I went into his room early this morning to check up on him. His moods, because of his dementia (add to that his bi-polar diagnosis) are getting more pronounced as time goes by. So when I ask how he was doing, I got a very aggressive response and was told in so many words, to get out of the room and leave him alone. His bed was a mess so I had to fix it up for him and he fought me all the way. So I just talked to him as I worked, tried to stay out of his swing and kicks (which are not a real threat as long as I stay focused) and just responded to his yelling in a modulated tone of voice; as if we were having a simple conversation. This time it worked (though not always), and he calmed down and by the time I left he told me what a terrific job I was doing. It could have ended with him continuing to curse me as I left. It varies from day to day. It is not personal on his part. All I have to do is enter into his world (or attempt to, is the better word) and seek to experience what he is living though at that moment. He often wakes up confused, not knowing where he is, nor does he remember past episodes of being turned, cleaned, etc. So it can be very frightening for him; which explains the fighting, kicking and spiting, which sometimes happen. On other days, he knows who I am and works with me, but these are getting less as time moves on. Of course, this experience is shared with Rose, Peter, Beatrice, Elise and those who volunteer to help out with William. Bath days are another story, each unique in how he responds.
Right after lunch Peter Damian came to my room and told me that William was “wild”, screaming and trying to tear off his clothes. So I told him to give him some Ativan cream and call me if it does not work within 30 minutes. The cream is not a strong medication, but it does help in calming William down when he really gets ‘manic’. When I came into the sitting room of our infirmary a couple of hours later he was in a good mood and very chatty with me. We had some music on in the background and sometimes he notices and likes it, at others he seems unaware of it. I sat down with him and we talk. It is like a volley ball game, these conversations….. with me volleying over a statement and he answering in a way that has nothing to do with what I said. So I say something else, and he answers, his volley over the foul line. So we sort of talk, but on some level there is communication, for he is responding, he looks at me, laughs at times and even pats me on my hand.
Some days we face him toward the window, which he seems to like, when he becomes overly agitated by the comings and goings of people. I prefer doing this, to having to place him in his room for an hour or so, to calm him down. For he does notice if there is no one around. One day I was reading, sitting next to him, though out of sight of his peripheral vision. I was reading, and I thought keeping him company; when he looked up and said in a loud voice: “where is everybody”. So I moved my chair up a bit and touched his hand saying I was here. He looked at me and laughed, then went back folding his bib. He just likes having another presence, even if it is on a day when he doesn’t know anyone around him.
William does not take a lot of work, but he takes up large segments of time; for he does need companionship. We all do, having dementia does not lessen that. He knows when someone is there, he also knows if he is loved and listened to, even if a normal conversation cannot be had. There are many different levels of communication and a simple tone of voice is one of them. It can convey a lot. It conveys love, acceptance, compassion and empathy; he feels that. Peter spends a lot of time with William when he is on duty. He spends more time than I do with him. He is also good sitting with Luke and listening for long periods of time…. who being 99, has a lot of stories to tell. Beatrice and Elise also have a gentle presence that calms him down, and Rose, well she is the head nurse, so it kind of all falls on her. She deals with William gently, patiently and with a great deal of humor, and she laughs a lot with him. He at times thinks Rose is his mother, which can be very helpful in calming him down.
I don’t know how far this will go, this sinking further away from the everyday world experienced by those who do not have dementia, and at times it is painful to watch. However he is still ‘William’, a lovable man, a wild man (even before his decline), colorful, strong willed, yet also very good, prayerful and a good fellow to be around, though trying also, then as well as now. But is that not true of most of us?
It is his smile I guess, his laugh that can fill a room, or perhaps the light surrounding his face at times that makes caring for him mostly a delight.
There is pain of course, watching his decline, also his violent moods which can be severe, or his crying in anguish that no one can alleviate; all we can do is simply be with him.
Yet he is still William, and there are times though getting less and less when he calls me “Markey”.
Then I am “Jimmy”, an old friend I think, when he played his clarinet, the name he went by was “Billy Love”.
So his journey continues; he’s now the teacher to those who care for him, allowing us to grow in patience, compassion and love,
(To also confront darker aspects of ourselves.)
For in the end I believe that is what we are about, to grow in love of one another