When Your Loved One is Unable to Communicate Pain
Mom entered the hospital through the emergency room with a fever and in a daze; four days later she was discharged back to the nursing home. During that time period, I don't think Mom was able to describe to doctors how she felt and what her medical issues were. Was she in pain? When did she start feeling bad? None of this important information could be provided to the medical staff who were working with her.
So the guessing game began and we became dependent on the medical tests that were being run on Mom in the emergency room that Monday night. Initially, the results of the tests looked clear - chest x-ray, CAT scan, blood work. Still Mom had the fever and was labored in her breathing and generally non-responsive (although at one point, she was able to identify me as her daughter). The doctors initially projected that Mom's health issues might be a progression of Alzheimer's disease or could be the result of a stroke (noting that often, the signs of a stroke don't show up on medical tests until 48 hours later).
By Tuesday, Mom still was out of it, being treated with antibiotics just in case. The hospital resident doctor (who was assigned to Mom's case) indicated that Monday night's hypothesis held. And then we waited.
By Tuesday afternoon, Mom was beginning to be a little more alert, but still wouldn't talk. By Wednesday, the culprit that had caused her hospital stay had finally revealed itself - Mom had early stages of pneumonia that started showing up on the follow-up tests. Mom was more responsive, watching everything that was going on and being willing to eat if someone spooon-fed her meal to her.
During the hospital stay, even though Mom's latest health crisis had been identified, I quickly learned that there may have been other health situations in the past when Mom couldn't vocalize that she was having a problem. For instance, one of the nurses asked whether Mom had ever suffered a stroke before. Dad and I indicated that we didn't know, and asked why. The nurse indicated that one side of Mom's body was so constricted that it was difficult to get her to straighten out the limbs when turning her. If Mom ever did suffer a stroke that caused this constriction, she was not able to voice it to her family and the nursing home staff (although she maintained her verbal abilities throughout these years). So I have to assume that dementia limited her ability to know when she was in pain.
Dementia is a cruel disease in itself, but it becomes even crueler when it compounds the suffering of a loved one who can't express what is medically happening to them when suffering another ailment. The caregiver can watch and try to read the signs, but sometimes those signs just don't show up.