You don't have to yell

“You don’t have to YELL.” – Mom, to the neurology team, June 15, 2008

Suffice it to say that mom and the neurology team won’t be getting married any time soon. Yesterday marked mom’s fourth unpleasant encounter with the loud talkers-come-neurologists. For some reason, they insist on talking to mom like she’s a child. Unimpressed, mom typically doesn’t respond, which only encourages the team to ask more inane questions like “Mary, can you say ma-ma” right in her ear. D embarrassed one doctor after a particularly “frustrating” encounter with mom (at least to them). The doctor was asking mom what she thought of the weather, and, of course, mom didn't respond. Hey pal, she hasn’t been outside in days, and happens to be turned away from the window, so pardon if she’s not so Johnny-on-the-spot with her assessment of Denver’s climate. Frustrated, the lead doctor mumbled to his apprentices “see, she can’t do anything.” Matching the doctor in frustration, Diane walked over to mom and asked her “mom, do you like tofu?” which mom replied “hell no!” What they haven't yet caught on to is that mom can, and will, talk if sufficiently motivated; asking redundant and often annoying questions is clearly not the way. Some of the neurology students were visibly touched by this exchange and even lingered to hold mom’s hand. Shortly after, they began speaking to her as an equal -- not as an invalid -- which you’d think would be standard given their profession.

Aw, but how quickly memories fade. Just the next day, some of the students returned only to yell louder. Tired by the emotional bullying, mom finally told the neurology team “you don’t have to yell.” She then began to cry. Unaware of the trauma that their questions induced, the neurology resident chalked her emotions up to steroid fatigue. True, she’s been crying a bit more these days, which could be the steroids – they have a habit of playing toss with one’s emotional state. However, she could also be expressing genuine feelings of frustration from being trapped in her body, and unable to speak.

Mom is there; her essence is there. You can see it in her eyes, and the way she furrows her brow. She watches us; laughs when we laugh, and cries when we cry. She’s there, and to be talked down to on a daily basis after having achieved so much in her rich life must be the second cruelest joke -- the first being the sense of invalidation brought on by someone assessing real emotions as steroid fatigue.

The next day, the group returned along with the chief of neurology. Erin and I had stepped out for breakfast, and entered her room just in time to find Diane crouched around mom, with perhaps seven neurology students huddling beside her. E and I immediately asked what had happened, and the neurology fellow explained that mom became “emotional” again during their exam. E and I watched as the chief doctor continued to poke and prod, all the while telling his eager onlookers “see, look at that, see that.” Diane finally asked them to speak TO mom and not ABOUT mom and to explain to her what they’re doing. The chief doctor said he couldn’t, and waved Diane off. The next day, Diane and I spoke directly with the two neurology students that had been following her care, and asked that the team reduce the number of students allowed in mom's room, and that they try to improve their communication with her.

Engaging with patients and family members in a respectful way is also a valid teaching moment. We’ll see whether these teaching moments will actually lead a change in behavior.  Somehow, I doubt it. -- J