Vulnerably alien

In just over two weeks, my mum has shifted from the agonised, unhappy and vulnerable alien state in which she was admitted to the hospital. Now she shares details of the lives of the staff with me, and speculates about where the real world starts and ends in this hospital. She has been wondering about the effects on the staff of working long shifts on the orthopaedic ward. I have observed that, with the exception of one acute mental health inpatient ward, my hospital jobs always included an occupational therapy department to retreat to. I don’t know what it’s like, really, to spend most of my working, waking hours in a green and cream, strange smelling ward, which beeps and buzzes relentlessly; not with hi tech machinery, but with people buzzing for help. In the occupational therapy department, vulnerability was not so evident, in that insistent, help me now! way.

This shift from painful terror to the current optimism, the night before her discharge, has preoccupied me. Initially there were so many questions that no one could be sure they were doing the right thing. Her vulnerability and acute desire to be anywhere else were all too evident and caring procedures offered little relief, being confused by morphine and medical mysteries yet to be solved. What could we do? I made some tiny scones, to tempt her to eat. I didn’t anticipate the nil-by-mouth sign or the guilt associated with eating them myself, because she couldn’t. Much of my hospital visiting has been as much about my needs as it has been about hers. I needed to see her, to be reassured of progress, to bring the outside (real?) world in. Last night she sniffed my hair and smelled the outside world, at the end of a warm spring day which could not be perceived from her bed. Meanwhile I have told her about my everyday life in great detail: so satisfying to have her there, listening. These evening sessions have refreshed a longstanding professional reminder-to-self: if these people weren’t ill/disabled/in crisis, there would be no job for me. No income, just remember you need them. So are we all vulnerable? Without you, patient service user, I have no job and no income. Do I need you more than you need me?

Occupational therapy has historically subverted this vulnerability with its emphasis on getting people to do things, to be independent. This is despite the supposed cultural critique of the notion of independence (is it individualist to want to wipe your own bottom?); and the dangers of coercion when it comes to getting people to do things, especially for themselves when they are sick and tired and yes, vulnerable. It is possible that I have turned a blind eye to vulnerability. But I wonder now, seeing my mother’s shift, whether the positive occupational therapy focus on capacity for, rather than just actual, performance mitigates vulnerability. And doing things is intrinsically empowering, or it can be.

There was quite a shift in focus the day the occupational therapist got involved: my father was given a checklist of measurements to take once he got home, of furniture, steps and stairs. My mum was able to talk about her life at home and what she hoped to do. Primed with hope from attention from the orthotist who fitted her spinal brace, and from first steps with the physiotherapist, she seemed to gather momentum for her recovery. With the prospect of discharge, paradoxically she seemed to be less alien in the ward, as if time and her recovery had made her more able to belong there. Now she can connect with the nursing and support staff, permanently on the ward and doing, in her eyes, the thankless tasks. And I guess that seeing my mother’s transformation is a rewarding aspect for them: her fear has disappeared and is replaced with an interest in them and their personal lives. I won’t miss my hospital visits each evening. I’m ready to catch up with Call the Midwife, and think again about vulnerability and alienation.

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Which side of the hospital am I on?

I’ve got a new role in relation to my local hospital. In the eyes of the nurses, I guess I’m a carer. When my son was in hospital a couple of years ago, with pneumonia, my carer role was ambiguous. Because he was 20 and therefore an adult, there was reluctance to involve me even though he lived with me and I was going to be taking him home when they discharged him. This time, it’s my mum who is in hospital and there is no sense of that ambiguity. Maybe it’s the difference between a general medical ward and an orthopaedic ward. Maybe it’s a different hospital. But the nurse caring for my mother was very keen to talk to me and that was helpful, even though it’ll be my dad who does the main caring, in reality.

I never worked on an orthopaedic ward as an occupational therapist: I did surgical, medical, rheumatology and care of older people. As a student I did orthopaedics on placement and I’ve visited many students on placements since. Many placements, many hospitals. This one, refreshingly, does not have a shopping mall at the entrance. The urge to buy things for my mum, and my son before that, and other people inbetween, is strong. Her bleak room and restricted situation (stuck on her back with a back injury, immobilised) calls out for flowers, scented sprays, posters, cards. Yet the physical reality of caring for her makes those things unnecessary clutter. So I’ve got a tiny piece of pussy willow to take in this afternoon: I noticed her stroking the sheets, stroking the table, and thought how impoverished the environment is, in every sense. Occupational disruption is necessary, for healing, but will sensory deprivation help?

We joked about occupational therapy yesterday: I had brought my knitting along and Mum suggested doing a pub quiz. She’s a volunteer at a day centre for older people and cuts quizzes out of the newspaper every week. Dad and I try them out for her. We did one repeatedly, before Christmas, so we could impress the rest of the family. My son sussed us out when I knew the chairman of the football association without hesitation.

For many years I have used Russell Hoban’s novel, Kleinzeit, to explore clinical reasoning with students. I particularly like the way Kleinzeit himself is immersed in a struggle with the hospital which sucks him in, seductively, and then spits him out, abruptly. The reasoning is surreal and arbitrary. I thought of Kleinzeit yesterday as Dad and I had a minor wrangle with the tea machine (we won). The lift was disconcerting: our destination (the first floor) was not indicated on the lift buttons but the up arrow button took us there all the same. Dad had struggled to contact the hospital that morning as there was a fault with their system and was finally able to obtain another number from a different hospital, twenty miles away. The main entrance to the car park was closed but there were no signs to the temporary entrance. So many signs, so confusing. Yet if you yield to the flow of hospital life somehow it works: our destination draws us slowly closer and relentlessly. When I worked as a mental health occupational therapist at Fulbourn hospital in 1980s there were many people who paced the corridors, apparently without a destination. Yet a general hospital assumes purpose: there are designated areas for killing time. Corridors, even at the weekend, are full of energy and direction, no doubt.

This week I will balance my new role with my usual ones, clouded with memories of other hospitals, other times, other roles. Forgive me if I don’t see you in passing I have a lot on my mind and a destination to reach.

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