Confronting the New Normal: A Family Caregiver’s Perspective

By Kay Patterson, MA. The author is a retired licensed mental health counselor from Buffalo, NY. Before her career as a counselor, she was a newspaper reporter. Recent essays, profiles, and travel pieces have been published in the Buffalo News and other publications.

fork-in-the-road“All I wanted was a cortisone shot,” my wife moaned as we left the doctor’s office after an MRI investigating several falls she’d taken. Her dazed look reflected my feeling exactly. She was one hip surgery down, another one to go, and now . . . back surgery?

The neurosurgeon had been breezy but concerned as he showed us the results on his tiny iPhone screen.

“The lumbar MRI caught a small area of your thoracic. Good thing. You’ve got a stenosis and if we don’t decompress it right away, you could lose all function in your legs.”


He said he needed another MRI for a closer look. We had just enough time to buzz home for a sandwich and some frantic research. Thoracic stenosis, Google told us, is a compression in the middle of the spine that cuts off messages from the brain to the lower extremities. It’s rare and potentially dangerous.

Potentially. Was the neurosurgeon rushing it? “He’s like Hawkeye on MASH,” Susan groused. “A hot shot.”

“Uh-huh,” I mumbled, struggling to remain in helper mode after two months of watching her mysterious wobble. My heart skipped several beats at another thought: It’s fixable.

Later, second MRI in hand, the doctor was less breezy. Abandoning the iPhone, he used a big screen to show the blockage that was well on its way to cutting off Susan’s spinal cord. After that, Susan was well on her way to deciding that a hot shot was exactly who she wanted to tackle this.

“If I stick out my leg”—he demonstrated and his long leg went halfway across the examining room—“I don’t even need to think about it. You do.”

Slow on the Uptake

We both nodded. He was right. Four months after her first hip replacement, Susan wasn’t bouncing back the way we expected. She faltered as she focused all her concentration on each step, frequently unable to feel her legs or feet underneath her. Steroids didn’t help. I watched each of four falls with alarm and increasingly fervent pleas that she call the doctor. Eventually, she relinquished her idea that this was her rehab failure and called for the MRI that revealed the truth.

This quickly developing stenosis was a huge threat to her well-being and had nothing to do with her hip problems or her dedication to recuperation. Now back surgery was on tap for the following week. “Next Wednesday is okay,” her favorite hot shot advised, “but I wouldn’t wait any longer than that.” Paralysis was that close at hand.

“Not how we expected to spend this year,” Susan said.

But sometimes life twists itself into a pretzel and you have to find out how much it can be untangled. I was slow on the uptake with this idea that a new normal had entered our lives. In the beginning, when Susan announced she needed the two hip replacements, I jumped on board for my new caregiver role. This is a time-limited dilemma, I thought, after which we’ll be back on track. Better than ever, in fact, based on the testimony of our friends who’d had the surgery . . .

I’d minimized any disappointment about this life interruption with a plan:

“When it’s all over, we’ll take a big trip—Italy.”

Then one day, I came home from the store to find Susan poring over a delivery from Amazon—books on traveling with a disability. When I acted surprised, she looked at me quizzically. Didn’t I get it? Life had changed, hers and mine. Ours. Actually, I didn’t get it until right then. I resisted it mightily. Who wants a new normal?

The Ship of Us

The picture of our new life is murky and ever unfolding. Now, after Susan’s back surgery, I watch as she walks right along. Slowly, with a cane, but no wobble. No falls. She reports residual numbness in her feet and lower back pain, but we don’t worry that she’s going to lose all function in her legs. Meanwhile, an ever-present weariness showcases her other painful reality: that second hip is screaming to be replaced.

When Susan heads out to work, she has a determined look in her eye, intent upon corralling enough energy to make it through the day. By dinnertime, she’s spent. Meanwhile, I’m currently able-bodied and can manage the household and the caretaking tasks that help her keep going, If you have many activities during the day I recommend to Click here so you can make your to do list.

We’re thankful for that, though it creates a complicated dynamic, typified by this scene at our house: I walk up from the basement with yet another load of laundry. Susan watches from her perch on the couch, so fed up with being sidelined that I can practically see her thinking I wish I could do the laundry. To which I silently respond I wish you could do the laundry.

But what we say is “How was your day?”

This is what keeps the ship upright in today’s new normal. And we love the ship of us. There’s no place we’d rather be.

2017-05-05T17:23:16+00:00 September 26th, 2016|Patients|0 Comments

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