He sits in the middle of his king sized waterbed
Parked right in the middle of his living room
A mass of pillows behind and around him, propping him up
There are several blankets in various positions on the bed and
The faded green wool blanket on top is riddled with cigarette burns
We gave him a quilt for Christmas that was handmade by the volunteers
But he doesn't want to burn holes in it, so it sits folded in the other room
The apartment is tiny, one bedroom, crammed full of
Show memorabilia all over the walls, even a pair of gold high heels are
Nailed to the wall, and there is a story behind all of it
There are pictures of Robert before he became ill, like then and now
Pictures with his doctors, posters, masks, and there is so much of it,
colors everywhere, he surely had a flair in his better days
And now, the waterbed takes up the whole living room, and when we go to visit,
There is just enough room to pull in a dining room chair to sit on
The air is stale in the small apartment, and the cloud of cigarette smoke
hangs like a thick, choking fog in the room
It was a beautiful day today, but still, the windows were clamped down tight
He chain smokes cigarettes, lighting them without even opening his eyes
And as we watch him, the cigarette wavers and teeters, almost falling
but not, somehow, and the ash reaches half an inch before it falls onto the blanket
He looks for the ashtray, but its too late, and so another hole in the blanket
Robert isn't happy, and Robert is in a foul mood
His immune system is gone and he has lymphoma in his face
His teeth are rotted and now falling out, a few at a time, and so much pain
Compounded by thrush and kidney pain and leg pain and various pains all over
Today the complaints were unusually high, with new issues
The tremors in his hands told a story of a man going through withdrawal
Not enough drugs - never enough drugs, he's always running out and
can't get more
He's dying, that's a certainty, but lets not give him too many drugs, the doctor says
And when he asks to change to a new doctor, there are none that will
step up and take him
His caregiver, who is also a good friend, hovers over him, wanting to do something
Anything to help him get some relief, but there is nothing he can do
The drugs don't work so good anymore, and he's lost his morphine somehow
Which is probably the only thing that will come close to touching all his pain
And so now it's a matter of asking the doctor to give him more, and he
most likely will not
The nurse talked to Robert and his caregiver today and told them things
weren't going to get better
His disease is killing him, and his body isn’t able to fight off all the infections anymore
And he says why don't you just kill me, and she tells him that's against the law
and her ethics
And he says then let me do it myself as he dozes off again with a freshly lit cigarette in his hand
Robert has outlived all the predictions for his life expectancy and still manages
To go out dancing or to the store or to a friend's home, and he doesn’t want to give up those moments
Yesterday was a good day, he said, but today is a terrible day and he needs help
The nurse put a cold pack behind his neck and a cold wet washcloth across his forehead
Just trying to do anything to help with the terrible migraine he was having
And as we stood outside his apartment, the nurse and I, we are without words to say
What do you do when there is nothing that can be done?
How can you help when its just going to get worse?
So we said very little and got in our cars and went about the rest of our day.
Hospice is a bitch sometimes
_
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Dee
