Seeing the Bigger Picture. By Keith White

It’s always revealing when roles are suddenly reversed.  For example, when a doctor becomes a patient; when a judge is in the dock; when the strong becomes weak; when the giver needs help, or when the proverbial poacher turns gamekeeper.  In writing this piece I am reflecting in situ on just such a reversal.  As readers of this column know Ruth and I spend our lives based at Mill Grove seeking to help, care for and support vulnerable children, young people, adults and families.  We don’t have formal roles or titles, so are perhaps best described as “resourceful friends” (a term first coined, as far as I know, by one of our dear friends and colleagues, the late Bob Holman).  Day in, day out we are there for others, listening to their stories and trying to read their situations and understand the dynamics of their relationships and inner worlds.  Often what is shared and observed is familiar to us, with lots of replication of sameness, but sometimes radically new dimensions or challenges emerge.

So you can imagine the surprise when the two of us sat waiting for the visit of a Community Psychiatric Nurse and an Occupational Therapist as we sat beside a relative for whom we were caring, and who needed help and support.  Now we were the ones on the receiving end.  The familiar roles were completely reversed. Because these columns are always anonymised I won’t say any more about the situation, the particular needs or location, except to note that the two of us had been living alongside this relative for ten days.  The pair arrived on time and were bright, alert and empathetic.  Each knew her stuff, and both were obviously skilled in assessment, as part of a team.  Ruth and I were impressed by the effectiveness of the mental health services in the part of the UK where we found ourselves.

It was not long however before we realised that, despite their alertness and skills, the visitors were not reading vital aspects of the situation.  They were with us for the best part of an hour.  But in that time how did they know if what was going on, the behaviour they observed and responses to questions, were in any way typical of the person and his or her behaviour as a whole?  There were rhythms spread over 24 hours that we had come to experience, and to deduce an understanding of the whole dynamics and situation from an interaction or conversation during a slice of one of them was simply not possible. Then there was the question of what impact the anticipation (fear) of their coming had already had before they arrived.  And how were our visitors to know what the impact or effect of their visit to have for the rest of the day, and  following days?

And how were they seen by our relative? They introduced themselves appropriately as far as Ruth and I were concerned, and their questions and responses made sense within this shared framework, but our relative referred to them subsequently as “staff” or “nurses”, and after they left it was not clear whether the relative now believed she was still at home, or had been transferred to a hospital.  In any communication it is vital to know who the hearer or listener is, and messages are tailored to this assumption.  Was our relative using her usual language, or was it completely at variance during this particular conversation? If the assumption is at variance with the reality, then wires can become seriously crossed.

This relates closely to the question of what their intentions and motives were as seen by the relative?  In fact they had been invited by us to provide support in order to avoid hospitalisation.  But given the above, their very presence belied this.  It was as if their coming had somehow merged home and hospital.  The relative later spoke often of the visit and the visitors, always with anxiety, and one of the terms used was that it was an “invasion” of her privacy and personal space. If you want a technical term, their home was being “contaminated “by hospital in the process of the visit.

With these issues in mind, let me hasten to add that each of the two visitors epitomised the very best of professionalism.  The OT saw that there was a risk of dizziness whenever the relative moved from a sedentary position to a standing one, and recommended that she always take a breath at that point and before trying to move.  She also inspected the bathroom and recommended how the WC could be made safer.

And the CPN nurse helpfully identified the fact that visits to the bathroom were associated with an anxiety about the relative’s safety.  It was the one risky place in the current life and very restricted world of the relative.  So a refusal to attend to any bodily functions might have less to do with any Freudian-type associations or taboos, and more to do with fear of falling.

So it was that Ruth and I gleaned important information and insights from the visit, for which we are truly thankful.  But  in case the reader is under any illusions, what we realised par excellence was that when the visitors left, we were now once again alone and entrusted with the daily care of our relative, and that without information from us the professionals would be largely at sea, apart from the most basic of observations or conclusions.  The awareness and memory of our relative were so impaired during this episode that the possibility of her remembering to take a breath on rising was remote, and the conversation was so a-typical that any generalisations were shots in the dark.  Two days later at the very same time our relative was engulfed by psychotic behaviour and there was no meaningful communication for five hours: just restless, compulsive, repetitive wandering.  Had the visitors been there then would hospitalisation have become seen as necessary?

It is not difficult to anticipate the conclusion of this reflection, so let me do so briefly.  For there to be any remotely accurate assessment by professionals in therapy or mental health, the knowledge, experience, and feelings of those who know the “patient” is essential.  In many ways it is the only source of reliable information or context.  And relatives need the insights and knowledge of professionals.  The only way it can work is by trust and teamwork. So before closing I switch back into my more normal role, that of the resourceful friend (professional), and wonder how often my observations and notes could have been sufficiently enriched by the experiences and wisdom of family members.  Unless and until I am able to enter into their world, I am liable to give undue weight to my own assessment and knowledge.

Yes, family members have their biasses, their quirks, their loyalties, their limitations, their blind spots, but they have something that I will never attain to: sometimes a lifetime of knowledge of this person’s kith and kin, of their likes and dislikes, their culture, their story, their friends, their gifts and abilities, their beliefs, culture and personal language.  And in humility I need to acknowledge, respect and draw from that, while retaining a proper professional stance and relationship.  A therapeutic relationship requires an alliance between family and professionals.  We need each other.  There is no other way of gaining an understanding of the bigger picture, and of seeing the wood, rather than the trees.

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