Hello – is anybody out there?

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Almost too demoralised and depressed to blog (almost, but not quite, as you can see).

The situation at home is now pretty dire. Nobody seems able to help. I feel, as a GP, that I should be able to offer some clear guidance as to how we proceed but there are dead-ends and rabbit holes everywhere. One person says ‘Oh, you need a social services continuing healthcare funding assessor’ the other says, ‘You need a district nurse to do that,’ another says ‘Your mum’s not on the district nurse list, so computer says no.’

Mum falls out of her chair. She’s fallen six times in the past two weeks. The occupational therapists have given Dad a hoist to use – the hoist doesn’t reach the floor. It reaches six inches off the floor – if Dad is going to lift her into that he might as well lift her back into the chair. The neighbour is called – he helps Dad. If it’s late at night then Dad feels bad about calling the neighbour so he begins the arduous journey of inching Mum across the floor, out of the sitting room, across the hall and into the downstairs bedroom where the mechanical bed does at least descend to a point where he can roll Mum onto it.

The occupational therapists have now ordered a special cushion to slide under Mum that will inflate her up to hoist height – they need to show Dad how to use it – the care agency, still providing one hour a day paid for by Dad, have already said that they will not use it as it requires two people. Dad says if he had two people he wouldn’t need the bloody cushion. Dad’s training session is booked for a month’s time (what with Christmas and all) – will he be given the magic cushion then? Who knows. Will Mum have slipped and broken her hip by then?

We phone the GP surgery  – Dad is given an appointment – it’s an hour long face to face consultation with a nice girl who is in fact a social prescriber and can do very little other than signposting. As I have said in clinical meetings with my own commissioning group at work, signposting is only helpful if there are services out there to signpost patients to.  The social prescriber did however use up a good fifteen minutes of the appointment talking about her own experience of dementia; her father had Alzheimer’s apparently. They had a lot of difficulties. He’s dead now. Oh. Cheers for that then.

The social prescriber, in an attempt to have something definitive to show for her hour of chatting, books a home visit with the GP for today. I go to see Mum and Dad so I can be there when the GP arrives. Not to be the heavy mob but just to give a bit of context – just to say ‘we know how stretched services are, I work in these very services, but we’ve never ever asked for help before. Please take us seriously now that we are asking.’

We have lunch. Dad spoons soup into Mum who we’ve managed to navigate into a kitchen chair. We phone the surgery just to see when the doctor might be coming – they can’t say. I get that. No problem. But could they just tell us whether she’s left the building? No, not yet. We wait. The phone rings. Is the home visit urgent? Well no, not really. Mum’s not acutely unwell. Could they rebook it for two week’s time.

My dad is fed up of being badgered by me. I’m fed up of trying to defend the services that should be here to support us. The people working in those services are absolutely fed up of working like trojans for little reward and attempting to provide care on a wafer thin budget that has been mauled by years of austerity and that people seem to be in danger of voting into oblivion.

We have however, now reached crisis point. Mum is doubly incontinent, she cannot feed herself at all or drink unassisted, she can only tolerate semi-solid food and has no communication – as a result we are unable to assess her needs, her pain or discomfort. Her mobility is significantly restricted. She can mobilise a few steps from bed to chair but is incredibly unsteady and falls repeatedly.

All reservations about a nursing home are gone – I am happy to accept that this is now where we are – but how to find the £50K per annum that constitutes the cost of even a basic home place in our area? And will we need to fund that for the next twenty years? That would only take her to eighty-seven…

I emailed the GP today after the visit was cancelled – I know this isn’t really her problem. She has sick people coming into surgery – her clinic will be full, her home visits will need acute assessment. She will see at least forty people today and make over a hundred clinical decisions. I only hope that we can be one of them.

This is what I said:

“The situation is currently unsafe – mum is at risk of further falls, damage to pressure errors due to prolonged immobility as well as urine infections. She is unable to let us know if something is wrong. Dad is struggling to cope as sole carer. He has managed incredibly well for the past seven years but I have concerns about his mobility and risk if he continues to have to move Mum. I hope you can help.”

I feel like I’m sending a message in a bottle out across a very turbulent sea and watching it sink.

 

 

P.S. I am quite determined that this shall not be my last post of the decade – how depressing would that be? Will dredge up something festive in the next three weeks, fear not.

5 thoughts on “Hello – is anybody out there?

  1. Fingers crossed for you…I hope your mother gets, at least, an urgent respite place in a care home while a more permanent solution is identified and put in place. The nightmare risk of an emergency trip to hospital must currently be very high.

    Liked by 1 person

      1. I failed to mention before (and appreciate that these a drop in the ocean relative to care home costs) but have your parents applied for attendance allowance (£87.65 per week and not means tested) and a council tax exemption in respect of your mother – https://www.theguardian.com/money/2018/may/12/council-tax-rebates-for-mental-disability-still-going-unclaimed? With backdating, the council tax rebate was really valuable in my mother’s case.

        Like

  2. Keep up the good work both in producing this blog and looking after your Mum (and Dad, and yourself). You were looking forward to your Mum still being home at Christmas so concentrate on that. It won’t be the Christmas you planned but there will be some good things for you to remember. I found that it was much easier for children and friends to see past the dementia and to see the positives. I took comfort in what they said every though I couldn’t see it myself.

    [Note: all the above is easier said than done]

    On a technical note the magic cushion we had was a domestic version of the sort that ambulances carry. It was designed for single person operation and training was 15 minutes with the OT nurse who brought it. It was one of the most useful pieces of equipment we had.

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