It is very hard to watch our father shouting, though he is comforted and cared for constantly. He is struggling with progressive Alzheimer's disease, his once fine mind is shutting down and he knows there is a great darkness where once there was poetry, music and conversation. Where once he was reserved, private and amusing, there is now an unstoppable outpouring of confusion and distress. Help me, he calls, and my brothers and I hold his hands and watch.
It sounds as if he is in great pain, but we are assured that he is not. I took him in his wheelchair out into the bright February sunshine, his knees and shoulders covered in blankets. He will like the feel of the cool air, and the brightness of the sun, I thought. He will know he is outside and he will like it. But he did not like it. The bleakness in his brain came with him, and he was unsettled by the change in temperature and surroundings. I took him back inside, trying to wheel him carefully over the grass, hoping the tiny bumps in the ground that I would have given no thought to, would not jolt him and cause him to call out in fear. Once inside, I took him to a large sitting room, and sat him by the window to feel the sun on his knees. We sat together and I tried to distract him from his shouting, but he couldn't understand my questions, and didn't remember what I was describing when I spoke of our childhood with him as a wonderful father, and he shouted his responses in between calling for help. In desperation I sang him a song he loves from his own childhood, though I couldn't remember the words, and muddled my way through it. It did calm him, and so we sang it over and over until it was time for me to go. And now I have gone, I thought, he will shout again, and what on earth was the point of my visit? I left feeling tearful that this most gentle and educated of men, this kind and independent father of ours, would have already forgotten how I had sat with him and found a way to calm him just for a moment. For me, it was a big thing. For him, it seems, it never happened.
Today when I went to see him, he was not shouting. He seems to have stopped. He is peaceful and calm and sleepy. My brother John said, his face has sunk into itself. It's true, his face has lost its old definition, and yet he is still handsome. His face does not care about how it looks anymore, it is only responding to the shutting down of his mind. He cannot control it, he has no awareness of it, and it shows how weak and tired and old he is. In a strange way he is like a baby that has no idea of who it is; a very old, white haired, gentle sleeping baby.
I want to ask him something about what is happening to him. I want to ask what it is like to be so old and with Alzheimer's. I want to get through to the eccentric, clever, witty and philosophical man that still lives inside his brain somewhere. What are you thinking, Dad? I ask him, and he seems to pause, as if he knows I am asking him an important question. His mouth moves and I can see he could once have said something profound in response, but his brain has shut down a way of making any sense of the question. But he knows, he knows we once would have talked like this. Instead now, he closes his eyes and his head droops onto his chest, and he disappears back to that place that I cannot understand and in which I cannot find him.
There is not much time left to make him understand we love him. He may go on physically for ages, but the sparks of light in his mind will soon remove him from us completely. I love you, Dad, I say, and he smiles. I hope that lodges in all his brain cells, and cannot be dislodged.
I asked my brother Ralph to write something of his feelings for this journey of Alzheimer's and endings and our father. Here is what he wrote -