Still There

Imagine being trapped in a body that no longer serves you, your brain still functioning but lacking the ability to speak or even move voluntarily. Imagine still being the “you” that you know you are, unable to let anyone else see or understand that. If we try to imagine that we may find ourselves thinking that this is “the stuff of nightmares” or that we “cannot imagine anything worse.” It’s being a prisoner in a prison created by biology, an incarceration that holds no hope of release.

Working with older adults, we see degrees of this sort of “disconnect” all too often. Someone who has dementia or has suffered a catastrophic stroke, someone with any one of a number of diseases can present as if they are not really “there,” that their essence (however you choose to think of it) has gone, has died while the body still holds onto life.

Maybe it is our own fears that lead us to believe that there is “no one left,” that it is too painful for us to accept that the individual may be trapped in a body that no longer serves them. Or maybe it is just easier to “write off” someone who cannot respond, seeing them as an empty physical vessel rather than as an individual.

The reality is that, in many cases, we just don’t know. We don’t know what the individual understands, we don’t know what is going on in their mind. They can’t tell us directly and too often family members and caregivers assume . . . but assumptions are not always valid.

I don’t believe that we can jump to conclusions about what the individual can understand, I, frankly, don’t believe we have the right to do so. I am not talking about a medical situation in which brain activity is being measured. I am talking about someone living with limitations caused by disease, medical event or the aging process.

I believe, instead, that it is our obligation to continue to interact with the individual as an adult who, despite their inability to communicate by conventional means, can still make choices and still express their wishes and their needs. As an example, when an individual has lost their speech due to advanced dementia and they are offered a choice, whether it is two outfits or two plates of food, they can and will choose. They can and will show us without words that they are in pain or need assistance. They can and will show the effects of loneliness and fear.

It is painful and difficult for families to see their loved one compromised and unable to speak. It is challenging for caregivers as well. But I think it behooves us to stop and think about that if it is difficult for us, imagine how difficult it is for the person living through it. We need, I believe, to learn to listen differently, to open our eyes and our hearts and look for what is still there, not what has been lost.