Miley’s got the place on lockdown – advice for those caring for people with dementia during a pandemic

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One of the great things about any globally significant event is the Cockney Rhyming Slang nomenclature – currently the best (and only official) term for Coronavirus is ‘Miley Cyrus.’ As in, ‘Pass us the hand gel. I think I’ve got a touch of the Miley Cyrus.

I felt it was important that you all knew this.

I know, I know. COVID-19 – yawn, it’s a bit niche and not very topical or relevant or anything but the whole situation throws up all manner of interesting questions. Not least:

  1. Why do people feel the need to stockpile toilet rolls by the van load whilst ignoring vitamin pills?
  2. Why are there people walking around with actual plastic bags on their heads?
  3. Why is everyone at the Cheltenham Races today?
  4. Why has Donald Trump banned travel from every European country other than those he has resorts in?
  5. Why did it seemingly take Tom Hanks testing positive for anyone in America to take it seriously? And did someone in Public Health actually pay him a lot of money to post it on Insta in order to raise the profile?
  6. Why is Donald Trump refusing to be tested for Coronavirus, despite having had close contact with Brazilian President Bolsonaro in the past few days?
  7. Why is the UK advice currently that old people should avoid going on cruises but that basically everyone else can carry on as normal, nothing to see here, move along please, la la la, not listening?
  8. Why do the UK government feel that British citizens are likely to get bored of self isolation if we do it too quickly, whereas the rest of the world are more than capable of behaving responsibly for a few weeks? Do they think that after a modest amount of restriction we would run screaming from our houses spraying our neighbours with germs and smearing bodily fluids on lamp-posts and railings whilst our European chums would be able to stick it out with pluck and determination? Surely we Brits with our famed Dunkirk Spirit (the very spirit that got us through The Blitz and was supposed to get us through a No Deal Brexit, don’t you know) surely, we are the epitome of stoic restraint. Listen to any Boomer and they’ll be quick to tell you exactly how little regard they have for this disease; ‘Lot of fuss about nothing,’ ‘Silly little snowflakes running around making a fuss and being patronising,’ ‘If that coronavirus crosses my path I’ll simply have a stern word with it and send it packing, what’ (it’ll be interesting to see how this attitude manifests when the ITU beds start to run out). But is it possible that our government have absolutely no faith in our ability to behave? Do they believe that we will revert to feral beasts of the field when faced with the prospect of another week stuck indoors with the children? We are British FFS – we spend months stuck indoors with the children when the weather is either too wet, too wet and windy, too wet and cold, too wet and a bit slippery, or too hot and nobody knows where the hats are or remembered to stockpile sun-screen. If we knew that staying indoors would definitely save the lives of countless little old ladies, I think we’d manage to force ourselves.
  9. Why is it that, despite the niggling doubt that we are tackling this situation ENTIRELY DIFFERENTLY to the rest of the world, and that this approach might be a bit misguided, it is still possible to be completely reassured by the wonderful Chief Medical Officer Professor Chris Whitty, who could literally tell me that the best way to protect myself was to jump out of a tall building covered in marzipan and I’d believe him? The man is scientific pragmatism personified and if his gamble pays off he should become King of the actual world, no question.
  10. Why is it that everyone is now a virologist, epidemiologist and public health specialist rolled into one? Especially on Facebook but also on Twitter. (Full disclosure – I have fallen into this trap. I may have actually tweeted, ‘As a doctor, I think…‘ which honestly, is mortifying and unforgivable. I did the same during the Brexit debate and swore I’d never use the phrase again).
  11. Considering all of the above – how does one proceed to care for loved ones in the face of a pandemic – particularly when those loved ones don’t understand what is happening and also when, you know, we haven’t, like, done a pandemic before? After all, dementia’s already pretty shit but dementia and a pandemic? I mean, really?

There are heartbreaking stories on the news about ‘cocooned care homes’ (sounds cosy, non?) where family members can’t go in to visit their loved ones with dementia. Where Coronavirus whips through a nursing home and all a resident’s family can do is tap on the window and wave goodbye, if they’re lucky. Where care home staff are having to make horrible decisions about what is best for everyone (and let’s face it, there will be some pretty horrific decisions for most of us working in the health and social care sectors to make in the coming weeks – just saying). We, in our little dementia microcosm have narrowly avoided this scenario with Mum – not least because there was no bloody funding for her to be in a home – and so we appear to have inadvertently swerved that bullet. It’s a funny old world.

But the situation we have remains an odd one:

Woman aged 69 years with severe advanced dementia.

Carers attending from two different private agencies twice daily for short period.

Primary carer is 67 year old fit and healthy man (husband) who

a) needs to get out of the house for his own sanity and

b) really does need to get out of the house for his own sanity.

Eldest daughter is GP married to hospital doctor, therefore high risk of imminent or current infection (currently asymptomatic).

Youngest daughter is married to a regular commuter and mother to two school-age children (therefore moderate risk of infection).

Both daughters worried about:

  1. Mum getting infection.
  2. Dad getting infection.
  3. Mum and Dad getting infection at same time.
  4. Mum or Dad becoming unwell with something other than COVID-19 and being unable to access basic healthcare due to implosion of hospital and primary care facilities.
  5. Carers stopping visits due to risk of infection.
  6. Dad losing the will to live due to self isolation.
  7. Infection entering house via own children or selves and therefore being consumed with guilt for the rest of our lives.

 

How to proceed?

 

Answers on a hermetically sealed and sterilised postcard please.

 

 

 

6 thoughts on “Miley’s got the place on lockdown – advice for those caring for people with dementia during a pandemic

  1. So sympathetic to your predicament. Both my parents had dementia, but Dad died in October 2018 and Mum (with great timing) in October 2019. Dad was in a care home at the time of his death and Mum moved to one a day before she died. It may sound awful, but many times of late I have found myself thinking ‘Thank God they are out of all of this’, as I would have had the same worries as you, especially when Mum was still at home, with a live-in carer and visiting carers covering that carer’s breaks. I hope you all get through OK, with sanity intact all round.

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  2. We are in the care home scenario. Last week, the care home restricted visiting hours and numbers for families and this morning we have received an email permitting only essential visits (i.e. those “absolutely necessary for the health and wellbeing of your relative”), limited to one at a time, one per day, restricted hours, extensive questionnaire, temperature check, no pets and no-one of 16 or under. I get what I believe to be an entirely appropriate message – please don’t come.

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    1. God, it is so hard isn’t it? I suppose at least you know they’re safe and well looked after – if it was mum I’m sure she would barely notice whether she saw us or not which would be a blessing of sorts – but I appreciate it must be much harder for some who would find the change distressing. Sending lots of love to everyone in this situation

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      1. Mum is also in the “barely notice” category. There is a little section at the end of one of the attachments to the communication asking for volunteers to make refreshments etc, so I will probably do this. The staff are going to need all the support they can get.

        Liked by 1 person

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