*Primary Progressive Aphasia, a degeneration of the part of the brain that affects speech.

Monday, April 9, 2012


My suitcase lies open and empty on the bed in our spare bedroom. Clothing, all black, to make wardrobe accessories easier, are in small stacks surrounding the bag.

It’s been a year since my last trip to Boston to see my daughter Faith, and it was 16 months ago when I travelled to the West Coast to visit my other daughter, Jill. There was a point I’d fly to either coast three times a year. Often enough, I figured, so my grandchildren would know me in the flesh, not merely as an iChat image.

“Honey,” was how my trips typically began with my husband. “I miss my kids.”

Tommy, a stepfather who believed three times a year was more than enough, would need coaxing. While I’d be content to shadow my family, he’d need a break from that togetherness. If the target was Boston, my husband would agree to join me because he liked the city’s easy public transport that allowed us to tour on our own.

L.A. was another story. “Sun, golf,” I’d offer.

“No, I’ll stay home and take care of the dog,” he’d say. I knew Tommy didn’t like the city’s sprawl, and since neither he nor I were brave enough to risk its roads in a rental, he hated being dependent on others for sightseeing.

But, the three-times-a-year timetable, and my husband’s voiced responses to any trips, dissolved after his condition worsened. Today, Tommy can barely get a word out, communicating with clues written on post-it notes.

“You’ve got to find some way to travel,” Jill had said. “It’s been over a year since you’ve been here. Look into home health agencies.”

I did, and was relieved when Tommy didn’t object to an aide taking over for me one day a week. With her in place, I started to make plans for a four-day trip to Los Angeles.

Along with the aide, I enlisted our dog walker/house sitter to sleep over for the nights I’d be gone. Because she’d be at her job during the day, I asked two of my cousins to take Tommy to lunch a few times. My ex-husband said he’d visit on one of Tommy’s unscheduled days. Neighbors volunteered to pop in and out. All were instructed to call me after their shifts, to let me know Tommy and the dog were okay, and to convey post-it note questions.

I was covered. I bought airline tickets. I placed the suitcase and black wardrobe on the bed, and added a bathing suit and sandals.

Several days before I was to fly ORD to LAX, I called my daughter. “I’m worried,” I said, “Tommy sometimes gags when he eats. I think it’s a side affect of his condition. Something about the part of the brain that screws up his speech messes with swallowing.”

“Mom, when did that start?” Jill asked.

I was embarrassed. “Actually, a few weeks ago,” I said. “When I see it happening, I tell him to take small bites, put the fork down between mouthfuls. But now...”

My daughter interrupted, “Mom, you can’t let him eat alone when you’re gone.”

I called the home health agency. “Can you send aides to monitor his mealtimes?” I asked.

“All set,” I told my daughter.

Then, I thought about it. I imagined Tommy confused in that whirlpool of caregivers. I worried -- even with all those overseers in place -- would one remind him to take his daily medications, especially the thyroid pills? Would another ask him to smile, as I do every morning, to be sure he’s inserted his dental bridge? Would another check the kitchen sink to make sure he’s turned off the faucets, and the front door to confirm he’s removed his keys from the lock? And would his meal companions be vigilant?

And what if he was frightened and wanted me home?

“Canceling,” I texted Jill.

“What happened?” she asked in the phone call that followed.

“I can’t leave him,” I said.

“I thought you had your team in place.”

“I don’t know what I was thinking,” I said. “He could never handle it.”

I could never handle it. I couldn’t relax in my bathing suit at poolside. I couldn’t enjoy my grandsons’ faces or antics. I couldn’t devour time with my daughter. My head would be back in Chicago, worrying about my husband. I’d startle at the ping of a text or ring of a cell, wondering if the news would calm or scare me.

The empty suitcase remains on the bed. Instead of returning the clothing to closets and dresser drawers, I’m plucking them one by one for my daily wardrobe. Eventually, only the empty suitcase will remain. And, for now, me.

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