Lately I have seen a number of patients in clinic who come with a caregiver or family member. The patients are really ill and the caregiver generally manages everything from food to medications to bathing to appointments. Often times the more precise and organized the caregiver the better the patient does.
The caregivers are usually able to provide all the pertinent information about the patient. Name, age, date of birth, most recent medications, any side effects, appetite, skin condition, bowel habits, sleep. The visits can be really efficient. But…
On Friday I saw a patient who was pushed into exam the room in a wheelchair. The chair was much too large for her small frame and she looked like a miniature version of a human in the oversized brown pleather chair. She sat slightly slumped over in a tan track suit and diabetic shoes. Her family member brought her in to the clinic. Her family member managed everything. And this patient would probably not have been alive without this family member. And the family member started rattling off all the medical issues that needed to be addressed, briskly and in order of importance. I listened. I took notes. The list was long.
I looked at the family member and nodded. I glanced at the patient intermittently and tried to catch her eye.
“She’s basically blind,” said the family member noticing me looking at the patient, “she can’t see you.”
I nodded. The list went on. We started to address the items that could be dealt with that day.
Most of the list was addressed. The family member was satisfied, no questions. The family member rose to leave.
“Wait,” I said. The family member paused.
“Do you have any questions?” I asked the small woman in the very large chair as I squatted on the floor in front of her. “Do you have any concerns?”
Silence. “She’s basically blind,” said the family member.
Then a look. That look. That look on the patient’s face that comes when someone has spoken to them and they did not expect it. That look of warmth, of mattering. That look of shock. Of realization, that they are a part of this, this conversation. Of fear, not knowing what to say. Of forgetting, how to talk and how to respond when no one has spoken to you, for so long. But instead over you. Or around you. Or about you. But not with you.
I have seen that look far too often in recent days. It breaks my heart.
And as my heart was breaking the patient whispered, in a coarse, gravelly voice, “no, I have no questions. And thank you.”
Mattering. I feel such sadness for the little overlooked lady.
Thank you for reminding us that all people deserve a voice.
The people who take on this role of caregiver are working so hard and doing so much. Lately I have seen this look more often than usual from patients. I think it is all the additional strain and stress on people and it is easy to forget about the person you are caring for or about. As I have seen this look over and over I finally felt driven to write about it. At the heart of it all it is about what matters most.