Help! Help!

This is what my beloved husband softly calls out, night after night, week after week, from his hospital bed in what used to be our bedroom not so long ago. He’s got atypical Parkinsonism, the rarer Multiple System Atrophy, and he’s declining month by month. His calling can go on all night long. “Help, help, help, Achsah!” Or whatever other name he can think of, perhaps one of the aides. I’ve had to move out of our bedroom into our guest bedroom/study. I’ve had to hire a night aide so I can sleep and not be pulled down into the darkness with him.

Sometimes he asks for water, again and again. “Water, water,” he whispers. Sometimes he demands “cookies” (what he calls Carr’s whole wheat crackers).  Is he thirsty or hungry? Or does he just want human contact, knowing that someone is there for him? That he’s not alone? 

Why can’t he at least lie there quietly, if he can’t sleep, I think to myself, frustrated, feeling mean. But of course he can no more help calling out than he can help his neurological disease. It makes me so sad. I’m pulled between intense, conflicting emotions: sadness and annoyance, grief and fear, even anger. A bi-polar syndrome that’s not in the books.  Within moments I can be torn between loving, empathetic, nurturing impulses and a survival instinct to save myself. I tell him he’s heroic, which he is; he tells me I’m keeping him alive, which is also true and makes me cry. Every day we have to forgive each other.

I rate too high on the empathy scale, I’m told. Like a sponge, I absorb the sadness, fear or joy of others. But trust me, I am no saint.

What my husband is going through these nights reminds me what my father was like in his last two years, and what he put my mother through.

She was always his helpmate. It was a different time and her marriage was a quite different from mine. She was his “faithful handmaid,” as she sometimes signed birthday cards to him. My father was difficult, to say the least. A domineering father, whose will was absolute. All of us children were raised to obey him, though some of my brothers resisted. My mother was his willing handmaid, even though she was a strong, intelligent woman. I’ve always hated the thought of being a handmaid.  I have never liked that description in the Bible of Eve created to be Adam’s “helpmate,” with its implication not just of simple partnership, but of subservience. So I married someone who didn’t want a handmaiden, someone who was self-sufficient. But age and disability have changed the dynamic. He now needs most things done for him and understandably he hates it.

When my husband calls out, “help, help,” anxiety boils up in me, a momentary panic attack. Too late, too intense and too transitory to take a pill for it.  I worry about him, but also about what this is doing to me. I think back to the last two miserable years of my father’s life. No sooner would my mother get him into bed, he’d start calling, “HELP! HELP, MAMA!.MAAAMAA!” And she would go in, get him calmed down, then go back to her room. No sooner did she get into bed that his calls would start again. All night.  I was living in Illinois at the time with my husband and a young son.  I thought she was exaggerating when she told me about those nights. That is until I went back to Connecticut to visit them.

I hated it! I was furious at him because I could see he was destroying her health and I worried about my mother. We mixed sleeping pills with scotch, upping the dosage. Nothing worked. After my requisite five-day visit, I’d fly back home to Illinois, guilty that I was abandoning her, but relieved to be far away.

Scientists now are learning that going without sleep for long periods of time means the brain builds up the plaque that leads to Alzheimers. According to a February 5, 2019 post on the NIH Director’s Blog, “Sleep Loss Encourages the Spread of Toxic Alzheimers Protein.” The new findings center on a protein called Tau, which accumulates in abnormal tangles in the brains of people with Alzheimer’s disease. In the healthy brain, active neurons naturally release some Tau during waking hours, but it normally gets cleared away during sleep. Essentially, your brain has a system for taking the garbage out while you’re off in dreamland.

By the time my father died, my mother was showing signs of dementia. So this was the reward for her years of loving but stressful caretaking.  For the next fifteen years, she would live with progressive dementia, the last nine in a nursing home.  I’ve always been convinced that her loss of sleep had destroyed her brain’s health, and I blamed my father, even though I knew he couldn’t control his disease. When I recently told my internist of my theory, she dismissed it: “Alzheimers doesn’t work that way.” But science is now proving me right. And that’s why I “selfishly” insist on not sleeping in my husband’s room, why I pay for an aide every night and why I continue teaching, writing, trying to use my brain every day. “Self-care” is too mild a term (sounds more like taking a bath or having a mani-pedi), and doesn’t capture the anguish and conflicting emotions that never go away.

I remember watching my exhausted mother and thinking, “I could never do that for my husband. I don’t want to ever do that for my husband.” And so here I am, thirty-some years later, doing everything I can to not let what happened to her happen to me.

It’s a horrible situation for both me and my husband. Worse for him, of course, though stress is taking a health toll on mine as my dermatologist told me as she took four biopsies of skin on my face and arm.

When my husband was first diagnosed, the doctors told us, “just focus on the present; don’t dwell on the future.”  Nice idea, like mindfulness. But you have to prepare for a future that we know will be worse. Living in the moment isn’t so great either. For the last six months my husband cannot walk, even with a walker, can’t stand on his own and starts to pitch to the side and collapse (they call it the “Pisa syndrome,” after the leaning tower of Pisa!). So transferring him puts us both at risk. During those hours when I’m without the support of an aide and have to move him or take care of increasingly challenging bodily needs, I often panic and shout and swear—“Oh God! Shit! Damn! God damn it. Oh God!” and even worse. I guess people would say I’m an awful, foul-mouthed caretaker, but actually I’m crying out to God for strength, for help, and I think God will forgive me.

I’ve been thinking a lot these days about how we feel about being dependent on people, or not being independent.

Our contemporary society values independence. The Declaration of Independence as the founding document of America, and that ideal of being free-standing, defines our history, influencing our values in ways that continue to the present. But many Conservatives, Republicans and Libertarians believe everyone should be able to work and take care of themselves and don’t like the notion that some people might depend on the state for food stamps, Medicaid or other government services. They feel each citizen should be able to stand on their own, or so that kind of thinking goes.

And then there are people who don’t like being dependent on someone else, financially or emotionally, which in my experience are generally men since women too often acculturate to being the ones who nurture and serve. For example, there are people who avoid romantic commitment because they don’t want to be tied down. All these phenomena are part of something deep in our western culture, the ideal of the autonomous individual—independent, self-governing and free—which is an extension to our free, independent nation.

The autonomous, free-standing individual has not always been either the norm or an ideal, and still isn’t in many cultures. But a seismic cultural change occurred in the transition from the medieval to the modern worlds when we inherited the idea that we are or should be autonomous creatures. The Enlightenment, beginning with John Locke in the late seventeenth century, emphasized individual liberty and rights. But even Enlightenment ideas grew out of the earlier Protestant Reformation, which emphasized the importance of the individual and insisted that the individual believer be free to engage God and the Bible directly, rather than through priests, rituals and the institution of the church. As a result, we’ve come to consider ourselves autonomous, free and in control. But are we? Do we deserve to be? Is it even possible?

In one assertion of our freedom we try to control nature but it is more apparent with every “natural disaster,” whether it be flooding, tsunamis, fires, earthquakes, etc., that we are not in control, even as our actions affect nature, as in the human hand in “climate change.”  Even to deny our part in climate change is another assertion of our independency, our unaccountability.  Yet we live in a natural environment—and a social one, in which everything is interconnected. We are always necessarily involved with others, affecting them and being affected by them. As John Donne famously wrote in his Devotions Upon Emergent Occasions (1624), “no man is an island, entire to himself.”

And yet, how many of us like feeling dependent? As we move from being children to adults, isn’t our goal to become independent? We struggle to be on our own, to be free.  To be financially self-reliant and not beholden to our parents any longer, even if we love them.  I see my college students, pulled between loving their parents while longing to be independent, no longer needing help from them. But it’s harder and harder for adult young people to afford living on their own, to have their own apartments, let alone buy homes, without being financially dependent on their parents.

The twinned issues of independence and dependency hits close to home for me too.  I have been grateful to be earning my own money, though like many people I fear that money will run out. But I’m now a caretaker for my husband, riddled with neurological disease. For the last year and a half he has lost so much of his independence.

My husband is dependent on me—or someone—for virtually everything. I hire aides, so I can continue working and keep some of my independence. But the more he depends on me, I lose some of my freedom too and I struggle against this. But for my husband, the dependency is depressing. He says he feels as if he’s in a prison. Some people seem to accept dependency, gracefully.  I remember my mother, when she was ninety, bedridden and silenced by Alzheimers, but she found a place of calm. In the first years, she cried as she felt something happening to her, but gradually she accepted things, didn’t struggle. I’m certainly not like that. I’m fierce about my independence, which admittedly makes caregiving so hard for me.

Watching my husband struggle with his loss of independence has affected my teaching, most markedly in how I approach the figure of Satan in John Milton’s epic, Paradise Lost. He is glorious and strong in the first books of the epic. My students recognize that Satan is not really the hero of Paradise Lost, though the Romantic poets thought that he is. Yet there’s no ignoring that he’s much more “likeable” than Milton’s cool God— as my students say, he’s “relatable.”  What strikes me now more than ever is how he hates dependency. In his soliloquy early in Book 4, Satan confesses his inability to accept having “a debt immense of endless gratitude [to God], / So burdensome, still paying, still to ow” (ll 52-3). I ask my students: How do you like being dependent on your parents? They smile or shrug or frown. How do you feel about having an immense “debt” from college that you worry you may never be able to pay?  These are not abstract issues, but personal, and deeply worrying.

Satan hates the idea of being dependent on God, of not being self-sufficient.  In book 5 (line 860) he tries to claim that he was not “created” but “self-begot.” The ultimate fantasy of freedom! As Satan powerfully expresses the agony of interminable, forced dependency, Satan’s words hit home for my students.

Of course, all religions teach that we are dependent on a “higher power.” 12-step “recovery” programs insist that we must give up our dependency on alcohol or sex or food and instead put our trust in God. As some of my friends say, “let go, let God.” Yet isn’t there a pull between wanting to be taken care of and wanting to control how we live our lives—even how our lives will end?

Well, I too fear becoming dependent, having worked so hard to establish a certain independence even within the confines of marriage. Caring for my husband has taught me, above all, my personal limits, and that I would absolutely hate being in his position, always dependent on others.

I remember a nightmare I had twenty years ago, while my mother was confined to her bed in the nursing home: In my dream, I was sitting in a large, pale yellow padded high-chair, in the middle of a four-lane street, as the traffic swirled around me.  I was strapped in, unable to move. Even in my dream, I realized what the dream was about—my fear of being paralyzed, of being at the mercy of other forces and reduced to the point of being a large helpless baby in a diaper.