I was talking with some friends the other day, we are all daughters who are caregivers and advocates for our mothers and fathers, our parents who live in a variety of residential communities. Our parents, in their working careers were teachers, emergency room nurses, and business owners. Now they must rely on other people to help them with their daily needs: bathing, dressing, feeding, and toileting.
If you call my Mother by her proper first name she immediately puts up her guard. She hates her name. She has been calling herself by her chosen nick-name since she was 17. And now, as dementia has taken hold, anyone who calls her by her proper name is the enemy. Long gone is the cheerful retort "Oh, please call me Wxyz."
This caustic reply to hearing her proper name makes it difficult to get her to cooperate with anyone who is trying to help her. The other day a new volunteer was delivering the mail, and of course, it was addressed to that name.
"Oh Tuvwxyz! I have some mail for you." the volunteer cheerfully said. Immediately my Mother glared and scowled at the poor volunteer.
My Mother has had the same doctor for may years, the office staff and the nurses in her office know Mom well. They have been there, through all this, seeing the changes in my Mother. On the front of the folder that holds her medical records it says in big red letters "Call her Wxyz".
Last year, the doctor's office changed from paper to digital records. The nurse and doctor no longer carry the fat folder of papers, they use a laptop. A new nurse poked her head in the waiting room and asked "Tuvwxyz?" I could see my Mother's guards go up, I could see the scowl and anger on her face. Great, I thought, now she's in a defensive bad mood.
There is no place on Mom's digital medical record to write in big red letters "Call her Wxyz or else!"
So, my friends and I were talking about our parents. About the great care they receive and about the could-be-better care they receive. How other people treat those with disabilities; about respect and compassion. About the people who "get it", who understand communicating with people with dementia, and those who don't.
We all agreed on something. We don't like being called "dear", "honey", "sweetie", or "darling" and we know our parents don't like it either. It is condescending. Like my Mom, these other parents, as they are now, cannot formulate the sentence to say "I'm not your sweetie, please don't call me that, please call me Wxyz." They can only react with a scowl and a bad mood.