No-one chooses to become a
carer, how many of you would take on a role that keeps you working 24/7 around
the clock 365 days a year, has no holidays, no sick pay, no rights, no margin
for error and absolutely no salary… in fact it costs you to do the job, costs
you in money, costs you in terms of your job, your friends, your health… no,
nobody chooses this role.
However, every single one of
us could become a carer at a moments notice…. either as a result of a
catastrophe such as a motor accident, or by the slow and insidious development
of a debilitating condition, which comes on slowly then one day has reached the
point where it needs around the clock support.
Your loved one has a cold…
you get them a drink… you look after them… that’s caring… One day, for a
growing number of people, that caring becomes essentially a full life consuming
around the clock job… and you do it without question, because you do look after
your loved ones. It is some time later, when you have lost your own self and
become a carer, that you realise that you are just that, a carer.
There is an army of carers
out there, in fact it is estimated that carers, like you and I, actually save
the state some £119 billion per annum… that is a lot of money… a lot of carers.
For so many people, their
caring role doesn’t give them a single moment to be their self, to be anything
but a carer.. and it doesn’t stop when you sleep, because you are aware every
second of the support your loved one needs from you. You do all those jobs that
your loved one wouldn’t dream of letting you do under other circumstances….
I am a carer, I care for a
loved one who has suffered psychotic depression over 8 years or so, and now she
has dementia… she has been in hospital for the last three years, and once the
service providers get their act together and agree who does what, she will go
to a nursing home. This means that for the
last three years my caring role has been easier than for many people… I
don’t have to dress her, feed her, wash her, attend to her toilet issues… none
of that… I don’t have to worry about giving medication, making sure it is all
up to date. I don’t have to stay in home every hour unless I can get a family
member or friend to sit with her… yes, it should be pretty easy. I know I am
better off in this respect than dear friends who have cared for loved ones with
Motor Neurone Disease, Emphysema, Cancer and the rest,,,, because I can come
and go as I please, and don’t have those same pressures of actually looking
after her every last need.
However, nothing is that
simple is it… my situation is frankly appalling… I am not looking for sympathy,
that does not help, but could use some understanding… that is all most carers
look for.
When you are caring for
someone who is in hospital, has been in for years, who will never come home
however long they live… will move on to a nursing home, you don’t have the day
to day caring stuff to do.
But it is still your loved
one, you still love them, and likely they still love you… but you can’t be
together, you are living apart, a few miles apart geographically, but living
apart by immeasurable distances in reality. You only meet when you go to the
hospital to visit… that’s 3 or 4 times a week for me now, about an hour a
visit… so 3 to 4 hours a week with the person that means everything to me, but
is no longer that person.
You still care, love, want
around the clock, 24 hours a day, that doesn’t change… there is a painful
loneliness in that… with friends, wherever you are, you are thinking your loved
one should be with you… feeling guilty that you are enjoying something which
they can’t, even though they are doing nothing, not far away.
When you are together… the
love is still there… friends who have been to the hospital with me say they are
touched by the obvious love between us, but it can only show at times through
the eyes, through a look… there is
nothing else now, those silly little things you used to do and say together…
they go through your mind… you say little things, do some of the little things…
but there is sign of remembrance, no gentle melting response, and none of the
little gestures and words coming back.
In fact they haven’t spoken
an intelligible word for over two years, and rarely even manage an
unintelligible one. You think they recognize you, but that would be the last
defeat, not being recognized, so you are convinced anyway.. but the reassurance
is hollow.
You spend time with your
gorgeous grandchildren, and they mean so much to me, as do our children, and
you love being with them, but you also find half of your mind is occupied by
the fact that she is not enjoying the same thing… you tell her about them, you
occasionally see a look of longing… but rarely… sometimes a smile… but rarely,
more often the same blank expressionless stare… the one that leaves you feeling
lost, frightened and helpless…
The pressures are always
there… round the clock.. at least if they are at home you have the comfort of
being able to help, I say comfort, I know it is desperately hard work… but
sometimes you can crave it to ease the nagging loneliness.
Awful as it sounds, I wish
she had died when she became this ill… I can’t bear to think of her just
sitting… sitting… not communicating… don’t know even if she has thoughts… I
don’t know if it helps that the hospital staff tell me she is often tearful
after I leave… yes, me too, but I can deal with it, I can write and talk, does
this mean I should go more often? See more of her… I would like to but I find
it so hard to see her like this, I don’t think it would help… but then I feel
awful because I don’t. go more often.
