It has been 11 months of caregiving for my husband with cancer.  That was just the start.  His symptoms evolved and changed and now we’re looking for root causes of his tremendous pain throughout his pelvic floor.

Here’s the thing, he’s writhing in pain.  He can’t stand, sit or lay down for too long so he can’t sleep or eat.  He has kidney infections.  I’m wondering if it’s just the infections or more.  After three weeks of no sleep and excruciating pain I ask him if I can take him to the doctor.  After four weeks I ask if I can take him to the emergency department.  At five weeks, “How about if I call your doctor for you?”  Each time I get chewed out.  I mean, he’s pissed and I’m stupid, because I don’t understand.  “What can the doctor do for me?  I know what it is.”  I think to myself, really? then do something.

Finally, at six weeks my husband emails the doctor on a Friday… great.  Nothing will happen now for another week.  Neither of us are getting any sleep.  I hurt to see him in such pain and can’t talk to him about anything. 

What I learned was, had I had a medical degree I could have explained exactly why my husband had to go to the emergency.  Had he heard a logical and reasonable explanation he would have done something.  Mr. Smarty Pants Husband isn’t so smart and that’s challenging. 

Lesson for caregivers;  if you have a ‘too smart for their own good’ loved-one, get some coaching from a nurse.  Our nurse was able to explain ‘why’ my husband had to go to the emergency department.  They have the right equipment for running cultures, radiology and anything else that the doctor’s office doesn’t have; and they would take another week or two to schedule and process.  The sooner you, the caregiver can establish good communications with the medical team, the better.  They are trained to listen, have empathy and can walk you through ‘why’ you need to do certain interventions.

Thank you nurses everywhere. You are the heart of good care for us family caregivers.

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