AIDS Memoir–Last Rites and Diaper Change

This is an old writing, published in a British newspaper.

Faith and Reason: Deadly afraid of dying all alone: The Rev Robert Rea, of
Newark, New Jersey, gives an account of the challenge of trying to give
individual care to an Aids patient in the last days of his life in an American

Saturday, 11 December 1993
I NOTICED in a recent gospel reading that when the Son of Man comes, he comes
to judge the nations. We usually hear a judgement of our individual behaviour in
this reading. And we can usually find things we individuals do to help the
least. But what if that is not the question being asked? What if our national
behaviour is at issue? What if it is presidents and legislators and
administrators that are to be judged? So I thought I would detail what I have
been doing over the last few days that I do, and my agency does, on behalf of,
and instead of, the nation. But that is preface.

Greetings from Calcutta, USA, and the St Somebody Aids Resource Center. Thursday
I got a call from the local visiting nurse in our church about a man, call him
Jose. Jose has been hyperactive and clinging to the home health help, because he
is dying and afraid and he has only eight hours a day of her services, so he
causes a fuss when she has to go home at 4pm leaving him alone. Maybe as a
priest I could go in and pray with him and calm him down. So I did. It worked
some, but he is alone all night.

If you’ve seen the figure of Christ on the most agonised possible Spanish
crucifix, you know what Jose looks like. No muscle mass to speak of, lying on
the couch because he is too uncomfortable on his hospital bed. Besides which,
think what it must mean to him to climb into that hospital bed. Deadly afraid to
die, wanting to die at home, and not in a nursing home. One of his best friends
died last week, the other is now dying in the hospital.

Jose is in pain but they can’t or won’t do anything about it because he is an
intravenous drug user and they are afraid to mix in any other pain meds. Come to
think of it, he hasn’t been able to go out and get his methadone for two weeks,
let alone street drugs. So not only is he facing death, but he is going though
withdrawal at the same time. No wonder he is in pain. I do my job, I comfort and
talk to him about all this. I anoint him and give him communion. Later, when I
check back in after the nurse has gone home, I have to help him clean himself up
and change his diaper. The comforts of religion, Last Rites and diaper change.

I talk to the visiting nurses. He’s not sick enough to get round-the- clock
care. They will try for more hours but it takes a while to get approval from
Medicaid – ie, welfare here in Calcutta, USA. So I see him again Friday. And
leave him alone again. I can’t stay with him. It is in a neighbourhood where I
as a white person am not very safe. And my car was stolen earlier in the week.
But he is supposed to have health workers over the weekend.

He says he doesn’t want to die alone. I tell him I will do my best to see that
he doesn’t. I tell him he isn’t going to die Thursday night. Friday I tell him
he won’t die over the weekend. I believe this; I can see he’s not quite that
close. And he isn’t. I tell him I will see him after church Sunday.

Sunday it turns out his sister-in- law came Saturday and found him alone, so she
took him home. Nobody is around to tell me where to find him. Well, at least
he’s not alone.

Today the health worker calls me to tell me where he is. So I see him and sit
with him a while. Today he can’t hold his head up to eat or drink. We, the
worker and I, sit him up and his head falls back and hits the couch with a nasty
crunch. Finally we get a pillow behind his head. He can’t use his atomiser for
his asthma any more either. The nurse covers his legs, which he doesn’t want.
She says he’s got to or he’ll catch pneumonia. I think to mayself that it would
be a merciful end. He asks for the oils which I had not brought. I was reverting
to my job as social worker. Tomorrow, I promise him, I will bring the oils.

Later I talk to the health worker who takes such wonderful care of him. She says
she isn’t sure she can continue. The neighbourhood isn’t safe enough for her to
come to. She gets off at 4pm and has to take a taxi to a streetcorner safe
enough to wait at for a bus.

Later yet I talk to his sister-in- law. (This is Hispanic for some sort of
relative. She calls him her uncle.) She says that she is getting another eight
hours of health aid care arranged. If she can do that she can take the other
eight hours of the day, and move him back to his own apartment. I applaud that
heartily. We will work on getting him to use the hospital bed, where we can
crank him up so he won’t choke and suffocate.

The sister-in-law says she won’t have him be alone and incontinent. I applaud
that even more. She is going to try to get him into the nursing home where she
works, but the paperwork takes several weeks, and then there is a waiting list.
I tell her I don’t think we have time. He is going to die sooner than that. This
shocks her somewhat. We talk about that for a while. So now we are making plans
to find people to stay for the gap between when the sister-in-law goes to work
and the aid comes in the morning. That much even I may be able to do.
So this morning the sister-in-law called the ambulance and sent him to the
hospital. This time the hospital is keeping him. He has meningitis, they think,
and gangrene on his feet. So he has a couple of days. They think he will make it
tonight. His condition is stable. He’s in a lot of agony but the vital signs are

He can’t really talk anymore. He makes sounds but you can’t tell what he’s
trying to tell you. So I anointed him and said goodbye in case I didn’t make it
back to see him again. Tomorrow is our day to give out the turkeys and dinners
for our clients. If I get a chance I will try to see him again. If not, I will
try to get by on Thanksgiving. Without a car, it’s difficult.

Next we think about a funeral.

So keep all of us in your prayers.

I think I know what the son of Man would say about our individual work. What
would he say about the nation that allows people to get into this state?

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