Caregiving and Calling for Help

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.