by Marra B. Gad
This was, in part, why it was tremendously hard for me to watch Nette and Zeit—once so vibrant, both as individuals and as a couple—as they were reduced to shells of their former selves. While Zeit still was technically of sound mind, he was confined to a wheelchair and utterly reliant upon a full-time nurse for everything. Because of the conservation, he had to ask permission to do everything, from going to the bathroom to buying a newspaper. Fully aware of what was happening to him, and to Nette, a once proud man was now limp, made impotent by Paula’s unwillingness to help find even glimmers of dignity in the conservation.
Eventually, after about nine months, Zeit was moved to a care facility, which only deepened what I assumed was his depression. While his mind remained quite clear, his body steadily continued to decline, and having a more intense level of around-the-clock care made good sense. He wanted desperately to visit Nette, but for reasons I could never quite understand, that request was never honored by the conservator. In a feeble attempt to offer Zeit some comfort, I told him Nette had reached a place in her disease at which she would no longer recognize him but I told her he missed her and was thinking of her. It was mostly, sometimes true. And that was enough. I did not want to further break hearts that were already so broken.
Finally, after nearly a year of intermittent court appearances, the judge was ready to rule on granting custody of Nette to my mother and on moving her to a facility in Chicago. Nette and Zeit had been living apart for nearly a year and a half at that point, but they were each required to be present in court.
The morning of the court appearance, I went to Nette’s care facility and dressed her in the most beautiful outfit she had left: a decorated sweatshirt and ill-fitting pants. Given how gorgeous her clothing had once been, to realize this was her “most beautiful” option was bad enough. That she was lucid when I arrived only made it worse. She did not want me to dress her. She did not want to go for a ride in the car.
“Why are you making me get dressed?” she asked as I tried to pull one of the ugly sweatshirts, now her uniform, over her head. “I don’t want to go anywhere today—do not touch me!”
Much like a child who did not want to go to school, Nette did not want to cooperate in any way that day.
“I’m taking you for a ride in the car today, Aunt Nette,” I said, “so that we can go to see your Neep. Wouldn’t you like that?”
Her face softened at the mention of my mother. “My Neep,” she said. “I love my Neep, don’t I?” Nette called my mother Neep because she said that my mother, as a young child, would always try to “nip” the buttons off her coats and sweaters. Nip became Neep, and it remained so until even that memory eventually faded from Nette’s mind.
“Yes. Yes, you do.” I took that moment to adjust the sweatshirt and get her arms fully through the sleeves. “And we have to get permission for you to visit your Neep. We are also going to visit with Zeit today. Won’t that be nice?”
“I don’t know who this Zeit is,” she said, “but I would like to see my beloved Alex.” Unfortunately, even in her lucid moments, she no longer seemed to know who Zeit was. The only man she remembered was Alex, who she believed had been her husband. That she confused her late brother with her husband was more than sad. It was actually a bit stomach-churning, given how afraid of him I understood her to have been. “Can we visit him today?”
I didn’t reply. I never knew quite what to say when this happened, so I focused on getting her dressed and hoped the moment would pass.
With a bit of cajoling from one of the nurses, we managed to get her ready and into the car. Once we were in the car, she suddenly no longer understood what was happening. It was almost as if she lost her balance the moment we left her room, her most familiar place.
She was quiet and stared out the window as we began the drive. But then, after some imperceptible balance had been found, she spoke.
“Is Alex going to be here?” she asked from the back seat. “I want to see Alex.”
“Yes. Alex is going to be here. And he’s very excited to see you,” I relented. And that seemed to keep her calm until we arrived.
Once inside the courtroom, I found out Nette and Zeit were not allowed to sit near each other. “It’s not appropriate or necessary,” Paula sniped by way of explanation.
I thought it unnecessarily cruel to keep them apart.
“But why?” I asked. “This will be the last time they are ever together if we get approval to move Nette to Chicago. Shouldn’t they be allowed to be next to each other a final time?”
“What difference does it make?” said Paula. “Nette doesn’t know him anyway.”
“But Zeit knows her,” I insisted. “And she might know him for a moment. It matters.”
I hoped that if there was an ounce of compassion in this horrible woman, it would engage. It did not.
I then asked if we might request to be highest on the docket, given Nette’s very fragile condition. She refused. We had to wait our turn—no matter how long that might take or how uncomfortable Nette might be.
I went over to where Zeit sat and tried to explain to him that Paula would not allow them to sit together.
“I just miss her so much …”
Zeit’s frail voice faltered, and he began to weep. His shoulders slumped. All of his former elegance, grace, and incredible pride gone. I could hardly keep myself from weeping with him.
We waited for nearly an hour, during which I shuttled back and forth between Nette and Zeit. I couldn’t sit still, partially out of concern that the judge might refuse our request and partially because it was never comfortable to be around Paula. Or to have Nette out of her facility. Or to see Zeit so horribly sad.
When we were finally called before the judge, Nette sat, tiny in her wheelchair and completely unable to answer any question that might be put to her. I don’t remember much of what was said. But in the end, permission was given to move Nette to a facility in Chicago and to give custody of her person—though not her money—to my mother. While the control of Nette’s and Zeit’s finances remained with Paula, we were allowed to leave.
Paula tried to shuttle Zeit and his caregiver away immediately, but I stopped her. Physically. I stood in her way. “You will let them say goodbye,” I said. “Zeit needs it. Even if Nette might not. Zeit deserves that much.”
Really, he deserved so much more. I pushed their chairs close together, and suddenly Nette knew exactly who she was. And she knew exactly who he was.
“Zeit. My Zeit.” She cooed at him as I had seen her do so many times before. She knew him. Zeit took her hand and kissed it.
“My Nette. You’re here.”
It felt almost inappropriate to witness a moment so intimate. And so I took a few discreet steps back to try to give them a bit of privacy. I was tremendously grateful that they could share this moment. After forty years together and some of the grandest and most authentic adventures a couple might have, this was the end. And no matter what else may have happened during their marriage, in that moment, there was only love.
Zeit’s caregiver came to take him away, and Nette’s came for her.
I went to kiss Zeit for what I assumed would be the final time, as he was slipping away far faster now that everything had been stripped from him.
“Thank you, Uncle Zeit,” I said. “Thank you for always being so kind to me and my family. For always being so generous. And for taking good care of Nette. You are a wonderful man.”
“Thank you,” he said.
“Do you need anything before we go?”
“I want some money of my own,” he said. “A man is not a man without money of his own, Marra.”
My bubbie, when I was a young girl, told me the very same thing each time she pinned a five-dollar bill to Uncle Harold’s waistband. So I gave Zeit a hundred-dollar bill I had in my wallet.
Zeit smiled.
“I love you, Uncle Zeit.” I leaned down and kissed his cheek again. I knew how much it meant to him to feel that
something was only his. And for a man like Zeit, nothing less would have been appropriate. I turned away, tears streaming down my face as I walked to the car.
Someone grabbed my arm. I turned around and saw Paula.
“What did you do?” she hissed. “Why on earth would you give him one hundred dollars? That is excessive and unnecessary. I mean, I suppose you can petition the estate to be repaid …”
I tuned out as Paula raged on and on at me, utterly clueless as to why even a few moments of dignity matter to the oldest old. Some surrogate daughter she was. That Paula could reduce this moment to a financial discussion left me on the verge of vomiting. But, as I had learned to do by this point, I did not say any of the things I wanted to say.
“There is no need for me to be repaid, Paula,” I said. “Have a good afternoon.”
Never had getting into the car with Nette been such a refuge.
Nette wept all the way back to her facility. She was withdrawn, her face turned toward the window and her breath peppered with what sounded to me like frustrated sighs. And yet, at the same time, she did not seem to know exactly what was going on.
“Now I can take you to see your Neep!” I said, glancing at her in the back seat in the rearview mirror. “Won’t that be nice?”
“I want to see Alex,” she wailed. “Where is my Alex? I want to dance with Alex!”
“You’ll see Alex very soon.”
What else did it make sense to say at this point?
Chapter Sixteen
THERE ARE MANY THINGS WE IMAGINE DOING IN the name of kindness. Or compassion. For those we love. Even for perfect strangers who are in distress. But when dealing with a family member with advancing Alzheimer’s who may or may not think you are the lowest form of human because of your skin color, the world of what you imagine doing grows. Exponentially.
And so it was when it came time to move Nette from San Francisco to Chicago. They may say it’s not about the destination; it’s about the journey. And the flight to move Nette from San Francisco to Chicago was absolutely that.
Once we were clear to move her, I began to breathe a bit easier at the thought of not having to run back and forth to San Francisco each month and even more at the thought of not having to deal with Nette any longer. I had already decided after the final court date that once the move was complete, I would disengage. While I did not regret anything I had done to that point, I did not feel the need to continue to engage once my mother and sister would be able to manage her care. My mission was soon to be completed, and I could not wait to be free from it all.
Fortunately, there was a rather upscale care facility about five minutes from where both my mother and sister lived. And it had an open bed. All I had to do now was arrange the travel and accompany Nette on the flight.
But Paula wasn’t going down without a fight. As she retained control of Nette’s finances, any expenditure made on Nette’s behalf—from an aspirin to a plane ticket—had to be approved by her.
I recommended that first-class tickets be purchased on the airline with which I had the highest standing. Nette’s lifestyle and ability to afford it notwithstanding, being in first class would offer the most limited interaction with other passengers, and should there be any problems, my status with the airline would give us the highest chances of resolving things easily. Nette danced in and out of lucidity, and when she was not lucid, she was often disoriented and violent because of the terror of it all. I did not want to leave anything to chance on the five-hour flight.
Paula did not agree.
“I just don’t understand why you’re reluctant to stack the deck in our collective favor,” I said. “Isn’t it smart all around to try to ensure the most comfortable flight for Nette?”
I was playing a verbal game of chess with Paula, trying to checkmate or perhaps shame her into seeing things my way.
“First class just seems excessive,” she replied. “I know that you believe in it, but I don’t.”
In her own inimitable way, Paula believed this was my attempt to make sure I was comfortable and travelling in the fanciest possible way. She never resisted an opportunity to accuse me of wrongdoing and selfishness, which I always found to be divinely ironic, given that she was the one controlling everything, and I had spent—quite literally—thousands of my own dollars to finance every trip to California for the last two years.
“I do believe in it,” I told her. “But so did Nette and Zeit. In fact, I learned it from them. And if Nette were able to choose, this is how she would want it too.”
Checkmate.
The first-class tickets were purchased, and an end date for this adventure was at last in sight. The plan was that Paula would pick us up at Nette’s facility and drive us to the airport so that she could have a final goodbye. Given how infrequently she actually spent time with Nette—less often than I did each month—I found it dramatic and a bit nauseating, but I did not argue. I could not wait to leave San Francisco in my rearview mirror and get Nette to Chicago.
Nette’s doctor suggested giving her a sedative so that she might be as comfortable as possible on the flight. While I had never taken a sedative of any kind, I was secretly hoping he would also give me one, for any change of environment at that point was a source of deep distress for Nette—and therefore a nightmare for me.
When we arrived at the airport, Paula made quite a show when saying goodbye to Nette. With tears in her eyes, she bent down to give Nette a feeble hug.
“I love you, Nette,” she said. “Be well.” I could barely contain my laughter. She then turned her beady eyes to me and said, “And you’d better take good care of this special lady.”
It was all I could do not to roll my eyes. Even with the move to Chicago, I would be tied to Paula through her control of Nette’s finances until Nette’s death, and I did not want to do anything to further inflame an already challenging relationship.
“We cannot thank you enough for your care and attention to both Nette and Zeit, Paula,” I said. And with a limp handshake, she went her way and we went ours. Thankfully, this was the last time I would have to see her in person.
Just before going through security, I took out Nette’s sedative, as the doctor had instructed. The hope was that it would reach full potency by the time we were settled into our seats.
“We are going on an airplane to see Alex,” I told her. “Won’t that be fun?” It was like talking to a small child at this point, and Alex was the only name she seemed able to hold on to.
“I love Alex,” she whispered.
“And he loves you,” I said. “Very much. He cannot wait to see you. Now be a good girl; take your medicine, and we will go to the plane.”
She was very calm that day, and she took the sedative without complaint. I was convinced things were going to go beautifully.
But then we got to the security check, and a TSA officer tried to insist I get Nette out of her wheelchair to walk through the metal detector unassisted and then remove her shoes for further screening. To say this was impossible is an understatement. She would not allow strangers to touch her, let alone strangers who showed no gentleness or empathy toward her. Nette grew agitated while I did my best to both protect her and get a supervisor to hear me out. The entire scene was chaotic at best.
“Do you honestly think this frail, ninety-year-old, wheelchair-bound woman with Alzheimer’s is a terrorist!?” Words I never thought I would have to say to another human being came flying out of my mouth. Nonsensical at best. But that’s where we were. “Here is a letter from her doctor,” I insisted. I decided to switch back to the game of verbal chess I had played with Paula, hoping that some sense of empathy would kick in. “Look at her. Please. Let’s leave her in the chair and not agitate her. She’s sick enough as it is.”
Eventually, they relented, and we made it to the gate and onto the plane.
Tucked into the first row of the plane, with Nette in the window seat, I informed the flight attendants of the situation. “My a
unt has advanced Alzheimer’s, so don’t feel the need to ask her if she wants or needs anything,” I told them. “I’ve given her a strong sedative, and I’m sure she’ll sleep for much of the flight. And if she doesn’t, I’ll take care of her. Thank you in advance for your understanding.”
“You’re such a sweet girl to take care of her like this,” the flight attendant said.
“You have no idea,” I thought to myself.
“Thank you so much,” I said aloud.
Then I settled in for the flight.
Did you know that, on rare occasions, certain medications have the opposite of the intended effect on the person taking them? I know for a couple of reasons. First, because I am one of the lucky creatures who often reacts badly to medication, and the only way to find out is to have the adverse reaction play out. For me, that happened when I was given Vicodin after gallbladder surgery, and I vomited violently until it had been purged from my body.
Second, I know because when the sedative I gave Nette did reach full potency, as the plane was taking off, it became clear that it was not having the effect of a sedative. Instead, Nette became agitated. Horribly, loudly agitated. To make matters worse, she did not recognize me and did not understand why a perfect stranger was talking to her, touching her, and trying to calm her down.
“Who are you?” Nette screamed, her eyes wild and her voice shrill. I tried to pat her arm to calm her. “Do not touch me!” she wailed. “DO NOT LET THIS STRANGER TOUCH ME!”