My mother lived three months from the time she was diagnosed
with advanced stage lung cancer until her death. In that time she endured chemotherapy,
pneumonia, a urinary tract infection, untold finger pricks and jabs to manage
her Type 1 Diabetes, and at the very end, one furious-looking and persistent
bedsore. But if I were to name the single ailment that most robbed my mother of
dignity and comfort in her last weeks of life, it would be the C. diff
infection she contracted during her first hospital stay – the hospitalization which
led to her cancer diagnosis.
My mother was a very private and dignified person. The diarrhea that plagued her multiple times
a day, every day, in her final three months left her feeling depleted,
defeated, and embarrassed. On days she was feeling well enough to get out of
bed, she would brighten at the prospect and then say, “Oh, no – I guess I
shouldn’t,” fearing that any movement would require yet another cycle of
assisted hygiene. She never uttered a word of complaint about any of her
ailments or the care she received, but my sisters and I knew the shame she felt
in those first days at home, when we were all still adjusting to what it meant
for my sisters and me to manage all aspects of her care.
While my mother was in the hospital, there was a large
yellow sign posted on her door, alerting all visitors and caregivers of the
necessary precautions to prevent spread of the C. diff infection to other
vulnerable patients. It reminded those
entering her room to wear disposable gloves and gowns while in the room and to
wash their hands with soap and water as alcohol-based hand sanitizers may not
effectively destroy C. difficile spores. A waist high cart stocked with gowns
and gloves was placed in the hallway right next to her door. And yet it was the
exception when a doctor, nurse, or housekeeping assistant followed either rule.
In my grief and exhaustion, in my utter
dependence on these caregivers to get my mother water when she needed it, to manage
her nausea, dispense her meds, explain the cause of her delirium, talk to each
other about their conflicting care plans, I never said a word.
I wish I had the courage to speak up, but I also wish that I
was made to feel confident about doing so. Confident that speaking up would
cause people to be more diligent about taking the required precautions, but
also confident that my mother’s care would not suffer as a consequence. Maybe if somebody else had spoken up in the
weeks prior, my mother would have been spared this particular indignity.
Have you ever spoken up?
What was your experience?