Message to the parents of the newly brain injured person.

There are times when infants are born when things have not turned out as a parent might have planned. Despite our best efforts, careful prenatal environments making use of the best available information, there are infants who come into the world with handicaps and disabilities that cannot be corrected. When handicapped children are born in hospitals, the best ones immediately provide counsellors to talk with parents about the educational possibilities that will be open to them, and give them hope regarding their children’s futures, provided they attend closely to them. Child psychologists have found that this makes a major difference in the bonding that takes place in the family, and ultimately in maximizing the child’s, and the family’s, potential.

So I wonder why we can’t make it a practice to provide counsellors to talk to families of people who have had to re-start life with a brain injury. This moment of catastrophic change brings with it the need for a new bonding. Parents need to know about the possibilities that are available to them, what they can hope for. Of course it is impossible to give an exact prognosis for this person, but there are some words that we could say that might give guidance and comfort. Can we begin to imagine what we would like to say if we were place in that position? Wouldn’t it be great to have a book filled with multiple scripts for the occasion? You could imagine saying some of these things…..

“Congratulations that Christian is still alive. I know you are exhausted after all you have been through in intensive care and rehabilitation! And, let me tell, so is he. It is the end of a long journey for both of you, and the beginning of another, one that I hope will bring both of you nothing but joy!”

“Christian has been damaged in this injury, but he is otherwise perfectly healthy. We can hope that he will have a long, happy, and fulfilling lifetime. You always need to remember this – Christian is absolutely unique, as he always was. There is not another person who has ever existed on this planet, short of cloning, who has the same biological makeup that he does, or ever will. Even if a clone of Christian had a similar brain injury the effects would be different, because that clone would be exposed to environmental influences – including you and the life you make for him – which are absolutely unique, and which awaken some of the latent possibilities built into whom he is, and will leave others sleeping.”

“Now there is something else I need to tell you. It is statistically unlikely that Christian will achieve all that he might if he had not had the brain injury. He is unlikely to win the Nobel Prize, invent the final cure for cancer, attend Harvard, compete in the Olympics, conduct the New York Philharmonic, or become President of the United States. All of these are always possible, of course. I’ve seen brain injured people go out and do amazing things. But even if you have had dreams and aspirations for Christian’s future, learn to pay attention to him in the here and now, attending to his particular gifts and aspirations.”

Every parent of someone with brain injury has fears for the future, fears of what they might miss in providing for their son or daughter, fears that they would be inadequate as a parent of this adult person. It takes awhile to feel that you really have everything under control, or at least enough control that you could relax, so that you can grow together. ”

“But, now let me also tell you that fantasies, and ideas, and anxieties are a big part of what love is all about. If you lack these, and I’m sure you don’t, you would be lacking in those very qualities that make you human, and which Christian needs now more than ever as he re-learns what it means to be human, including how to love.”

“Let me tell you also that there are some things you will not understand about your child…and never will. Christian is his own soul, and with any luck will outlive you, and visit places in space and time that you in this worldly sphere are simply prohibited from going. Indeed, this is one of the great secrets and paradoxes of parenting the person with brain injury – you are preparing your child for a future you yourself will never know. Having to re-invent life after a brain injury makes the future all the more unknown, but it is still his destiny.”

“Now having said that, relax. It really isn’t as hard as you think. Treat him as if, out of all the possibilities, he chose this particular path to learn what he needs in this life. Treat him as if, out of all the possible parents in the world, Christian chose you! Literally. There are, in fact, philosophers going as far back as Plato who have believed that children choose their parents. You’re it. Take it as an honor, and a responsibility, not that you are a parent (lots of folks can make that claim) but that you were specifically chosen to be the parent of Christian, at this particular and special moment in time. If you learn to listen and to watch and just to be present long enough, time will reveal you to why this was meant to be. It is the same now as it was at the beginning of his life.”

“And let me assure you, Christian wouldn’t have chosen you if you weren’t up to the task. His very uniqueness, the uniqueness that makes him Christian – call it the song of Christian – is calling to you, and you will know, know deeply, how to respond to it. Yes, you will learn plenty of techniques, tricks of parenting the person with brain injury trade, maybe even a little bit about education, as you go along. You’ll find a great library of books out there about brain injury; you will meet people with brain injury who inspire you, either through life or through books and films that tell of what can be achieved; you will find a walking library of other parents who have gone through the same thing and who will freely share their experiences and wisdom with you – sometimes, perhaps, more freely than you’d ever really desire. All that is well and good, but you only need take on board what will help both you and Christian to grow. . Ultimately, all this is really about is paying good attention. Your ability to be the right parent for Christian at this time is built into you just as securely as being Christian is still built into himself.”

“And just one more thing. Don’t neglect who you are just because he has had a brain injury. You are born with that same energy and potential as he is, and his brain injury is an invitation to you to maximize it. There is nothing you can do that is more important to Christian than your becoming, fully, the person the Great Creator meant you to be. You will find, if you look, parents and families who negotiate this transition to become stronger than they could have ever dreamed.”

“In Yiddish at any milestone or acknowledgment of an accomplishment or rite of passage, one says “Mazel Tov”. Having Christian alive with you today is an accomplishment and a new beginning. The tov in Mazel Tov simply means “good”. The word mazel derives from the Hebrew for the Zodiac mazalot, and is associated with an infusion of cosmic energy yet to be delivered. The Talmud cites three life issues directly affected by the mazalot – life, children, and livelihood. Wishing someone “Mazel Tov” is an expression of hope that the energy of the universe should only be for our, and the world’s, good.

Freely adapted from : Albert, D. H. (2004). nature/nurture debate.

Service capture, human rights and family carers

This is a story that I have heard in several different ways over the last few years and so I have fictionalised a version of it here to highlight some of the issues that arise around “service capture” for people who are severely brain injured.   I connect this to the outcome of a recent Human Rights Review Tribunal in favour of family carers. 

“Service capture” describes a situation where there is funding attached to an individual with severe brain injury and a residential facility moves to exclude the family.  They do this because famlies tend to advocate for good care and this is labour intensive.  For example, learning to communicate following brain injury is time consuming and therefore more expensive in terms of staff.    The “service capture” argument is usually based around some version of a story where there family is seen as interfering/not grounded in reality/ not really advocating for the person with brain injury.  This kind of “care” will eventually and inevitably break the spirit of both the brain injured person and their family unless they can find some support.  Incidentally it is also extremely bad training and supp0rt for the paid staff in these facilities, who often get their greatest job satisfaction from just this kind of work.

 In 2008 I was an expert witness in a Human Rights Tribunal (in NZ) about the issue of paying family carers, in situations where there was funding allocated and no paid carers available to do the skilled work necessary.  The Ministry of Health argued very hard against paying families on various grounds that revealed a deep prejudice that was never substantiated by written policy.  One of their arguments was about “equality of outcome for the disabled person”, by which they meant that the residential units were able to provide a better outcome than the families were.  It an example of “service capture”, where services want to keep the funding even though a much better job could be done by families if they had control of the funding. This may seem to be different to the arguments used to stop families from interfering once the person has been admitted to a residential facility.  However, the reasoning is essentially the same – families cannot be trusted to provide good outcomes for the person with severe brain injury. 

My witness, based on doctoral research was able to give empirical support for the concept that families, especially those who are supported, actually do an excellent job. I was also able to demonstrate that people with severe brain injury are capable of making major improvements in their lives many years after the injury and long after they would be expected to plateau.  The improvements were a direct result of sensitive flexible care on the part of the families.  The importance of this witness was acknowledged recently by Rosslyn Noonan (Chief Human Rights Commissioner) at a disability colloquium in Dunedin.  She said that this was a good example of empirical research that was used to form case law. 

 Amazingly, on 8th January the judges came out in favour of the families. This is an astounding finding, because it challenges the arguments for “service capture” at many different levels.   It may be one small step to beginning to accept families as equal partners in work with brain injured adults. 

The story:

 “Anthony is 22 years old and had a severe diffuse axonal traumatic brain injury from a motorcycle accident in 2007. He is trapped within ‘a broken body’, cannot speak yet, but his mother recognises that he has all his thoughts, memories and personality.  This is what he wrote recently: “please help, I am trapped”.

When he was transferred to the long term residential care the house manager indicated that her staff was not trained to communicate with patients by writing (Anthony’s only effective mode of communication, though he can indicate yes and no).  The policy of refusing to communicate in this way seems to be corroborated by a report that indicates that Anthony cannot reason or process thoughts.  Yet his written messages make sense and it seems highly likely that he is wants to communicate something of his dislike for the place that he is in. 

There is  a deliberate and sustained policy of excluding his mother from meetings, although she attends him daily.  His therapists are in favour of any mode of communication that will foster his growth, but their voice is also being ignored.  Anthony is understandably furious and depressed that no one asks him whether he wants to write. 

 Angela, his mother is very concerned that Anthony’s “guardians” are not acting in his best interest and that they are financially motivated (they receive around $x/day for Anthony – you can fill in the amount here, the family feel they could do a better job for the dollars being paid).  She has been to a liaison officer who advises her that she needs some credible authorities behind her to speak to the fact that such treatment of Anthony is contra-indicated.  Through all of this she is sustaining a daily connection with her son as well as working full time.”

Carers

The input of family carers is a neglected aspect of TBI rehabilitation. In this section I will illustrate my experiences with the families of TBI survivors.