How To Enhance a Client’s Life
Fortunately, most people do not worry about possible catastrophe and continue each day confidently. However, disability can occur and unalterably ruin someone’s life. The collateral damage of Parkinson’s or “Lou Gehrig’s” disease can make surviving with dignity nearly unattainable.
Care managers often follow clients over several years, even if the person moves to a nursing home. Care managers are equipped by experience, training, and personality to find ways to enhance a person’s life in a nursing home. It takes practice and, perhaps, talent to see the person still residing in the client’s diminished self. The care manager often must be creative and find non-medical solutions.
A remarkable case in point is that of Richard J. Russell, 62 and a CIA intelligence officer. In May 2000, Dick had a stroke in his brain stem and was left with something called Locked-In Syndrome. LIS is a rare neurological disorder characterized by paralysis of all voluntary muscles except for the ones controlling eye movement. [Point of reference: see The Diving Bell and the Butterfly (movie and book) by and about Jean-Dominique Bauby.]
In the first few days, a speech pathologist evaluated Dick and taught him the rudiments of communication. Multiple blinks meant “yes” and closed eyes meant “no.” Dick’s control of his eye movements was erratic and it was extremely frustrating. Unlike most LIS victims who die within the first year, Dick lived for more than seven.
Within two weeks of his stroke, Dick moved to a nursing home and became profoundly depressed. An immediate concern was how to teach the medical and nursing home staff how to communicate with Dick. It was important to emphasize that Dick was not deaf nor did he have dementia. A simple solution was posting a large sign above Dick’s bed, letting staff know how to interpret blinks.
A turning point came in 2001 when a private room became available in the nursing home. At first, Dick was opposed: “Too much money,” he said through lip reading. How do you tell someone that he might not live long enough to use his money?
Once in the new room, the care management team altered his surroundings. In came his beloved books, a TV with cable access, artwork from his home and a radio. The goal was to make the room reflect Dick’s personality and tastes. While it clearly helped Dick, it also impressed the staff. They began seeing Dick as someone with intellectual prowess, rather than a patient with severe limitations.
Keeping the Brain Alive
Dick loved books. He was an intellectual and he had hours to fill each day. The care team solicited a volunteer, Gail Briggs of Arlington, who in turn developed a network of volunteers to read to Dick. Gail found the volunteer readers, but Dick engaged and charmed each of them.
Dick’s reading material challenged his readers. His primary interest was history, but he also loved science and current affairs. In the first few years, Dick’s readers covered the Peloponnesian wars between Sparta and Athens, the history of Rome and the Crusades in the Middle Ages. Each volunteer read a different book, but Dick kept everything straight, knowing where he left off since the last session. As his group of readers grew, someone came each day of the week.
The irony of Dick’s situation was palpable. Here was a man who missed his solitary life, but who connected with so many new people. The care team, the volunteers, the nursing home staff and Dick’s college friends worked together seamlessly to bring vigor to his life. Each person related to Dick in a different way, but one reader described him thus:
“If eyes are windows to a soul, then Dick’s eyes are picture windows. His enormous blue eyes can smile at you with brilliance, turn dark and squinty with anger or frustration, or bring tears to your eyes when they get that Basset Hound look. In a situation most of us would find into”