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Caring for the Caregiver
by Linda Owen
A middle-aged man, dragging a stiff, immobilized leg behind him, forces himself to cross the room. A blonde woman is talking with a bottle cap in her mouth. Six other adults, all accompanied by their caregivers, struggle to move to empty chairs. These are medical, nursing, social worker and psychology students, all experiencing what it's like to have physical disabilities caused by rheumatoid arthritis, stroke, and multiple sclerosis.
It's not a usual day for the sixteen students in Dr. Alicia Conill's classroom at the University of Pennsylvania medical school. Here future physicians and health professionals are participating in The Disability Experience, in which they are assigned roles as either patients or caregivers and told to stay "in character" for up to 26 hours.
Tomorrow, they will return with tales of troubles finding handicapped restrooms. At the grocery store, they have been unable to reach items on tall shelves. At the library, they were unable to make a photocopy from a wheelchair. Worst of all, they have been unable to sleep or turn over in bed because of the weights placed on their legs.
The positive impact of this exercise is that they experience just a few of the personal effects of illness and paralysis. Thanks to this curriculum, provided by the Conill Institute for Chronic Illness, medical students learn that empathy for the patient means more than taking the Hippocratic oath. It means understanding how frustrating it is to rely on someone else for your mobility. It also means being aware of the stressful role of caregivers and the importance of taking care of their needs, too.
Dr. Conill knows firsthand about living with a disability. Since 1986 she has been living with multiple sclerosis (MS), a disease of the central nervous system that interferes with the brain's ability to send and receive messages that control movement.)
"At age 45, when I was diagnosed with MS, I thought I understood what it was like for my patients. But I never really understood until it happened to me," she explains. "It was through the repeated experiences of struggling to accept a body that seems to betray you, relinquishing control, needing to ask for assistance with tasks even a child can perform and having to redefine my role in a profession I cherish that I truly understood."
The Conill Institute's practical and interactive programs have trained professionals across the country to increase compassion, commitment, and communication in their work. The Disability Experience has proved so successful that the University of Pennsylvania requires all its medical students to enroll in a modified version of the program (each spends time as both caregiver and patient.) Since 1998, over 2,000 individuals have participated in Conill's program. Other classes offered by the Institute include The Art of Living with Chronic Illness, When Some you Love is Sick and Issues Facing Women with Disabilities.
Conill's Own Disability Experience
Conill served as chief resident in internal medicine at Mount Sinai Hospital in New York. When the first symptoms of MS appeared in 1986, her first reaction was deep denial. The next decade was a difficult time for her both personally and professionally. In 1995, her father died of Alzheimer's, a longtime romance ended and she was forced to give up her medical practice because of lack of sensation in her hands. She also sold her home, a three-story townhouse with a spiral staircase. Eventually she started using a cane, then a walker, a scooter, and finally a motorized wheelchair.
But it was what came next that transformed her life and the lives of countless others: She used her inheritance from her father to found the Conill Institute and took a senior post in Penn's Health Care System. "The sicker I got, the more stubborn I became," she says. "My depression was followed by a new purpose—teaching medical students how it feels to have a debilitating illness."
According to Conill, almost 100 million Americans have one or more chronic conditions that cause illness, disability, and death. Forty million unpaid family members are the primary caregivers for loved ones in the U.S. Although traditional medical curricula use a heavily didactic approach for the first two years with students only viewing illness from the outside, Conill felt that these rising numbers called for changes¾and she decided to provide programs to increase sensitivity and understanding of those who are disabled.
"Empathy requires an ability to feel, care and connect on an emotional level, and it's a critical component of healing," she says.
Conill teaches students to "talk to patients at eye level. People in wheelchairs can't stand and shake your hand. Address patients, not care partners. Then allow care partners to provide additional information that you might miss in talking [only] to patients. Evaluate the whole patient, and care, even if you can't cure," she tells them.
Her advice to at-home caregivers: "It's very important to take care of yourself. Because you are caring for someone you love, you will tend to put your needs aside. If you do that, it takes its toll on your body and spirit. You'll become resentful and depressed. Have a friend or relative come in a watch TV with the person being cared for, so you can go to the mall or find relief in some other activity away from the house."
Talking is also important, Conill says. She suggests setting aside time to have a one-on-one conversation. "This may save the relationship in the long run, because misunderstandings and resentments can be avoided," she says.
Today, Conill lives in a Philadelphia suburb with her domestic partner, her son, one dog and rotating full-time attendants.
"I feel blessed to be able to work," says Conill. "When people feel productive, they feel whole. Companies need to understand this and hire more people with disabilities. After all, any one of us could become disabled at a moment's notice."
