I was heartbroken when my husband’s caregiver told us he was leaving. He had gotten a job offer in a hospital that had better hours, higher pay and health insurance. Good caregivers are a hot commodity and I was not surprised that someone as competent, sharp and caring as Leonard would get snapped up with a better job offer.
My husband, Perry, had suffered an anoxic brain injury that had left him with severe cognitive deficits. He could understand what was said to him but didn’t initiate speech. He had problems with his balance and was prone to falls. He needed help with all aspects of daily care and could not be left alone. Leonard had been with us for six months, beginning when Perry was discharged from the brain injury rehabilitation center. He stayed with Perry while I worked full-time and helped me navigate and cope with our new life of disability. He was with Perry for all his weekly speech, occupational and physical therapy visits. He took Perry to the exercise, speech and computer classes at the community college. Under Leonard’s care, Perry seemed to be increasingly alert and lucid.
But now I would have to start all over again. Finding the right caregiver is not an easy process. How do you evaluate who should become a part of the fabric of your life, helping your loved one in the most intimate ways and witnessing your everyday life? I wanted someone who had a good rapport with my husband and would treat him with the loving care and respect he deserved.
I interviewed several caregivers. I passed on the one who smiled too much and had no experience with brain injury. I passed on the one who had experience with Alzheimer’s and dementia but seemed too meek. At the third interview, Gerardo, a tall, slim Filipino man with an engaging smile, entered the house. When he walked into the living room, he went straight to Perry.
“How are you?” he asked. “Can you stand up?”
Perry smiled back and stood up. Gerardo studied his stance, the way he planted his feet on the floor, then tugged on his arms to assess his muscle tone.
“I used to be a physical therapist in the Philippines,” he said, looking back at me over his shoulder.
I was sold. He would be a stimulating person for Perry and he had experience in physical therapy. Perry seemed to be taken by him, too, smiling and following his conversation. Charmed by his chattiness, I didn’t notice initially how Perry seemed quieter with Gerardo than he was with Leonard. There were more days where he was unresponsive, dazed and mute. Maybe he wasn’t used to Gerardo yet.
The first red flag was how Gerardo greeted me every morning.
“How is Perry today? Is he better?” he asked, as if there would have been miraculous improvement from when he had left us at 5 p.m. the previous day to 7 a.m. the next morning.
“Will he get better?” he asked. “We certainly hope so,” I said. “That’s why we have him in all these classes and therapy. No one knows how far he will come back but I think he will continue to improve.”
I gave him a stack of articles on anoxic brain injury to read that I had collected from the Internet and rehabilitation hospitals, hoping it would give him more insight. As the days passed, something about Gerardo was making me uneasy. Was it the ready smile, his incessant questioning or the way he dressed Perry in sandals and socks like he wore each day, even though it was October and turning cold in Los Angeles? Maybe we should have gone with the other caregiver that had experience with Alzheimer’s and dementia but had seemed too quiet and tentative.
But my job with the school district was demanding and I didn’t have time to dwell on my doubts. There were meals to cook when I got home, Perry’s therapy calendar to coordinate and car pools to schedule for our son still in high school. I needed the household and caregiving to run smoothly.
Then I got a call from our auto insurance company.
“There’s an issue with covering Gerardo on your insurance policy,” the agent said. “Apparently, there is a record of a suspended license and we can’t cover him.”
“What do I do then? He’s driving Perry around in our car. How do I get coverage for him?” I asked.
“You would have to go with another insurance agency and rewrite the entire policy at a much higher cost,” she said. “It’s too risky for us.”
That was the second red flag. At work, I began calling different insurance companies to see what kind of coverage I could get. The rates for the new policies were much higher than what I was paying.
Perry’s responsiveness to Gerardo remained sluggish. He was quiet and lethargic in the evening after Gerardo went home. I wondered if I needed to give it more time. Maybe Perry was tired in the evening because of all the physical therapy Gerardo was doing with him during the day. At least that’s what I had hoped. I didn’t have the energy to find another caregiver.
The following week, I asked how they had spent the afternoon since it was a rare day when Perry had no scheduled activities.
“Oh, we went to my apartment and I made him a sandwich,” Gerardo said. “He met my daughter.”
My alarm bells went off.
“That is not okay,” I said. “There is nothing therapeutic about that and you should not be taking him to your apartment. Don’t ever do that again.”
Gerardo cowered in response and his easy smile faded.
A few days later, when he arrived in the morning, Gerardo asked, “How is Perry today? Is he better?”
I sighed. “He’s about the same. It’s a long, slow process. Change doesn’t happen overnight.”
“Why doesn’t Perry talk? Is it because he’s lazy?”
I felt the blood rushing to my cheeks. “It’s because of his brain injury,” I explained, in a raised voice. “It’s not about laziness, it’s not about his not trying. His receptive language is intact, he can understand and follow everything you say but he can’t express himself. He wants to speak but he can’t.”
When I got to the office, the first call I made was to the caregiving agency. It was time to start a new round of interviews. I should not have been lulled by promises of therapy and stimulation. Care and respect were far more important qualities. I should have trusted my gut reactions at the beginning when I was starting to doubt if he was the right one.
Two years later, we found the right caregiver. Arnold was kind, respectful and competent. Knowing that Perry was under his care, I was able to excel at work and explore travel on my own. Arnold stayed with us for the next 12 years, until my husband passed away.
Cynthia Lim holds a BA in Experimental Psychology from UC Santa Barbara, a Masters in Social Work from UC Berkeley, and a PhD in Social Welfare from UCLA. She has written articles on caregiving and social welfare for many publications and just published her memoir, Wherever You Are: A Memoir of Love, Marriage & Brain Injury.