Sometimes when there’s a pause in her tedious daily ritual, when someone else is tending to her husband’s many needs, when she has a moment to reflect on this strange and occasionally terrifying place where she’s landed after 53 years of marriage, Ethel Lyon shuts the door in one of Apartment D-203’s two small bedrooms and cries.
“It’s not easy seeing someone you love very much go downhill,” she said during a recent interview there, “not easy at all.”
Bill Lyon, the former Inquirer columnist, is battling Alzheimer’s and a neurological affliction that makes his hands shake like tuning forks. And Ethel, his 73-year-old wife, a blunt and simple woman who never really wanted to leave rural Illinois for this “concrete city,” who practically raised two sons alone while her husband was on the road mining poetry from “football, baseball, and all that other crap,” is his primary caregiver.
Her tasks have grown more difficult — physically and emotionally — as Bill, nearing 80, an age he terms “the last exit on the highway,” continues his slow deterioration.
Mentally, he can still occasionally turn a phrase, still focus, though for ever-shorter periods. Physically, he can’t do much. Can’t type, or walk without help. Even drinking coffee is a challenge.
And so it’s his barely 5-foot, 84-pound wife — “my guardian angel,” he says — who gets him through each day at Wesley Enhanced Living Main Line, a senior-care facility situated alongside a golf course and atop a picturesque hill on a Marple Township street with the cruelly ironic name of Halcyon Drive.
Like so many elderly in 2017, Ethel must be a nurse, psychologist, orderly, cook, chauffeur, and companion to an ailing spouse, tasks made more difficult and frustrating by the degenerative mental affliction her husband calls “Al.”
She doesn’t resent her role. In some ways, in fact, this woman who grew up with six older brothers relishes it.
“I’ve always been a take-charge person, even as a kid,” she said. “I took charge of my brothers. I was a tomboy who didn’t take anything from anybody.”
So she rises now at 7:30 a.m. She dresses and showers and then does the same for her husband. She makes him breakfast — heavier silverware still allows him to feed himself while a straw makes coffee-drinking easier. Then she starts with his regimen of pills, including a new medication — the lyrically named carbidopa-levodopa — aimed at stilling the tremors.
“It began with one pill,” Bill said. “Now it’s up to a billion gazillion.”
If there are doctors’ appointments, and after decades of avoiding them he now has many, she drives. There are occasional visits from friends, their two sons, two grandsons, and a great-grandson. (“We don’t do the Y chromosome,” joked Bill.)
Sometimes he falls. She helps him on the long, slow, back-and-forth trips to the dining room for lunch and dinner. They watch television until the Johnny Carson reruns he loves as much now as when he first saw them end at 11. Then she gets him ready for bed. It doesn’t end when she’s tucked him in.
During the night, he needs help with several “pit stops.” And though he doesn’t know it, she “gets up three or four times to go in and check on him.”
While the staff provides assistance, there is not much time for herself, not many escapes. She stopped smoking years ago during prolonged bouts with emphysema and stage four bladder cancer. She no longer goes to bingo at St. Pius X in Broomall, where she liked to sit in an auditorium corner, smoke, and peruse her many cards. Her only break comes on Saturdays when a son, Jim, spells her and she can catch a movie with friends or visit Harrah’s Casino in Chester.
“Being a caretaker isn’t easy. It’s demanding,” she said. “But it’s a labor of love. I’ll put it this way: I was quite ill when I was younger and he took care of me. It’s my turn now.”
The backbreaking routine isn’t completely alien to someone raised adjacent to a farm in Champaign, Ill. But milking cows doesn’t generate the kind of frustration caring for an Alzheimer’s victim does.
“The main thing is patience, which I don’t usually have,” she said. “Every once in a while I find myself getting frustrated. I just go into the other room, close the door and go `GRRRRR!’ It gets it out of my system. I’ll take a walk and say: `You’ve got to stop this. You can’t let him see you do this. You can’t be yelling at him. You have to decompress.’ My emotions do get into it. Anybody who says they don’t isn’t human.”
Ethel was working in the photographers’ dark room at the Champaign News-Gazette in 1964 when she met her future husband, a lanky sportswriter.
“He came in one day and wanted a picture developed. So I did that and the next day he asked me out. I told him no. Three times — no, no, no. Finally he came over to my house and I said, `All right, I give in.’ He wouldn’t leave me alone.”
That was in July. On Nov. 6, they were married.
As her husband’s career blossomed, they moved from Champaign to Evansville, Ind.; to Belleville, Ill.; back to Champaign, and then, finally, to Philadelphia. When she learned he might take a job at the Inquirer, Ethel made it known she “wasn’t moving to any concrete city.”
But a tour of the area sold her on Marple. They lived in a Marple Woods townhouse before moving into the Cherry Hill Lane split-level they occupied for 43 years.
“I said, `This is OK,’ ” she recalled, “as long as I don’t have to live in the city.’ When we moved in [to Cherry Hill Lane] I told him, `The next time you move me, it’ll be into the ground.”
For much of their time in the house, Bill was on the road. They once figured out that his job kept him away six months a year. Ethel quit working to care for their sons. She was the handyman, the overseer, the disciplinarian.
“We had a saying,” Bill remembered, “`Let Ethel do it.’ I couldn’t have done it without her.”
Among her hardest chores, she said, was helping her husband make the transition to the assisted-living facility. Her husband called it “emotionally wrenching.” He withdrew into himself, his eyes always downcast, even in the crowded dining room.
Before the move, writing about his illness helped, and the residents love to hear the stories he’d accumulated as one of America’s most respected sports columnists.
“He used to sit around, wouldn’t talk,” she said. “In writing about Al and communicating with everyone, it’s done a miracle for Bill. We have this group at dinner that Bill calls the Corral. It started out with just four of us who would sit down after dinner and talk. Now there’s about 13 or 14. He holds his head up high, talks to everyone, laughs, jokes around. It’s kept him going.”
At about 7:30, Ethel tells her husband to wrap up the stories. They excuse themselves and walk to an elevator. On the second floor, they exit and move slowly to D-203, in the middle of a long hallway.
As another day nears its end, her husband realizes that the highway exit he jokes about probably isn’t far away. But Ethel doesn’t see it. She’s much too busy to look.