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Below you will find a copy of the main stories that
appeared in the September/October 2003 edition of the QWHN News.
WOMEN AS CARERS
Carers provide unpaid
support and assistance to a parent, partner, child, relative or friend
with a physical disability, mental illness, chronic condition or who are
frail aged. Carers provide all sorts of care including help with daily
living tasks such as cooking, cleaning and shopping; assistance with
health care like administering medications and also emotional support and
comfort. Caring differs from the natural acts of nurturing that occur in a
relationship when the normal boundaries of that relationship are exceeded;
such as a daughter caring for a frail elderly parent or mother for a child
with a disability.
CARERS’
CONTRIBUTION TO THE COMMUNITY
Most carers are not paid
for their services though the effort they expend is vital to the person
for whom they care. The efforts of Queensland carers save taxpayers around
$3.2 billion annually (1). Conservatively one in eight persons or
alternatively one in five households will find themselves in the caring
role at some stage in their lives. Two thirds of primary carers (the major
source of informal care) receive a government benefit or allowance and for
56% (2) of primary carers this is their main source of income. Criteria,
such as co-residency surrounding the Carer Allowance precludes many carers
from being eligible even though they may provide significant time,
intensity and/or frequency of care.
The caring role may occur
early or late in one’s life and most people feel obligated to undertake
the role. The position can last for less than a year or for a life-time
and maybe for a few hours a day or all day, everyday. For some carers
caring can become a career as 68% of carers have been caring for more than
five years and 40% for more than a decade (2). Although both males and
females are well represented as carers, the majority are female (56%).
They also constitute a much larger proportion of primary care-givers at
70%. Almost half of all primary care-givers look after someone over the
age of 65. Women make up 52% of carers who are not primary carers and 77%
of all carers are of work force age (2).
There are significant
barriers to participating in the workforce. These include lack of flexible
work practices and workplace arrangements, lack of appropriate, adequate
and affordable alternative care programs and support services that
facilitate workforce participation as well as the loss of entitlements to
carers on government benefits and income support. Nearly 21% of carers
have had to give up paid work because of the inability to juggle both
caring and working roles with the limited supports available to them. 59%
of carers are not attached to the workforce. Carers may be as young as
five years old with 53% of carers under the age of 18 being female. 51%
of younger carers care for their mother, many are in sole-parent
households (2).
The intensity, frequency
and time consumption of care giving may cause family relations to suffer
thus eroding valuable support networks. Mental and emotional wellbeing
suffers, stress increases, general health declines (67% report a decline
in health), sleep patterns are disrupted and 33% suffer from physical
injury (2). Care-giving is a health hazard (3).
WOMEN IN
THE CARING ROLE
What then does this mean
for women who are Care-Givers in the above context? Very likely they will
never have had the opportunity to access appropriate workforce training or
experience to gain employment. The financial burden of caring allied to a
high dependency on government support and allied to the complexity or
consistency of their caring roles means that they may be limited in their
social and recreational activities.
Not being able to afford
“coffee mornings” or theatre trips with their peers, being several seasons
behind with current dress fashions let alone hairstyle and makeup can lead
to poor self image, social isolation or loss of communication and social
skills. The cost of caring can preclude simple pleasures such as a Sunday
drive, buying fish and chips to eat on the beach, having time to read a
book (if one can find the time and resources to get to the library) let
alone finding the energy to undertake creative activities. Having a
bathroom that has been modified to take a shower-chair may mean no more
opportunities for a relaxing soak in the bath!
Carers need to be supported
and perhaps the most fundamental way is for the community in general to
acknowledge, with respect, the role of carers and to value the
contribution they make to the wellbeing of any community. Acknowledging
the value of caring is much like fighting ageism or sexism. I urge all who
read this to be aware of your response to carers – let them tell you,
respect their unique knowledge and skills and on a professional basis
separate the care-giver from the care-recipient. Through your
acknowledgment and respect for them in their role you free carers to care
for themselves, to seek and utilise supports, to define boundaries, to
articulate their needs and to enhance their state of well-being.
(1) Australian Institute of
Health and Welfare (2001) Australia’s Welfare: Services and Assistance,
Australian Institute of Welfare: Canberra
(2) ABS (1999) Disability,
Ageing and Carers: Summary of Findings. Aust. Bureau of Stat. Canberra.
Note: unless otherwise
stated statistics are from the above source.
(3) Carers Association of
Australia (1999) Warning – Caring is a Health Hazard: Results of the 1999
National Survey of Carers Health and Wellbeing, CAA: Canberra
Barbara
Dennis, Community Development Officer, Northern Region, Queensland Council
of Carers Inc.
A HANDS-ON VIEW OF
LIFE AS A CARER
Up until recently I thought
I had a busy life. I would feel hard done by and harried if I could only
meditate for twenty minutes instead of my usual half an hour, or if I was
too tired to push myself along to my yoga class. But after speaking with
Dianne* I realise that I have an abundance of time and freedom and that I
take it for granted.
Our society seems to be in
a frenzy promoting globalisation and making the world one community
through technology, but at the same time we seem to be spending less time
looking around us and wondering what struggles or obstacles others are
dealing with on a daily basis. The woman beside us in the queue at the
grocery store or our neighbours. Often it is only when we are forced to
stop and listen, that we realise what is actually going on around us.
My life has certainly been
enriched by listening to Dianne and hearing first-hand about the situation
she has been living in for the last thirty years. This is her story.
Dianne is a kind, generous,
funny, warm and self-less woman in her fifties. Thirty years ago she was
the mother of one, and pregnant with her second child. She gave birth to a
beautiful little girl, Lisa*. But she was born with a multitude of
problems, and was immediately subjected to hordes of tests and medical
procedures, that continued almost daily for the first few months of her
life, and continue regularly to this day. In her words, “I gave birth and
an hour later my whole world changed and it’s never been the same since.
The rollercoaster ride started and I just had to hang on and survive.”
Dianne was fortunate enough
to have a supportive husband who was beside her the whole way. But due to
the fact that all of the medical procedures Lisa was subjected to from the
moment she was born were carried out by males, she developed a fear of men
and screamed every time one came near her, her father included. So Dianne
was, in almost every sense of the word, on her own. The sole care-giver to
a sick little baby, right from the start.
The next few years were
spent in and out of hospitals, traveling south to get treatment and
providing 24 hour care to her daughter. One of Lisa’s conditions is
Autism, but this was passed off as bad behaviour until she was fifteen. So
the advice Dianne was given in regards to Lisa’s condition made life even
more difficult. Dianne was told that unless Lisa was “sitting in a corner
rocking and slapping herself in the head all day”, she wasn’t Autistic,
she was “just a naughty child”. Dianne was encouraged to treat Lisa’s
behaviour accordingly, for example, punishing her when she wouldn’t change
her routine. In exasperation, Dianne took the time out of her busy
schedule to do some of her own research and finally, when Lisa was fifteen
years old, she received confirmation from doctors in America that Lisa’s
behaviour was consistent with that of an Autistic child and was given a
program to follow. “Prior to following the Autism Program from the doctors
in America, life was absolute hell, Lisa was hysterical for most of the
time. But after 24 hours following the program they provided, my daughter
turned into an angel.” This made life somewhat more pleasant for Dianne,
there was less screaming and hysterics, but her life didn’t become less
complicated or stressed.
I spoke with Dianne for
over an hour and in that time she told me many stories of her trials and
tribulations over the years. As I started writing I felt overwhelmed,
wanting to include each and every one of them and unsure of what to focus
on, what was the most important. The fact is, it is all important and it
has all been a huge burden for Dianne. She has, for the last thirty years,
not had a moment to herself.
To put this into an
example. Due to Lisa’s absolute dependence on her mother, until she was 27
years old, Dianne couldn’t even go to the toilet with the door shut. It
would send Lisa into hysterics if she couldn’t see her mother at all
times. In the last three years, Dianne has been able to start shutting the
door, but Lisa sits outside and waits for her. This, as I said, is only
one small example of the pressure Dianne is under on a daily basis.
Only recently, Dianne and
her husband sold their family home and purchased a duplex. It was a way
for everyone involved to gain some independence. They live in one side,
Lisa in the other. This has worked in some ways, but is not without its
problems.
A typical day. Lisa knocks
on the door and calls out to her mother the moment she wakes up. Dianne
answers the door and takes Lisa back to her own unit and gets her
breakfast started. By the time Dianne has walked the couple of steps back
to her own unit, Lisa has followed her back in, just to be near her. “In
the space of about 45 minutes, Lisa can be at my front door knocking and
calling out six or seven times. Telling me things that she has told me
already, anything just to be near me.”
Dianne has in the last few
months, purchased a small business, her first taste of independence. She
leaves home and makes the short drive to the shop and by the time she
opens the door the phone is ringing. It is Lisa, checking to see that her
mother got to work safely. The phone will ring constantly the whole time
Dianne is there. Up to a dozen times a day. “She will ring to tell me that
the postman has been, and that I have mail. I ask her to put my mail back
in my letterbox and we have to discuss why for about half an hour. I know
it seems petty, but I just want to get my own mail out of my own letter
box. It is a small thing, but is something I cling to.” The opportunity to
go to work each day is a new experience for Dianne, but it is also
difficult. “I think about selling my share of the business almost every
day, it is quite exhausting, as I am still caring for Lisa, and she is
constantly ringing me, but I am holding on to it for dear life.”
It wasn’t until about three
months ago that Dianne was told by a friend that she thought she would
probably be eligible for some kind of a Carer’s Allowance. In thirty years
of dealing with doctors and other medical professionals, no one had ever
mentioned the possibility. She explains, “I probably should have realised
that I might be eligible for some kind of financial assistance, but I just
haven’t had five minutes to lift my head up out of the chaos and think
about anything other than the daily requirements to keep Lisa on track.”
But eventually, when she had a spare moment, she enquired and was given a
mountain of paper work to fill out to see if she fitted into the selection
criteria of a carer.
“I started to fill out the
paper work, which proved quite difficult with Lisa interrupting me every
five minutes, and I had to relive the whole thing. It was heart-wrenching
documenting Lisa’s medical procedures and problems right from the start.
It was almost enough to make me not want to do it. Sometimes it is easier
not to think about it. And when you stop for a minute and realise what you
have been through, it becomes too much. But I did it. I filled it all out
and took it back, and now I have been informed that because we live in a
duplex, without a door directly linking our two units, I am not eligible
for the $40 per week allowance. And it has taken me months to get to this
stage. It is a little discouraging.”
I asked Dianne if she has
tried to use services such as Meals on Wheels to lighten her load a
little. She replied, “I tried Meals on Wheels, I thought it would give me
a break, not having to assist Lisa with her meals, but it didn’t work out.
Due to the nature of Autism, Lisa requires a very stringent routine. To
the minute. If her meal is due at 12 o’clock and it comes at five minutes
to, or five minutes past, her whole routine is thrown out and she can
become hysterical. It is just easier to do it myself.”
Even going to the grocery
store proves to be a major production. “One day Lisa and I were doing the
grocery shopping and Lisa decided that she wanted to be home by 11
o’clock. I was in a huge queue with a big trolley full of groceries and it
was about 10 to 11. Lisa started to count down the time. ‘Uh oh, only 8
minutes to go. Uh oh, only 5 minutes to go’, By 4 minutes to 11, I had to
abandon the trolley and get her out of there. She was on the verge of
hysterics.”
Dianne was recently
encouraged to contact the Queensland Council of Carer’s, an organisation
she had previously never heard of. She decided to give them a call. “I
rang them and started telling them Lisa’s story, and the woman interrupted
me and said, ‘I don’t want to hear about Lisa, I want to hear about you.
How are you coping with all of this?’ It stopped me in my tracks, it was
the first time anyone had ever asked me how I was. I didn’t know what to
say!”
I would like to mention
here, that the main reason that Dianne is looking to get some assistance
for Lisa is, in itself, without a hint of selfishness. In her words, “In
the last few years I have started to get really worried about what will
happen to Lisa when I die. I can’t sleep at night fretting about it. Who
will take care of her, how will she cope without me?”
So this remarkable,
courageous woman who has spent the last thirty years living a life without
a thought for herself is finally trying to get some assistance, and her
reasons are still about her daughter, rather than herself.
When asked about support
from family and friends, Dianne’s reply was a little sad. “I don’t really
have a network of close friends. The friends I had when Lisa was born,
when I was in my twenties, have all moved on with their lives. I lost
contact with them, kind of got left behind I guess. And I haven’t had a
social life of any sort, so I haven’t been able to make any new friends.
My husband and I went to a dancing class for the first time recently,
mobile phone on hand of course, and I found it really difficult. I haven’t
been around other people in that kind of situation for a very long time
and I found that I didn’t know how to interact. As for my family, they
have been a big help, but my husband’s family don’t really want anything
to do with us. They find the situation too hard. It’s as though they feel
that if they don’t have to see us, it is easier for them to cope. So we
don’t have any support from them. We see them on birthdays and at
Christmas, but it is never very comfortable.”
But it is not all bad news.
When I asked Dianne what she enjoyed about being a carer, what she had
gained from the situation she said, “Lisa has taught me a lot. In many
ways she has taught me how to live. I have learnt that as long as we have
food and love everything is okay. If I put in twenty percent of the effort
that she puts in just to get through every day, I could achieve anything I
wanted to.” She continued, “Some days when I am really tired, I look at
Lisa and I realise that she is a survivor, someone can be mean to her,
really awful, and twenty minutes later she is giving them a lolly. The
world would be a better place if we were all like that. She has taught me
not to have a huge ego, and that life is what you make it.”
And what have I learnt from
Dianne? That courage, determination and kindness are what is important in
this world. My wish for her is that someone will help her out, even one
percent as much as she has helped her daughter.
Jeane
Griffiths
* Names have been changed
QWHN News - April/May 2003
QWHN News - December/January
2003/04
QWHN News - March 2004
QWHN News -
August 2004
QWHN News - February 2005
* NEW *
QWHN News - June 2005
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