Caring for a Difficult Parent

Her mother lived in constant fear, and it wasn't until after her father passed away that Kristy Dewberry understood why.

Posted in , Mar 13, 2019

Kristy and her mom, Flo

“Mom, please get in the car.”

She ignored me and wandered through her small vacation home—a mobile home, actually, by a lake outside town—in search of her favorite night cream.

“Mom, we have to get Dad to the hospital now.” I tried to steer her toward the front door. She shrugged me off. I fought the urge to yank her outside. I had learned it would just agitate her and slow things down.

Five years earlier, Dad had been diagnosed with pancreatic cancer and given six months to live. He’d beaten the odds so long, his oncologist called him Superman.

Now the odds were catching up with him. He needed lots of care.

Mom was making caring for him as hard as possible. She didn’t mean to. All my life she’d had a suspicious nature, been hesitant to trust people, plagued by unfounded doubts about Dad’s faithfulness. Recently, her suspicions had crossed over into full-blown paranoia. She believed people were stealing from her and hid everything she valued. All caregivers, including doctors, fell under her mistrustful gaze. It made helping Dad supremely challenging.

“I’m not leaving until I find my cream,” she said, setting her jaw in the way I knew too well. “I bet someone took it.”

I summoned all my willpower to keep from screaming. Dad was coughing up blood. While Mom wasn’t looking, I rummaged through her purse, where she often hid things and then forgot about them. Sure enough, I found the face cream tucked beneath a package of Hostess Twinkies.

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“Found it!” I said, waving the jar in the air. I gently tugged her toward the car before she could cause any further delay. My husband, Don, started the engine, and we headed quickly to the ER.

It had been like this for months. Actually, it had been like this a lot longer than that. Mom was emotionally unstable from the time my two older sisters and I were kids, veering from intense affection to suspicious possession. I was too young then to wonder whether she suffered from mental illness. Only later did I learn about Dad’s often fruitless efforts to help her as well as his unwavering loyalty, even when she made life hard.

My response growing up was to push Mom away, which made her cling more. My sisters, Kathy and Karen, endured the same treatment, though somehow it felt as if I got the worst of it, maybe because I was the youngest and the only one at home after my sisters left for college and married.

I went to college, married, raised kids and did my best to avoid Mom. Which was hard because I lived in Oklahoma City, where we’d been raised and where Mom and Dad still lived. I loved my dad, and I wanted to spend as much time with him as possible, especially after he retired and got sick.

Dad was the opposite of Mom. My husband said Dad was a lot like me—informal, quick to laugh, with a love of travel. Dad’s idea of heaven was drinking his morning coffee on the deck of the lake house, watching the sun rise over the water. He was the steady presence in our family, my reassurance that all was well.

I’d always resented Mom for making it difficult to spend time with him. Now that he was dying, my resentment turned into something harder. In my worst moments, I wished Mom were the one who was sick, not Dad. How much longer did he have? How much of that time would I waste dealing with Mom’s craziness? What were we going to do with her after Dad died?

That hospital visit was the beginning of the end for Dad. The cancer, which had responded at first to radiation, came back aggressively, and Dad’s digestive system began to fail.

He was placed on hospice. My sisters and I were there most of the time, taking care of him.

Easier said than done.

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Every time I drove to my parents’ house, I prayed for patience and charity toward Mom. I would arrive to find her hovering over the hospice workers. She criticized any imperfection—shoes not lined up just right by the door, crumbs on the counter, the number of towels someone used—and I would notice things missing that she’d hidden.

I cherished every minute I had with Dad. Too often, instead of sitting and talking with him, I spent my visits managing Mom.

Despite all my prayers, I had to admit I wanted to put Mom somewhere safely out of the way so Karen, Kathy and I could care for Dad properly.

I knew God would be appalled by the idea. And I knew we couldn’t rely on Mom to care for Dad on her own. God’s answer to my prayers was always the same: Just be there. Not the answer I wanted.

My sisters and I took time off work to stay at the house. I run a collectibles store on eBay and my schedule is flexible, so I was there most often.

All of us watched Oklahoma Sooners football games with Mom and Dad. Put on DVDs of Dad’s favorite Johnny Carson episodes. I kept his mouth moist with a sponge and traded jokes with him—whenever I could snatch moments away from Mom’s needs.

At some point, juggling all of this, I realized that after a lifetime of doing everything I could to avoid Mom, I was figuring out how to work with her. Sometimes, as I had with her face cream, I found a way around her delusions. Sometimes I just ignored them and carried on with what I knew needed to be done.

And sometimes, when I had to, I worked up my courage and addressed her directly. To my surprise, she often did what I asked without complaint.

I told her to let the hospice workers do their jobs, and she did. I told her I couldn’t help her look for something she’d hidden, and she agreed to wait until I finished helping Dad. She even let Karen’s pastor meet with him.

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Dad had never been one for religion, but he and the pastor got along and became friends. Not long before he died, Dad chose to be baptized. Mom insisted on being baptized too. I suspected she couldn’t stand to be out of the limelight.

Dad died peacefully one afternoon. Mom had left the room. Maybe she somehow sensed what was about to happen. I told Dad it was okay to go, and soon his breathing stopped.

The minute Mom came back in the room, I began sobbing. I’d been holding back tears so Dad wouldn’t feel as if he had to hang on. Mom sat next to me and put her arms around me.

“It’s okay, Kristy,” she said. “Now that your father is gone, we’ll have even more time together.”

I knew she meant to comfort me, but that was the last thing I wanted to hear. Especially because I knew she was right. She had no friends, no other relatives to care for her. It was my sisters and me, and I lived closest. Without Dad, I would bear the full brunt of all her fears and needs.

For a while, it seemed as if Mom might do okay. She could still bathe, cook for herself and get around town. I would spend time with her several days a week. I helped her with bills and paperwork and tried to relieve her anxiety.

“I always feel better when you’re here,” she said to me one day. “I know I’m safe. You did such a good job with your father. You were always there for him.”

I wanted to believe she meant that. I didn’t dare ask her to elaborate, for fear she’d start talking about the neighbors stealing her stuff again.

Eventually I knew we had to put Mom in assisted care. The police called one night saying she was filing repeated complaints about the neighbors breaking in.

“You might want to think about another living arrangement for your mother,” the officer said.

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Would she agree? I summoned up my best combination of persuasion and insistence. I told her about other people we knew who were happy in assisted living. I dropped hints, knowing that if I told her it was a good idea she would dig in her heels.

“I saw an ad on TV for a lovely assisted living center,” Mom said one day.

“Want to visit?” I said.

She moved in a short time after. On the recommendation of my friend Robin Vaughn, I took Mom to see a gerontologist. After a long, patient, respectful visit, the doctor diagnosed her with Alzheimer’s.

“Paranoia is sometimes one of the first signs,” he said. “It can develop quite early in people who later progress to the full disease. Medication can help.”

The doctor prescribed two medications, one for the paranoia and one to slow the advance of Alzheimer’s. The effect was astonishing. Mom suddenly had a peace about her I’d never seen. Though her mind slipped away inexorably and she was later diagnosed with Parkinson’s disease, she seemed happier than at any other time in her life. Our relationship, always so complicated, became simple.

Whenever I visit, the staff coo and fawn over her. “Your mom must have been wonderful to grow up with,” an aide said to me recently.

I didn’t contradict her. Mom no longer knows who I am. But I know who she is. It’s been a long time since I wanted to avoid her or resented her needs. I understand now why she made life so difficult. I feel sad, not angry, about how hard it must have been for her to live with her constant, desperate fears.

Just be there, God told me. I spent time with my parents for my Dad’s sake. What I didn’t know—though God knew—was that I was doing it for Mom’s sake too.

And mine.

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