Often, I hear a complaint that is becoming more and more common: Rarely does anyone in the medical profession seem to listen to patients' caregivers about their health issues.
From my own experiences as a caregiver on many occasions, I am in agreement with this criticism.
While caring for my dad throughout a very long decade as he battled Alzheimer's disease, I found myself staring at him one morning and, to my utter astonishment, realizing that I now knew this man better than he knew himself!
At this point, his short-term memory had been gone for many years, but now his long-term memory was starting to dissipate at an extremely quick rate, right before my eyes. It was a helpless feeling to know that there was nothing I could do to stop this! He could no longer remember his childhood or where and how he grew up. I, on the other hand, knew his entire life's history.
Sadly, there comes a point where the disease will win and start stealing vocabulary skills. Having been with my father for so many years 24/7, I had learned his body language and could tell just by looking at him whether or not he was in pain.
Even when he was still communicating pretty well, if I asked him how he was doing, the answer would inevitably be "yes." This man hardly ever complained.
After all, he was from the "Greatest Generation," where pride outweighed everything.
So, let me ask you, who do you think the doctors and nurses should have been listening to, me or my dad?
When dealing with dementia, a whole different set of rules applies.
Another complaint I frequently hear is that there is virtually no communication between hospitals and nursing care facilities. For this I have to blame both parties. When patients are involved, information needs to be shared both ways.
At this juncture in my life I now find myself in assisted living and care facilities speaking on dementia care.
In fact, just a few days ago I was at one of these events and, sure enough, I heard, "The only time the hospital calls is to inform us that the patient is in transit back to our facility."
Because of this, I'm arduously working to build a better bridge of communication between both parties, family members and medical staff alike.
Without it, the ones who truly suffer are the patients.
Gary Joseph LeBlanc was the primary caregiver of his father for a decade after he was diagnosed with Alzheimer's disease. He can be reached at us41books@bellsouth .net. His newly released book "Managing Alzheimer's and Dementia Behaviors," "While I Still Can" and the expanded edition of "Staying Afloat in a Sea of Forgetfullness" can be found at www.commonsense caregiving.com.