Keeping a Confidence, Protecting Dignity
People who are living with dementia undergo a lot of change and a lot of loss. We as caregivers have the ability to help protect the one thing that we all want to hang on to, our dignity. Early after a diagnosis is made, we need to have some hard conversations about the future and give our loved ones an opportunity to tell us their wishes. Then, we have an obligation to uphold those wishes to the very best of our ability.
I was saddened recently to hear this statement, made by a close family member, to the wife of a man living in the mild to mid stage of dementia. "Well, I didn't promise him I wouldn't tell." Really? I think she missed the point. Her excuse? "The person I told needed to know, just in case ________ said something out of the way." Well, what if we wait to see if "just in case" ever really happens, then see if it really even matters. In my experience, unless something is repeated multiple times, people will generally shrug their shoulders and move on, no explanation needed. If they do ask questions, then we decide how much information we are able to give without betraying a confidence.
A dementia diagnosis doesn't mean that the person living with dementia should suddenly lose their right to privacy? Dementia is a disease that damages the brain, but in the early and middle stages the person living with the diagnosis can still experience a sense of embarrassment. Their ability to reasonably assess the excuse for betraying their confidence however may be skewed, which can lead to behaviors much more dangerous than saying something out of the way. They may develop a lack of trust for those who are caring for them, become angry, perhaps combative, or just shut down altogether.
By the end of the caregiving experience, there will be times when you truly must make decisions that your loved one may not have really wanted. But while you can, do what you can. Follow their wishes, treat them with the dignity and respect that you want to be treated. Involve only those who are supporting you and providing assistance, and don't worry about the "just in case", it will generally take care of itself.