DR. BROWN∗, A GERIATRICIAN, phoned in a new referral to my case management business. “The couple needs help with long-term planning. The husband is 74 and has Parkinson disease. He also has speech and motor coordination problems from a stroke years ago.”
I visited the family the following day. Kay met me at the door of their large ranch-style home and led me into the living room. Motioning me to sit on the leather sofa, she eased herself into a matching recliner. Framed family photos filled the top of a large entertainment center.
She ran her fingers through her short gray hair. “Max is in the bedroom so we can talk. I'm 76 and am at my wit's end. I'm exhausted. My daughter Sandra lives across the country. She wants me to put him in a long-term-care facility. But isn't it my job to take care of my husband?”
“That's a hard question to answer. Tell me what's going on.”
“He's getting more confused and unsteady on his feet every day. Bathroom accidents started 2 weeks ago. He doesn't talk except to answer questions in one or two syllables. I'm worried and depressed. My doctor prescribed an antidepressant, but it only helps a little.”
A network of frown lines crossed her brow. “I'm so conflicted. I was raised Catholic. You stay with your husband, take care of him in sickness and health, but for 7 years? That's how long he's been disabled. He only wants me and refuses help from anyone else.”
“That can be a problem. We'll work on it,” I said. I stood up and went to introduce myself to Max.
I found Max in the bedroom sitting stiffly on a small chair. His T-shirt and khaki shorts hung loosely from his frail body. Vital signs and lung sounds were normal, but physical and cognitive assessments supported what I'd been told by Kay and Dr. Brown. He was oriented to time, person, and place, but he needed help to rise from his chair. His arms moved erratically throughout the interview.
Max spoke in a weak, halting manner and was at times unable to retrieve simple words. But when I mentioned outside referrals, he emphatically shook his head.
“No, Kay knows what I like,” he said.
“I'm sure she does,” I said. “But she's older now and can't do as much. Dr. Brown sees couples like you two every day and wants the best for you both. That's why he suggested I come.”
Kay frowned at her husband. “You told Dr. Brown you'd accept help. I can't do everything anymore.”
“Yeah, yeah, I know,” he mumbled.
I smiled. “How about we start slowly, one new person at a time and see how it goes?”
Over the next 2 months, I gradually introduced physical and occupational therapists from a home care agency into his plan of care. In time, Max came to enjoy their visits and also allowed a home health aide to help with showering and personal care. But even though I reinforced the therapists' exercise plan and monitored his use of a tripod cane and walker, he showed minimal functional improvement.
Dr. Brown adjusted the dosages of Max's levodopa, which gave Max better control of his arm and hand movements. With the physician's approval, I simplified Max's medication schedule and taught Kay how to apply an external catheter at night when his incontinence worsened.
The agency social worker and I urged Kay to plan social activities outside the home. She agreed to volunteer at a local museum for 3 hours every Tuesday morning during the time the home health aide helped Max shower. However, anxiety over his welfare caused her to drop out after 2 weeks.
Kay's caregiving concerns escalated. She complained of insomnia and increased anxiety. “I just can't relax. I'm afraid to leave him. Even if the aide is here, she can't watch him every minute. What if he falls? I'll feel responsible and guilty.”
“Nobody can keep up this pace,” I told her. “It's not healthy. If you get sick, no one will be there for Max.”
“One minute I'm mad, another sad, then the guilt sets in. We've had a bad marriage for years, starting long before he got sick. He controlled everything: money, the TV, where and when we went anywhere. Food and meals were problems. He insisted on a full home-cooked dinner every night. He still does. It's awful.” Tears filled her eyes.
I took her hand in mine. “You've gone through a lot. Maybe it's time to think about you. We've talked about adult day care to give you some free time and get him used to other caregivers.”
Tears ran down her cheeks. “I'm afraid God won't see it that way.”
Initially, both she and Max refused a referral for him to spend 2 days a week in a nearby adult day-care program. After she and I discussed this further, Kay realized her overcompensating behavior contributed to Max's dependence. Once she shared her feelings more forcefully with her husband, he agreed to cooperate.
Early one morning several weeks later, Kay called the agency. “Max won't get out of bed. He just lies there.”
“Call 911,” I said.
Max was admitted to the hospital and was given a failure-to-thrive diagnosis 3 days later. Dr. Brown and the healthcare team suggested he spend 3 weeks for rehabilitation in a long-term-care facility. If he did not improve, he would be moved to the facility's long-term-care wing.
Kay agreed. “Since the doctor was so emphatic, I guess 3 weeks will be okay. I'm so tired; I need to rest, but I'll visit him every few days. Will you check on him once a week?” she asked. “And I don't want to be there when you tell him.”
“Certainly,” I said.
Max blinked back tears when the healthcare team and I discussed the plan with him. “I never thought my life would be like this,” he said.
He spoke haltingly with a flat affect, then looked around the room. “Where's Kay?” he asked.
“She had to run out. She should be back soon.”
He gazed at the doorway, a faraway look in his eyes. “I want to go home. I'm stronger now. I won't be such a problem.”
I took a deep breath. “Let's think more about this.”
He looked at me, his gaze implored me to agree with him.
“You'll get therapy twice a day and could become even stronger.”
He bit his lip. “Kay hates me being like this, but she married me for better or worse and needs to do right by me.”
“It's hard at home for both of you. Will you give the rehab program a try?”
Two days later, I met Kay in the rehab center's lounge. “You were right that I needed a rest from taking care of Max,” she said.
I leaned forward. “Taking care of anyone around the clock is exhausting.”
“I never realized how bone-tired I was until you pointed out how much I was doing for Max. Somehow, it creeps up on you.”
I squeezed her arm. “So many changes.”
“I must admit the last couple weeks have been wonderful. Not thinking about cooking dinner, helping Max eat, getting him ready for bed. Maybe this hospitalization was a blessing in disguise. Otherwise, I never could have gotten him here.”
“Sometimes, things happen in unexpected ways.”
She nodded. “Yes, maybe a sign from the heavens.”
I visited Max during the first week of his stay in the long-term-care facility. I found him sitting in a wheelchair, his head lowered almost to his chest. Except for an occasional yes-or-no response to my questions, he rarely spoke.
On the second visit, I talked with the physical and occupational therapists. I was surprised to hear them stress his willingness to do his exercises and his eagerness to follow directions even though he moved slowly. “We all like Max,” one of them said. “He's easy to work with, but he's barely meeting our goals for safe walker use and independent eating.”
Nursing staff found him agreeable to assistance with bathing, shaving, and dressing. “He even comes to our ice cream socials almost every day,” an aide reported.
In phone conversations with Kay, I found her enjoying her new freedom. “I walk with a neighbor now every morning and go out to lunch with friends on the weekend and volunteer at the museum again. “It's wonderful not to worry about Max every minute,” she said.
In a team meeting at the end of the third week, the staff, Kay, Max, and I agreed that Max would be moved to the long-term-care unit. His care needs exceeded those Kay was able to provide.
Max accepted the plan with a shrug. “It's not as bad here as I thought.”
Several months later, I ran into Kay in the long-term-care facility while visiting another patient. “You know, Lois, not having Max at home felt freeing. But now I miss him terribly. I visit him every day, rain or shine. He's talking more, too.”
I smiled. “A relief then to be a wife without all the caregiving responsibilities?”
“Yes, we're falling in love again. We kiss and hug now, something we haven't done since we were newlyweds. It's so strange. I don't understand it. Even Max whispers ‘I love you.’ He's not said that for years.”
“What a gift,” I said.
“I've got to run. Max is waiting. I baked cookies for him. Chocolate chip, his favorite.”
∗All names have been changed to protect privacy.