A slightly different take on doctors talking to caregivers and making patients feel invisible. During the prep meetings for my SCT, one of the meetings required that both patient and caregiver attend. My 22 year-old daughter was my caregiver and being who she is, had not read any of the read-ahead materials. When the doctor started to talk about the risk of the procedure (i.e., 2% of patients can die from melphalan), my daughter freaked. The doctor continued to ignore her questions. She went into full aggressive mode to make him listen to her, I tried not to laugh because she made him feel like the ass he was being, and he learned an important lesson about talking to both patients and caregivers.
That same 22 year-old insisted on staying with me the entire time during the transplant, saying, "Mommy, I know you better than anyone." When I got really sick from the melphalan, she made sure they moved me to in-patient, she took care of me the first week I was home, and she came home every weekend until I was back on my feet.
I never felt either invisible or smothered by her. Some of my friends and family, yes, but not my wonderful daughter.
Forums
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darnold - Name: Dana Arnold
- Who do you know with myeloma?: self
- When were you/they diagnosed?: May 2009
- Age at diagnosis: 52
Re: Patients and caretakers
Dana, if that were my daughter/ or family member, I would be proud! But especially being your daughter at such a young age. Maybe not always, but there are times when the patient needs their caregiver to stand up and be "heard". Oncologists seem to be the best exception when it comes to doctors. But no matter who they are, some doctors need to be reminded that their patients are people.
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