Wandering by Choice
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Dr. Allen Powers, M.D., is author of the book, Dementia Beyond Drugs: Changing the Culture of Care
Dr. Al Powers:
I was speaking in Ohio earlier this month and had an experience that reinforced an important lesson for me. I was giving a community talk on dementia and a TV reporter came to interview me before the talk. We put on the microphone and launched into a 10-minute conversation on camera. She asked a lot of good questions, and then as my message became clearer to her, she threw me a curveball.
She said, "A man disappeared from his house in our community a couple of days ago and they haven't found him yet. Do you have any insights about problems like this?"
In the split second before I opened my mouth, three thoughts flashed into my head:
- You don't know the details,
- Don't blame anyone for not watching him, and
- But you can't advocate locking everyone up, either.
I just began to speak from the heart of my approach and my mind went to a very different place.
I said, "Often, when we acquire the label of 'dementia', we are seen as incapable of choice, and so this is taken away from us very quickly. I think that there are times, whether it is in a nursing home or one's own home, when a person feels so disempowered that they have a need to exit and try to find a place where they can exert some choice and control once again. I think that if we can begin to partner with people in their care right from the start, often there will be less likelihood of such a catastrophic response."
I went on to give my talk, but in the back of my mind was the question, "If that comment is broadcast, especially out of context of the other questions, how many ways can it blow up in my face?"
The next day I spoke to professional care partners. One of the organizers mentioned to me that he heard on the news that the gentleman had been located, and that he was safe. My host said, "It turns out that the guy took off because they were about to hold a court hearing to assign guardianship to a family member."
Powerful stuff, choice.
Dr. Richard Taylor:
Hello,
I too have drifted away from where everyone left me a time, two, three, or four. I get distracted from the present moment and something seemingly important pops into my mind, and I am off to do it, find it, etc.
At least that is what I tell folks who "find" me: I am doing this or that. I always have a purpose, sometimes it takes me a moment or two to find it and say it. A couple of months ago I wandered off and two of my grandchildren found me, and I did not recognize them, at all. Reconsidering the moment it is very embarrassing me, disappointing to me that I did not remember my own granddaughter's names or faces - it occurred right in front of their faces. About a half hour later, I "came back fully into the present moment" and started to piece together what had happened. This was a traumatic, guilt producing moment for my family, each of them thought I was with another family member.
I think Al's insight is partially part of the motivation most of the time. It is complicated - that i, s it is difficult for me and others to "figure out." It's such a public event everyone has to deal with it within themselves. I know I have lost control of driving, money, many choices, and I know I am being watched by family and friends most of the time to make sure I do not do anything "weird." I recall when I stopped driving, the first time I went into a grocery store after being home for several weeks. It felt amazing to me when my spouse went down one aisle and I went down the other. There I was free! If only for just a moment.
Once my daughter in law and I had taken my wife to the hospital, and as Linda was groggy and my daughter in law left the room, a nurse came in and started to ask me questions about Linda. I felt free, but for a brief moment when my daughter in law returned and took over answering the questions. These seem like minor events, but I can still recall the feeling of being free again.
Free choice is both at the same time a philosophical illusion and a practical reality most of the time. We are driven by impulses over which we have theoretical control. Most always, we can chose between fight and flight, between doing it or not doing it. Whatever it happens to be. When the ultimate decider, our hippocampus, when the entire brain is inconsistent in what it recalls and how it reacts to internal and external stimulus, dementia is frequently the root cause. And it too is inconsistent as to how it inter-reacts with the brain. Like life and especially love - it is truly complicated. Free choice is theoretically always free and ours to use. The reality is it is neither free nor the choice as we see and feel it.
The Power to Choose and for then to be able to understand, state, and explain how and why you chose that course of action is murky even when you don't have dementia. Dementia thickens the fog, and muddies the water. Free choice is as powerful as it is bewildering to understand and sometimes control.
Richard
What do you feel about balancing freedom to choose with safety in dementia? Please comment below.
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Alzheimer's from the Inside Out
Dementia Beyond Drugs: Changing the Culture of Care by Dr. Allen Power
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