by Africa Fine
1. Educate yourself about the disease.
2. Learn care-giving techniques.
3. Understand the experience of your loved one.
4. Avoid caregiver burnout.
5. Maintain your own physical and mental health.
6. Discuss the situation with family and friends.
7. Do cognitive stimulation activities with your loved one.
8. Foster communication with physicians.
9. Take care of financial, legal, and long-term care planning issues.
10. Smile.
11. Think positive.
12. Reach out for help.
I figured I had number one, two, five, six, eight, and twelve under control. I placed numbers three, four, seven, and nine at the top of my to-do list. Number eleven seemed like a stretch, and I wasn’t sure I was capable of number nine. These last two seemed to require a closer, more intimate relationship than Aunt Gillian and I had ever enjoyed. I wasn’t sure we had the time or the willingness to change that now.
I closed the folder and looked out past the beach to the still water. I had never thought of my aunt as a mother, even though she was the only one I’d ever known. She had always been a reminder of everything I wasn’t. She never stopped showing me in ways obvious and less so that I was a disappointment. Now she had taken over my life, and I had to admit that I resented it. My career was going well, I had lost the weight, and I was settling into a comfortable, if sometimes lonely, routine. Then she fell, moved to Florida and became the center of my world. I wished that everything could be the way it was, but I knew that was impossible. What I didn’t know was how I was going to face the future, which most certainly would include Aunt Gillian. She and I were connected by blood and by necessity.
Until this moment, some part of me had thought of Aunt Gillian’s moving in with me as a temporary solution. I hadn’t considered what the permanent answer would be, but a combination of warm, salty air, the smells of an Italian café, and a twelve-item list from a web site made it clear that Aunt Gillian was here. For good. The question was, now what?
Aunt Gillian was quiet the evening before our appointment with Dr. Ortiz. I had been trying to improve her diet, cooking meals that combined something sinful (fried chicken, meatloaf, buttery mashed potatoes) with more healthy fare (salads, steamed vegetables, whole-wheat pasta). When she was feeling ornery, my aunt complained about the healthy food and said it tasted like cardboard. When she was feeling charitable, she tasted small amounts of it and left most of it to the side. Tonight, I had forgotten to stop at the grocery store, and all we had in the house were tomato soup and the makings of a salad. I served this without comment, waiting for Aunt Gillian’s negative reaction.
We sat down and she began to eat.
“You like tomato soup?” I knew I should have left well enough alone, but her calm alarmed me. I wanted to pick a fight so she would get back to being her cranky self.
She just shrugged. “It’s as good as anything, I suppose.”
“When I was a kid, you hated tomato soup.”
She didn’t even raise her head to look at me when she spoke.
“That was a long time ago.”
There had not been many times in my life when Aunt Gillian refused to take the bait for a fight. I changed tactics.
“How was Elaine today?”
Elaine St. Cyr was a home-care nurse recommended by Dr. Ortiz. She was young, just twenty-five years old, but she had an air of efficiency that I’d liked when we interviewed her. She charmed me when we met, with her light Haitian accent and her tendency to laugh with her mouth wide open and her head thrown back. When she arrived at our door, I vowed to call Dr. Ortiz for another recommendation, mostly because Elaine was gorgeous. She was tall and I had to look up at her. She had the kind of creamy caramel skin my aunt had always admired (while expressing dismay at my own dark complexion), and her long, braided hair was sandy at the roots.
Elaine looked as if she could have been on the cover of Vogue instead of standing in my foyer in bright pink scrubs and Nike sneakers with a matching pink swoosh. Add the fact that she had perfect teeth and model-quality cheekbones, and I was prepared to loathe her.
But she won me over. When Aunt Gillian came into the room, her look of disdain and superiority at the ready, Elaine won her over as well by complimenting her on her drab housedress and asking her about the old days at Howard, where, it turned out, Elaine had always wanted to go to college.
While I quizzed Elaine from my long list of interview questions, my aunt beamed at her, and I soon surrendered to their girlish bonding. I had expected Aunt Gillian to resist the idea of a day nurse, but she was receptive to Elaine. I suspected that she saw herself in the young nurse. In many ways, Elaine was the person Aunt Gillian had planned to be, before she met Jeremiah and everything changed.
Elaine had been with us for about a week before we saw Dr. Ortiz. When I mentioned her name, Aunt Gillian raised her head and smiled.
“Elaine is a lovely girl. She went to Howard, you know.”
I debated whether I should correct her or not. At our first meeting, Elaine told me that she had wanted to go to Howard, but her family had no money to send her, and she couldn’t quit her job to return to school. There were brothers and sisters left behind in Haiti who battled daily to find food and safety amid the civil unrest there. They needed her.
I decided it didn’t matter. If it made Aunt Gillian feel good to believe certain things about Elaine, what harm could there be?
“Yes. She’s very smart. Is she nice to you?”
I made a point of asking my aunt about Elaine each day. I had heard so many horror stories about how home-care health providers could abuse their patients without family members even knowing until it was too late. I had a good feeling about Elaine, but it didn’t hurt to double-check.
“She’s nicer than you. She wouldn’t make me eat tomato soup, knowing I hate it,” my aunt snapped.
I smiled. “Good. That’s good.”
Jack had asked to come with us the next day, but I told him I thought it would be better for my aunt if just the two of us went. In truth, I thought it would be better for me, since there was still some tension between Jack and me since our tense exchange about my calling Dr. Ortiz Tim. I knew this wasn’t supposed to be about me, that I should be thinking about my aunt first, and I knew she would be fine having Jack there. But I wasn’t quite that selfless, and I asked him to stay away.
Chapter 20
“Sweet dreams”
The actual moment of diagnosis was anticlimactic. It confirmed what we already knew, giving a name to what we already lived with every day.
It was the early stage of Alzheimer’s, Dr. Ortiz told us, looking into Aunt Gillian’s eyes as he spoke. There were new treatments, ways to slow the disease’s advancement. We had options, he said. He handed both of us a copy of the Alzheimer’s Foundation of America brochure that I’d already downloaded from the web. I pretended to read it, but Aunt Gillian set hers aside without even glancing at the cover.
“There’s no cure.”
She held Dr. Ortiz’s gaze for a few moments. She wanted him to say it aloud, to utter the truth into the room so it could not be denied. She didn’t want to hear about options, treatments that would prolong what was unavoidable. Her back was straight and stiff. I realized that she was more aware of, and perhaps more horrified by, the changes in herself than I’d given her credit for.
“No. No cure.”
She nodded and picked up the brochure, fanning herself in a slow, rhythmic motion as if the room had grown warm. We sat there for a long time, listening while Dr. Ortiz displayed a remarkable optimism, outlining all the options he envisioned for Aunt Gillian’s care. I was diligent, taking notes and asking the right questions. All the while, Aunt Gillian sat still but for the slow movement of her hand, fanning, fanning.
* * *
For the rest of the week after Aunt Gillian’s diagnosis, we wandered around wi
thout much sense of purpose. It seemed things should change, or that there should be action taken. But I was already doing everything that could be done at that time. Now, I was trying to figure out how I would manage life with Alzheimer’s.
On Sunday, Jack called me. I was reading through one of my fall textbooks, and when I answered the phone, I realized I had no idea what I’d just read.
“We should take a trip.”
I frowned. “A trip? Now? You want me to leave my aunt after she just found out she has Alzheimer’s?”
“No, I mean with Gill.”
“So you’re suggesting that the three of us go somewhere. Together. Now. Have you been drinking?”
He laughed. “Seriously. We could go somewhere fun. Somewhere we’ve never been.”
“I don’t think it’s a good idea. I mean, a trip isn’t going to change anything.”
I knew I was being stubborn, but I felt as if I had no energy since the doctor’s visit. It was all I could do to just cook and keep my aunt on some kind of schedule. I couldn’t imagine planning a trip.
“Of course, it won’t change anything. But it would take your mind off things for a while.” He paused. “It would take her mind off things.”
Selfish. That’s what I had been these past few days, thinking only of how this affected me, not focusing on how devastating it must be to my independent, headstrong aunt.
“So it’s not just about me, then?” I tried to make a joke, but it fell flat.
Jack’s voice was soft. “It is about you, and Gill. I think the trip will be good for both of you.”
I didn’t answer.
“Come on, Tina. I’ll plan everything. I’ll even pack your luggage.”
I had to laugh. “Sounds like an offer I can’t refuse.”
Jack developed the list of criteria for our trip: on the American continent; reachable within four hours; somewhere none of us had ever been; reservations could be made to travel within the week; and it had to be fun. Niagara Falls was the only place that fit.
I objected. “Isn’t that kind of touristy?” I said when Jack showed me the brochures.
“We are tourists.”
Aunt Gillian clapped her hands like a girl when we told her.
“I always wanted to go to Niagara. Jeremiah promised to take me, but he never did. But you’re a better man than him, so you’ll take me. And I think I’ll ride in one of those barrels.”
Jack and I exchanged skeptical looks. The idea of my aunt going down the falls in a barrel was both horrifying and hilarious. He smiled at her.
“So Niagara Falls it is!”
I shook my head and looked at the top flyer. It advertised the Oh! Canada Eh? Dinner Show. I read aloud.
“You’ll meet singing Mounties, lumberjacks, and Klondike Kitty. Klondike Kitty sounds a little dirty, doesn’t it?”
Aunt Gillian swatted at me. “Keep your mind out of the gutter, Ernestine. Jack is not that kind of man.”
He cackled and I shook my head.
“This is going to be a fun weekend, right, Gill?”
She wound her arms through his and gave me a smug look.
“Right, Jack.”
* * *
He planned our trip down to the hour. It was to be a quick trip, just a weekend. We both thought it best that we keep it short, since Aunt Gillian could be unpredictable. The next Friday, we flew from Miami to Buffalo, then drove to Canada. We decided first-class would be a better option, albeit expensive.
On the airplane, Aunt Gillian slept for the first hour of the trip. Then she awoke, wondering in a loud voice where she was and why it was so noisy. We had taken a late flight, thinking she would sleep in the dark. The airplane was completely quiet before she awoke. I couldn’t meet the eyes of the other passengers seated near us as I tried to calm her down. In desperation, Jack flagged the flight attendant, ordered a vodka and orange juice, and fed Aunt Gillian sips until she nodded off.
After the crisis was averted, Jack resumed the position he had adopted as soon as we sat down. Stiff arms ending in hands grasping both arm rests, eyes narrowed and staring straight ahead, teeth clenched.
“You’re afraid of flying?” I leaned across the aisle, whispering.
His shoulders twitched. I thought it might be a shrug.
“I wouldn’t say I was afraid.”
“What would you say?”
He glanced at me. “I get airsick.”
I considered this. When he came to Cleveland to help me with my aunt, we had taken separate flights. But on our first date, he had planned to take me up in a small plane, a plane so small it had a propeller. If that didn’t make him sick, I don’t know what would.
“What about that little plane you used to have? What did you call it? Elsie? Ellen?”
He frowned at me. “Eleanor. That’s completely different.”
“How so?”
He sighed. “When I got sick in Eleanor, no one was there to see it. This plane is full of witnesses.”
I laughed. “And I thought you were mad at me for throwing up all over Eleanor.”
He managed a tight smile. “I was just glad you threw up before I did.”
Something occurred to me. Jack was the one who had suggested this trip. A three-and-a-half-hour flight, all for me and Aunt Gillian. He knew he would feel ill the entire time, and he never once said anything. And then all he had to look forward to was a weekend with a sick old woman and me, struggling to figure out what to do about it all. Any other man would have run the other way. But Jack was here, the skin on his knuckles taut, his teeth grinding, buying drinks to pacify Aunt Gillian.
“Why are you staring at me?” he growled.
I looked over at my aunt, who was snoring softly, slumped back in her seat. I looked back at Jack.
“Thanks for this.”
“For what?”
“The trip. For always knowing the right thing to do.”
Our eyes met and held. I thought he might say something to explain why he was always there when I needed him. I let myself daydream that it was about more than friendship. He looked away first.
“It’s no big deal. I always wanted to see the Falls.”
Since we booked our trip at the last minute, we didn’t have many choices for hotels. We chose a Victorian bed-and-breakfast near the Horseshoe Falls because it was the only place that had two rooms available. Each of the rooms had only king-sized beds and seemed to be designed more for couples on a “special getaway” than a woman, her platonic male friend, and her senile aunt with an attitude problem. Under different circumstances, the house, with its bright yellow paint, heavy red velvet drapes, and aged wood floors might have been romantic. In our case, we just agreed that Aunt Gillian and I would share a bed. We put away our clothes and went out to see Horseshoe Falls.
* * *
When we woke up Saturday morning, the sky was cerulean and the air was crisp and cool. It was a welcome change from Florida in August, where humidity was the rule and we spent summer days hopping from one air-conditioned location to another. The Florida sun was bright but brutal, lulling me into the hope of outdoor relaxation, then slapping me in the face with its heat.
That late summer day in Niagara, the sun seemed to make a promise it would keep, vowing to warm us under the sixty-five degree air and the mist from the falls. We awoke early that day, and it was a good day for Aunt Gillian. She was talkative and smiling, even though she kept insisting that she wanted to ride the falls in a barrel.
“Before we look into the barrels, how about a visit to the botanical gardens?” Jack suggested.
“Do they have roses? I love roses. That’s Ernestine’s middle name, you know.”
I frowned at the use of my full name and Jack grinned at me.
“Ernestine, could you check to see if they have roses?”
I snatched the sheaf of papers from his hand.
“The visitor may schedule an overall view of a great variety of gardens in an afternoon self-guided tour,
or may linger for days or even weeks to savor the subtleties of the plant world as seen in the herb garden, the vegetable garden, the rose garden, or the splendid arboretum, embracing one of Canada’s finest collections of several hundred trees and shrubs,” I read from the tourism website printout.
She nodded. “I knew it. Jack always knows the best places to go.” She grabbed her purse. “Well, Ernestine, are you ready?”
I stuck my tongue out at Jack. “I’m ready, Aunt Gillian.”
I was not the kind of girl who knew the names of birds and flowers, who knew the cuts of diamonds, who understood the difference between taffeta and satin. So I was surprised at how much I enjoyed the botanical gardens. Aunt Gillian went straight for the roses and Jack and I wandered off to the nearby herb garden, which smelled of oregano and basil, reminding me of a sumptuous Italian meal, maybe angel-hair pasta in an olive oil and herb sauce, or a many-layered lasagna smothered in marinara.
Jack took a deep breath. “Smells like an Italian restaurant here,” he said, closing his eyes. “A good one.”
I smiled. “All we need is some garlic bread and a bottle of red wine.”
“Merlot?”
“Shiraz.”
Jack bent over to look at one of the batches of herbs. He breathed in, closing his eyes again, and I watched him for a moment. He looked so peaceful, the lines of his jaw relaxed.
He held out his hand behind him.
“Come smell this.”
He wiggled his fingers, so I took his hand and let him draw me closer. His citrus smell mixed with the fragrance of the herbs. I held my breath for a moment, wanting to savor the feel of his hand against mine. His palm was smooth and his fingers tangled firmly with mine.
“Isn’t this great?”
I knew he was talking about the herbs. I let out my breath and nodded.
“Yes, it’s great.”
Then we heard Aunt Gillian calling. “Jack. Come see these tea roses.”
We walked toward her voice, our hands still entwined.