normal on critical

The house has no number, just a name in big white letters above the electric gates that’s either a composite of the people who live there or a tribute to a Klingon commander. I want to ask Ella where it comes from, but she’s so stressed there’s no opportunity. She’s waiting for me outside, still in her slippers, arms folded, glancing up and down the street whilst I lock up the car.
‘Hi Ella. I’m Jim, from the hospital,’ I say walking over.
‘I gathered that.’
‘Are you okay?’
‘No. Not really. Mum’s going downhill and no-one seems to care. Not the doctor, the hospital, no-one. She came to stay with us a couple of weeks ago for respite, and ever since then she’s been wasting away. She’s not eating, she’s not drinking. Crying out with pain all hours of the day and night. Honestly, Jim, I’m at the end of my tether. I just don’t know what to do anymore. I just can’t cope.’
‘I’m sorry to hear that.’
‘She had an appointment at the Elderly Patient Clinic tomorrow but she’s just too unwell. I mean – how was I supposed to get her there?’
‘Well – there’s patient transport. They have a tail-lift on the back of the vehicle. They can take her in a wheelchair.’
‘Can they? No-one told me that. I’d better go and see if they’ll reinstate the appointment…’
She turns and hurries inside, and I follow.
‘Mum’s through there,’ she says. ‘Go and introduce yourself whilst I call the hospital.’

It’s a large, comfortable family house, racks of shoes in the hallway, richly patterned rugs on the floor. Ella’s mum Deidre has her own room, off to the left at the end of the hall. She’s lying in an electric bed with the back raised, propped up on half a dozen pillows and cushions, a warm zebra-striped fleece thrown over the rumpled sheets. When I shake her hand she squeezes it warmly and then resumes her original position, something like wistful forbearance, staring out of the french windows into the garden.
I start by explaining who I am, what my job is and why I’ve been asked to come. She nods, and twiddles her fingers, as if yes, this was exactly as she’d been expecting. I work through my usual questions to see how she is, and to clarify the problem; she answers as if there’s nothing the matter at all, or at least, nothing beyond what you’d expect of a woman of her age. She’s even a little bewildered to hear that people are worried about her.
I check her observations. Everything’s normal, unremarkable. I ask her about her eating and drinking, her bowel habits and so on. Again, she seems fine. She looks fine, too, a healthy colour to her cheeks, decent weight and so on. It’s difficult to see the dangerously ill patient that Ella described, even allowing for the possibility that Deidre is confused about everything. And she certainly doesn’t seem confused.
Ella comes back into the room.
‘They never answer the phone,’ she says. ‘So I left a few messages.’
‘A few?’
‘I kept thinking of other things I wanted to say. How is she?’
‘Well – she seems fine, actually. Sorry to talk about you like this, Deidre.’
‘That’s okay,’ she says, staring out of the window.
‘I’m not surprised,’ says Ella. ‘No-one can ever find anything wrong. They always say the same thing. They always say she’s fitter than they are. But they don’t have to live with her. Sorry mum, but it’s true. They don’t see you when you’re crying out in the middle of the night. The doctor’s bloody useless, excuse my French. The last time he saw her – which is a joke for a start, because he may as well have stood outside with a megaphone – the last time, he just upped her citalopram. But it’s not working and we can’t go on like this.’
‘You said Deidre wasn’t eating or drinking.’
‘Hardly anything. She just picks at her food. And I make all her favourites. I have to nag and nag to get her to eat.’
‘What about drinking? Because that’s more important.’
‘Again, nag, nag, nag. And I hate to do it, because she’s my mum, and I don’t want to go on at her like that. But someone’s got to. The carers don’t.’
‘She has carers?’
‘Three times a day. And all they do is put things in front of her, and clear them away again. That’s no good, is it?’
‘So how much would you say she is managing to drink?’
‘Cups of tea, beakers of juice, fortifying drinks. Everything with a straw, though.’
‘So that sounds – quite good, then.’
‘It may sound good to you but it’s not enough, is it? I mean – look at her…’
And I do, and from her throne of pillows and cushions, she looks comfortably back at me, too.

Deidre hasn’t had any bloods for the past two weeks so I run a set, just to be sure. I put them in as urgent. They come back normal. I ring Ella to let her know, and she tells me that – miracle of miracles – the Elderly Patient clinic has managed to reinstate the appointment.
‘Maybe they’ll find something wrong,’ she says. ‘I mean – something has to happen. Otherwise she’ll die and it’ll be too late.’

4 thoughts on “normal on critical

    1. It was a difficult one, tpals – and I was glad the patient was going in for more tests, to make sure there was nothing else going on that hadn’t showed up so far. The thing that was palpable though was the daughter’s stress levels. I don’t doubt she was struggling to cope, and whatever the reason needed help, which is fair enough. It can be really difficult dealing with close relatives who are sick or incapacitated – and quite a shock if that’s not how you’re used to seeing them. Ageing is a tricky business sometimes!

      Thanks for the comment Tpals. Hope all’s good with you.

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  1. This one hit home for me. It was what I heard for days before Mom actually showed all c-diff signs. I took care of her for the next 5 years until she was too tired of the cycle (uti, antibiotics, c-diff, more antibiotics, etc.) She spent nearly 10 months of 2013 in the hospital, back and forth and became a “frequent flyer” on the ambulances. The doctors said asinine things each time I told them it was coming and they told me (once in a room full of doctors including infectious disease specialists) yet AGAIN that there was no reason for them to keep her as she was fine and she didn’t have c-diff. Sometimes she’d make it home before it would explode (I’m sure you know what I mean), sometimes it happened before they finished checking her out. Most difficult years of my life.

    I’m not saying there’s something wrong with this woman as she is at least drinking, I’m just saying I understand her daughter. I can see myself telling (yelling) that this was NOT MY MOTHER and that she’s different than normal. They always said she was fine; they were always wrong in our case.

    Peace

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    1. I’m so sorry to hear you & your mum had such a horrible time there, Patti. I hope things have levelled out since.

      I think the medical profession can definitely be a little blinkered, sometimes. The medics do bear the ‘differential diagnosis’ in mind, but it’s often along ‘zebra’ lines (that old trope: if you hear hoofbeats, think horses not zebras…). But I think sometimes there’s a tendency to settle for the ‘convenient’ diagnosis that seems to fit most of the evidence – whilst failing in the single most important area: the condition of the patient! And pressure of work & resources will sometimes result in a tendency to write-off the patient’s experience if it means that treatment & investigations will be prolonged. (Medicine would be so neat & perfect if it wasn’t for the damned patients…).

      So in the scenario I wrote about I totally sympathise with the daughter, even though I couldn’t see what was wrong, and it was tempting to dismiss the whole thing as psycho-social rather than medical. Each case is entirely individual, and you should always fight for the specifics. It’s a lesson I have to re-learn again and again.

      Thanks for the comment, Patti. I really appreciate your openness & willingness to share. Hope all’s good with you & your family today.
      Lots of love
      Jim

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