Well it was quite a morning with William, for you never know what to expect when it comes to taking care of his nursing needs. As his disease progresses, his symptoms will of course become more pronounced and painful for all involved. This morning while cleaning him, or perhaps ‘attempting’ is the better word, he put on quite a performance, that was in no way acting but came from the deepest recesses of his soul, confused as it might be. His perception of what was going on, something I will never really know, caused him to react in a very violent manner, with a great deal of kicking, hitting, and screaming. It started off ok, but soon became just another match of wits I guess.
I guess it took about 30 minutes to clean him. He insisted that we call the police, and that we “stay the hell away from him”, which of course we did not, for he is not responsible for what he says or does, and we really do have to take care of him. Slowly he is being cornered into a smaller and smaller world, making it ever more difficult to reach him on any reasonable level; which takes its toll on those who have to care for him day in an out. Past memories of him keep overlaying his present situation, which at times can add to the frustration of the job, since there is only so much one can do. Flash memories of what he was like, his laughter, humor, yes even his darker qualities, take on a nostalgic flavor, hoping that perhaps he could come back, but then back to reality, no it is a down hill slide. All we can do is to try to make him as comfortable as possible, and try to give him some good moments, which we do. It is not all black or depressing, there are bright moments for him, and his memory; well it is a blessing that he can’t remember from one day to the next; sometimes from hour to hour, or minute to minute. It varies from day to day, though it tends towards the less portion of memory retention. You can’t help loving those you take care of, for it is a very intimate kind of relationship, where everything about the one being cared for is accepted, even if there is a struggle in doing so from time to time.
After we cleaned him, in order for him not to get in the way of Bernie’s trying to get Breakfast ready, I took William down to our little chapel, hoping it would calm him down. Of course it did not. I sat next to him and listened to his lament, his being totally naked before God; in his speaking out his anger, self disgust, rage toward those who take care of him, and yes his anger at God, for he feels abandoned by Him. For he is still aware enough to know that something is very wrong and out of his control, truly a worst case scenario for most people.. Having to be cleaned four or five times a day is something that he finds demeaning, and this time he used language that seemed to imply that in very poignant terms which I won’t repeat here.
As he was expressing this heart felt prayer, for that is what is truly was, being present before God in deep pain, confusion, anger and rage; being truly childlike in his honesty, for his ability at pretension has been taken away by his disease. So in listening, I noticed that his wailing took on a chant like melody. A certain kind of rising and failing that took on a tragic beauty, a psalm like intensity, that I have never heard before, or perhaps have not noticed. Yes he was truly praying, and I have no doubt that he was heard, and in my own poor way I joined in, seeking to at least be with him, though he could not perceive it at the time. Yes he is Christ in the garden, asking that the cup be taken away, yet it will not, for this is his journey, and it is the privilege of the caregivers to try to make it a little less painful, though at times it does not seem that way.
Of course this will pass, at least for a time and merciful forgetfulness will give him some reprieve; yes he sinks further into the darkness that his disease visits on its victims. So the brevity of out lives, and the speed in which time goes by is perhaps one of God’s greatest mercies towards us. For I have never met anyone who does not have a heavy burden to carry, it is just life, can’t get away from it, and in the trying it only makes things worse.
I once read that the difference between a saint and a sinner is this; the saint faces life head on, does not try to run away from the pain that in so much a part of life. While the sinner seeks to flee from pain, and in doing so, paradoxically, causes more pain and suffering, not only on themselves but on others. Well I am still in the latter category. It is one thing to know something, quite another to live it. Well until I am forced to, perhaps another mercy, for mercy can be harsh and infinite love alien to the way I would think things should be done.
Of course my faith could be bull s**t, but I don’t believe it is.
What love will do
Love will make the strongest man weak,
yet fill him with courage to bear all pain for the beloved,
when the walls come down
and the other enters into the inner sanctuary,
the fire of purgation,
the agony and the ecstasy
lead to union
deep
and enduring.
Br. Mark Dohle, OCSO
Holy Spirit Monastery
