The Color of Love

by Marra B. Gad

  I had never felt as trapped or helpless as I did on that plane. But all I could do was my best under extraordinary and unfortunate circumstances. When we boarded, I knew that the flight attendants and my fellow passengers assumed I was a professional caregiver, employed to take care of Nette in this way. Little did they know that I was far from it. As she was belted in, I was free to move about the cabin. I immediately made my way to each row, explaining the situation to my fellow cabinmates. “My aunt has Alzheimer’s, and her medication is not working properly,” I told them. “I apologize, as we are sure to interrupt the quiet on this flight. I appreciate your understanding.” Row after row, I did my best to lay the groundwork for as much peace and patience as possible. For all of us.

  Although it was only 10:30 a.m., one of the flight attendants offered me a scotch when I got back to my seat.

  “Here, honey,” she said, “I think you’re going to need this.”

  “Thanks so much, but no. I’ll be fine,” I told her. “We will be just fine, won’t we, Aunt Nette?”

  “Do not let this stranger talk to me!” Nette pleaded to the flight attendant. OK. Not fine.

  The flight attendant looked at me, both compassionately and slightly incredulously, as if to say, “Are you sure you don’t want a drink?” But I declined again, thinking it would be best to have all of my wits about me.

  About halfway through the flight, Nette had to go to the bathroom.

  “I have to make pee-pee and poo-poo,” she told me. “Pretty lady, I have to make.” I never quite grew accustomed to hearing Nette speak in a language different from the clipped, condescending tone she had always used with me. At least I was “pretty lady” this time.

  “May I help you?” I asked her. “I think you might need some help, and I would really love to help you. My name is Marra.”

  By some small miracle, I managed to get her to agree to let me help her into the tiny airplane lavatory and settle her onto the toilet, but before she could actually sit down—yes, with the lavatory door slightly ajar since we both could not fit into the small space and close the door—she lost control of her bowels. And it went absolutely everywhere.

  Somehow, she managed to avoid getting it on her pants, but the need to clean both her and the bathroom cannot be understated. I took a look around. There was no space and there were no resources to do a proper job of cleaning. She began to cry. And so did I.

  “I’m sorry,” she cried. Tears ran down her cheeks. It was heartbreaking.

  “It’s OK,” I said, trying in vain to wipe away my own tears. “It’s not your fault. I’ll clean you up and everything will be OK.” And I went about the business of cleaning her up as one does a child who accidentally soils herself, all the while whispering that it was all going to be OK and that it wasn’t her fault. Because it wasn’t. My only resource was the cheap, single-ply toilet paper that disintegrates when water hits it, but I did the best I could.

  I could feel all the eyes in the first-class cabin upon me, from passengers to flight attendants, as I put Nette back in her seat. I then went about the task, on my hands and knees, of trying to clean up the mess left in the lavatory. And I did it without gloves. Usually, I don’t even wash dishes without gloves, but there I was. Gloveless. And cleaning the airplane bathroom.

  It would not have been fair to expect the flight attendants to do it, and they did not offer. They gave me what they could—cloth napkins from the lunch trays and the warm towels that are handed out just after takeoff—and stood by, watching.

  The job was absolutely mine. I had taken it on when I had decided that the goal was to move Nette to Chicago, and this was now a part of that job. I have done many things in my life as acts of care, but getting on my hands and knees to clean feces off the floor of an airplane lavatory tops the list of things from which I may never recover.

  Even more repulsive than the filth was seeing a once elegant, well-travelled woman who had always held herself with the energy of royalty reduced to this. And knowing that it would only get worse from here broke my heart. The indignity of the moment was not lost on me on any front.

  Once I had cleaned things as best I could, I sat on the floor of the galley and openly wept.

  “I’ll take that scotch now,” I said. And the laughter finally came. Through the tears. But it came.

  Miraculously, Nette fell asleep for the remainder of the flight, and I sat in filthy, exhausted silence, praying for the flight to be over.

  My mother and sister met us at baggage claim, and I gratefully handed Nette over to them. I could not bring myself to share the exact details of the flight immediately. Even with all of my regular business travel, nothing could have prepared me for this single horrific, exhausting flight. I just wanted to go home, to the comfort of my mother’s kitchen, a very hot shower, and my bed. And I assumed that was the plan. That they would take me home first and then take Nette to get her settled into her new facility.

  My sister, unaware of how traumatizing the trip had been, had other ideas.

  “So you’ll come with us to get Aunt Nette settled into her new home,” she said as we made our way to the car. “And then you’ll come over to my house for dinner. The kids want to see you, and I want to hear all about the trip. So let’s get going.”

  I looked at her and said, far more loudly than I should have, “You know how they say, ‘Shit happens’? Well, it did. Nette shit all over herself on the flight, and I had to clean her. And the airplane bathroom. On my hands and knees. Take. Me. Home. Now.”

  You could have heard a pin drop, and in retrospect, even I fully appreciate the tragicomic genius of the moment. My mother, with both complete compassion in her voice and laughter in her eyes, quietly put her hand on my shoulder and said, “I’m so sorry, sweetheart. We will take you home. You are done now. And we will find a way to thank you.”

  “Thank you, Mama. I really need to go home. Right now.”

  When I was finally alone and had taken a very long shower, I crawled into bed, alternating between sobs and deep breaths—utterly convinced that, after eighteen months, I was done.

  And for that moment, I was.

  Chapter Seventeen

  THERE WAS A MOMENT EARLY ON IN THE ADVENTURE with Nette’s conservation and disease when I started to wrap my brain around the truly enormous task I had undertaken. I never really understood what was going to come next, and I was truly out of my depth most of the time. I was unsure about almost everything. Except one thing.

  I was absolutely, unwaveringly sure that once Nette was moved to the facility near my mother, I was done. I was not going to visit. I was not going to help, and I was not going to feel bad about it. The facility was a five-minute drive from both my mother and my sister, and I made it clear to them at every possible turn that I was done. Nette was their job from here forward.

  And I really believed that to be true. I needed time and space to process everything. My friends and colleagues thought I was crazy to become the caregiver for a clearly racist woman who had never held any warmth or love for me—I wanted to make sure I didn’t also think I was crazy.

  But my mother was still recovering from what turned out to be thirteen kidney procedures, and it was best for all concerned that she not drive or be out and about on her own. So, more often than not, I found myself driving her to the facility. My mother never asked me if I wanted to come in. She knew I did not. Instead, I sat on a bench outside. And I ate ice cream—Nette’s care facility faced a Culver’s. As I had come to know very early in life and much to my dismay, ice cream can be very comforting when one is contemplating things. Especially when contemplating the eighteen months I had just lived.

  The routine was almost always the same.

  “Do you need anything, Marra?”

  “No, Mama. I’m fine. I’ll be sitting out here when you’re done with your visit. I hope she’s having a good day.”

  And then I would get my ice cream, usually something involving M&M’s, and sit. Think
ing. In spite of myself because I really didn’t want to think about it. Nor did I want to relive any of it. And yet, I did. Each visit to California. Each painful interaction with Nette when she was lucid. The ongoing battle with horrible Paula. Zeit’s decline and my helplessness where he was concerned. The trips to court. The oceans of tears I had cried while en route to the Four Seasons after each visit to Nette’s care facility.

  On the ride home after my mother’s visit, I would politely ask how Nette was doing. We would then go back to our lives. I appreciated so very much that my mother never pressured me about anything when it came to Nette. She made it clear she did not expect me to ever go in to see her. And that I had already done more than enough.

  One afternoon, a few months after Nette’s return to Chicago, I found myself asking more questions on the short ride from the facility to my mother’s home.

  “I mean … has she changed much?”

  “How has she changed? Is she still talking baby talk like she was when I brought her back?”

  “Can she walk without assistance?”

  “Does she know you anymore?”

  Clearly, I wanted to know. And so I decided that next time, I would get off the bench and go in to see things for myself. As the day approached, I found myself terrified. After everything I’d been through, I wanted to see Nette. I couldn’t, for the life of me, understand why. My job was done. Nette was well cared for and was being attended to by my mother and sister. There was no reason for me to be in the mix.

  But I wanted to know. I wanted to see her. I felt like I needed to properly finish what I had started, and never seeing her again would leave it unfinished for me. I felt a bit guilty that I hadn’t gone sooner. And I’m not sure what I expected to find.

  I talked it through with my mother, and we ultimately decided it would be best if I went alone. So much had happened in California that was just between Nette and me. As ugly as it was, it was between us—and that is how I felt it should remain.

  When I walked into the facility, I was immediately struck by how different it was from the one in which she’d lived in California. California had been dark. Small. Sparse. The only similarity was the locked doors. Alzheimer’s facilities or floors are carefully locked so the residents can’t leave the building or ward. Once I passed through the locked doors, the world was bright. Like a primary school classroom.

  Each door had either a flower or a sports ball on it with the name of the resident who lived therein. The arts and crafts room was similar to the one in my niece’s preschool, with crayons, craft paper, markers, and coloring books strewn about. And music from another time was softly playing. The juxtaposition of music from the 1940s and the childlike amenities struck me as being all at once sad and sweet, much like many of the residents.

  I found Nette sitting in her bedroom, which was small but brightly decorated. She had a twin bed with a railing on the side. The railing was less like a hospital bed rail and more like the one parents put on the side of a toddler’s bed so that their child doesn’t fall out in the middle of the night. There were pictures of our family everywhere, provided by my sister, and Nette was sitting in a chair looking out the window.

  “Nette …?” I softly called her name, and she turned to look at me.

  There was no recognition there. Not even a glimmer. Toward the end of Nette’s time in California, she had drifted in and out of awareness, but at some point during almost every visit, she’d known who I was. Not so any longer.

  I walked farther into the room, and she continued to look at me with a sad, vacant stare.

  I crouched down next to her and said, “It’s Marra. I’ve come for a visit.”

  “You’re a pretty lady,” she said, just as she had in California. “I’d like a visit with you.”

  It was divinely, and bitterly, ironic that only in her state of dementia did she find me to be beautiful.

  “Are you happy here?”

  “Of course I am.” She smiled. “This is a very nice hotel!”

  And so it was to her. In the smallest and loveliest way, the part of the old Nette who loved very nice hotels was in this Nette, turning the care facility into something palatable where she belonged.

  My mother had warned me that Nette had deteriorated to the point where she almost never recognized anyone anymore, but I was still unprepared for it. I kept waiting for the Nette I had always known to reappear, as she had in California. But she never did. For the first time that I knew, the disease had completely overtaken her. No matter who she had ever been, this disease was one of the most heartbreaking ways to die that I had ever witnessed—even as it continued to change her into a sweet soul.

  I took her for a walk down to the television room, and we sat for a bit. I still could not bear to be there longer than about forty-five minutes, and fortunately, it was then time for her to be taken down for dinner.

  “It’s time for you to have dinner with your friends,” I told Nette. “I’ll see you again soon.” I gave her a kiss on her cheek, which she happily accepted—for the first time in either of our lives.

  I think two things can happen when one finds one’s most peaceful center, especially if food and body image issues were ever a part of one’s nonpeaceful life.

  You can get bigger. And you can get smaller.

  For me, finding my peace has meant getting smaller. Literally.

  For decades, I have joked that my weight, much like the late, very great Luther Vandross’s before me, has gone through wild fluctuations. Meant with no offense to the incredible Mr. Vandross, whose music has been a part of the soundtrack of my life forever. After ballooning to a number on the scale that arbitrarily pushed me over the edge, I would seek a new solution. There is not a diet I have not tried. Weight Watchers. Jenny Craig. Nutrisystem.

  I tried, in vain, to make myself vomit after meals, as I had seen other girls do at school. Thankfully, I wasn’t at all comfortable with that. But I would try absolutely anything to get the weight off. And then, when I reached a comfortable lower weight, something would inevitably happen to send me back to my beloved chocolate cake in the middle of the night. For one reason or another, I wanted to once again retreat into the safety of invisibility.

  This was my cycle for years.

  And it was not until last year, when I really delved into the reasons for my desired invisibility, that I allowed the weight to come off me in a way that was gentle. Loving. I no longer eat as a way to punish myself. Or my body.

  And so, my sense of peace has made my body smaller. And my heart bigger.

  For Nette, it was the opposite.

  After nine decades of obsessively watching her weight, denying herself any pleasure when it came to food, and berating others for their bodies and their food choices, Nette had started to eat. With relish. To this day, I marvel at the freedoms that Alzheimer’s brought to Nette’s day-to-day life. And the freedom to eat without guilt was certainly one of them.

  For so many, the disease creates an unlikable stranger out of a loved one, someone you do not want to know. For me, it was the opposite, but it took me a while to accept what had happened. Even with my mother and Nette’s caregivers telling me for weeks that Nette was no longer the woman we knew and that she was rarely lucid at this point, I didn’t believe them. Every time I looked at her, abusive moments would come flooding back to me, taking my system back in time, even though the woman I was sitting with had, for all intents and purposes, been transformed into a new person. I could not escape the past.

  My mother told me that if I just shared a meal with Nette, I would understand how different she really was.

  After much back-and-forth, I decided to make another visit to do just that.

  I went up to Nette’s floor, where I found her in the TV room with her friends. I always loved that the TV room did not show current television shows. Rather, the facility showed tapes of very early television, programs the residents often were able to remember. That’s the thing about Alzheimer’
s. It’s so complex. And one never knows when a memory will resonate.

  We watched two episodes of The Mary Tyler Moore Show—which had always been a favorite of mine—and chatted with her friends for a bit. Like Nette, the ladies were all in advanced stages of the disease, and so they had all settled into an almost childlike place. Visiting with them was similar to watching my seven-year-old niece play with her friends. They giggled and clapped their hands when they found something funny. It was adorable, although to be honest, I found it a bit unsettling when compared to the Nette I had always known.

  At some point, Nette turned to me and said, “I want a snack!”

  The comment caught me off guard. It’s not that she hadn’t eaten when she was healthy. She had. But it was almost the same thing each day, measured out with extreme precision, and each bite was explicitly designed to both give her enough energy to get her through the day—and not make her gain even an ounce. Eighty-nine pounds was always the magic number.

  But this Nette wanted a snack.

  The care facility’s dining room was much like a restaurant for the residents, and when family members visited, residents would often take their loved ones there to sit and chat in whatever way was possible. So we took a trip down to find a snack.

  “Chocolate cake!” she exclaimed as we got settled at a table.

  This Nette wanted chocolate cake.

  “Then I will get you some.” I smiled. The dining room had a fabulous buffet, and there was more than enough cake to go around.

  When I put the plate down in front of her, she smiled and clapped, exclaiming, “I love chocolate cake!”

  To say that she ate with relish would be an understatement. She dug in. Nette ate that piece of cake with more joy than I had ever seen her show doing anything. She had frosting on her face. Cake crumbs everywhere. It was the absolute opposite of the way she used to eat: in tiny bites, never dropping so much as a crumb anywhere and never getting food all over herself.

  But then came a question.