Not every hospitalised patient wants to get dressed every day, which does not necessarily mean they are deconditioned and languishing in bed, says Liz Lees-Deutsch
Recently my mum was admitted to hospital; she was acutely ill. On my first visit I found her dressed in a hospital gown, protesting that the strings were “throttling her”. I asked a nurse if they had any nightdresses and was told “you need to bring her own”. I had travelled 165 miles from my home and was exhausted; I was also tense and worried about Mum. I didn’t have keys to get into her house – which was, in itself, another 80-mile round trip from the hospital. I explained that Mum doesn’t wear nightdresses at home, only pants and a vest in bed and pyjamas around the house. No nightdress was supplied. This was the beginning of a rather fractious relationship about person-centred care.
During those first few days I visited three times. Mum was hallucinating and very frightened. She remained in bed, in a hospital gown, despite my having taken her pants, vest, pyjamas and clothes. After a full week she had improved significantly, was sat out of bed, fully dressed and complaining bitterly about being “all dressed up, with nowhere to go”.
She described the “regime” of staff getting her out of bed at 6.30am, getting her washed and dressed, then making the bed. She was incensed. She could not understand why she was being dressed, when she doesn’t get dressed at home. I suggested she tell the nurses, which she assured me she did, to no avail. I received daily telephone calls, in which my mum told me they were “torturing” her and she wanted to get out. I was both distressed and entertained by her forceful protestations and, eventually, her refusal to conform to what she called “institutionalised care for senile people”.
I realise I run the risk of upsetting die-hard, anti-pyjama campaigners but I understand Mum’s annoyance and empathise with her. You see, she wears pyjamas all day, not nightdresses or clothes, as she finds it too much of a bother to get dressed. In the hospital she was up and about, adhering to her physiotherapy and making good progress. She was not deconditioned and languishing in bed all day, as the term ‘pyjama paralysis’ implies. I shared stories of her frustrations with family, who shared their stories about neighbours seen in the local shop with a coat slipped over their pyjamas. For some, pyjamas are a creature comfort and represent normality.
Replicating normality in a hospital setting is difficult; I had taken in a clock, calendar, pen and paper, newspaper and mobile phone. I tried to help Mum stay orientated, in touch, to retain a sense of her normality. I informed her friends, who visited her daily. Getting up and out of bed reduces deconditioning, as does good physiotherapy and encouragement from friends and nurses. Mum had both but still felt she was “all dressed up with nowhere to go”. There was no dayroom, no chair by her bed (most days), nowhere even to store her clothes or laundry.
I am keen that we don’t misinterpret ‘pyjama paralysis’ in an acute ward setting. Person-centred care is getting to know a patient’s preferences and how they live; my mum’s care was approached according to normative expectations – the general rules and expectations of a group of people or society, in this case, inpatients in a hospital ward context. Patients who deviate from expected norms are sometimes identified as difficult. I suspect, sadly, that my mum was placed in this category.
On day 14, my mum was discharged. She phoned me, euphoric: “I’ve won”, she said: “They are going to discharge me in my pyjamas”.
Liz Lees-Deutsch is consultant nurse, acute medicine, Heartlands Hospital, Birmingham.
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