This is what you look for in a hospice patient: the brow must be untroubled. Smooth, free of lines. There should be no grimacing. The face of the patient must be serene, peaceful.Read More
It’s 8:45 in the morning and I’m at the living room window watching my husband enter the passenger side of a car that is not mine.
The driver is an attractive young woman. In some other scenario, I’d be the jealous wife, tearful at Tommy’s choice of a new companion. But since this is my life, and the driver is my aide, my feelings are of relief, not wrath.
Hiring someone to spell me from full-time chauffeuring was sparked some months ago by directives from friends and relatives. “Be sure to take care of yourself,” they had said when they learned of my full-time responsibilities. Primary progressive aphasia, a brain degeneration that has shattered my husband's speech, has also changed me into his interpreter, advocate, and guardian.
To be honest, when I first heard that “take care of yourself” advice, I thought, easy for you to say. That sounds petulant, I know, but I wondered how I could do that with my home and work responsibilities, our budget, and my stubborn spouse.
Then, I had a second thought: I deserve it. So, I decided if I could be untethered from driving, let’s say, by arranging a substitute for the three days I ferry my husband back and forth to the YMCA, I could count that as fulfilling my loved ones’ order.
I went online and booked a taxi that would pick up Tommy at 8:45 in the morning on Mondays, Wednesdays, and Fridays, and drop him at the Y at 9. Then return at 11:45 to get him from the coffee shop around the corner of the Y. I arranged a month of these round trips.
“Honey,” I said on that day before my first day of Taking Care of Myself, “I’m going to a spa early tomorrow. A taxi will be outside at 8:45 to drive you to the Y. Be sure to be downstairs.”
“Okay,” he said. He looked glum.
The next day I left the house early. Tommy was still asleep awaiting his own alarm. Off to the spa I went. First a massage, than to my locker to change for more pampering. As soon as I twirled the combination lock, I heard my iPhone ringing. This was not a welcome sound.
“Come home!” Tommy struggled to get out. (He still had words back then.) I looked at my watch, it was 9:15.
“Honey, what are you doing home?” I said. “Didn’t the cab arrive to get you?”
“Come home!” he repeated. “The cab left!” This is what I figured: the cab arrived at 8:45 as ordered; Tommy was slow getting downstairs. The driver may have phoned the house, but Tommy didn’t pick up. The driver left.
“I’ll be there as fast as I can,” I said. As I raced past the receptionist, I tossed, “cancel my next appointment.”
“No cabs!” Tommy said as soon as I walked in the door.
“No, no more cabs,” I said. I went online and deleted the remainder of the taxi drives.
I returned to full-time chauffeuring until recently when I decided to try again. But, not with a cabbie. And this time, I was less ambitious and sought only one day off, not three.
The job description I dictated to everyone I knew went something like this: Wanted, male or female to spell me one day per week. Own auto essential. Medical background a plus. Patience a must.
Enter the attractive young woman who met all my requirements. When I first introduced this new chauffeur to my husband, he gave her two thumbs up.
Today, with Tommy's comely driver at the wheel, I've elected to use my three hours to stay home. I will not shower, nor put on make-up. I will dress in sweats, sans underwear. I will not leave the house or get into a car. I will not drive back and forth, back and forth. I will not watch over anyone but me, and the dog.
That's Step One in Taking Care of Myself. For Step Two, I will go back online and schedule a taxi cab to pick me up on a day my husband will be tucked in for a long morning nap.
I will be downstairs on time and give the cabbie -- who is a driver that is not me -- the address of the spa I had abandoned all those months ago. I will head to the receptionist's desk and once again book a massage, a manicure, and a pedicure. And as I luxuriate, I will pray that my iPhone keeps her mouth shut.
Tommy can bench press his own weight. He’s been a member of the Lakeview YMCA for 40 years -- showing up every Monday, Wednesday, and Friday. At first, he was in the 6:00 p.m. crowd, then after retiring, 9:00 in the morning. I credit my 76-year-old husband’s great physical shape to this dedication.
On one recent morning, I was leading the way through the kitchen to the garage to drive Tommy to the Y. He was following behind, zipping his coat, donning his knit cap with the Bears logo, and hoisting a gym bag to his shoulder. As I passed the counter where he stows his eyeglasses and cellphone, I noticed something was missing.
“Honey,” I said, turning to catch my husband’s attention. “Where’s the medical ID band I bought for you?”
Tommy has Primary Progressive Aphasia, a condition that affects the brain’s language center. It has left him barely able to speak. The band’s metal plate is engraved with my husband’s name, his illness, and my cell phone number.
He was diagnosed in 2009, but it wasn’t until a few weeks ago his illness caused a panic: Tommy got lost on a trip downtown. I was able to rescue him because he handed his cellphone to someone who told me where he was. I realized then, to keep my husband safe, he’d need to wear a medical ID bracelet.
I wanted Tommy to wear the band everywhere, including the Y. Although he has been a regular for so many years, there’s no guarantee he’d be known. Employees leave, members drop out, and his speech problems make it unlikely he’s met new people. My worst scenario: Tommy injured, unable to say his name or mine. A crowd coming to his rescue. “I think his name is Bill,” someone says. “But I have no idea his last name.”
Now the band with his name, the diagnosis, and my phone number, was missing. I didn’t see it on his wrist. It was not on the counter where his other accessories awaited him.
“Where’s the band?” I asked again.
Tommy pointed to the front hallway. I reversed directions and headed for the straw basket that sits under the table. That’s where we toss advertising flyers and unwanted mail.
“Did you throw it out?” I asked.
Another “no.” He opened one of the table’s drawers and pointed to the medical ID band stuffed inside.
“Honey,” I said, “you have to wear this.” I retrieved the band from where it mingled with extra keys, a rack-like tool we use to groom the dog, tubes of Chapstick, abandoned sunglasses, and other detritus.
I handed the band to Tommy and we continued our exit to the door. Once seated in the car, I turned to him in the passenger seat. “Is it uncomfortable?” I asked. “Is that why you don’t want to wear it?” He nodded “yes.”
“Well, only wear it when you leave the house,” I said.
The next morning, Tommy’s reading glasses and cellphone were in their usual place, but no medical ID band. He hadn’t worn it to bed. It wasn’t on his bedside table, nor in the bathroom. I searched the hallway table drawer. I searched the kitchen. I found the band on the counter, hidden behind a giant-sized jar of dog vitamins.
I didn’t ask Tommy why he refuses to wear the band to the Y. I think I’ve figured it out. The gym is his sanctuary, free of a hovering wife. It is the place where he doesn’t have to talk, where he is proud of his three times a week attendance, and routine of 33 minutes on the elliptical, then 20 minutes of weight lifting. At the Y, he is a strongman, not someone needing a medical ID bracelet.
Later that day I called the executive director of the Y. I told her Tommy’s diagnosis. I gave her my cellphone number. “Thank you so much,” she said. “I’ll put the information in Tom’s file and make sure the staff knows who he is, and his condition. I really appreciate your sharing this.”
Tommy is strong; I’m shaping up.