Reasons to be Cheerful – One, Two, Three.

 

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When I went round to visit Mum a few weeks ago, back in the days when moving freely between houses was allowed, and even actively encouraged, I asked Dad how she was doing. The television in the corner continued to blare out stories of escalating deaths in Italy and the sense of national panic (still tinged with apathy) that was building here, but Mum was sat tucked in her recline-and-raise armchair, a blanket on her lap and a smile of contentment on her face.

“She’s probably the happiest person in the country right now,” said Dad. And indeed, it appeared t’were so. Mum’s expression was the standard issue ‘vague and carefree’ that has become her daily norm unless, heaven forbid, someone tries to file her nails. She does not understand what is happening and this lack of understanding, instead of making her anxious (as it does with many people living with dementia) actually makes her completely fearless.

I saw her for the last time (not the last time, hopefully, but just the final visit before lock-down) when my sister and I went home last weekend to sit on garden chairs placed two metres apart and drink from our own thermos flasks of tea. We were a model of infection control – Dad left the gate open so we could walk through without touching a single surface, he placed magazines on the chairs so that we could avoid contact between buttock-covering fabric and seat (magazines removed and dropped into the wheelie bin by us when we departed). We sat in the fresh air and shouted our fears across the lawn to each other and Mum sat in the conservatory separated from her family by the double-glazing but still able to see us and hear our conversation filter through the open window. It was similar to how I imagine the Queen conducts her state visits; sat behind bullet proof glass as the attendant crowds wave their flags, or perhaps like that bit in Silence of the Lambs when Hannibal Lecter speaks to Clarice from his see-through cell, just less grim, obviously.

As we spoke, we knew that this would likely be the the last time we’d physically see each other for many weeks – talk was of imminent lock-down and we have since been proved right. Our mood was a curious mixture of panic and stoicism. The need to reach out and touch someone for reassurance, or put your arms around one another, is never more pressing that when you have been expressly forbidden to do so. We were all anxious in our own ways. My Dad and sister were concerned for me, having seen the slightly disturbing reports of increasing death rates amongst healthcare workers, particularly medics. I, admittedly, was a bit anxious about myself, my husband, my colleagues. But my sister and I were also both worried about my Dad; concerned for his health and his sanity. And then there was an underlying fear for all of us, about society; how we’re going to cope as a nation, how the people who have lost their jobs and livelihoods are going to manage, where the people who only weeks ago were washed out of their homes as rivers burst their banks in the most recent biblical purge (we’ve had flood, we’re doing plague so presumably it’s only a matter of time before famine and war) are going to live. How do you self isolate if you’ve lost your home?

And while we were mulling this over, keeping a brave face on things, laughing about the fact that I couldn’t go indoors to use the loo and so had to relieve myself on the compost heap instead (sheltered from view obviously – self distancing taken to extremes). While we’re dealing with all this shit going around in our heads, Mum is sat looking at the clouds, feeling the sun on her face and registering no trace of alarm or crushing fear of her own impending doom. The word coronavirus means nothing. The word pandemic means nothing. Words mean nothing. Her happiness and comfort is entirely dependent on her immediate surroundings. The outside world has no relevance. She has no fear for me, her daughter, working ‘on the front line’ (accompanied by dramatic music) and she has no concern for my father and how he is going to cope. These things don’t register. Therefore, number one on my list of reasons to be cheerful is:

  • Being related to someone who doesn’t know what Coronavirus is – Someone who isn’t worried about catching it, spreading it, dying from it or living in fear of it. How bloody amazing must that be?

Number two on my list is linked to number one:

  • Having a parent who will not present challenging end of life treatment decisions if COVID-19 does take a hold. Whilst we are obviously hoping that Mum escapes the virus, or that if she does contract it that hers is a mild snuffly version, we need to consider the possibility that she might get it and become very unwell, the kind of unwell where other people might talk of ITU and ventilators. This will be a scenario facing thousands of families up and down the country who may be considering these issues for the very first time. Not us. Mum has her DNACPR form. We have sorted out Power of Attorney for health – did it years ago. She has an Advance Care Plan of sorts. We’ve already wrestled with the angst of quality of life versus general frailty. We’ve had those difficult conversations – we are EXPERTS in this field. Not for us the rushed and awkward ‘would your mother have wanted to be resuscitated’ chat. Not for us the wrangling with guilt and expectation and denial. We are done with that. Appropriate decision making at the end of life? – it’s so 2017.

 

The remainder of my reasons to be cheerful do not relate to me, at least not directly. They are not novel or unique. They fall mainly into the territory of ‘general observations that have occurred to the majority of the world’s population during this time of global crisis.’ i.e. it’s just more of the same generic stuff you’ll find all over social media – no revolutionary thinking. Anyway – lets not oversell it…

  • Key workers – a celebration. Only weeks ago, cleaners, care-home staff, sewerage and sanitation workers, supermarket shelf-fillers, delivery drivers and hospital orderlies were being described as unskilled and ‘not really the type of person one would with to be associated with, dear‘ (see Care Workers – who cares? ). The disdainful right wing press (under the auspices of the disdainful right wing government) was full of chat about how these underlings would not be allowed to enter the hallowed portals of UK-PLC in the future. How the post-Brexit sunlit uplands and ivory towers would be shutting their doors to this type of riff-raff. Well, aha ha ha ha ha ha ha ha (falls off chair laughing) you bigoted fools! Whadya think of those unskilled workers now? I think you’ll find these people are da da dah… KEY-WORKERS and WE NEED THEM. Who knew?
  • The NHS – Yada yada – I know it’s not supposed to be about me but I do work for this hallowed institution and I know how good it is. The NHS rose from the ashes of war as a uniquely positive attempt to protect our weak and vulnerable. It has taken an absolute pasting in the past ten years, resources have been cut to the bone, demand has gone through the roof and any other analogy you could care to mention has occurred. But it keeps going. It picks itself up, it rallies and it will be there in our hour of need. Other countries do not have an NHS. They do not have an organisation that is used to coping on a shoestring budget, one that runs almost exclusively on goodwill, camaraderie and a sense of duty. Nowhere else has a health service that reaches its arms across the nation and scoops up every single person, irrespective of social class, wealth or race, in a ginormous cuddle of care. For free. And what other organisation could mobilise long-retired employees, calling them back to the fold, or conjure up 400,000 new volunteers? Once this is over please let’s not forget our good fortune.  I mean really. Please. FFS.
  • The BBC – See above re public institutions that have been brought to their knees by slashed budgets and scapegoating, only for us to suddenly realise at the eleventh hour that, to be honest, it’s pretty handy to have them and, hmm, actually not bad value for money at all. In these dark days it’s vital to have a public service broadcaster bringing us news, music, chat and Mallory Towers.
  • Community projects – Whether it’s neighbours in the same block of flats dropping a note round to say hello to the man at number six that they’ve never spoken to before, or entire districts mobilising teams of volunteers to deliver shopping to those in self-isolation, great swathes of our nation are suddenly realising that we actually quite like each other, and, you know, we don’t really want people to die alone or run out of tinned tomatoes. Although we wouldn’t in normal circumstances dream of spontaneous sociability, a national crisis brings out our nurturing, humanitarian and gregarious selves.  No man is an island. Most of us care about each other and most of us need something to do. As an aside, a neighbouring village (beginning with A – lets call it Avonlea for the sake of anonymity and just to crowbar an Anne of Green Gables reference in) has recently set up a community group called Avonlea Needs Us – handily abbreviated to ANUS. That tells you all you need to know. Light can be found in the darkest places.
  • Health – There’s nothing like being told you can’t go out and exercise more than once a day to make you really want to get out of your house and exercise. There’s nothing like home schooling small children to make you appreciate the joyful exuberance of Mr Joe Wicks as you high-kick your way around the sitting room. Is it possible that by being confined to our homes we might actually become less sedentary? Seems odd but you never know. We also aren’t eating out or larding up on takeaways, we’re not having casual sex with strangers, falling accidentally pregnant and contracting STDs or meeting up at raves to take cast quantities of illegal drugs (at least not in my household – not sure what’s going on at a government level). We are having to cook our own food and clean our own houses and spend quality time with our spouses and children. Our mental health may be taking a hammering from the relentless anxiety but we have been dragged kicking and screaming into mindfulness; appreciating the simple things in life like flowers and birdsong and playing Cluedo (not really, I hate Cluedo).
  • The environment – Whilst the decimation of the airline industry is not ‘a positive’ as such, the reduction in air pollution attributed to fewer flights is at least giving our planet a moment to breathe (somewhat ironic given that the extreme end of COVID symptoms results in respiratory failure). The water in Venice’s canals is clear and repopulating with fish (the dolphins were fake news), the clouds of pollution above industrial cities have dissipated as we pause in our relentless manufacture of stuff. And I know this is dreadful for the economy. I know there are people out of work and that we one day will need to start up the cogs again, to erect buildings, make cars and travel to Vegas to watch boxing matches, but to press pause for a few months is like a smoker halting their habitual forty a day – even if it’s temporary it reduces the damage and might just make us think a bit about how we return to the new normal.
  • Kindness – Those who work in the public sector know all about seeing the best and the worst of people. Crisis brings out extremes and there will always be the profiteers, the scammers and the complete bastards. But for every despicable individual stealing stuff out of the food bank, for every conniving shit sending families on free school meals a WhatsApp message asking for their account number in order to ‘reimburse’ them, there’s a person wondering what they can do to help. People are smiling and shouting hello to each other (from a safe distance), putting up rainbow pictures in their windows, singing in Italian chorus, phoning friends they haven’t spoke to for years, thinking of others. The trolls, the bigots and the haters remain and COVID-19 has no ethical code, the baddies are unlikely to all be wiped out leaving only the goodies standing, but they might at least be given cause to re-evaluate their priorities and maybe we’ll emerge as a kinder, more appreciative society.

 

So. Stay at home. Stay Safe. Be kind. Look after each other (remotely).

It will be ok.

Trust me. I’m a doctor.

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.

 

 

 

Care Workers – who cares?

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Today the government have announced a crack down on low-skilled migrants entering the country with their pesky work ethic and helping to look after our sick and vulnerable. To insist that people arriving in the UK have an income of above £25K automatically rejects care workers, farm labourers, refuse and sanitation workers and many of those in the hospitality industry and education sector who are well below this threshold. It also is a bit of a stretch for physios, nurses, paramedics, midwives and occupational therapists who have a starting salary of £24.2K. So, generally, I, like many, have a few issues with the policy. But let’s not get started on that. Let’s look at what it means to be classed as unskilled and told you’re not required when you actually do one of the most important jobs in society – caring.

Mum hasn’t had many carers. She has Dad. But, as regular followers of the blog will know, my sister and I have had to fight tooth and nail to make our father understand that he needs time out now and again and thus, some outside help has been sought. Initially we had  The Lovely Alison She worked for a company who mainly catered to the entertainment and socialisation needs of people living with dementia. Alison is an actress, a good one, I’ve seen her on the actual telly. She also teaches drama to groups of kids and is an all round good egg. But the most good-eggish thing that Alison does is dedicate part of her time to looking after people with Alzheimer’s. For this she is paid about the same as a waitress. That’s probably a reasonable comparison; service industry, client facing, minimal paper qualifications but a significant amount of common sense and thinking on your feet required. So far so good.

But then we come to the next step (AA – After Alison), now that Alison’s skills are no longer so relevant to this phase of Mum’s dementia; this phase is personal care. People who help others get up, washed, dressed, fed and watered. For this we use a different agency and we have become accustomed to a new set of people with different skills. These carers are actually putting themselves at risk by doing their job. They risk their own backs by manual handling and lifting, they risk their own safety coming into the homes of those who may be distressed and therefore aggressive in their confusion, and they risk transmission of infectious disease, dealing as they do with bodily fluids on a regular basis. They do all this with a smile on their faces and a cheery disposition that would lead you to believe they are paid handsomely for the privilege. But these carers are paid less that Alison. They are paid less that most people. The average salary for a care worker is around £8 per hour with a total annual salary of around £17K, far below our glorious leader’s idea of a suitable wage to justify admission to the country.

For that £8 a carer will attend to every basic need; the fundamentals of what it is to live in a civilised society. Those who are hungry are fed, those who are soiled can be cleansed, those who are immobile can be moved. These are not insubstantial things. These are often Herculean tasks. Ensuring adequate nutrition and hydration in someone too frail to get a spoon to their lips or too confused to understand hunger and thirst is not easy. Moving someone heavy and unwieldy or perhaps too weak to co-ordinate their limbs is hard, and especially difficult to do safely. Cleaning up when someone has not made it to the bathroom in time, ensuring that all those intimate body crevices are kept clean and dry. Maintaining someone’s dignity and pride throughout this process…. Who would do that on a regular basis? For a stranger?

Why do we undervalue carers so much? Is it perceived as women’s work or the kind of thing that the serving classes would have undertaken in a bygone era? Are we still judging careers and place in society based on values from a time before female emancipation, a time of indentured servitude and slavery? I really don’t understand it.

We need carers. We will all face a time in our lives when we need help maintaining our own bodies or those of loved ones. No man is an island and I for one would prefer it if this Island could at least pretend to be appreciative of those who travel here to undertake the work that we good old Brits won’t do ourselves. But if we’re not going to let people in to do our caring for us then we are going to be faced with a massive challenge. The state will have to pay the natives a hell of a lot more than current market rate to get the work done.

Maybe, indirectly, this is the way to raise the profile of caring as a profession. When UK citizens have to do the work themselves maybe they will feel more able to demand appropriate remuneration. Maybe that’s the silver lining.

Bloody hope so.

 

Last Christmas (not the Wham! one)

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Determined as I am to finish the decade with a positive spin, here comes the festive blog! It will be joyful and packed full of angels, egg-nog and flashing reindeer antlers that look better suited to a hen-party (it won’t).

Christmas Eve

T’was the day before Christmas and one of my patients, usually a man of few words (most of them surly) brought me a box of chocolates and a card to say thank you for various bits and bobs I’ve done over the past year. Chocs have been placed on a high shelf at home away from scavenging hordes of children already razzed up on X-box, mince pies and fizzy drinks. The card is in pride of place on my surgery windowsill – it’s hard to overestimate the loveliness of receiving gifts / cards / kind words from patients.

For balance I also read an online article from one of the more hideous tabloids about how lazy GPs are refusing to work despite enormous pay incentives – I suspect we’re being lined up as the fall-guys for some nasty legislation in the new year – here’s hoping!

Lots of prescriptions for antidepressants were offset by festive cheer from patients and reception staff – everyone wishing each other Happy Christmas despite ailments and no traffic on the road for the journey to work before the sun rose = result!

Message from friend, whose husband was sent out to buy Christmas gifts and who came back with no presents for his daughters but a lego set for himself, provided festive merriment (photo of him with his lego, which she has captioned “Twat” ).

Home in time to watch Elf with the kids and get to Christingle service. Completely battered by 10pm but had to wait up to allow the man in red to perform his duties (not a euphemism).

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Christmas Day 

We headed over to Mum and Dad’s after church to find brother-in-law already elbow deep in turkey and beef – both of which had their own app on his phone to alert him to temperature changes whilst cooking. Mum was sat in her chair and looked on in benign bemusement as the kids tore about the house with their cousins. She’d been visited by the Christmas fairy (Beatta, one of the favourites from the care agency) who had dressed her in a festive red jumper and put a bit of make-up on. Dad had been musing over whether to get anyone from the agency in on Christmas Day but when he told me that Beatta was working and that for her, Christmas Eve was more of a priority in terms of holiday, it seemed sensible to nudge the, ‘Oh, don’t worry, I’ll be able to manage fine on my own‘ into a, ‘Well, if Beatta’s going to be working anyway perhaps I’ll book her.’

The initial resistance was two-fold; firstly there is a natural inclination to not want to make someone work over Christmas. Stories of staff being called into warehouses at 4 am on Boxing day and Amazon delivery drivers knocking on your door just after Christmas dinner with a parcel that really could have waited, make some people uneasy. It feels like an abuse of power to insist that on a national day of rest, some poor sod has to schlep over to Mum and Dad’s to get a not-so-old lady out of bed. In addition there is Dad’s default ‘I can probably manage’ attitude, which, as we’ve already established in previous blog posts, has caused some issues. A gradual chipping away is the best approach and on a drive down to Somerset last week I managed to push the idea of an hour of care on Christmas Day as well as a more regular fixture of having someone in to help in the evenings going forward (he was a captive audience whilst driving back from a funeral so I thought I’d really go for it).

I pointed out that if we are looking more closely at residential care we should probably move towards it by gradually increasing the care at home. Dad admits that the new flash point is bed-time, specifically pre-bed-time toileting is turning into a bit of a battle. When I suggested that this could be addressed by paying a professional to do it on a regular basis, just like we do with the morning routine, he agreed it made sense. Whether he books the extra care remains to be seen, but I took Beatta’s appearance on Christmas morning to be an indication that at least some of the advice is getting through.

It is interesting though, the reluctance to employ someone to provide care; it’s not about the money but it is about the idea of payment – as if Dad feels guilty for outsourcing responsibility. If Mum needed medical or nursing care and this was freely provided, he wouldn’t think twice about whether he was somehow shirking his duties. But why should it be that he feels squeamish about paying someone to bathe, groom and toilet his wife? We pay people to do all sorts of things that we could do ourselves (clean the house, mow the lawn, cut our hair, walk the dog) but personal care of a loved one is not so easy to monetise – turning it into a commodity feels awkward. I imagine it is similar for some people when considering childcare – do you outsource or don’t you? Are you paying for someone to look after your baby because your own job makes it financially worthwhile to do so or is it a negligible decision in terms of finance and more about the sanity of a few hours away, the cost of an escape from the unreasonable demands of a nine-month old? And why should it matter anyway? It should be the same as any other transaction but decisions around care come with all sorts of emotional baggage and guilt.

Anyhoo, back to Christmas Day… In short it was an enormous success. Four adults taking on culinary duties in an unfamiliar kitchen worked as well as could be expected, no injuries or burns were sustained, no plates thrown, no tempers lost (until we got to the after-dinner game of Linkee when my son’s competitive nature slightly overshadowed the ‘fun’ aspects of a board game) and we all ate and drank far too much.

Fifteen of us sat down to an epic dinner that pretty much lasted all afternoon, interspersed with present-opening and copious amounts of booze. Dad got stuck down at the children’s end of the table with Mum during the starter but my sister spotted the problem and we all had a swap-around – I was able to help Mum with her main course while Dad sat and chatted with the more grown-up contingent of the table (although he probably didn’t mind either way).

Memories of Mum in her previous incarnation of ‘dinner party hostess and holder of elegant soirees’ were in abundance. The dining room is enormous, converted from the original garage and testament to her great love of big gatherings. Equally the kitchen cupboards were a treasure trove of expensive appliances all designed to help create exotic and interesting dishes. My parents’ house has enough cutlery and crockery to serve fifteen people a starter, main and pudding without needing to trouble the dishwasher which is certainly not a feat that my own kitchen could muster. My sister and I kept stumbling across platters, decanters, retro tableware, blenders, food processors, steamers and crème brulee blow torches… it was like a nineties Heston Blumenthal had set up shop in there.

Mum really enjoyed her food, the transfers from sitting room to dining room were wobbly but manageable, the grandchildren opened her presents, held them up for her to see and put them away again once it was established that no response was forthcoming. There were animated episodes but no obvious trigger for any of them; baby Hugo was gorgeous; smiling and cooing in the way of six month olds but Mum was no more smitten with him than she was with the raspberries for pudding. There were a few words (mainly ‘yes’ in response to no actual question being posed) and some smiles and laughter but these appeared to have no bearing or relevance to what was going on around her. I like to think that perhaps the general happy bustle of the day was filtering into her subconscious and making its presence felt in a delayed fashion, so although we lost the direct correlation between cause and effect, i.e. baby smiles and immediately mum responds with pleasure, instead we had baby smiles, children laugh, food tastes nice, and eventually a memory of all these things converge into a feeling of well-being. Which is just as good, really.

This is likely to be the last Christmas with Mum in this house. I can’t see how it would be possible to limp on in this fashion for another year but there are many times when I’ve been proved wrong with her dementia and she may just pull a Lazarus out of the bag. Dad admitted that bank holidays are the hardest, when the weekly routine goes out of the window and enforced leisure time is thrust upon you, despite the reality that for a carer, there is no leisure time. Hopefully, for him and me and my sister and all the attendant children, husbands and in-laws, it was a good Christmas and will last in the memory for many years to come. As Dad said, when we all left on Boxing day morning; ‘It’s going to feel pretty quiet here all of a sudden.’

 

Happy new decade to all the carers and all the people with dementia and generally the world XXX

 

 

 

 

Who decides enough is enough? – Why Dignitas and Dementia don’t mix

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It’s another cheery one for the summer holidays – Assisted Dying and Dementia!

There was an excellent article Dementia is our collective responsibility  in last week’s Guardian written by Nicci Gerrard, an erudite and considered commentator in this field.  The main thrust of the article was the idea that society needs to take ownership of dementia, understanding that it is now a common enough condition to be considered universal (her concluding statement; ‘If not you, someone very near you. If not now, soon.‘ says it all).

As is sometimes the case, the comments following an article such as this can prove to be more polarising and provocative than the original piece – after all, one purpose of journalism and sharing a viewpoint is to stimulate discussion and debate. This particular article presaged a tidal wave of comment regarding the option to end one’s life when given an ultimately terminal diagnosis of dementia, slightly missing the original point but channeling the worst fears of readers who dread the lack of control that dementia brings.

There is a view that Assisted Dying is the key to restoring this control. People cling to the notion that such a process would enable them to end their life prior to the indignities of incontinence, immobility and dis-inhibition.  They hope to be able to make a rational, detached decision that; “Enough is enough – I am no longer myself and I no longer wish to burden this world with the thing that I have become.”

And indeed, that hope – the idea of ‘taking back control‘ (now where have I heard that before?) – is so pervasive that most would welcome such an option with open arms. I entirely understand these sentiments. It is a scenario I have considered myself, as has everyone with a family member unfortunate enough to have a progressive neurodegenerative disease. We have also all surely debated the ethics of aggressively prolonging life in the husk of the person we used to know. But, in these musings we often come up against the ‘How?’ and the even stickier wicket of ‘When?’

Assisted dying was initially legalised for extreme cases of intractable suffering (and I am not going to open that old can of worms about ‘suffering’ and dementia because it DOES MY HEAD IN). Where the law, the medical establishment and the wider society of a particular country could see and accept that an individual was suffering beyond all hope and redemption there seemed to be a case for allowing an end to it. So far so good. This all sounds reasonable, humane and morally robust.

However, one man’s intractable suffering may not be the same as another’s. There is now a situation where people with what is perceived to be ‘less intolerable suffering’ are not allowed to end their own lives. Their blighted existence, or the conditions they live with, have been deemed ‘tolerable’.  Some of these people have argued that it is against their human rights to discriminate against them in this way. Who is The State to say what is bearable for an individual? Who makes that decision to say, “Yes, Mr Jones, on my checklist your particular scenario constitutes intractable suffering. Please proceed to the departure lounge” ?

Maybe instead we should leave it to the individual to decide for themselves whether their continued presence on the earth is worth preserving. But in some countries being “tired of life” is now considered sufficient indication to assist a person’s death.  Do we really want to ease people off this mortal coil because they are bored by living? Could we not try and make their lives more fulfilling instead? And what about those people who have been persuaded that they are a burden or that they would be better off dead – should doctors really be the final arbiters in existential questions such as ‘what is my life worth’ and ‘what is the point in being alive any more’?  We are scientists after all, not philosophers.

Another question (and this topic is full of them) is whether someone who is suicidal can really be deemed to have capacity? We detain people under the Mental Health Act if we perceive them to be a danger to themselves. We admit them for treatment, ‘section’ them, medicate them back into believing their life has meaning and worth. Isn’t saying ‘I want my life to be over’ openly admitting to being an active danger to oneself? Again we return to the cognitive ability to make these decisions which is so pertinent in dementia. Because making an active decision to end life requires mental capacity and dementia robs people of that very facility.  An unhappy conundrum.

When do the scales tip from being cognitively sound and able to say ‘I want to die now‘ to becoming the individual we fear; the one who doesn’t even really understand what it means to be alive any more? And from a more practical point of view, when do we then sign that document, book the flight to Switzerland or take that lethal cocktail?  If there was a magic time frame, a moment in the disease process where one could say with certainty ‘this is it, the end of my mind and personality, the end of my time as a functioning member of society. Now it has to stop,’  maybe assisted dying could work. But there isn’t.

So, does someone with a dementia diagnosis choose to go before they lose capacity, thereby potentially missing out on a few more years of good quality life spent with one’s family? Henk Blanken’s article for The Guardian’s Long Read My Death Is Not My Own is, as the name suggests a long read, but well worth it, not least because the author has full cognitive function but is facing a future where he may not. He is also a citizen of a country where assisted suicide is legal, well-supported, openly discussed and, some may say, actively encouraged.  For him to suggest that there is a problem with the underlying principles allowing people with dementia to access assisted dying in those circumstances is significant.  People who currently live in countries where assisted dying is illegal talk about how a change in the law would help those with intractable life limiting conditions to have a dignified death, but the vast majority of people who I see at the end of life do not have the capacity to take advantage of this process, even if it were legal.  So what is the answer?

Personally I think we need to take a slightly different look at things.  We are working on the assumption that there is only one way to actively intervene in our own destinies but in reality there are countless small decisions we can make to affect and effect our own demise.  There is a difference between ending a life and simply not prolonging it.

Currently in the West there many things we do medically to extend life, in fact one could argue that we extend it unduly and against better judgement. We actively resist nature taking it’s course. Medics work on the principle that if something can be treated we should treat it or we should at least offer treatment.  The offer is made in such a way that the patient and family assume proceeding with the treatment would be the right thing to do, consent forms are signed, tablets are taken, life is prolonged and lengthened, and on we go.  I have see patients in nursing homes who have, what would appear to be, fairly poor quality of life that is preserved, nurtured and medically enhanced far beyond what would be considered ethical in an animal. The level and type of intervention varies but to give an example: Let’s say a person with advanced dementia reaches a point where they start choking on their food and a decision is made to artificially feed them. This may be considered the ‘safe’ thing to do, particularly if the options are presented to the family in the following terms: ‘Do you want to…

a) see your loved one choke on a piece of cabbage and possibly die of an aspiration pneumonia

or,

b) have a simple procedure to allow sustenance through a tube in their tummy that will enable them to live for longer?’

The answer most families plump for is option b. The answer I would go for and hope that my family would choose for me (if my quality of life was sufficiently poor) is a. Pneumonia wasn’t called ‘Old Man’s Friend’ for nothing and two, three, four further years of being bed bound, at risk of pressure sores, unable to communicate, unable to even eat food any more, seems infinitely worse than a short bout of respiratory infection and a Cheerio Lads. (Note that artificial feeding for people with a good quality of life is often an excellent treatment option – I’m just using it as an example of a life-prolonging intervention that may not always be appropriately administered).

This planning around decision-making processes is perhaps easier for me because I’m a doctor. None of us can predict what is going to happen but I am at least aware that the medics don’t have all the answers and neither do they want all of the responsibility. I know that I am well within my rights to say; ‘I don’t want that treatment for myself’, or, ‘No. That treatment for my mother would not be appropriate at this point.’ I’m happy to take ownership of those decisions even if it brings about a slightly earlier death, maybe even because it brings about an earlier death. But people without a medical background simply aren’t aware that they are allowed to request a ceasefire in the battle for life, either for themselves or on behalf of a relative, so they take up the offer, they go along with the plan, they ignore the nagging voice of doubt because the nice GP or paramedic says that Dad needs to go into hospital and have intravenous antibiotics or he might die.  They don’t say to themselves, would Dad actually prefer to die?  Or if they do, they feel completely unable to voice that opinion out loud for fear of being cast out of normal society or arrested.

Wouldn’t it be easier if those who want to die, those who don’t want to live any longer and those who wouldn’t have wanted to live like this are not actively pushed along the path of existence any further than they need to be?  There are many options for withdrawing intervention and allowing natural death to occur earlier; stopping preventative medication for one thing – why take statins to prevent heart disease, why take anticoagulants to prevent a stroke if actually the idea of a quick coronary or brain event would be just the terminal incident you’re after? There just needs to be a common sense approach and people need to be treated (or indeed, not treated) on an individual basis.

Obviously most people would wish to be kept comfortable and for their symptoms to be alleviated, so if you were in pain you would have the best analgesia, if you were nauseous the best anti-sickness medication etc. Palliative care in the UK is the envy of the world. We are great at looking after people who are dying, we’re just not very good at allowing them to tip into that category. Instead we let medicine force their bodies into a longevity that their brains can’t keep pace with.

Surely it is better to keep the lifesaving stuff for people who actively want to carry on living and simply withdraw it from those who don’t? As doctors our default position should not always be to aggressively investigate and manage frail people with a terminal illness – we don’t have a mandate for that. Instead we have a duty to do the best by our patients, to do the right thing. ‘Do no harm’ should have higher standing than ‘Keep alive at all costs’ – I think if the public knew that a more nuanced view would be taken by the professionals involved in their care at the end of life perhaps they wouldn’t fear it so much.

 

P.S.  This is a controversial post and I am sure I have over-simplified in some areas, over-looked others and probably ridden roughshod across some readers’ strongly held beliefs. Like all my blog posts my intention is not to cause widespread offence and outrage but to make people think. However, I am fully expecting a backlash of biblical proportions….

Keep in touch with yourself – self care for carers

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Keep in touch with yourselves! was a phrase used by my father when departing a get-together, usually followed by; Love to the family! – the comedy element coming from the fact that we were the family, obviously. Like most fondly remembered sayings and mottos, you kind of had to be there, the side-splitting humour doesn’t translate terribly well and would be unlikely to win me a spin-off series, but more pertinently, I’ve realised we don’t say it to each other any more.  Dad taking his leave of us is no longer an event packed full of light hearted japery – and without mum rolling her eyes at his idiosyncrasies the in-jokes lose their impact.

However, it seemed a good title for this post which is concerned with the importance of carers caring for themselves.  A wealth of blog posts, newspaper columns and self-help books have been published on the topic and I suspect it’s unlikely that I am coming out with anything groundbreaking here – but as far as I’m concerned the profile of carers can never be too high, the unique and lonely plight of a carer can never be over-estimated.

It follows that if we are concerning ourselves with the needs of carers we must not only highlight the problems of burn-out / stress / depression / pure unadulterated rage – we must also look at answers to these problems.  Increasingly I am aware that in this country, and throughout the developed world, we are constantly wringing our hands about our universally deteriorating mental health without addressing the possible solutions.  This is usually because they involve money, whether it be funding acute and community psychiatric services or asking social media platforms (ever so nicely and politely) to stop promoting suicide sites to our vulnerable teenagers at the risk of a minor drop in their astronomical profits. Anxiety is rife, individual and collective self-confidence is at rock bottom – and most people are teetering on the edge of an existential crisis on a daily basis, worrying about climate change, antibiotic resistance, Brexit, Trump… (my current faves).  Add into this febrile mix the constant, grinding hideousness of caring for someone who no longer recognises you, offers no emotional connection or payback for the care you provide and, in fact, has the potential to wound or insult you physically or verbally – and you have a recipe for a pretty miserable day.

Anyhoo! Crashing on! The reason for this post is to look at the opportunities for escapism out of this dire quagmire.  The good news is that there are things you can do to lose yourself (or indeed rediscover yourself) for a while, whatever the circumstances.

1 – Twitter (other social media platforms are available but I don’t really understand them) 

Recently someone contacted me on Twitter having received the devastating news of her mother’s dementia diagnosis.  I recognised the panic in that single tweet and thus, hearing the claxon call of distress I responded as soon as I could.  My tweeted reply alone would clearly not have been enough to single-handedly rescue this person (feel the hubris) but it did trigger a deluge of advice from all the corners of the globe. This is not because I am some sort of social influencer (‘Really?’ I hear you cry) but because it is incredibly easy to start the dominos off. Within moments there were people getting in touch offering support, advice, smiles, virtual hugs and kisses, thoughts, prayers and practical local resources (which I suspect may have been the more useful of the above).

I have talked about Twitter before and whilst I can see that there are problems with the  ‘Wild West / Here there be dragons nature of the medium, I have never found it to be too antagonistic.  There are some awful individuals out there but I knew that already from work and life in general.  Trolls, shaming and rape threats aside, I consider Twitter to be mainly a force for good.

2 – Exercise / Physical activity / Fresh air / Walking the dog

I’ve put these all in the same category under a general heading of  PE-teacher-isms and obviously all true but dull to write about.

3 – Sex and Drugs and Rock and Roll

Not dull to write about but beyond the scope of this blog and my limited coolness.

4 – Games

Not the outdoor variety as mentioned in point 2, nor the clothes off variety as mentioned in point 3, but the good old fashioned chess / bridge / cribbage / backgammon / tiddly-winks combo beloved of elderly French-men in provincial cafes and also my father, who is neither elderly nor french.

5 – Cooking and Baking

Good for many of the same reasons as point 6 below; therapeutic, practical and immersive. BUT potentially perilous for the waistline of carer, caree and attendant friends or relatives who will receive and consume the fruits of your labours with varying degrees of restraint, or lack of.

6 – Creativity / The Arts

My personal favourite; a sorely overlooked means of escapism and life enhancement in its many forms.  Painting and drawing can be enormously beneficial as well as virtually free (other than materials). Pottery, sculpture, knitting and sewing are often sociable (as evidenced by the success of Stitch and Bitch groups) as well as productive of tangible items that may even be of some practical use, so long as someone like me isn’t the creator or designer.

Music too, whether listening, playing an instrument or singing – all activities can be as social or personally mindful as you wish and all have proven therapeutic benefits (it’s not a scientific journal so I’m not going to reference this comment with articles of evidence, but just ask Gareth Malone.)

And finally, the best of them all – reading and writing; free at the point of use, no spendy outlay, no materials needed – other than a book or a pencil – and the greatest ever means of escape without having to actually leave your own home, or the person you care for.

I started this blog as a means to off-load, a therapeutic intervention of sorts.  I have always used writing to do this; the diaries I kept through medical school, whilst neither as side-splittingly hilarious or beautifully poignant as Adam Kaye’s  This is Going to Hurt, are nonetheless fairly hair-raising and I have continued to scribble away when the mood takes me, writing articles, entering competitions and having the odd moment of recognition and success (including the offer of a book deal which admittedly looked a bit dodgy. Reader, I didn’t take it.) And writing this blog has been cathartic and satisfying for me, although you may beg to differ.  But recently, as avid followers will confirm, the blog posts are dwindling. This is not because I am any busier than previously but because there is no longer very much to say.  The funny anecdotes have dried up – mum simply doesn’t do anything remotely amusing any more, in fact she doesn’t do anything. Which is fine. She’s not a performing monkey after all and the blog is about me and helping others like me, not about pretending things are more entertaining than they are.

If I had wanted to write about practical and medical aspects of dementia, I would have done so.  Equally, if I had wanted to give a sanitised, ‘everything is brilliant’ view, I might have considered it (unlikely – they really piss me off) but this blog was always about trying to keep things honest and lighthearted. There are plenty of sensible, seasoned bloggers out there who can tell you all you need to know about the serious aspects of dementia, and whilst I value their work enormously, I never wanted to be one of them.  Equally I don’t want it to deteriorate into a bitter rant about perceived injustices – I don’t feel especially hard done by; life is shit for many people in many different and horrid ways and I consider myself lucky. I really do.

A post I wrote a few months ago basically outlined the limits of mum’s current existence and I had a profoundly upsetting comment on the back of it, telling me that I obviously didn’t love my mother and had no regard for her as a human being.  It was the first time in the four-year history of mumhasdementia.com that I’ve had feedback of that sort and it wasn’t a high point, to be honest life is tough enough without additional, virtual aggro. But it was payback for being unflinchingly honest, and that is sometimes par for the course. I am not a purveyor of fake news. My product is sold as seen.

So, I will continue this blog in its slimmed down form and gain strength from the positive feedback I receive. I will continue to read all the fiction I can get my hands on and write stories until my mind is quiet – to wallow in an imaginary world when reality bites. But I urge you all – those of you caring for someone with dementia or those of you who have stumbled here accidentally – to find your thing.  The thing that makes you happy – and as long as it’s not illegal and doesn’t make anyone else feel rubbish, then you crack on. Whatever gets you through the night.