Honesty is the best policy. This adage is true for so many reasons and on so many levels, but can mixing honesty and Alzheimer’s sometimes make a bad situation worse?
Honesty and Alzheimer’s don’t always mix
There is objective truth and there is subjective truth. 5 x 3 = 15 is an objective truth; it is true everywhere and for everyone. A headache is a kind of subjective truth. If you have a headache it is very real for you, and you can convince someone that your head does indeed ache, but you cannot share your headache with that person no matter how descriptive you are. He can not share your pain. Of course, if you do go into great detail about the pain you are in; if you describe it and illustrate it with endless examples; if you drone on and on about the discomfort you are experiencing, you just might give your friend a headache of his own. But that, then, is his headache and different from your headache.
There is another degree of truth that lies somewhere in between. If I were to tell you that 5 x 3 = F you might tell me I am wrong. If I insisted you might say I’m crazy or even lying. But 5 x 3 is equal to F in the hexadecimal number system in which there are fifteen numbers, 0 through F, instead of the familiar 0 through 9 of our decimal system.
A trick, you say. Well yes, it is kind of a trick. But a trick to make a point. I didn’t define my system, my universe. If I told right off that “5 x 3 = F in the hexadecimal number system,” you would understand, even if you are not totally fluent in hexadecimal. You would at least know I was working in a different system with different rules. Bernice was like that. At one point in the progression of her disease she began working in a different system. Bernice would often ask about her mother: “I wonder how my mother is,” or, “I should call mother.” Bernice was, herself, well into her eighties or even in her nineties by this time. Her mother had been dead for years, at least in our universe. Bernice had left that universe some time ago; in her universe her mother was still alive.
You see, subjective truth is relative. We didn’t know Bernice’s mother; she was dead before we met Bernice. Bernice told us that at one point, and it also stands to reason that if Bernice was 87 or 93 years old her mother was, in all likelihood, no longer with us. Bernice’s mother is gone from our universe, the universe we share with most adult human beings. At the time we met her, Bernice’s universe more closely coincided with our own. Once Alzheimer’s disease had taken hold, that was not so much the case, and in her universe, Bernice’s mother was still alive. That was her truth, subjective though it was. To insist on being truthful relative to our universe – “Bernice, your mother has been dead for forty years.” – could have brought her universe crashing down around her. Hardly worth it, I think. Certainly not productive.
The trick was allowing Bernice to be in her reality while not allowing her to obsess over some part of that reality. Holly was once visiting Bernice in her memory care center. Bernice told Holly that she wanted to visit her brother, who was working on the third floor. In Bernice’s universe her brother was alive and he worked on the third floor of the building she was currently living in. In our “more objective” universe, her brother had died several decades ago. And she lived in a single story building. To tell Bernice that there was no third floor would likely confuse her and put her on the defensive; probably not too troublesome a correction to her reality. To tell her that her brother died long ago could re-start a grieving process that was resolved long ago and would be better off left alone.
Bernice was insisting that the “people” (the staff at the center) would not let her see her brother, and she was on a mission to find an elevator or stairway, until Holly said, “maybe today is your brother’s day off.”
“I didn’t think of that,” she replied. “I bet you’re right,” and Holly and Bernice resumed their visit. Technically a lie, but it was a truth that conformed much better to Bernice’s reality. It was what Holly likes to call a “fiblet”, a little untruth that makes reality a lot more pleasant for everyone concerned.
I know that not everyone will agree with me. Some people insist on being entirely truthful all the time. We once had a comment on our post about a facility in Holland that was made to look like a little town, with shops, a theater, etc. Called Dementia Village our article concentrated on how the quality of life is enhanced for the people with dementia who are living there. This has been by far our most popular blog post, in one month attracting over a half a million views, and almost everyone is amazed at how great the concept is. On the other hand, at least one person didn’t agree, saying that we should never lie to a person regardless of “the patients (sic) mental state.” He considered that housing a person with middle to late stage dementia in a care facility that was designed to look like a small village is a lie.
Boy did he get reamed by other visitors.
One might just as easily say that living as we do in a world that is entirely dependent upon a fabricated economic system is also a lie. It’s a matter of degree. My thought is that someone who is so opposed to the telling of fiblets to a person with dementia, or to constructing a care center for them that is not exactly what it might appear to be, is taking that position to support his or her self-righteousness. It’s not a position that helps those who are really in need of our help.
Honesty and Alzheimer’s is an ethical issue, and as such is not always black-and-white.