For a start, the Royal Free’s obsession with ‘medically fit for discharge’ does not seem to include whether my mum’s intake of food and drink had fallen off a cliff. She was incoherently rambling, and looked as if she was sedated and half-asleep. This is typical hypoactive delirium, and made my mum’s discharge to assess last week unsurprisingly a complete nightmare for me, her full time carer with whom she lives.
It seems totally unimportant to the therapists on this ward at the Royal Free that she has lucid intervals when she can interact with people. Instead, the therapists are uniquely focused on their task-centered care, performing tasks at their time and convenience, irrespective of which persons are awake or which family is around. As a proponent of person-centred care, I find this totally objectionable, as we now enter two whole weeks of mum deconditioning in bed. For all the attention to ‘end PJ paralysis’, I doubt thanks to the inattention of the therapists at the Royal Free, mum will ever gain her independence again. Her food and drink intake, despite palliation needs, had fallen off a cliff, due to the delirium. She was totally ambulant before. The label of ‘dementia’ rather than opening doors has sent her instead hurtling down a route of ‘terminal’ and ‘end of life’, when she was to all intents and purposes ‘living well’ in the community.
My mum is very light-weight, and is very frail. The diagnosis of dementia, with all drugs crossed of including her cognitive enhancers, never mind rebound of an anticholinergic delirium, has become like a noose round her neck, with the frailty completely ignored. Twice I have had to request the medical team to cross off benzodiazepines, midazolam and lorazepam, off the drug chart, which most people accept can be deliriumogenic. The ward has often been very noisy at night, making it unsurprising many patients are so sleepy during the way, whether or not they have been written up for sedating drugs without any discussion with patient or family. The nurses on the ward, however, are truly outstanding.
Some healthcare assistants are very good. Some overreach themselves with banal phrases such as ‘the blood pressure is PERFECT’ and deliberating facing the electronic blood pressure monitor so that the reading is out of sight. The culture is positively antagonistic, with some threatening to ‘report you for being abusive’, if a cleaner sweeps under your feet while you’re sitting at a chair without any warning, or if you wish to connect Mum on Skype with Kate Swaffer in Australia as a bit of reminiscence. Incidentally, the same healthcare assistant who reported me for that Skype was later sat in the corner with her headphones on chatting on her mobile phone, while patients were calling, and also was feeding my mum at high velocity even when she had not cleared the current mouthful.
I had no choice but to seek my mum to get mum admitted, for dehydration and her falling oxygen saturations, even though the admission itself worsened delirium. There is no attempt to reorient mum in a normal sleep-day cycle, and the regular ‘observations’ have the opposite of a calming effect. The precise diagnosis for mum is a mixed delirium, as she can be agitated. I would never dare to inflict my diagnosis or management on mum, given the code of conduct for registered medical professionals. There seems culturally a reluctance to negotiate with the clear diagnosis of delirium, or a discussion of how function may be recoverable, as the underlying pneumonia is ‘cured’ (or more like delirium does not get coded properly as a diagnosis). There seems to be little appreciation that delirium is worth spotting, and is a significant serious risk itself. When you consider that nobody introduces themselves or what they do, apart from a significant outstanding minority, you have to acknowledge there are good reasons for patients being so confused.
I’ve been really appalled with the ‘acute deterioration of dementia’ being such a prevalent attitude, and no willingness to embrace mum’s function prior to the admission. That is entirely in keeping for the reluctance of everyone to know what mum’s function was like prior to admission. It says on mum’s board that she likes word searches. I can say hand on heart that she has never done a word search in her life.
And whilst medically ‘fit’, she now can’t walk – and that’s new from this admission.