Frances is moving towards that appointment, which we all know more or less, is awaiting us. He is dying. There is no pain, he is simply wearing out, his lungs are not working well, have been shutting down for over a year, slow and sure. Up until last week he was able to get out of bed for a few hours a day, with his oxygen tank connected to the back of his wheelchair, keeping him supplied with enough oxygen to stay alert, at least for awhile. When in bed he uses a concentrator, which also keeps him comfortable.
When someone is in his position, placing the patient right in bed can be a job that an engineer would find daunting ( ok a slight exaggeration ), but nevertheless something that has to be thought out each time, since comfort needs change. No matter how comfortable the bed is, when lying in it for a long time, it can become a torture if proper placement is not given attention.
Pillows, pillows, pillows, lots of them; they can give a lot of comfort. We have to place him just so in bed, then raise his legs, and head, to a position that he feels comfortable breathing in, then place one pillow far down his back to give him more support, another behind that one, and then a small neck pillow for more support. Pillows under his arms, not touching his chest to help with breathing, and then one under the legs to keep his heels off of the mattress; heels can get very sore with just lying still for long periods in one place, no matter how soft the mattress is. No matter how well placed, sliding does happen so this has to be done over every couple of hours. Francis has a call button, which he is not shy to use, thank God, so he calls us when it is time to “ pull him up ”, as he puts it.
Skin check is important, and we have Tegaderm to put over any sheer marks that may arise when moving him up in bed. They happen no matter how hard we try to avoid them. The Tegaderm is very good for this kind of thing.
He is at this time not drinking; he aspirates when doing it, and would rather not bother with it. He is eating some soft foods; two actually, applesauce and oatmeal, which he loves. Mostly it is for giving him some comfort meds; for anxiety and sleep, so he seldom eats more than a few bites. I think he does it to give us something to do, make us feel useful.
We talk; he likes things to be up front, so I let him know what is going on. He knows that not drinking will eventually take him, and he seems at peace now, though the waiting is difficult for him. That in-between-place is hard, waiting, not knowing really how to die, but knowing that it is going to happen. He ask me “when”, and I say “soon”, but can’t tell him the exact time, perhaps in a few days. He prays, looks at the crucifix on his wall, and just stays in God’s presence. His peace is growing as his number is getting closer to being called, I hope I am with him, holding his hand and praying. I have journeyed this far, I would like to go the whole way with him.
He seems like a child now, when I move him in bed he is so little and light that it almost makes me cry, he is such a beautiful little man, who himself does not know how beloved he is by many people. He is childlike, but also very astute about life, I have learned a lot from him.
It will be soon, and I will be sad for awhile, but we are all called to that appointment, perhaps that is what life is about, the waiting and yes the fear that can come with it. Well you can’t have life without death, so it is worth the trip…..Francis thanks so.
