“We can bring you a couple of camp-beds in…”

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These were the words that, more than anything, made us realise that we are now really, actually, not-messing-around-this time, in the end stages of Mum’s life.

It’s  hard to credit now, as we sit and doze through the night around her bed, that in early August Mum was living independently, crosswording and quizzing, bragging relentlessly about her children (natch),  and dancing at her grand-daughter’s wedding.

Because now we’re strewn around her much-lived-in room on the stroke unit, exhausted after our various efforts – vigils and mad dashes. The room is a mess now: hastily packed rucksacks; a tray of hot water flasks, cups and teabags supplied by the staff; my brother on the camp bed and my sister dozing edgily in the reclining chair I’ve just vacated; extra blankets and pillows; biscuits and water bottles. Tissues.

It’s a mess, this dying business, a hard and knackering mess. And in this case it’s a long drawn-out one. Lots of medical issues, many complications, recurring infections, and oh, don’t mention the roller-coaster.

It’s been mostly a ‘good’ experience. The staff are kind and caring, and after four and a half  weeks on the stroke unit, mostly familiar. The nursing staff seem fond of Mum and are determinedly trying to keep her comfortable, clean, dignified.

But patient-centred care? Are we there yet? Not by a country mile. In Kate Granger’s own patch I was impressed when on the first emergency admission, a health care assistant said ‘Hello, my name is …’.  But it was more than two weeks later on her second admission before I heard it again, from an excellent neuro consultant. And I haven’t heard it in the last four weeks.

You can’t help asking all the time what this would have been like for her without the advocacy of her confident, assertive, family. I’m sure it would have been very different, even if the outcome ultimately wouldn’t have been.

We had to nag about the horrible and largely unexplained wound on her leg. Once the plastics people had declared it ‘not their area’, it wasn’t of concern. Actually, it was causing her huge distress, but in my darker moments I suspected that as long as it was out of sight and tidy, that was all that mattered.

After her ‘multiple strokes’ and ‘silent heart attack’ and with her busted lungs, there’s been little attempt to get her out of bed, save for a couple of hoisted episodes that she has slept through. Can you be too poorly for physio?

I’m not bitching about the clinical care. There’s been a lot of getting her temperature down and getting the oxygen up, and swabbing for infections, and lots of x-rays. But there hasn’t been much longer-term planning, or even wondering, about which aspects of this woman’s life might have been salvageable. At least not that has involved her or her family.

And I bet – I’ll bet you anything – that at the ward round, my clever, stylish, cryptic-crossword-solving, sociable, witty Mum is referred to as ‘an 82-year-old female smoker’.

Anyway. Here we are. And here she is. Another dawn under her belt.

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6 thoughts on ““We can bring you a couple of camp-beds in…”

  1. Incisive and insightful as ever Fi, hope it all ends peacefully for your mum, and hugs and sympathies to you in your sadness and loss. Cx

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  2. My heart goes out to you Fiona and your mum at this beyond difficult time. You’re right-this dying business is so hard and completely knackering and was for both my parents and me.

    My Dad had a stroke and my brother and me camped out at the hospital until he died. I’d say the provision of camp beds is an advance as I had to make do with a chair but did find the care for my dad considered his dignity and seemed clinically sound at the time.

    I think the truth is dying can be very messy, painful, unpredictable and traumatic for the individual and sometimes even more so for the family and friends who are left behind.

    So if you can please try and look after yourself too and although it’s totally inadequate know I’ll be thinking about you and if there’s any virtual power out there I’m sending it your way.

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  3. Beautifully written as I knew it would be.
    I so wish Mandy had felt able to share her experiences in this way.
    I wish your mum & all your family a time of love & tranquility. May God Bless you all ❤

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