There was this conversation that Philip and I thought we would have, that we imagined. It would take place with our father and us, instigated by us, difficult for all of us, but crucial and beneficial. We would explain the realities of Dad’s situation, the impossibility of his living alone, of his driving, of his getting better. In that conversation, Dad would be Dad, and he would be reasonable, wise. He would guide us and advise us. He would tell us how to proceed.
That conversation that we imagined would clarify everything. Dad would make his wishes known, within the constraints of his Alzheimer’s disease, and my brother and I would do our best to create that life or that quality of life for him.
That conversation never happened. Waiting for it to happen, trying to make it happen, believing it would happen if we timed it just right—doing all of those things we wasted time, gave ourselves extended and increased anxiety.
I remember the last time I tried, the last time it would have been almost possible to discuss Dad’s future with him. He was still aware and present enough.
But he was angry.
He was angry with me for bringing it up. He was angry that he had Alzheimer’s. He was angry he didn’t really know what to do. My attempt left me hurt and bewildered. I had been so sincere and extremely gentle, completely open to his input, desperate for it in fact.
What I didn’t know then, and I do know now, is that what happened that day was the conversation. My attempt to have the conversation was the conversation.
When Alzheimer’s gets ahold inside the brain of our loved one, the standards for discussing issues have to change. I did not want them to change. I wanted to discuss, respectfully and with love, the situation with my father and how to move forward. Because that is not what happened when I tried, I considered the situation stalled. I planned how to approach him the next time so that the conversation would go better.
But what I should have done was accepted that outcome of that conversation. That conversation told me that Dad was no longer capable of having the conversation. He both would not and could not think about it in a way that would give me what I wanted: a clear picture of how to proceed in accordance with his wishes, respectfully, lovingly, and with his blessing.
Such an outcome was not an option. Not accepting that meant that my brother and I put off decisions that had to be made, waiting for the conversation, waiting for a moment to discuss it with Dad. Waiting for him to miraculously become lucid again just at the moment when we needed to figure this out
We wanted him back, to tell us what to do. We needed him to do that. We didn’t want to move forward without him, without our father.
But that’s what we had to do, wait as long as we could. We had to move forward without our father, on our father’s behalf, without benefit of conversation.