This month’s “After Hours” is a companion piece to an essay I wrote for Change Seven, called, “The Unexpected Beauty of Alzheimer’s,” which was written over two months ago. When I read that piece now, I see how much things have changed as my mother’s disease has progressed, and how much they will continue to change over the coming months.
There have been very few times in my life, if any, when in order to save myself I’ve had to sacrifice the feelings of those I love. As human beings we are taught from a very young age to put other’s needs before our own. Women in particular have learned this lesson exceedingly well. I recently confronted the harsh reality that that lesson would destroy me unless I learned to be selfish.
Three weeks ago, in the space of one day, one hour actually, I found myself faced with the choice between selflessness and survival. By choosing survival I did something that I always viewed as unthinkable, unforgivable, in fact: I walked away from the people who needed me. I walked away from someone who is dying. I knew that by doing so I would make their lives much harder, and yet I still walked away, knowing, or thinking I knew, that my selfishness would have profound consequences, not only for me but also for them. It has, for me at least, but not in the way I thought. I came back to my family after a much shorter time than I anticipated, but while I was gone I learned something about the necessity of selfishness.
On that day, I walked into my mother’s hospital room, just as I had the day before, and the day before that, and the day before that. My sisters and I were on a 24-hour watch and had been for weeks because since fracturing her hip my mother was a huge fall risk. I was wary because depending on the time of day and the level of medication she was on, I had no idea which “Mom” I would see. My sisters were better than I was at keeping up with her moods and her meds. I take care of her finances, which, granted, is a big job, but for some reason I’m not very good at the other stuff: bathing her, dressing her, brushing her hair. I was for a while, and then I wasn’t. I don’t know why that is, but despite all that, the three of us knew each other’s strengths and, on most days, did a reasonable job of balancing everything, each of us taking on the tasks we were most comfortable with. So, although I was wary, it was no more or less than on any other day.
She seemed fine when I walked in, the same Mom I’d always known, and that, ironically, was the problem.
“Hi, Honey,” she said.
“Hi, Mom,” I said. “How are you?” Then we started the standard routine that my sisters and I went through every day: urging her to eat followed by her refusal to eat; telling her she needed to get up and do her physical therapy, followed by her refusal to get up and do her physical therapy; her spitting out her medicine, followed by the inevitable, “I don’t like it when people tell me what to do.” That one sentence, on that one day, a day like any other, did me in. I thought of all the times I had heard her say that exact thing over the years, throughout my childhood and on into adulthood, over and over again, the same eleven words, embedded in my brain, and the stubbornness that went with those words, stubbornness that had nothing whatsoever to do with her disease, the stubbornness that had been a hallmark of her personality for as long as I could remember. I loved my mother as much as any daughter could, and I had long ago accepted her for who she was, but at that moment something inside me clicked off. I was walking towards her and suddenly it was as if an invisible wall sprung up out of nowhere. I can’t do this, I thought, and as I did I felt the familiar signs of a panic attack ramping up inside me. I backed up, sat on the bed next to hers, and took out my phone, pretending to read a text that had come in. Then I lied, easily, happily lied, because it was the only thing that would allow me to escape. I stood and picked up my bags, all the things I would have needed had I stayed the night.
“Mom, I have to go.”
“Why? Is everything okay?”
“Everything’s fine,” I said. “I have an appointment I forgot about. That’s all. I’ll be back soon.”
“When?” she said. “When will I see you?”
While her stubbornness was maddening, one of my mother’s most endearing qualities is an unshakable willingness to trust what one of her daughters tells her, and indeed, throughout my life, up until the time she got sick, I had been unable to lie to her, or anybody really, at least not well.
“Tomorrow. I’ll see you in the morning.” Thank God for Alzheimer’s, I thought, which, unless you’ve been where I was on that day, sounds heartless and cruel, but I knew that she would never remember that I had even been there, and I needed so badly for that to be true. I started to back out the door, which I had to force myself to do. My guilt at abandoning her was so strong, my sense of responsibility so entrenched, that when I finally made it out into the hallway, my knees almost gave out.
I went home and cried, off and on, for three days. At the time, I had no desire to see her again. None whatsoever. That would change, of course, but not without two weeks of mental anguish. That is caregiver syndrome. It’s not pretty.
There is a difference between selfishness that most people see all the time and selfishness necessary for survival. Taking the last cookie off the plate without offering it to anyone else, or showing up at someone’s house unannounced are technically selfish acts, but they are not usually given much thought by the people committing them, and the consequences are not nearly as dire, other than finding yourself with a lot fewer friends.
Necessary selfishness is about setting boundaries, an overused phrase I always thought of as more of a social contract than a necessity, a process most people get around to eventually in order to make their lives easier, mostly by learning to say no to something they don’t want to do: having lunch with a friend when what they really want is to sit in front of the TV with a pint of Ben and Jerry’s, or answering a call from a person you don’t want to talk to. At some point, Nope, not going to happen, trumps social obligations. And that’s a good thing. Necessary selfishness, on the other hand, is setting boundaries in its most extreme form. It was, for me, a willful turning away from everyone I loved, hoping that the life I knew before would still be there when I got back. Trusting that everything I’d done in my life up until then had been good enough. Good enough so that the people in my life would give me the time I needed when they could least afford to give it.
Caregiver syndrome, as it’s often referred to, has been defined in various ways, all saying more or less the same thing. For example: “Caregiver syndrome is a debilitating condition brought on by unrelieved, constant caring for a person with a chronic illness or dementia.” This definition is only one sentence long but says all it really needs to because anyone who has cared for someone chronically ill—whether for weeks, months, or years—will view any attempt at describing the experience as laughably inadequate, myself included. But by reading about what it is and what it can do to a person, I was able to see selfishness under such extreme circumstances as something inevitable, rather than something that could have been avoided had I only tried harder.
Ever since my mother was diagnosed with Alzheimer’s, my sisters and our stepfather have taken on the responsibility for her care and safety. This has affected almost every aspect of my life: my relationships, my job, and my health—both mentally and physically. That does not make me unique. On the contrary, all caregivers, given enough time, will be changed by the experience, both positively (believe it or not) and negatively. The positives may be unexpected blessings, but the negatives will take you down if you let them.
Depression, anxiety, and anger, are the most visible signs of caregiver syndrome, all of which I had in spades. High blood pressure, diabetes, and autoimmune disease are less obvious examples, at least outwardly, and for all I know I’ve got those, too. The physical and mental toll that caregiving takes on a person is almost impossible to imagine, even under ideal circumstances. And if you’re not in ideal circumstances, you’re in hell. Unresolved issues from childhood seem to come out of nowhere. No one sleeps. That’s a given. By the time I “stepped away” from my family, neither my sisters or I had had a full night’s sleep in weeks. The financial situation, unless you are very lucky, is overwhelming. Then there is the disease itself. In the case of Alzheimer’s, you are watching a person you love literally disappearing in front of you. Not physically, of course—although the physical changes are frightening enough—but the person. The brain, or the soul, or whatever it is that makes us “us,” a little bit more of it is gone every day. More than once the only thing that stopped me from incoherent babbling, or screaming out loud…Come back to me!…Don’t leave me!…I love you!…I hate you!… anything just to make her stay, was the fact that it not only would have scared her to death, but, worse, she wouldn’t have had a clue what I was talking about.
I used to hear about people faking their own deaths, or ending up alone in a cabin on the top of a mountain, turning away from people, from society. I remember thinking, “Jeez, how bad could your life have been?” I’d seen tragedy in my own life: deaths of friends and family members, severe depression, addiction, various illnesses, all tremendously unpleasant things that happen to people for one reason or another over the course of their lives. And yet I still never understood why someone would do something so extreme. I would guess that the people who took such steps never did either, at first. Now I understand how, if you don’t take steps to save yourself, you might get to that point, how I could have gotten to that point if not for my willingness to be selfish.
Selfishness gave me the space necessary for healing, but it also brought me immense loneliness and sadness. It changed the way I view my life, and how I interact with others. It changed the way I handle honesty and empathy, not only towards others but also towards myself. But regardless of the consequences, I know that had I not chosen selfishness the alternative could have been, likely would have been, far worse.
Sandy Ebner lives and writes in Northern California. Her work has been published or is forthcoming in Connotation Press: An Online Artifact, Dead Mule School of Southern Literature, The Doctor T.J. Eckleburg Review, the HerStories/ My Other Ex anthology, and other publications. She holds a bachelor’s degree in journalism from California State University, and is an alumna of the Community of Writers at Squaw Valley. She previously served as the creative nonfiction editor at MadHat Lit and MadHat Annual (Mad Hatter’s Review), and is working on her first novel. Follow her new column After Hours here at Change Seven.
READ MORE WORK BY THIS AUTHOR:
- The Unexpected Beauty of Alzheimer’s
- There Once Was a Town
- Why Food Writing Matters: A Profile of John Thorne
- Twice Loved
- Hatred Learned
- A Conversation with Frances Dinkelspiel
- Some Thoughts on AWP
- Distracted by Life
- Brown Bottle by Sheldon Lee Compton
- Gracious Little Bastard: The Story of a Chef
- A Conversation with Meg Tuite
- An Alleyway in Paris