By Lois Gerber, RN, BSN, MPH
It was my first nursing visit to Thad and Larissa. The three of us sat around their kitchen table discussing how to best manage an exacerbation of Thad’s multiple sclerosis. Tears welled in the corners of Larissa’s brown eyes as she twisted a strand of her strawberry blonde hair around her finger.
"His MS seemed to get worse overnight," Larissa said. "He can’t walk up the stairs anymore without hanging onto the railing for dear life. [Our doctor] says it’s time for a stair lift."
"I can beat these new problems," Thad replied. "Prayer, persistence and exercise. My sales manager suggested a disability leave, but I refused. Give me a month here at home. I’ll show him." His hands shook as he hitched his belt over his potbelly. "There will be no damn chair lift in my house. Mind over matter."
I took a deep breath, remembering that the physician referral documented an exacerbation of an aggressive form of MS that limited the chance of significant recovery. Double vision accentuated his mobility problems.
Hope and unrealistic expectations — a common but difficult scenario I’d often seen in my work as a home healthcare nurse. But how to best help Thad accept his limitations while keeping hope in his heart? And convince Larissa to encourage her husband to be as independent as possible?
First, I needed to do a complete assessment and work with the couple to develop an effective long-term care plan with an overall goal and the individual steps to accomplish it. Without realistic expectations, Thad and Larissa’s fears and anger would further the family dysfunction.
I paused. "Thad, physical therapy can strengthen your muscles and improve your walking. An occupational therapist can teach you ways to deal with small things like brushing your teeth and shaving."
"I’ve already had two stints with them and learned everything I need to know," he said, clenching his fists.
I looked at Thad. "Let’s make a deal. You agree to have physical and occupational therapy for four weeks and I’ll visit twice a week, communicate with the doctor and follow up on any problems you have. Then we’ll talk about the stair lift."
Over the next month, I counseled Thad and Larissa, individually and as a couple. "I’m scared what will happen to me if Thad dies," Larissa admitted one day while we were alone, reviewing handouts on managing the disease.
"That’s understandable, but overprotecting him and not letting him do what he can safely do hurts his rehab potential." I highlighted sections in the pamphlets that pertained to caregiving.
She frowned. "I’m angry at him for getting sick and feel guilty about that, too. We’re only 55. If he got hurt, I’d blame myself. That’s why I’m overprotective. I’m scared."
I nodded. "All your feelings are normal. Most caregivers feel the same."
"No one else I know has to deal with MS. I’m alone, depressed."
"The Multiple Sclerosis Society has a caregiver support group that meets every week at the city library. That’s where you’ll find people who feel just like you. Talking with them will help."
Thad’s fear and anger manifested in denial instead of depression. "It’s hard to get the mind and the body working together sometimes," I told him. "With a chair lift, you could save your energy for things that are important and that you enjoy."
"Like going to work?"
"That could be a realistic goal. What about cutting back to three days a week?"
He smiled. "I can live with that. And Larissa’s right. The stair lift is a good idea."
Helping clients set realistic goals is important to keep hope alive. Unrealistic goals foster fear, denial, anger and depression. But without hope, clients lose the moorings for their lives.