68: Pressure Perfect

68: Pressure Perfect

From Chicken Soup for the Soul: Family Caregivers

Pressure Perfect

The difference between perseverance and obstinacy is that one comes from a strong will, and the other from a strong won’t.

~Henry Ward Beecher

Twice I passed my mother in the hall without recognizing her. My own mother. It wasn’t just that she looked like all the other nursing facility residents, dozing in their wheelchairs or staring vacantly at nothing. Dementia had changed even the lines and shape of her face until she no longer resembled the person I knew and loved so well.

Or was it dementia?

Our journey had begun a few months before with odd symptoms. Mom leaned to the side when she sat or stood and seemed unaware of it. Her toes curled, and she walked awkwardly on the side of her foot. Though she’d had mild cognitive lapses over the previous year, her memory suddenly took a nosedive. Always a voracious reader, she could no longer follow a story and stopped checking out books from the library. Driving and cooking became impossible. By the time my dad and I realized how much she had declined mentally, the checkbook was in a shambles. I was surprised their utilities hadn’t been cut off because of late payments.

Then the falls started. In poor health and with balance problems of his own, my dad could rarely help her up. Calls at four in the morning began with, “I’m sorry to wake you, but...” Mom had always been the one to take care of everyone else, and it was heartbreaking to see her sitting on the floor, helpless.

Visits to the doctor uncovered a few problems that were quickly treated, but nothing slowed her decline. A neurologist asked her age, did a cursory mental test, and proclaimed dementia. But something kept nagging in the back of my mind. She was deteriorating so rapidly, and what about the odd motor symptoms? Was this really simple dementia?

I knew something else was wrong. One night, while praying for wisdom and guidance, I recalled a friend years before whose father had fallen repeatedly and been diagnosed with a treatable condition I had never heard of. What was it? The words leaped into my mind. Normal pressure hydrocephalus.

I raised the possibility at the next visit with the neurologist.

The doctor shook his head. “She doesn’t have normal pressure hydrocephalus.”

“How do you know?” I asked.

“Her MRI doesn’t indicate it.”

Fortunately, I had done my homework. “But I thought an MRI couldn’t definitively rule out NPH.”

“Well,” he said, backing down, “we could do a special test called a cisternogram, but you’d have to take her to a neurosurgeon for that.”

“Okay,” I said.

At the neurosurgeon’s office a few weeks later, I again asked about normal pressure hydrocephalus.

“She doesn’t have NPH,” he said.

Déjà vu. “How do you know?”

“Her MRI doesn’t show it, and besides she can lift her feet when she walks. Patients with NPH usually shuffle.”

“But sometimes she can’t lift her feet. She says it feels like they’re glued to the floor.”

He didn’t appear swayed. “We can do a cisternogram if you really want.”

His emphasis on the last words made me feel like a bad daughter, as though I would be putting Mom through an unpleasant test just to satisfy my own curiosity. “I’ll talk to my dad.”

Before we could make a decision, a fall landed Mom in the hospital. When she came home, my dad exhausted himself trying to follow her everywhere to make sure she didn’t fall again. I helped all I could, but I couldn’t be there 24 hours a day. Finally, I made the hardest decision I’d ever had to make.

“Dad, we have to put her someplace she can be constantly supervised.” Mom’s primary doctor had suggested a skilled nursing facility where she could get physical therapy and perhaps regain her strength. The facility doubled as a nursing home.

I expected arguments and tears when I told Mom what we were doing, but she just nodded and said, “Okay.” She settled in without a whimper. Her mental state had deteriorated so that she hardly seemed to notice the change.

Barely able to walk when admitted to the nursing facility, Mom continued her swift downward spiral until she could no longer stand and rarely spoke, only answering one or two words to questions. One day I happened to be in Mom’s room when the facility’s doctor made rounds, and I unloaded on her, explaining my suspicions of NPH.

“We are just beginning to understand normal pressure hydro-cephalus,” she said. “The learning curve is going straight up. I wouldn’t blame you at all for pushing for the test. After all, you only have one mother.”

Her words were music to my ears. Though it was probably futile, I had to do everything possible to give my mom a chance at returning to a normal life. We would do the cisternogram—whether it labeled me as a bad daughter or not.

After completion of the three-day test, we returned to the neurosurgeon’s office to learn the results. Expecting the doctor to repeat the diagnosis of dementia, I was surprised to hear him mention surgery. “But she doesn’t have normal pressure hydrocephalus, right?” I asked.

“Yes, she does.”

Thank you, Lord!

Seven months after our ordeal had begun, the neurosurgeon inserted a shunt to drain excess fluid that pressed on Mom’s brain. Three days later, she began making complete sentences. Her sense of humor returned, and before long, we were enjoying lively conversations. Despite intensive therapy, Mom only regained limited mobility, but she was able to return home to live with Dad, her husband of 56 years. God’s mercy and a daughter’s stubborn persistence overcame what seemed like a hopeless situation.

A few days later, I asked Mom how she liked being at home again.

“Oh, didn’t I tell you?” She patted my hand. “It’s lovely!”

~Terri Cooper

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