I am John's caregiver, a heart-rending, thankless yet rewarding task.  Like many caregivers I found that the job was mine because my nearest and dearest was desperately ill.  A caregivers job, in my experience, covers a wide range of tasks.  Primarily I dealt with the Hospital, a big scary place full of high powered professionals.  I struggled to absorb medical terms and treatments as John went through the tests required to assess him for transplant.

If I could show myself to be practical, level headed and reliable "The Team's" job would be a little easier.  I found myself playing this role and hiding my fright and distress.

On the home-front caregivers find themselves trying to hold the family together as well.  I had to tackle jobs that I really had no experience of.  Luckily no fuses blew and the lawn mower always started first pull.  Family and friends, of course, were frantic with worry and I found myself constantly answering the phone, providing updates and reassurance.  To lessen the load I set up a network of people to inform, who in turn passed information on.

When John was sent home from hospital to wait for a liver I had to deal with drugs and dressings, night feeds and nutrition.  I got to know the District Nurses and the Cancer Nurse well.  These ladies were a bright spot in our existence.  During this time I realised that I was becoming more isolated and I felt very alone behind my bright, brave facade.

The transplant was successful and John has been well for 18 months and I find myself faced with the problem of trying to let go.  Now my constant care is not needed I must stand back and let him live.  If I monitor him I must do it discreetly and try not to panic if he gets tired and sore.  I live with the knowledge that we are together on borrowed time.  My task now is to try and make our lives as full and happy as possible.

I have met other caregivers and I see in their faces what I see in my own.  I see the tension around the eyes and the body language which indicates the stress they live with.  Many people have introduced themselves as "only the caregiver" and have become retiring faceless people.  Many like myself have put their needs last.

You do a job that other people can only guess at.  Your continued good work is so important.  It needs to be acknowledged and appreciated.

This article has also been published in our Newsletter, "Hepatic Happenings", Volume 2, No. 1, February 2001.

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