I watch as the slippage peeks out here and there. I hear the questions repeated and know the previous asking has been forgotten. I see the slow, gray veil of confusion imperceptibly descending little by little.
I am powerless to stop it; powerless to stem the damage to the mind.
How do I tell them it’s time? What does it take to go to someone and tell them they are not the person they still believe they are? Does anyone have the will to be unshaken by the look of hurt or confusion that follows? Can I muster the fortitude to believe I am doing the right thing even though the sadness is telling me to take it all back and convince myself that it just isn’t that bad?
The person before me is not the same, but I still care for them as I always have. They deserve every bit of respect because of what they have been and the sacrifices they have always made for me. How could I deny them that same sacrifice in return? Our roles have changed and I, at times, am the caregiver, the person with the wisdom. But that wisdom is incomplete, so how will I know when I can tell them they can no longer live on their own? How can I do this when everything they believe and experience tells them everything is normal? How do I overcome the doubt that what I am seeing is not just a passing phase? Especially when there are those moments of clarity when even I feel that everything is still OK. Am I holding on to those moments in order to convince myself that it’s not as bad as I think? Maybe today they are a little tired or have a little more stress with all the activity that’s about. Yes that’s it, it will pass.
But it won’t. There is no cure. It does not go backward.
When is the right time? If I know in my heart there will never be a “right time,” why do I continue to look for one? How do I overcome the fear that this “right time” will be when there is an accident? If that fear can be quelled by telling them “it’s time,” how do we come to a meeting of the minds when one of those minds is slowly being chiseled away? The continuum of memory is necessary to have that discussion with reason but it no longer exists. Is it too late or could I be just in time? What do I pick, dignity or safety? Is it really safer or is it just an illusion and am I using the idea so I can unburden myself of the fear and worry? How do I remain strong? And when they start to look at me and not know who I am, where do I find that strength to keep the pain at bay?
The person before me is the same as they have always been. Just different. I know that for their own sake, I must tell them it’s time to start a new chapter (maybe the final chapter.) But that difference gets in the way. How do I move that veil aside so we can have a discussion with clarity. “Will you move from this big empty house?”, “Why?”, “Wouldn’t you feel safer over there or happier being around more people?”, “I’m fine.” But you’re not. I can see it and I am afraid.
Why have all these questions not been answered even though people have been asking them for decades? Why is it so easy to get angry but so hard to make a decision of caring intent? Why is it so hard to do the right thing for the person who cared for me without reservation for so long? They have had such a long time to practice, I am new to it. What, in fact, is the right thing for this person who has done so much in their lifetime and who has been such a pillar of strength for me? Is this what they mean by “tough love?” Why does it take so much out of me to be that rock of strength for them?
How can I take the freedom from this person who has given me their trust to help them do the right thing because, deep down, there is a part of them that knows things are not as they should be? Am I violating that trust by making a decision without them and then coming to them and telling them what they must do? Am I honoring that trust even if they think I am not? Do I commit an injustice when they insist that all is OK and are certain they will know when “it’s time?”
I don’t know. How can they?
The mystery of these questions pales in comparison to the sadness and conflict the answers bring as they come. Do I know the answers but still avoid them for my own comfort? Is there still time? Maybe, but time is passing so quickly.
We all have to say goodbye sometime. It is the way of it and most of us can accept that. But watching a life that has been lived as a bold continuous line slowly become a dashed, thin one is crushing. Watching the dashes get shorter and the spaces larger is the hardest way to say goodbye I can think of. The anger burns hot at the injustice and thievery this disease has wrought. What is fair about a person – who could carry the world on their shoulders whie running – having their whole existence slowly fade?
I am not the first, I am not alone and I am not the last to walk this path, of course. But at times, it feels like it. I know that, because we all have an incredible capacity for perseverance, I can and will find my strength. That is the only true way I can honor what has already been given me in a lifetime of commitment. My enduring hope, once I have finally walked through these fires of the unknown, is that I still have the voice to say the final goodbye and the fortitude to be both sad for the loss and glad of the release for us both.