I've begun to feel like a character in Patrick White's novel, The Eye Of The Storm. It's the story of a woman in her 80s in bed, the richest woman in Australia in her time, unable to care for herself in any way, but she's still able to think and talk. She has 4 nurses round the clock. The family accountant. Son in London, an Olivier kind of actor, and daughter in France married to a Prince. Everybody in the story dislikes everyone else. A big hurricane type whirlwind of deception goes on around this still individual in the bed. The drama revolves about her, but none of it considers her. Everybody is there for what they can get, wrangling with each other in tempest in teapot dramas. Waiting for her to die.
Change the particulars and the whole story is right there. The man is in poverty according to federal guidelines. What's left is what his last wife didn't take and what hasn't been stolen since. For me, it's crazy-making to see the goings on, such seriousness over so little, and it's heart rending to see a man who has worked hard all his life, whose spirit has been bashed time after time along the way, a good bluegrass musician, which is no small thing, who can no longer play, someone so full of life he spent his lifetime working hard, sawmilling until he was 78, until he was physically unable, and with a brilliant mind, disregarded by so many. Evidently, it's that he's no longer a player. Waiting to die. But the whole Jr Maxwell is still there. Though his mind doesn't work right, it's the same soul, the same heart, the same ethical foundation, the same man who cares about everyone he knows.
This evening he apologized to me for being grumpy all day. I had grumpy feelings all day too, and I told him I felt that way too, and I'm ok with it. We both had a grumpy day and there are no hard feelings, because nothing happened or was said that could harden feelings. I got a little frustrated trying to get him to drink some water. Didn't want to. I tried to explain, drink water you stay at home--don't drink water you go to the hospital. There, you will drink water. Drink water here and you won't have to drink water there. His reply: mm. So I handed the cup of water to him and said in a meaningful tone of voice, "Drink." He took the cup and drank. Now I see that from this day forth I will several times a day hand him a cup of water and say, drink. He said water makes him have to piss. I told him it also keeps him out of the nursing home. Piss, you stay at home. Don't piss, you go to nursing home. One second later, it's the same as if I'd said nothing.
I'll make it a vow to myself right now that I won't talk about nursing home like that to him anymore, because nursing home is out of the picture, and it scares him, scares him deep. We'll find a way, albeit with resistance from my servants who boost us along our way in their efforts to hinder. One step at a time. He's in an especially vulnerable time right now. He's taken on the behavior of a 3 year old. To any question, the answer is automatically no. Would you like something to eat? No. Would you like to get in the car and ride some back roads? No. Would you like some ice cream? No. Though he's given me instructions when his woman friend calls on the phone to wake him up. When somebody comes to the house to see him, wake him up. He wants to see everybody who comes to the door. He'll even carry on conversation with telemarketers, not understanding anything they say; and they understand nothing he says.
Until now, I've always given him a choice, pushed nothing on him, forced nothing. But I see that as of now I need to be more firm. No more asking if he'd like something to eat or drink. Just say, Here it is. Eat. Drink. Another way he's like a kid is when I list possibilities for nourishment, he'll say no to everything, then Yes to burger. Sometimes, I'll put a boiled egg in front of him on a saucer and a salt shaker. He'll eat it. If I ask if he'd eat it, he'd say, no. It won't work again for weeks. Every day is unpredictable from start to end. I want to tell him every day that if he'll just cooperate with me a little bit, he can feel a lot better and go on sleeping in his own bed. Mm. Periodically, he'll say, "I need to drink more water." And that's the end of it. A sentence to say.
Every phase in his decline I go with him and see Jr in this weak, bent over, frail old man time of his life. People who see him now are taken by
how far he has declined just this past week in his mind. The mind is like it's swirling down a drain. There's a black hole in his head drawing mind into it. Seeing him every day, I keep up with where he is. I can translate for him when he has company. Most of the time I tell him what each pill he takes does for him when I hand him the cup for morning pills. Yesterday, he asked what they were for. When I came to the aricept, saying it was for his memory, he said, "I don't want it." And wouldn't take it. I knew this was a one time thing, so I let it go by. I tried to remind him that it's for his mind. Wouldn't have it. His mind is all right. OK.