The nuns were singing to me this morning as I woke up. They had left Julie Andrews, i.e, “Maria,” out of it and had supplanted her name with the word “dementia.”
You know the song, from The Sound of Music, and I’m going to bet you can sign a few bars. You likely recall that the nuns were, in a gentle sort of way, complaining about the flaky and impulsive young rookie nun in their charge. As it was a musical, they sang a little song that encapsulated all that drove them nuts about Maria, but they did so in a way that was, I think, compassionate.
Here’s a stanza:
When I’m with her I’m confused
Out of focus and bemused
And I never know exactly where I am
Unpredictable as weather
She’s as flighty as a feather*
Those singing nuns spoke of their own experience as observers and participants in Maria’s life. If you recall, they smiled through the entire song never once took a tone of angry in the singing of it.
So when I woke up this morning with this tune in my head, albeit with the lyrics altered, I knew why.
Over the last few years, I have been witness to the slow decline of the brain function of someone I know in my community. It hasn’t been easy to watch.
When I first noticed it, I said something. Well sort of . . . I said something to this person’s spouse who was not ready to admit there was a problem nor willing to address the concern directly. I left that conversation thinking, “I must have gotten it wrong. Of all the people who would know whether there was a problem . . . ”
Unless of course denial was playing a large role, which looking back now, I think it was.
I have a good friend who works for the state in “elder protection.” She’s told me that the ultimate test on whether dementia has advanced to the point where intervention is needed is “safety.” Simply ask whether the elder is, despite the occurrences of illogical/incoherent/non-sensible thought patterns, putting himself/herself at risk. It’s just that simple.
Or is it?
What happens when the day comes that this elder, who no one has ever admitted or diagnosed as clinically suffering from dementia, ends up not putting himself/herself “at risk,” but puts someone else in a very bad situation? Then what? How do we as a community recognize the risk (stemming from the elder’s cognitive deterioration) without blame while still objectively seeing his/her actions as a complete abandonment of insight and judgment?
You’d think involving the person closest to the compromised elder, e.g., that person’s spouse of many decades, would make sense. I did, too.
But what happens when dementia is married to denial? What sort of kid gloves do we as a community need to put on to tease out the matter?
No one wants to admit his/her brain is not working the way it used to. No one wants to care for someone whose personality has taken on an edge of angry, borne of self-frustration. No one seems to want to deal with the very clear reality that things aren’t right and that people could get hurt.
Many a thing you know you’d like to tell her
Many a thing she ought to understand
But how do you make her stay
And listen to all you say
How do you keep a wave upon the sand*
Maybe the best thing to do is don a habit, slap on a smile, and grab a six-string. Because much like the waves on sand, you can’t reasonably foresee how things are going to look day after day (year after year) when speaking of something as unpredictable as dementia.
Attempting to do so is like trying to catch a cloud and pin it down or hold a moonbeam in your hand.*
*Thank you, Messrs. Rodgers and Hammerstein.