My wife and I took our children to visit my father over the weekend and the experience was truly awful. He has advanced Alzheimer’s which has grown steadily worse over the past 5 years. Recently he broke his hip and then caught a chest infection so his health has deteriorated markedly in recent weeks. None of this, however, prepared us for what we saw on Sunday.
He can no longer speak in coherent sentences and can barely say any words. He dribbles all of the time, when he is awake which is rarely, and he has visually changed. The biggest shock for me was seeing my father with a different face. That sounds strange I know, but his face has actually changed shape and his eyes have lost a lot of their colour. We lost his personality long ago and now it seems as though the rest is changing as well.
Three people had to lift him from a chair to a wheelchair so that we could spend some time with him and the same thing happened when we returned to the main care room which was full of people just like him. Tens of people who were suffering varying degrees of the illness and whose time is so obviously limited. My mother broke down, the first time I had ever seen her cry. I broke down the moment I saw him and my daughter was inconsolable. It was if he had died right in front of us.
He has now reached the stage where we are just waiting for the inevitable. He would not get out of bed today and fought anyone who came near him so the doctor had to be called to give him some pain relief. That was done because he can no longer express if he is in pain so they wanted to try anything to see if it helped.
The next stage is a secure unit if today is repeated, a room with bars and people whose job is not to provide care for a man who has worked all of his life, brought up children and never done anything but help others. I can’t stand the thought of him living the way he does now let alone being in a secure unit in his final days. There is something so dreadfully wrong with that.
If he was a dog, he would have been put down long ago, but he is a human being and so gets the legal right to lose all of his dignity in his final weeks. He is my father and so was always larger than life, always someone to be respected and he always showed me the right way. He was possibly too nice for his own good, but nobody deserves to be living in semi-consciousness, possibly in pain and with the shock of wondering what the hell happened when he does awaken for a few moments.
The moment he was diagnosed with Alzheimer’s was the moment he could no longer say he wanted to travel to Switzerland and deal with things his way. And that would most definitely be his way. We now have to wait, possibly only for a couple more days, for nature to take its course or for a doctor to do the decent thing.
We all know that end of life care will, and should in my opinion, involve giving someone their dignity back if life has become intolerable by releasing them from the pain. It seems crazy to me, however, in situations like this where every professional knows that there is no good served by him still being alive that we just have to sit there and watch him fall apart, while we all fall apart around him.
I am terrified of my father dying, but I am more terrified of him living the way he is now.