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Family memberBorn in Leicester in 1981.
Overview: Emma`s mother, Bena, was diagnosed with diabetes in Uganda in 1965 and came to England when her family was expelled by Idi Amin. She married an Englishman, Terry, and had two children – Emma and her younger sister. When Terry was at work, Emma and her sister had to cope from an early age with their mother becoming unconscious. Her sister has now married and left home, but Emma still lives with her parents and was often phoned at work when her mother passed out – until her mother attended a DAFNE course and gained better control of her diabetes.
There are also interviews with Emma`s mother, Bena, and her father, Terry.
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(1) Tell me about your background.
My name‘s Emma. I have a mother who has diabetes, and a
father. My Mum‘s had diabetes for around
about forty years; I can‘t be precise on how many years it has been. She originally came from
, came to this country in the
late seventies, met my Dad. They went
out for a short period of time, got married, and here I am!
And tell me what
your parents do.
My Mum, she‘s a
clerical worker for social services. My Dad,
he used to work in the textile industry, but due to the business being in other
countries, now, was made redundant, and now is a security guard.
And tell me
about your earliest memories of your Mum‘s diabetes.
One of my first main
memories of her is when me and my sister were at home, she passed out, fell to
the floor in our old kitchen - which had, like, tiled flooring - so obviously
she banged her head. She started to
growl, and as we were children, and obviously you have a very… imagination, we
thought it was a monster in the kitchen, so we wouldn‘t go in there; we hid
behind the settee. She was going on, and
she managed to call out our names. We
went to the kitchen, and she told us to give her some ice-cream. So, we were giving her ice-cream, and
sneakily we were having ice-cream ourselves as well. Yes, that‘s my earliest memory.
How old do you
think you were?
I must have been
around about four of five years of age... four or five, yeah.
Can you remember
what your Mum told you about diabetes?
I can‘t really
remember anything that she told us. She
just said that she has an illness, and she needs… sometimes she needs sugar to
make her feel better. That‘s the main
So, did she give
you any training in coping?
school, I do remember that she took us to the doctor‘s - it was Dr Archer - and
he actually showed us how to inject on a... I think it was an orange. My sister got the swing of it, but because I
was quite scared of actually injecting someone, or actually hurting someone, I
just couldn‘t do it. So, my sister was
the main person who used to inject my Mum.
In what sort of
Basically, when Mum
would obviously pass out, and there was no way of her regaining consciousness,
my sister was trained to do that. I was
also trained, but because I was just too scared of hurting her, or just in case
I got it wrong, I just wouldn‘t do it.
Would that have
been injecting her with insulin?
Sorry, yes it
(2) So, tell me, from your earliest memories,
kind of the range of options that were open to you, if anything went wrong.
would be, obviously, to phone my Dad, and we used to have the number of… my Dad‘s
number by the phone. Also to call my
grandma - my Mum‘s Mum. Also 999, as
well - that was the main thing. I do
remember calling 999 quite a few times. More often than not, it would be that.
And what did you
say when you got through to the operator?
We would just
say that basically "my Mum‘s diabetic. She‘s passed out, she‘s not coming round. We don‘t know what to do". And they would come round, inject her with
insulin, and then she‘d be okay.
What effect did
these scares have on you, as a small child?
It didn‘t really
affect... To me, it was normal, so there
was no real effect on myself. Obviously
you‘d get worried thinking, you know, she‘s passed out, she‘s not come to. But it didn‘t really affect me. To me, it was just normal.
Was there any
embarrassment for you associated with your mother‘s diabetes?
I don‘t think I
ever did feel embarrassed. Living where
we used to live before, when we used to call for the ambulance, a lot of
neighbours used to come out of their house. And it wasn‘t embarrassment, it was more frustration, as in, they were
very nosey and coming out. And obviously
they knew my Mum was diabetic, and they knew she had passed out, but the fact
they used to come out. And it wasn‘t a
concerned thing they were coming out for, it was just basically "oh,
what‘s going on now?" kind of thing. I think, as a teenager, going through the... when we used to go in
shops, things like that, my Mum, when she‘s about to pass out, she tends to
become very moody, and she could come across very rude to shop people. So, in that way, it would be embarrassing, as
in "Mum", you know, "you need to eat something". And my Mum‘s very stubborn, when she gets to
that point. She will not acknowledge
you, she won‘t listen; it‘s just one of her signs. So, yeah, to that point it was a bit
embarrassing, but other than that, you get over it. You know, you grow up, you become more mature,
(3) Were there any embarrassments outside the
house when you were younger than a teenager?
no. But I do remember my sister - I
think she was round about four or five, I can‘t be precise - but she was
walking along one of the side streets from our house, and my Mum had passed out
in the middle of the street. And what
she had told me, obviously, she had passed out and a car had come, and a police
car had come as well. And my sister was trying
to explain to people that, you know, Mum‘s diabetic. My sister was more mortified, as in "oh
my God, my Mum‘s in the middle of the road, and I can‘t help her", but
Did you get to
know more about diabetes as you got older?
obviously, she had Balance magazines that came on a regular basis, and we would
obviously read it to begin with. However, as I used to get a bit older, I have to admit, I did become
quite ignorant towards it. So, I‘d only learn,
basically, what my Mum would tell me. And as a child - it sounds quite rude to say - but when your mother‘s
constantly telling you things, you don‘t really want to listen; you become
defiant against it. So, in that sense, I
did become quite ignorant, yes.
Has your Mum‘s
response to diabetes changed, over the years?
She‘s got to the
point where she knows the signs, however, in the past couple of years, she‘s
quite stubborn. She has passed out quite
a few times, and been oblivious to the signs, as if she‘s been ignoring the
signs. It has affected her... to a point, it has affected her
personality. My Mum has tended… she tends
to forget a lot, and as a family, as a whole, we do tend to think it‘s part of
the diabetes which has affected her in that sense. Her memory has got quite bad. And also, sometimes, it does affect your mood,
because, obviously, if you‘re passing out and you feel drained, you are on a
low, you know, for long periods of times.
And has the way
her diabetes been treated - has that changed over the years?
as a teenager, and my Mum‘s obviously... When she passes out, she‘ll go to the
relevant doctors, and things like that. And the only thing they ever come out with to tell her is, basically, to
adjust her insulin levels. You can only
adjust it every so often, and if you‘re constantly adjusting it, you‘re messing
your body around. And they don‘t seem to
understand that there‘s more to it, rather than just adjusting the insulin
levels. And when they tell her "you
need to make, you know, a higher dosage, a lower dosage", Mum - obviously
she knows her own body - she knows what she can and can‘t take, ‘cause she
knows how it‘s going to affect her. And
they… I have noticed, they do tend to ignore what she‘s saying. Just because they‘re qualified in the area,
they assume they know, but they tend to disregard the person who‘s living with
it for forty years, who knows how it‘s going to affect their body. I have been on phone calls to these, you
know, relevant bodies, and they are quite rude. However, she‘s on new medication at the moment - it‘s to do with DEFNA -
and I have to say it has improved. And with
her diet has changed, she can eat a lot more things with this new medication. So, there are big changes in diabetes,
especially in the last couple of years. Sorry, I do mean DAFNE. Basically,
she went on the course, and they informed her of... basically, she can eat what she likes, but
she has to monitor the level of insulin she takes. So, therefore, she can have more or, you
know, reduced levels of insulin. So,
it‘s better for her, in that way, and she does feel a lot more freer about her
diet. You can actually eat chocolate, as
well, so that‘s also an added bonus!
And does she
seem to cope better with her diabetes since the course?
Since she‘s had
the course, she hasn‘t passed out, so it‘s been very good. And she has a community-base with the people
who actually attended the course as well, so obviously they all communicate to
each other. And after the course, nobody
else has really passed out either. So, I
mean, the other insulin trials that she‘s been on before, there‘s never been
enough education. However, with this
one, there‘s been a lot of education on it, and therefore it‘s helped her. It‘s like they‘ve really paid an interest.
I think I‘m
getting some contradictory messages, so you can reflect on this. Now she hasn‘t passed out so much with all
this education, but in the past, she was passing out a lot. Could you say that was her fault, in any way,
that she‘d perhaps ignored the doctor‘s advice?
I wouldn‘t say
it was her fault. There was a lot of
contradicting information. And my Mum is
very in tune - she‘s very, you know, she‘s very, like, knowledgeable; she‘ll go
out and research things. But then, if
doctors and specialists are telling her one thing, and the other doctor is
saying something else, it‘s very frustrating. I mean, the same specialist may tell her "well, increase your
dosage". And then, a couple of
months after she‘s done that, and it‘s still not working, "well, decrease
it", or "increase it to this much". It‘s always contradicting on their part,
rather than my Mum‘s part.
(4) And you say that you‘ve had conversations
with medical staff on the phone. Can you
describe the circumstances?
When my Mum has
spoken to specialists on the phone, and it will get a bit heated, as in,
they‘re not listening to what she is saying. So, in that case, I do take the phone and say "look, my
mother... you know, this is what‘s
happening. I‘m telling you from a point
of view, as I‘ve seen what‘s happened". Then they tend to listen. It‘s
because… because she‘s diabetic, they just assume she doesn‘t know what she‘s
talking about, because she may be passing out, or something. And because my Mum‘s... she gets very heated
about it, which is understandable, they don‘t want to listen to what she‘s
saying, but they‘ll want to listen to an outsider. It‘s very frustrating.
It sounds as
though you‘ve been quite involved in the management of your mother‘s
diabetes. How has she coped when you
haven‘t been there?
When I haven‘t
been there, she‘s coped fairly fine with it. I mean, obviously when I was at college, she‘d be more reliant on my
father. At that time, he was actually
during the week, so it was quite hard for her. She‘d have to be more reliant on her mother, but, however, her mother is
unable to travel, so she‘d have to phone her brother. My Mum, she feels as if it‘s a burden,
phoning other people. I mean, it is her
family, but it‘s harder, she finds, because obviously there‘s that divide
between the family, so she feels a bit of a burden, in that sense. A lot of the time, she will just, say, ring
999 instead, because she feels it‘s just the easier option, rather than ringing
the family members. During university,
my sister was here a lot of the time - and obviously myself - and my sister was
mainly the main person who was, you know, helping my mother, in that case. After that, obviously, my sister‘s left home,
it‘s just me and my Dad, and it will be myself who‘ll basically be here, who
now injects. I mean, sometimes I might get
a bit scared, in case there‘s a couple of air bubbles in there, and I have to
ring my Dad, and, say, just panic a little bit. And then he‘ll either tell me "just wait and I‘ll come home",
or "ring 999". But more often
than not, we tend to do it as a family, rather than ringing 999. You just feel like a nuisance, really,
ringing 999 all the time. But other than
that, she‘s done fairly well. I mean,
she will manage it herself, and when she‘s home alone, she‘s very... she‘ll be
checking her blood sugar level, she‘ll be constantly doing it, just to make
sure she‘s okay. She‘s just more
vigilant, in that sense, when she‘s home alone.
And what happens
when you‘re at work?
When I‘m at
work, I mean, she‘s gave my telephone number to her work colleagues. So, therefore, when she‘s at work, I‘m the
first port of call, obviously, because my Dad does nights. So, they‘ll call myself or they‘ll call 999,
but they‘ll always call me, just to inform me of what‘s happening. When she‘s at home, again, she‘ll phone
myself at work or phone 999. I mean, if
I can, I will always leave work. Work is
very understanding, in that sense, so that‘s good, and at times when they‘ve
not, I‘ve made it a point to them, saying "look", you know, "it‘s
my Mum, I need to be there". So,
they are understanding on their own backs, or by me, you know, telling them.
That‘s quite a
responsibility for you.
Not really: it‘s
my mother, so you are going to do it. I
don‘t see it as a responsibility. It‘s
how you would be with your children. If
you have children, you‘d do the same, so... Family‘s family.
(5) You mentioned phoning your mother‘s
mother. How has your mother‘s family
reacted to her diabetes?
Well, her Mum,
she will tend to panic, if I do phone her; obviously, that‘s how a mother would
be. The rest of the family have been
fairly good, they will be attentive. However, as a child, I do remember, say if we couldn‘t go to functions
because my Mum may have passed out, and therefore feeling tired, they would
have always quizzed me and my sister afterwards. "Oh, so your Mum passed out, did
she? When was that, what time was
that?" It was more in the sense
that they thought my Mum was using it as an excuse not to go here or go
there. My Mum‘s very family orientated,
and she‘d never use things like that as an excuse. But you did have the feeling that they felt
she was using it, you know, as an excuse not to go to places, which was, you
know, not as supportive as they could have been.
What was your
impression of your mother‘s family‘s attitude to her diabetes?
They were quite
attentive. However, when I was talking
to my Mum about the culture and things like that, the Asian culture is
basically, if you have an illness or a disability in this lifetime, because,
obviously, they believe in reincarnation, you must have done something bad in
your previous life. So, when my Mum
first developed diabetes, it was... she
was shunned. She went to live with her
grandma, so she was shunned away from the family. And it was very much, "you‘ve done
something wrong". Now, as a little
child, it‘s not very nice to do that, but obviously it‘s the culture, it‘s the
way of life; they don‘t know any better, in that sense. And obviously, until they come to this
country, then, obviously, with the Western way of thinking, things change. But it was very much, you know, she‘s done
wrong. And also, it‘s like... my Mum did used to tell us that, when it used
to come to, you know, say, arranged marriages - so that‘s the Asian way - they
would always try and fix her up with somebody who had a disability. So, they could be in a wheelchair, but,
"oh, you‘re diabetic, so you should be with someone who also has a
disability". They didn‘t see her as
normal. So, it says a lot, that when it
comes to the point of having your future with somebody, your own family don‘t
see you as normal. And, obviously, as a
family, we do pick up on that.
(6) And what about the attitudes of your extended
family on the other side?
Okay, well, with
my sister‘s family - as in her new family - they have been a bit weird, with my
Mum, in the sense of baby-sitting. We
have noticed that when they do ask for my Mum to baby-sit my little nephew,
it‘s always somebody else has to be in the house, or will never allow her to
baby-sit on her own. I do find this a
bit peculiar. I mean, obviously, yeah, my
Mum may pass out, but then, she‘s raised two children, there‘s been no problems. She‘s raised my elder nephew, with no
problems. But, because of the younger nephew,
there‘s, you know, "oh, we don‘t know, what if this may happen". And again, it makes my Mum feel as if there‘s
something wrong with her, that she‘s not normal, and that she may do something
wrong. And it‘s quite rude, and quite
bad that people have that kind of mentality. I mean, with my Dad‘s side of the family, they‘ve been very accepting of
it, because… it‘s mainly because they‘ve got people in the family who have
diabetes. So, therefore, they‘ve got the
education there. And my Dad‘s niece, who‘s
two years younger than my Dad, she also takes insulin as well. So, everyone‘s well informed, there. My grandma had diabetes, my uncle‘s got
diabetes - well, theirs is the tablet form. But they‘re very educated in that sense, and they don‘t seem to see
people as different from them, which is good. However, obviously, with the Asian side - my Mum‘s side - it‘s obviously
a bit different to that. However, when
it happens to their own - because one of our distant cousins, she also has
diabetes, now - so, now it‘s "oh, we accept it, it‘s normal, you know, you
can do this, you can do that". But,
because it happened to my Mum, and obviously it was, you know, a big generation
gap, it‘s quite different, the people‘s perceptions.
So, you‘ve got
diabetes on both sides of the families. Do you have any concerns about getting it yourself?
No. I mean, if I, say, got it tomorrow, got it
today, I have no concerns about it. You still
can have a normal life; it doesn‘t affect you. People think "oh, it‘s one of the worst things that could ever
happen". No it doesn‘t; you can
have a normal life. It‘s like having contact
lenses. You can‘t see, but you use a
contact lens to see. So, what‘s the
problem? As long as you educate
yourself, and know how to take it, you know your limits, then there‘s no
problem. At the end of the day, we live
in a society where people just watch their diet. So, with diabetes, you have to watch your
diet, so, to a point, it‘s normal. If
anything, it just helps you have a healthy, well-balanced diet.
mother‘s diabetes affected your own diet, as you‘ve been growing up?
I think me and
my sister have had an excellent diet. We‘re obviously... Bread-wise,
you never have white bread, it‘s always been wholemeal. You can‘t have sugar. We‘re never allowed to have any fatty
foods. If anything, we‘ve had an
excellent diet, and that is down to my Mum. Obviously, with my Mum, she‘s very wary about if we have sweet foods,
and, you know, fatty foods, that we may develop it. So, we‘ve obviously passed that... my sister‘s obviously passed that on to her
children, and I think we‘re healthy individuals because of that. So, it‘s more of an advantage - sounds a bit
peculiar - it‘s more of an advantage to have my Mum being a diabetic.
Did you all eat
the same food as your mother?
Yep. There was no difference in our family. We were never thought to have any difference
in our family, when it comes to food. Everything is the same: my Dad eats the same, we all eat the same, and
everybody‘s happy with the food.
experience any restrictions in either meal times or eating out?
restrictions at all. There was nothing
like that. I mean, my Mum, she‘ll
obviously... say if we go out for a
meal, she‘ll watch what kind of dessert she has, it wasn‘t too sugary, and
things like that. But then, as a family,
we don‘t really have a sweet tooth anyway, so it was normal for us.
(7) What would you say was the most frightening
time for you, regarding your mother‘s diabetes?
Well, when my sister
had moved out, and my Dad was at work, it was my first time ever injecting my Mum. And I knew how to do it; I‘d read the
instructions and I‘d practiced before. And it was my first time ever doing it. And I was always told, always be careful there‘s no air bubbles in
there, because if there was a massive amount of air bubbles, and it‘s going
into her bloodstream, obviously she can die with that. And I panicked like no-one‘s business. I was very, very scared. I was, with the syringe, flicking the syringe
every five minutes, flicking, flicking, flicking, flicking. And I just couldn‘t take it. So, I rang my Dad, and said "look, I
can‘t do this", you know, "there‘s too many air bubbles in
there". He goes "look, I‘m
about five minutes away from home." He came home, he looked at the syringe, and he goes "no, no no,
you‘re fine with that". And I just
couldn‘t do it, but he did it for me. So,
to me, that was the most scariest moment. Obviously, when I thought my Mum was a monster, as a young child... But when I‘ve had to do it myself, that was
very, very nerve-racking, because it was... her life is in your hands, to a
described some events that could be called traumatic, and yet, you‘ve also used
the word normal, normal, over and over again. Would you like to reflect on those two?
has traumatic parts in their life. Yes,
it was scary, but again, because it‘s all I know, so to me it is normal. I wouldn‘t change anything. If anything, that moment has made me more
aware. And, obviously, I‘ve educated
myself more - I know what to do more, I‘ve taken more of an interest. So, it‘s helped me get more close to my Mum
within the diabetes side of her life.
Can you reflect
on what could, perhaps, have helped you, as a child, coping with your mother‘s
when I was younger, I had the brief training, as in a ten, fifteen minutes
session with the doctor with the orange. I think, for young children, there should be like a child-friendly
training session for children. A
child-friendly book to help children as well. There is no information out there for that. And for… obviously, if your mother is
diabetic, who‘s the main person around the mother? It‘s the children. So, there needs to be more of a
child-friendly focus, with the children, on the training segment. Also, people like the specialists, they need
to take more of an interest with the children. Yes, they talk to the mother, but then, obviously, if the children are
there at appointments, they should take more interest with the children as
well. There is no education out there
for children, full stop.
(8) What are your memories of going to the
hospital clinic with your mother, as a child?
Waiting in the
waiting room, obviously, for long periods of time. Playing on the toys; getting very, very, very
bored. People coming out, and speaking
to my Mum, but there was no communication towards me and my sister; it was as
if we weren‘t really there. Nobody
acknowledged us. It was just, me and my
sister had to entertain ourselves. And
they were basically the memories: just waiting in waiting rooms.
What are your
feelings about your mother‘s diabetes now?
I‘m very happy
with the way she‘s managing it. The only
other concerns that myself and the family ever have is obviously her
driving. There have been quite a few
occasions where I‘ve have been in the car with her, and she has started to pass
out a little bit - she‘s… you know, her blood sugar level‘s going down - and
she does become very stubborn. And it
was more nerve-racking when I didn‘t know how to drive, so, therefore, if we
stopped or we needed to, you know, take control of the car, I didn‘t know what
to do. However, obviously, passing my
test, I feel more, you know, confident now. Where I feel that she‘s not ready to drive, I myself will drive. However, she has got a lot more better - she
will always test herself before she drives. With this new medication, it has helped her, again. Yeah, but that‘s one of the main concerns,
because, obviously, if she has an accident on the road, what‘s going to
happen? Another car‘s going to go into
her, and who‘s going to be the one at fault? Obviously it‘s going to be her, isn‘t it?
Has she ever had
accidents - not due to diabetes; just other accidents, yes.
Do you have the
impression that it‘s any easier, nowadays, for a child to cope with their
I do think
there‘s a little bit more education out there for children. I mean, for example, say you watch these TV
programmes, and... where children win
awards: "oh, my child did this when I passed out". And you think, well, sorry, that‘s an every
day occurrence for me, what‘s so special about it? And there is a lot more information out
there, which is good, but I do think it can get better. I mean, I have never seen any child-friendly
books out there, again, for children, concerning, you know, the illness. And I‘m sure that‘s with any other illness
out there; there is no child-friendly information out there. People feel that they need to protect the
children by not informing them, but then they‘re not protecting the children,
because, if something happens, as a child, the first thing you ever do is blame
yourself. You don‘t think it... "oh, well, it‘s a normal thing",
you blame yourself. So, to protect the
child, they should educate the child.