The Blue Shorts

The other day a sales rep was demonstrating a new piece of equipment that makes it easier to transfer bedbound patients, a modern version of the old “gurney chair.” I started thinking about people for whom it might be useful. That led me to remember a very special patient/caregiver relationship from my home health days.

The patient was a young woman in her early thirties, stricken with a very rare form of multiple sclerosis that never went into remission.

It just kept marching forward, slowly taking away her ability to walk, then stand, then even move in bed without assistance. She had graduated with honors as a science major and was on her way to becoming a doctor when she became physically incapacitated. We were called in to reassess her equipment situation, as the young woman had begun to have more pain when she was being transferred out of bed.

Her mother was her caregiver most of the time, although she did have help every day. But she rarely left the home and it became clear that her daughter was her reason for living. The photos on the wall made this understandable. The withered young woman was once stunningly beautiful and her framed diplomas spoke of a brilliant mind.

It was also clear that our patient was “in there.” She would laugh at our jokes with the little movement she had left in her face. She could answer yes and no by blinking her eyes. We called in the speech therapist for swallowing issues but our wonderful speech therapist soon had other ideas. She would try to get approval from Medicaid to purchase a computer that works on eye movement. By looking at an icon on the screen, she would be able to communicate at least some basic thoughts and needs. First the therapist needed to make sure that our gal had enough control of her eye muscles.

The day for the trial came. The computer was set up. The first question: What would you like to wear today? The young woman looked at the screen and chose “blue.” And then: “shorts.” Her mother began to cry. Apparently in her college days, the young woman had a favorite pair of blue shorts that she practically lived in. Her mother was always nagging her to wear something else once in awhile. It was a classic mother/daughter tug-of-war that mothers of teen daughters are so familiar with. When her first opportunity came, some 6 years later, to communicate with her mother, she teased her about it with her clever sense of humor that remained intact despite her physical limitations.

There are many difficult and heartbreaking days for caregivers, but once in awhile a miracle happens that makes it all worth it. On this day, for the dedicated and loving mother, it was “blue shorts.”

And yes, the computer was approved.

 

Tagged as: caregiver, home care, Mary Horton Sondag, multiple sclerosis