NO SECOND GUESSING

A nurse attended one of my meetings several years ago. She had to leave to catch a plane before the meeting ended, but she left me a copy of a book she had written. She was terminally ill and had experienced the medical maze up close and personal. The title of her book was If You Want To Know If You Are Dying, Ask The Cleaning Lady. The title alone made this a great book. The subject of the book fits what most of us experience while under long term medical care. 

The constant cry of patients everywhere is "The doctor never tells me anything," Matter of fact most medical lawsuits are for information. Patients feel like things were hidden from them that they needed to know. Months of this feeling leaves them angry enough to look for some way to get even, and everyone knows an attorney. 

I am not sure the criticism is always valid. It may be that even when doctors do talk, the family does not comprehend what is said. The anxiety level is so high, the fact that most are awed by doctors and get tongue tied in their presence, and often the conversations happen out in the halls of hospitals where there is mass confusion— all go together to make it very difficult to grasp what is being said. 

This means most of the primary caregivers feel like they are walking through a fog and just trying to guess what should be done medically for their loved one. Rarely do they feel confident they are making the right decisions and getting the care needed. Mostly they just hope so, and they don't know enough cleaning ladies to find out where things really are.

Then the family comes to visit and the medical questions begin. The primary caregiver can feel like they are being interrogated by some enemy. "Why is the doctor giving her this medicine? Why don't you take her to another doctor and get a second opinion? My neighbor's mother tried this and she is now going square dancing!" It seems to never end and, when you already feel insecure, it can overwhelm. 

As the years pass and the loved one needs more care the situation becomes even worse. When the end is near and some of the hardest decisions anyone ever has to make are facing the caregiver, the insecurity can devastate them.

This means the family must refrain from second guessing the care. If you want to be in on the medical decisions then take the time and make the effort to be there when the major visits to the doctors are made. That is the only way you can really know what is being said and what reasons are being given for the care. If you will not or cannot be there, then bite your tongue and hush. If you are convinced that the loved one just must go to some specialist or some other hospital, then sit down with the primary caregiver and offer to take the loved one there. Too often families sit back and almost order the caregiver to follow their instructions. The caregiver is just what the name implies, they are there to give the best care they know how. They did not sign up to work for the rest of the family. Far too often that is how they are made to feel. Too many families like to hang the care on one person and then sit back and criticize how that person does the job. They feel like criticizing is their contribution, and takes the place of understanding support. 

Maybe we need family meetings which feature a ceremony of tongue biting. If you have questions about the care, go ask the doctor or find the cleaning lady.