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The unexpected gift

Gerber, Lois MPH, BSN, RN

doi: 10.1097/01.NURSE.0000604712.35579.a4
Feature: SHARING

Long dependent on his aging parents, a 30-year-old man with Becker muscular dystrophy makes a liberating choice.

Lois Gerber is a guardian ad litem for the state of Florida.

The author has disclosed no financial relationships related to this article.



MY SUPERVISOR at the home healthcare agency stepped into my office to hand me a new referral. “The NP at the rehab center just called this in. Name's Ryan Carter*. He's in his mid-30s. The doctor and everyone on the team there wanted him discharged to a nursing home or to assisted living. He refused both, and his parents agreed to bring him home.”

“Another challenging patient,” I sighed.

The referral contained personal information as well as orders for a physical and occupational therapist and a social worker. Since he was a teenager, Ryan had been disabled with Becker muscular dystrophy, a genetic disorder causing the loss of voluntary muscle control. The disease is a variant and milder form of Duchenne muscular dystrophy. Patients are also at risk for cardiomyopathy and pulmonary complications.1

Ryan had always lived at home, dependent on his parents for his basic needs. Virginia, Ryan's mother, enjoyed doting on Ryan and keeping him amused in a bittersweet labor of love. But this exhausted her at the end of the day and fostered Ryan's dependence, which led to the enabling and codependence often seen in families with disabled or chronically ill members. A recent fall resulting in a fractured pelvis sent Ryan to a rehab facility for a few weeks. He had been transported home the day before.

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Assessing the problems

Rain pelted my umbrella as I walked up the short brick path to the Carters' small ranch house in a well-maintained neighborhood. Virginia welcomed me into their living room crowded with oversized furniture. “I want Ryan here but don't know what to do with him anymore,” she said with tears in her eyes. “My back's killing me, and my husband, Art, can't help much. He gets too out of breath. Heart failure, the doctor says.”

“You've taken on a lot,” I said. “Let's sit and talk a bit.”

Virginia eased herself into a recliner. “It was easier before this fall when he could get around with his walker. We needed to help him dress and lift anything heavy. Ryan's a good son, our only child. Until now he always had a twinkle in his eyes and made me laugh with his silly jokes. Since he came home yesterday, he's hardly talked.”

I sat in a rocker across from her. “That doesn't sound good.”

“He's gotten gradually worse over the years. He was slow to start walking, then in junior high, the clumsiness and waddling gait. Since his late 20s, he hasn't been able to drive. Lots of falls through the years. We've managed all right until this bad one.”

Art, lines etched across his forehead, walked into the room to introduce himself. “Not sure Ryan's idea to be here will work, but we want to try,” he told me. “He's not done his exercises with his walker like he's supposed to. Says it hurts too much. Dr. Griffin has prescribed celecoxib for his pain. It's not helping him like the hydrocodone he took at the rehab center.”

“Doctors are prescribing fewer opioids because so many people have become addicted to them,” I said. “But we can look into other options.”

A bell sounded from another room. Art pointed to a bedroom door. “Ryan wants to get up,” he said. “He rings a bell to let us know.”

Lying in the middle of a double bed, Ryan slowly pushed himself into a sitting position as we entered his room. A thin, tall man, he had a scruffy beard but well-trimmed crew cut. I took his hand and introduced myself.

He murmured “Hello” and at first answered my questions in monosyllables as I performed an initial assessment. His vital signs were normal but he rated his pelvic pain intensity as a 5 out of 10.

Near the end of the assessment, he said, “I cracked my pelvis falling out of bed. Now I'm afraid to get up without the help of the rehab aides.”

I took a deep breath. “But you really wanted to come home, right?”

“I couldn't stand it there. The noise, the food, and my roommate and all his visitors drove me crazy. It brought me down. I could hardly make myself get out of bed this morning.”

“You sound sad.”

“Yeah, I'm discouraged, depressed even. It's all overwhelming.”

“I can understand why you feel that way. It can take a while to get back into your old routines,” I said. “We need to make a plan and get some help for you. Would you like me to call Dr. Griffin to see what he suggests?”

Ryan nodded. “Yeah. There's a lot to think about, and I trust him.”

“I'll call him once we're finished here,” I said. “For now, let's start with getting out of bed.”

With Ryan's consent, I taught Virginia and Art how to steady his walker so that he could safely transfer from the bed to a nearby chair. “What's next besides calling the doctor?” he asked once he was seated.

“I'll make sure a physical therapist is here tomorrow. What about a home health aide to help with showering and bed making and a social worker to talk about a long-term plan?”

“That sounds all right. I'll try anything to feel better,” Ryan said.

Before leaving the home, I called Dr. Griffin, who recommended adding acetaminophen three times a day to address Ryan's pain. “And I'll call in a script to their pharmacy for an antidepressant,” he said.

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Leaving home

Over the next couple of weeks, Ryan's pain intensity level dropped to a 2 and his mood lightened. I then spent my next several visits reinforcing the physical therapist's suggestions for transferring, muscle strengthening, and safe ambulation. I also educated Ryan about his medications and discussed ways to manage caregiver stress and the need for self-care with his parents. They agreed to attend a caregivers' support group meeting at a nearby church.

At a team conference back at the office, Marianne, the social worker, said, “Virginia's worried there will be no one to care for Ryan after they die. He hates the assisted living idea, so I've talked to the family about group homes.”

“Ryan's worried about the future, too,” I said. “Yesterday, he asked me questions about the nearby group home you suggested, the small one with only six residents. He and his parents visited it last week.”

Marianne smiled. “Good. He has his disability money, and his parents can make up the difference to pay for a private room. They were smart to set up a trust for him from the money they made selling their old home.” She laid her pen on the table.

“The physical therapist has him walking with a cane now, and he's often sitting on the sunporch when I visit. He shaves regularly. Soon he'll be showering independently. And he rarely rings the bell to alert his parents anymore. We've made a lot of progress.”

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Something to look forward to

The following week, Marianne and I made a joint home visit. The five of us sat around the family's kitchen table.

I looked at Ryan. “You're doing so well and have mentioned you want to be more independent.”

Ryan said, “I'd like to try out the group home. Our talks about it have helped me make up my mind.”

“You're sure?” I asked.

He nodded to his parents. “Yeah. It's best for all of us. Two men my age live there too. My folks deserve a few quiet years. They've taken care of me all my life.”

Virginia bit her lip. “I wouldn't have had it any other way. You've been a gift to us,” she said. “I'll miss you tons. I'll visit you every day in the new place and bring you lunch.”

Ryan reached over and squeezed her arm. “No. Not every day. I need to learn to live on my own. How about if we make Sundays the visiting day?”

“As long as I can still drive, Mom and I will bring you here for the afternoons,” Art said quickly. “We can watch all the sports on TV like we used to.”

Virginia looked at me. “I've been praying for a solution, one I could feel good about. We never knew about group homes before. What a wonderful idea.”

Ryan leaned forward. “Maybe my fall has been a gift to all of us.”

I smiled. “Yes. Gifts can come from unexpected places.”

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1. Mandac BJ. Becker muscular dystrophy. 2019.

* Names have been changed to protect privacy.
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