues. But anger, frustration, resentment and hurtful words were taking a terrible toll. I made every sort of adjustment and concession to avoid trouble, which meant we no longer talked about or did some of the things we’d once enjoyed together.
The problems we were dealing with escalated so quickly that by the late summer of 2007 I was convinced that some medical condition was causing these changes. I didn’t think it was an onset of Alzheimer’s because he wasn’t particularly forgetful. He followed the stock market as avidly as ever, and handled our finances well. He loved language and was skillful with words, although his handwriting was no longer as legible. Letters and numbers were ill formed and cramped. Occasionally there was a bit of inappropriate behavior, but it seemed to have more to do with a physical struggle than a mental disconnect. I traced the difficulties back to the head injury in Italy, but Geoff insisted the wound had healed and refused to see a doctor.
One afternoon I glanced out the window, horrified to see Geoff on the street in bare feet, half-dressed, trying to open our mailbox. He was tugging at the key with one hand and almost fell backward into the street when the latch suddenly opened. Then he reached into the box and grabbed the mail with one hand, dropping half of it on the pavement.
I flew down the stairs and raced outside, furious with him. I picked up the mail, grabbed the key, slammed the box closed and herded Geoff back inside. He couldn’t understand why I was so upset that he’d walked out of the house and onto a public street wearing nothing more than Fruit-of-the-Looms and a skimpy robe flapping open. But then it occurred to me that he’d become so frustrated trying to get dressed that he’d just given up. All he wanted to do was get the mail, another routine task that had become difficult for him. He had to keep his balance while working the key in the lock, opening the latch and juggling an armload of mail, all using one hand. From then on it was my job to get the mail in the afternoon and fetch the newspapers in the morning.
Geoff and I belonged to a health club that we regularly attended together. While I worked out, Geoff would occupy a treadmill at “stroll” speed and watch reruns of “The Rockford Files.” One evening, he came out of the men’s changing room half-dressed because he couldn’t get his pants buttoned and zipped. He stood leaning against the wall in the reception area, his pants hanging on his hips, waiting for me to come out of the women’s locker room to help him. I was appalled that he was so oblivious of the people around him. I hustled him into a nearby exercise room and helped him get dressed.
“You have to remember who you are, and where you are . . . you have to be more aware, Geoff.”
He started laughing, “Are you aware you have your hands on my crotch?”
I looked around the mirrored room and realized everyone passing by could see me on my knees struggling with his zipper. I laughed along with him.
More worrying were the mobility and balance problems that were causing frequent falls and injuries. One night, after a dinner party in the upper garden, Geoff fell while trying to put the cover back on the grill. I was in the kitchen washing up and assumed Geoff was clearing the bar area and listening to a jazz CD. It had long been our custom, once guests left and the cleaning up done, to sit at the candlelit table having a last glass of wine and listening to music.
When I finished washing up, I went to the upper garden carrying two glasses of wine. But as I made my way up the steps, I saw trails of blood and bloody footprints. I looked around, calling his name, then raced across the little bridge connecting the garden to our bedroom. There were splotches of blood everywhere on the carpet and doorway.
Geoff was in the bathroom running water in the sink. As soon as he saw me, he said, “I’m sorry I made a mess. I was hoping to clean it up.” His cheek, knees, hands and arms were bloody from cuts and scrapes.
“But you should have called me!”
“I don’t need you to get mad at me.”
“I’m not mad. You’re hurt. I could have helped you.”
“I didn’t want to bother you.”
He’d lost a lot of blood and I was afraid he might go into shock. I told him I was going to call the paramedics. He wouldn’t allow it. I asked if he’d bumped his head. He said he hadn’t. I helped him into a chair so I could check his injuries and clean him up.
“What happened? Do you remember how you fell?”
“I tripped . . . had trouble getting up.”
I remembered seeing an overturned patio chair and realized he must have used it while struggling to get back on his feet. Every conceivable scenario flashed before my eyes—he could have blacked out, fallen in the pool, slipped on the stone steps and broken bones. He was trembling and I was certain the “what ifs” were on his mind, too.
After cleaning him up, I determined that the cuts and scrapes were superficial but I was still concerned he might have other injuries I wasn’t aware of. I suggested we sit on the couch for a while and calm ourselves. He still seemed shaky and I wanted to make sure he wasn’t feeling dizzy or ill before I helped him to bed. We held hands and talked, neither of us mentioning any worries about Geoff’s mobility problems and frequent falls.
Oddly enough, we started talking about traveling again, perhaps out of an unconscious desire to distance ourselves from more immediate concerns. In any case, a frivolous, late-night chat led to plans for a visit to the Greek Isles.