I am going to begin this column with more than just a spoiler alert. If you have never read the short story “Flowers for Algernon” by Daniel Keyes, put down this paper immediately. Go buy it, or download it, or whatever, and read the story. You may then continue reading this column. If you fail to follow these instructions, I will have ruined for you one of the true masterpieces of literature.
Flowers for Algernon is a story about a mentally handicapped man who is selected for an experimental surgery which will increase his IQ. The surgery works, and he becomes a genius. However at the turning point in the story, he realizes (as he is now smarter than the scientists) that there is a flaw in the treatment, and the increase in his intelligence will be only temporary. The absolute horror that he feels, when he realizes that he is going to regress to his previous condition, always hits me right in the gut.
I think of Flowers for Algernon periodically, when I meet with clients who are in the relatively early stages of Alzheimer’s disease. There is a certain point, which may not last long, when they know they have the disease, but they are still relatively clearheaded. Later they may become paranoid, or oppositional, or so confused that they no longer have the ability to act sensibly to address what is coming. In that moment, there is still the opportunity to act. But there is also horror.
I have often thought, as I looked into the eyes of people who were in that period of clarity, that the realization must be terrible. Imagine, if you have never dealt with this yourself, knowing that you are going to go through a rapid mental deterioration. That you will lose your most precious memories. That you will become a burden, perhaps an embarrassment, to your own family. That your very personality, all of the things about you that make you who you are, will fade into something completely different.
That the young woman you didn’t recognize when she came in the door, who left with tears in her eyes, was your beloved daughter.
And I feel for these people. I cannot imagine anything worse. I tried to. The closest I could come was someone who has just been informed that the governor will not be calling, and in a few minutes he will be taken down the hall to the death chamber. But even then, he will at least die knowing who he is.
In those moments, though, I don’t get to spend a lot of time feeling and sympathizing. I don’t have that luxury. I am not a minister or counselor, and this person didn’t come to me to hold his or her hand. I have to give that client some hard legal answers. What is it they need to do at this point? If they are clear enough to ask that question, I need to be clear enough to answer it.
The exact details of what I recommend will depend on that person’s situation. It may involve an irrevocable trust, a health care directive, an open power of attorney, or signing over accounts to a loved one. One way or another, it will involve handing over control to somebody they trust. It won’t save them from the tragedy of going through Alzheimer’s, but at least it will help – a little bit -- to ease the burden on those they care about.
Unfortunately many of these people wait too long. Stubbornness can be an asset when one is fighting a dread disease. However in these cases, stubbornness can lead them to hold on too long. And they can reach the point at which the inevitable confusions created by those plaques and tangles in the brain will take away the clarity they once had, when they could have done something proactive, in that Flowers for Algernon moment.
And then it’s too late.
Kenneth Kirk is an estate planning attorney in Anchorage.
