"Diarrhoea" is hard to spell and a problem that people now know is
associated with 17,000 cholera cases in South Africa. But soiled beds and
nursing incontinent adults at home is an increasing challenge. A significant
percentage of the population will suffer such indignity as they die from AIDS.
Bronwen Jones has been caring for incontinent 11-year-old Irene Peta and
explains what it is like day to day and why it needs to be talked about.
"Shit" is a mild expletive, inoffensive to many. But human excrement is
taboo. Having had it on my mind and in the air for several weeks now, I am
going to write about this most distasteful of subjects.
First let me explain why I am in this situation.
I am acting in loco parentis for a little girl who lost most of
her legs in a fire in Alexandra a decade ago. At the same time as losing her
legs, she lost her parents. Other burn damage destroyed her sphincter, left her
with no buttocks and scarred her elsewhere physically as well as emotionally.
When I met her, she had one strong wish: to live without a colostomy. The
see-through bag drained her body waste; an unseemly smelly sack that was always
with her, hanging in front of her tummy. It was not meant to smell but it did.
So I sought medical opinion to see if improvement was possible. I
learned that she had medical records at two state hospitals and that there was
no way to send the records from one of the hospitals to the other, so that all
the information and X-rays could be in one place.
I was reminded that I was not allowed to see her medical records, even
though I knew I could not make any reasonable decisions without access to that
information. I also knew that I needed time to read it and absorb the contents,
as doctors seem invariably to have highly illegible handwriting and they'll
always use a long word where a short one would do.
Eventually I secured a fat medical file with agreement of the
appropriate authorities. I waded through it to find a huge amount of paperwork
that no longer had any relevance at all to the child's life and some other
paperwork that was quite inaccurate.
I talked to a surgeon who had known the child for a long time but he
didn't care as he was in the process of emigrating. Eventually I found a couple
of surgeons at another hospital who were prepared to try to improve the girl's
It seemed that the colostomy could be closed but that her bottom would
not be able to work as it should, because there was no muscle to close the
anus. It also became clear that her hip was fused, the muscle burned away
inside, and that this meant that she could never sit upright and so, gradually,
her spine was becoming more deformed.
A sphincter can, apparently, be replaced by taking muscle from the thigh
and putting it in position. But I was told that there was only one doctor in
South Africa who had this skill and that he was allegedly not nice enough to
share his expertise. I was also told that it would not even be appropriate to
consider such surgery until the child had finished growing; that it might be an
option when she was about 16 years old. There are even curious devices like
electronic sphincters but God knows what happens if one runs out of batteries.
Do you block like a bad drain - or simply explode?
We went back to the drawing board. It seemed that the hip had to be
dealt with and it was dangerous to operate in the area so close to the
colostomy. After nearly a year of prevarication by people who were neither
family nor doctors, the first operation went ahead.
For the first time in ten years, the little girl was using her bottom
instead of a bag. She felt euphoric and then depressed, as not knowing when
something would happen or not, was quite alarming.
But that was the first in an intended series of three operations. Next
her hip was broken with the aim that for the first time since infancy, she
would be able to sit on a normal chair and use a normal lavatory. Finally the
third operation in this batch will be an appendicostomy. This will allow the
child to live without nappies and to decide exactly when she wants to use the
lavatory, as she will flush out her own system with a syringe-like device.
I am sitting in the time between operations two and three. Why is the
little girl with me? Because she cannot live in a two-room township house with
no bathroom, sharing a single bed with her grandmother, while she is trussed up
like a chicken (in plaster and broom handles!) and defecating all day long.
But looking after her has made me think of a host of other people in
similar situations who never talk about what it is like day to day. There are
the paid professional nurses who work with the mentally-disabled, or with
geriatrics. One sometimes hears terrible tales of cruelty to those in their
care. Now I am less surprised at the stress they clearly feel. And there are
families coping alone at home with no support from anywhere, not wanting to
show their mother, father, husband, whoever, how disgusting they find their
task. For the patient it is embarrassing to have no control and to suffer the
indignity of smells and stains and reading the distress in the face of the
Many AIDS patients in the final stages of dying have diarrhoea, and are
too weak to leave their beds. But I don't think the home-based care courses
explain the logistics of how families should deal with that. Of how a family of
eight living in a squatter camp shack should manage to wash sheets daily and
dispose of waste, without putting the mental and physical health of the whole
family at risk.
The conversational taboo doesn't help. If you phone me up and ask how I
am - and I answer that I am up to my wrists in shit, at best you'd think me
vulgar. And you'd far rather I didn't talk about it.
But if you happen to be incontinent one day, be prepared first for the
high cost of trying to keep clean. Your local pharmacy will sell you a box of
100 gloves and a big bottle of disinfectant. They will sell you "linen savers"
at about R1.60 each. These are small plastic-backed paper disposable sheets
that protect the permanent bedlinen - so long as your patient is not a child
who wants to move no matter how much you ask her not to. And then there are
disposable small adult nappies at about R160 for a pack of 20.
And then of course there's Vaseline and tissues and gradually, as the
stench worsens, sinking into the immovable plaster, any manner of room
fresheners and body sprays. And surgical masks that actually don't keep the
smell out but you'll try anything that you think might just make it more
bearable - even drenching them in eau de cologne before use.
In the case of the little girl with no legs, we can use between four and
six nappies a day. The same number of linen savers and pairs of gloves.
Sometimes she is bored and pokes through the nappy because she "had an itch"
and there are more cotton sheets to wash. Sometimes the nappy tears, or one's
glove gets caught on the sticky plastic nappy tabs and the glove tears. I am
glad that the ban on plastic bags hasn't taken force yet, because I use an old
shopping bag to dispose of the nappy and knot it inside another one with all
the used tissues, washing rags, linen savers and soiled gloves - that's a
minimum of eight plastic bags a day and usually many more.
The task is so unpleasant that, like the smell, it pervades the whole
day. As I get up in the morning I know that I must scrub-up like a surgeon and
go and clean the child. That after feeding her and maybe changing the whole bed
and the mattress protector, chances are that she will have filled another nappy
One thinks terrible thoughts about giving the patient less to eat so
that she might produce less waste. Trying to work out what she eats that makes
the worst smell and wondering how to feed her something sweet scented like
condensed milk, that might remain pleasant right through the digestive system
and out the other end. I email the key surgeon to try to encourage a speedier
resolution to the smelly stage but he seems not to receive it.
And so it comes to a Saturday night when, instead of any ideas of going
out on the town, I think at about 8pm, how nice it would be to have a warm bath
and settle in for the evening. But I can't imagine soaking in perfumed bubbles
and then having to go and mop up adult quantities of poo. At 9pm she calls me
to be cleaned. I fill the small tub with water and carry it to her bed. After
about 20 minutes, everything seems shipshape except my second municipal waste
sack is now full of nappies and there are no more sacks to deal with the next
But no - she says - she needs to pee. I put a sanitary pad in place to
hope that the expensive nappy can be saved. I watch her face in morbid
curiosity - she has the satisfied look that people have in movies just after
they've had good sex. Such pleasure from simple things. I clean her up again
and am about to bid her goodnight, when no, she has filled another nappy.
It is well past 10pm before I can contemplate a bath for myself. I find
I don't want to eat after cleaning her, as I always fear something could be
left on my hands. Somehow the smell of silicon gloves and faeces remains in the
air and almost on the tastebuds. Soon I will go to sleep and wake up to another
day of the same.
I want to talk to someone about it. But it is not like parents of
newborns who can discuss the colour and consistency and the regularity of their
little treasure's bowel movements with others newly into parenthood. I want
some miracle worker to knock at my door and say that they'll take over the
nappies up to the next operation and beyond. But of course no one will make
And the other part of me is glad. There is no stronger lesson in
humility than to have to clean away the body waste of another human. And there
is no way in which I could have understood the dread and despair of people
nursing their AIDS patients towards death.
My shitty time is at most, just a few weeks more, even if it doesn't
feel that way. But what about the people who work with such patients all the
time? What about the people who can't buy gloves and nappies and R120 mattress
protectors for grownups? It doesn't bear thinking about - but bridge that taboo
and think about it. PLEASE.