It is easy to think that “we know” things, making assumptions about circumstances and situations that we truly can’t grasp. We think we know what our aging loved one is experiencing, that we understand the frustrations of a life that has limits it didn’t have before. But, in truth, we really don’t have a sense of what that experience is like, we are looking from the outside in and only from our own perspective.
So much of the aging experience is about loss—loss of control of your life in a variety of ways. Our older adults stop working and lose the identity that, for many of us, comes with career or vocation. They may lose their independence as driving becomes too difficult or dangerous. The choice of where they live may also not be their own, needing to leave their homes for a different setting, perhaps one without stairs or even within a more congregate living space. With age, disease and disability, these choices continue to diminish and control of their own lives slips further and further away.
As family members, we grieve the loss of the person we knew and we often fervently wish that we could “have them back,” even for a short time. We long for what was and hold on tightly to the memories of “who they were,” not always acknowledging “who they are.”
Imagine for a minute that you could know what your loved one was going through. Imagine you could see through their eyes for a moment or a day or even longer. How much would that change your perspective? That’s what came to mind for me today as I read about Kris Kristofferson and his misdiagnosis with dementia.
In case you missed the story, Kristofferson, an actor and musician, had been experiencing memory loss over the course of the last several years. He was diagnosed with dementia and started on a treatment regimen for that presumed issue. Yet now, physicians have reversed that initial diagnosis. They tested him for Lyme Disease, found that it was, indeed, present and started him on an appropriate course of treatment. His wife was quoted as saying that “All of a sudden he was back,” as a result of receiving the correct care.
For three years, Kristofferson has lived with increasing memory loss, with a life that became more and more limited, with a world that became smaller and smaller. From all reports, he has handled this “recovery” with grace and equanimity and is expressing, more than anything, gratitude for the improved circumstances in which he finds himself.
There’s a lot to think about in this story, a lot to contemplate. What would happen to our lives if this kind of misdiagnosis occurred? What insights would we have if we not only experienced the symptoms of dementia but then “came out the other side?” What does it say for all of us as advocates for ourselves and our loved ones when facing any kind of difficult diagnosis? Have we asked all the right questions? Have we done everything that we needed to do?
We live our lives from the inside out. If we can step away, just for a moment, from our own limited perspectives and try to change our view, our mindset and our expectations—how different is the understanding we might create?