Thirty years a lawyer and many personal injury cases down the road. Often cases involving noncongenital brain injuries to young children, usually caused by a traffic accident or by a mistake made at birth in which severe oxygen deprivation has significantly affected the brain. The consequences often lead to cognitive problems: nothing or hardly anything can be seen on the outside, but independent functioning is no longer possible. Planning, organizing and taking initiative are skills that are lacking. Such clients need at least 24/7 supervision, as well as direction and sometimes assistance in carrying out activities that we consider no more than normal.
Life of victim and parent turned upside down
For example, I have a client who was hit by a bicycle when she was 13 years old. She was in all the stages known to coma for months. Eventually she did come out of it, but as a different person. Initially, she experienced very violent rages. She can hardly stand crowds, shows no initiative and gets lost easily. From the very beginning, her mother took care of her: 24 hours a day, because even in the nights things could go wrong. Fortunately, the tantrums have virtually disappeared and together they have found a livable rhythm. Nevertheless, this mother, and therefore the father, no longer has a life of their own.
Milestones from a different perspective
And then the children who joined the birth already brain damaged hit. Every baby needs 24-hour care, so in those first years the limitations do not yet affect the parents‘ lives as much, you would think. Yet it soon turns out that the so-called ’milestones‘ are not achieved or not achieved in time, and a lot of rehabilitation - physical therapy, occupational therapy - has to be done. And if, at the age of seven, your child is still not potty-trained, shows no initiative other than wanting to go ’on an adventure' all the time, and talks badly, as parents you have your hands full for years more than is normal. Often one of the parents stops working in order to care. Perhaps with a PGB it is possible to also buy help from third parties, so that there are also some moments for themselves or the other children, but also in this kind of case their own lives are in the background.
Thirty years as a lawyer: I heard it and tried to imagine what that is like; being on standby for another person 24 hours a day, no longer having a life of my own. Then I took care of the case and closed it. I could leave that misery behind me and go on with my own life.
Now a caregiver herself
Thirty years of being a lawyer with parents who are thirty years older than when I started: they are now not ‘the old ones’ and have needed 24-hour care for some time. They get that from professionals. Except on Sundays. Then my sisters and I do it. That turns out to be quite a job. They keep you well occupied and in those 24 hours there is indeed no room at all for your own activities. That is totally fine for that one day and fortunately I have many sisters, so I can recover for weeks before it is my turn again. It does make me realize better how leaden the lives of my clients' informal caregivers are and how much they sacrifice. At most, a PGB of 40 hours per week is obtained, while care is also needed before 9 a.m., after 5 p.m. and on weekends. We do arrange for those extra hours of care to be reimbursed; that is our job. But one's own life is not back with that. I realize even more now how important the role of informal caregivers is and how heavy that care can also rest on their shoulders.
Therefore: kudos to family caregivers!
If you have questions about this blog, please contact the author, Mirella Hartman.