For those who didn’t get around to reading last week’s post:

a) WTF are you playing at, reading them out of sequence, you crazy renegades?

b) You’ll have missed the fact that Mum has now moved to a care home and that we feel okayish about it because the home she has moved to appears to be most excellent and joyous and shall henceforth be referred to as Best Care Home (BCH) _TM

Okay – I can’t be a hundred percent certain that BCH is the best care home in the world. I can’t even be certain that it’s the best in the county. But I can tell you that we have found a place that seems to tick all the boxes, a place where visitors and small children and pets are welcome, a place that feels like home. And to be honest, although it doesn’t detract from the weirdness of ‘putting your mother in a home‘ it does help enormously to know that Mum will spend her days somewhere full of warmth, compassion and happiness. So here are the things that leapt out at me as indicators of the good stuff. Your own list may be different, but I suspect that the principles are similar.

Good things to look out for

• Animals and Children – On our first walk around BCH we met one of the resident cats (curled up on a chair in the sunshine as all cats should be) and the resident dog (small, calm, and good at staying out of the way of shuffling feet – It’s a bloody good thing they don’t have a massive pony of a dog like ours because she’d have taken out a couple of old ladies’ hips simply by turning around in a confined space). Both enjoyed being petted and both made BCH instantly homely. I know of other care homes where they have chickens, ducks, and some with even larger livestock. Clearly it depends on the rurality of the setting, and I’m not entirely sure how they would manage someone with significant allergies, but I think a home where animals are present is a good sign. Similarly, a care home where small children are welcome is a massive bonus. At BCH grandchildren are actively encouraged to visit, there are strong links with the local school, and BCH staff are able to bring in their own children on days when childcare might be an issue. Melissa, the manager, told us that many of the staff have children who have grown used to spending time at BCH over the years, and now, even though they are in their late teens and twenties, they still return to help out with basic maintenance and gardening, or driving the residents to hospital appointments.
• Visitors – The visiting policy is entirely flexible (once all COVID restrictions disappear). Friends and family are allowed to visit whenever and stay for as long as they like – there are no restrictions on number of guests or the frequency of visits. Three days after Mum had arrived at the home, I visited with my two eldest children and we were made very welcome. We sat out in the sunny courtyard with Mum, my daughter immediately located the three-legged cat who sat on her lap for the duration of the visit, my son toured the garden a couple of times and gave his verdict as ‘nice’ and then we all went and had a nose at Mum’s room which was light and airy with an armchair in the garden-facing bay window. We stayed for half an hour – I’m not sure that Mum registered our presence, but it didn’t really matter, it was nice just to sit peacefully in the garden with her.
• Small and perfectly formed – This may not be true for everyone, but I wanted somewhere that felt cosy, where the number of residents was small enough to feel like a family. The added advantage with a small number of residents is that the staff ratios are usually better, and the staff are much more likely to know each resident’s little foibles. The disadvantage of a small home is that spaces come up infrequently (a dead man’s shoes situation) and that they are less robust in terms of the financial climate. Small homes, like small GP practices, village schools and shops, are all struggling to keep afloat and they do not have the economies of scale that a larger institution would have. So, you may find the perfect place only to have it close down and turf Granny out on the street. You know me – always looking on the bright side.
• Links with local community – BCH is situated at the end of a village lane, right next to the church and in the heart of the countryside. There are visits to and from the local school for carol concerts and fetes, and sometimes spontaneous visits to the farm at the other end of the lane to see the animals. A friend who grew up in the village says that she remembers BCH from her childhood and recalls how she would often see residents out for walks or sat in the gardens. She says it has always seemed more like a family home than an institution. Another friend runs a care agency, and she says that BCH has the best reputation locally. All of this is anecdotal, but it adds to the reassuring picture.
• Low staff turnover – All the staff are local, living either in the village or nearby and all can be called upon in case of emergency. In fact, Melissa physically moved into the home for a period of months during the early days of the pandemic. Some families in the village have three generations employed at BCH and people seem to enjoy working there because their rate of staff turnover is so low. The home has never had to rely on bank staff or locums and as a result every member of staff knows every resident as well as (perhaps better than) their own families.
• EMI – For those of a certain age this does not refer to the record company but the name of care homes who catered primarily for those with dementia. Nowadays you have a simple binary choice between residential or nursing care but previously there was a third option of EMI which stood for Elderly and Mentally Infirm. It basically meant a home for people with deteriorating cognition. BCH used to be an EMI home and as a result they are absolute experts in dementia care – they’re all over it. They know exactly what they are doing and have years of experience dealing with people whose behaviour might prove challenging in other settings.
• Low rates of admission to hospital – As a GP this is a really useful marker – a care home should have the primary aim of caring for people at home, as the name suggests. Having a resident hanging around for hours in a packed A&E, distressed and confused, should be seen as a poor outcome – unless an admission to hospital is completely necessary and would potentially be of benefit, for example to treat a reversible condition like a possible hip fracture. Good links with the local GP services (a regular face to face ward round and a direct phone line to the surgery are both excellent signs) and the community nursing team are critical, but the main determining factor in keeping people out of hospital comes from the ethos of the home itself. Resisting the urge to simply hand over responsibility for every sneeze to the paramedics or the hospital requires competent and confident staff who know their residents and are able to make the right judgement call.
• Experience and understanding of good end of life care – My sister said that she could see my face when Melissa told us she works in a hospice one day a week, and knew I was instantly sold – I honestly cannot think of a better indicator than this. Some homes I have seen as a GP have been woefully underprepared for end of life care and have responded with a knee jerk emergency admission to hospital for anyone looking as though they were in danger of shuffling off their mortal coil, irrespective of their wishes. As I mention above, hospital is primarily a place for treating urgent and reversible illness, it should not be a place where people are sent to die just because the care home staff are unable to deal with them in their final hours.
• Relaxed and a bit chaotic – as a home should be – BCH is not clinical or sterile. There are carpets on the floors and pictures on the walls, there are old wooden beams in the snug sitting room and a stable door half open to the office – the place has the feel of Christmas Day where the whole family has come to stay, just after everyone’s finished their dinner and is dozing in front of the fire, other than Uncle Barney who’s had a bit too much sherry and is now laughing merrily to himself and swearing in the corridor (there actually was a chap doing this on our first visit).

Tips for coping

Having reached the decision to move Mum into residential care and having found the perfect place for her to live, might lead you to believe that the transition from ‘Mum at home’ to ‘Mum in care home’ was an easy one to manage. It wasn’t. The day loomed large and the finality of it all was at times overwhelming. Significant events and peaks of emotion have been infrequent on our dementia journey – as I’ve mentioned before, it’s been more of a slow insidious decline and acceptance of loss – but there have been key points along the way, suprise punches to the gut that leave you reeling. The decision to stop Mum driving, the decision to stop her looking after the grandchildren, the move to downstairs living, the first use of incontinence pants, the addition of home carers, the weekends in respite, all these moments have been critical. But the permanent move to residential care is the single most important decision we have ever taken, and one of Mum’s most major life changes, made on her behalf but without her consent – because she was unable to offer it. It is an enormous thing to decide for somebody else and we were often assailed by waves of guilt and fresh bouts of grief. It was another little bereavement to add to the list. For anyone else facing this dilemma I can offer few words of wisdom but I can share the things that we did to make the process easier.

• Treat the move as temporary (in your head) – Mum had often been to care homes for short periods of respite and psychologically it was easier to think of the final move as another transient stay (one that simply continued until it became permanent).
• Think of things you can still do with your loved one outside the care home. Dad had already told the hairdresser that we wouldn’t be bringing Mum back to see her again as she was moving into residential care, but after a discussion we realised that there was no reason why he couldn’t collect Mum from BCH and take her to have her hair done at the usual salon after all. In fact, there was nothing to stop him taking her to all the places he used to – Sunday lunch with the grandchildren, trips around the village in the wheelchair, dropping into my house for a cup of tea. The move to a care home needn’t feel like incarceration – they aren’t prisons, and you are allowed out from time to time – if you’re good.
• In the week of the move make sure you have the right balance of things to keep you occupied / distracted and enough time to quietly process the loss. Like any bereavement this will vary from person to person. My sister and I offered Dad various activities and visits but there were no three-line whips and no sense of obligation. We knew that he would need time to grieve.
• Equally, make sure that there isn’t too big a gap between the person entering the home and you going to visit. You don’t want to feel that it’s an insurmountable obstacle.
• Go and visit – it’s not as bad as you think.

And today’s C word is not COVID, or Cancer, or the obvious and oft misrepresented Old English word. Today’s C word is Care-home (so perhaps it’s two words? Less catchy click-bait though).

The day is about to arrive. Care Home Day. We knew it was on the cards and to those who say, ‘I’d never put my mother in a home‘ I would say, ‘With all due respect, you are a clueless, deluded fool,’ (because, as everybody knows, if you use the phrase ‘with all due respect‘ it instantly alerts the person on the receiving end to the fact that you are about to insult them). This has not been an easy decision for our family, and it is not one we have undertaken lightly. Knowing it’s the right thing to do doesn’t necessarily make it straightforward – there are complicated emotions involved, not least, guilt – and outsiders having an opinion on the rights and wrongs of a decision without understanding these complexities can do one, quite frankly.

A friend whose parent had early onset dementia told us many years ago that it was only a matter of time before residential care became the safest and best option for Mum; the clinical specialist nurse (the only specialist we have seen during the entire process) said that Mum’s rate of deterioration would likely necessitate a care home placement by the age of sixty-five. Well, Mum is now the grand old age of seventy-one and my father has lived with her and her dementia for more than twelve years. For the last quarter of his marriage Dad has watched the woman he loves make a slow and incremental decline, losing verbal communication, mobility, and continence – her loss of function directly proportional to the increase in her care needs. And there comes a point where most people become too frail, unsteady, or distressed to be safely cared for by just one other person, even if that person happens to be a devoted spouse.

If you cannot feed, wash or toilet yourself, if you cannot physically get out of bed without assistance, then you need help – and you probably need that help for sixteen hours a day – at least. There is no employment law that would recommend a 112 hour working week as being safe. As an aside, there have been times in the past where junior doctors have been forced to work these kind of hours until the European Working Time Directive came in and reduced them to marginally safer levels, and then Brexit ensured that those protective measures were removed once again. Good work, British voters – congratulations on Taking Back Control! Anyway, even if the occasional 112 hour working week was admissible, to do this for every single week of the year for twelve years without annual leave, sick leave or time off for good behaviour – is preposterous. It’s not safe for the carer and it’s not safe for the person being cared for.

My biggest fear over the past two years has not been, ‘what if Mum catches COVID‘ – it has been, ‘what if Dad catches COVID.’ So, we can add that to the, ‘what if Dad breaks his leg, what if Dad has a heart attack, what if Dad becomes depressed and suicidal,‘ list of horrors. As it happens, Dad did get COVID, but he was triple vaccinated and Mum was thankfully in respite care for the weekend so the only thing that was scuppered was his three day holiday in Devon. But the point is that my father has become defined by his role as carer. Our concerns for his own individual safety and wellbeing are inextricably linked to the practical issues raised by him not being able to fulfil his caring duties. In this way (as in many other ways) the label Carer is not dissimilar to the label Parent, except that most people voluntarily sign up for the latter.

Basically, we have reached the point where Mum needs two people to transfer her safely and she needs someone to keep an eye on her for the majority of the day. She is also starting to suffer from some of the further indignities that dementia can throw at a person; urinary infections are now a monthly treat as well as a couple of epileptic fits requiring assessment in hospital, which has been as fun as you’d imagine. It’s fair to say that we have reached the end of our capabilities in terms of safely caring for her and it is difficult to see how she benefits from being at home. She doesn’t recognise us, she doesn’t recognise Dad, she is ambivalent about her surroundings and shows no signs of distress or pleasure irrespective of geography. There was a time where we felt that it was kinder for Mum to be somewhere familiar, surrounded by the faces of people she loved. But she no longer seems able to differentiate the faces and voices of close family from those of complete strangers. Perhaps we have reached a point where nothing is familiar to her, a point where home is both nowhere and everywhere. Either way, the benefits of staying are now outweighed by the risks. And so we once again start looking at our options.

We know she will be self-funding and we have not used the state for any element of Mum’s care to date. Even the incontinence pads which we could get for free, have been dutifully purchased by Dad during his supermarket trips. Despite being virtually bedbound Mum is still not medically unwell enough to warrant nursing care and the NHS budget that goes with it. She needs ‘looking after’ rather than ‘treatment’ – and being looked after is pretty bloody expensive. The average cost of residential care in our neck of the woods is over £900 per week. I’m just going to let that sit with you for a while as you ‘do the math’ (as our American chums say).

Forty-five thousand pounds a year – more than the cost of the seemingly obligatory Eton education of any future Prime Minister, and more than the net household income of a family where two adults are employed full-time in well paid jobs. And these prices are almost certainly set to rise. The cost of living increase affects those on the margins of society the most; the old, the frail, the vulnerable, the disabled, as well as those who are fit and well but work in low-paid jobs, like carers. I don’t for one minute begrudge care home staff the cost of the care they provide, nor care home owners – the ones I’ve seen both professionally and as the daughter of a potential customer aren’t turning over a large profit and many are being forced into closure due to unsustainable financial pressures. Care costs money and good care costs a lot of money – although it doesn’t necessarily follow that the most expensive home is the best one. A lot of the time you are paying additional pounds for the hotel services; the appearance of the rooms, the catering and the grounds (and some homes charge double the figure that I’ve stated purely to cover these add-ons). We have tried various establishments over the past few years, mainly for respite – a weekend here, a week there – and we have used different care agencies for in-house care. We have no horror stories to share – every person involved in Mum’s care has been an absolute delight, particularly during the pandemic when my parents went for days without seeing anyone other than the home care team.

So, if you’ve weighed up the pros and cons and come to the sad but inevitable conclusion that now is the time to look at permanent residential care, and you’re not necessarily going to use price as a marker (assuming that it’s all going to cost an absolute fortune), and you’ve had no bad experiences of local facilities, then how do you decide which is the best ‘forever home’ (an unfortunate but particularly apt phrase in this case) for your loved one? What criteria should you use? What things should you be looking for?

Fear not. For I shall tell you in my next post how we came to discover…

THE BEST CARE HOME IN THE WORLD!!!*

* (and once I’ve told you about the criteria for choosing a home then I’ll also tell you how to cope with the crippling anxiety and waves of guilt that assail you during the small hours of the night when you contemplate the realities of the situation – I can’t tell you about these strategies just yet because I haven’t quite worked them out myself)

And so begins another winter of discontent, but this time with added pandemic just to spice it up a bit. The current situation is harsh. Every demographic is affected and so far only the extremely wealthy seem to feel that their money buys them anti-viral protection the rest of us can’t see – much like the Emperor’s new clothes. For everyone else there are furlough schemes, job losses, collapse of the arts and sports sectors, decimation of the hospitality industry, crumbling mental health, indefinitely paused cancer treatments, school leavers failed by the exam algorithm, students locked into their halls of residence… I could go on but I’m running out of suitably catastrophic adjectives – suffice to say that most of us are facing real threats to our livelihoods and ways of life.

But surely one of the bleakest stories of all (because that’s what you were after wasn’t it? The very bleakest thing I could possibly come up with?) is occurring in our care homes. After a decade of austerity, a paring down to the bone of resources for social care, and an escalating number of very frail, very poorly and let’s face it, very demented people in the population, we now have a disease sweeping the globe and sending our flimsy, stretched, underfunded care facilities into meltdown. This pandemic has highlighted both the importance of health and social care and the woeful lack of time, money and energy we as a society devote to it. It has caused everyone to shake their heads in consternation before they move on to their next concern, which may well be how they are going to feed their children, I’m not judging people for looking away – we’ve all got shit to deal with.

However, there is a group of people who cannot look away; those who have loved ones currently residing in care homes – and a few of their stories are now, finally, being picked up and dragged into the light for a good airing, thanks in significant part to the work of Nicci Gerrard and Julia Jones of https://johnscampaign.org.uk/#/ (@johnscampaign on Twitter). Some of these stories are heartbreaking. Family members, spouses and friends who are already used to being let down repeatedly by a system seemingly designed to make life for those with dementia so much harder than it already is, speak eloquently of their devastation. The pain of watching the people they care for deteriorate at an alarming speed when denied the comfort of familiar company.

The dilemma is as follows. Take your average care home catering to a mixture of those with nursing and residential needs. It is home to some who are able-bodied but cognitively impaired, and to others who are physically very frail but have wits as sharp as the proverbial razor. It is, in all likelihood also home to some who are both cognitively and physically challenged and some for whom quality of life is much reduced.

Along comes a pandemic. lets call it something catchy like COVID-19, and in the first wave there is, rightly, a national outcry as the virus sweeps through the care home population, not so much shuffling people off their mortal coil as ramming them off in a monster truck. The numbers of little red ‘C’s on our whiteboard at work increase as the COVID deaths creep up and the call goes out to the powers that be – SOS! Save Our Social care settings! And Lo, word comes down from on high, a ‘Protective Ring’ is to be thrown around the care homes. This protective ring arrives too late and is frankly meaningless when staff have no PPE and no testing capacity – a bit like being given a life-raft only to find it’s been made of lead and already has thirty seven people clinging to it and you’d actually drowned four hours previously, but it sounds good and people generally like the idea of a protective ring, it sounds like something you’d have in a soft-play centre, so we all nod and smile our agreement.

It then transpires that a protective ring means nobody can visit care homes any more – that we need to protect our loved ones from ourselves, for we are the vectors of disease and must be kept separate from the vulnerable. Makes sense. Nobody wants to be the dude who came into the home, sneezed, and took out forty grannies. So the care home becomes a fortress. A fortress with very permeable walls where staff come and go, often as unprotected as they are undervalued, returning to their families at night, thankful that they at least have a job even though they’re putting their own lives at risk and it breaks their hearts every time a resident dies. But for the family and friends of those residents entry is no longer permitted, communication ends and pretty soon, those fortress walls start to feel like a prison. The staff do their very best, as always. They try video links and phone calls. They keep families updated with Facebook posts and emails. They might bend the rules if someone is dying, they may say, ‘come in so he can have someone with him at the end,’ but in doing so they risk the health and welfare of their other residents. They compromise their duty of care to the many by trying to accommodate the few.

And as we all rush around in our COVID haze, poring over case numbers, vaccination programs, ICU admissions, masks, bubbles, eating out to help out, moonshots and trips to Barnard Castle – while we are absorbed by the pandemic, the people with dementia living in these care homes often have no idea of what is happening. The flimsy threads connecting them with the outside world are withering away and their loved ones are left only to imagine the confusion and sadness growing in their place. We have a terrible dilemma, stuck with the same bleak choices evident in the wider population but magnified in the microcosm of a care setting – quality of life for the majority versus keeping the few alive, no matter what (I know that nearing 50,000 can hardly be considered ‘the few’ but bear with me).

If we look at COVID deaths as a proportion of total deaths in care homes this year it is clear that they form the minority. Many more people have died from other causes, and most of those people will have died alone, having had no contact with family members for several months. Were these people or these families given a choice? And if they had been given a choice would the individual have said, I’d rather take the risk of catching and almost certainly dying from COVID, whilst continuing to see the faces and hear the voices and hold the hands of those I love‘? There may well be people who would have rather seen their family throughout March, caught COVID and died rapidly at the age of ninety-two, than had six months of isolation and loneliness only to reach their ninety-third birthday and die of a different brand of pneumonia.

If we follow this line of argument, that people’s mental well-being is the priority, then surely we should open the care homes back up, welcome the return of families, throw the doors wide to the sticky toddler clambering onto granny’s knee, smearing her face with their germy little hands, the well-meaning son bringing more than just flowers into the communal lounge… But if we do this COVID will be back within days, mowing down the population in a second wave frenzy. And that can’t be right either. Because for everyone in a care home who might have opted for company rather than prolonged life-expectancy, there will be another person who would really rather avoid exposure to a killer disease thank you very much and if that means not seeing Barbara for a few more weeks then so be it.

What to do? There must be a way to allow family to safely visit their loved ones without putting other residents at risk. There must be countries where they’ve got this sorted? Mustn’t there? Maybe it’s just not enough of a priority at the moment for those in power. Don’t get me wrong, the government have got a lot of issues on their plate, not least, many bin-fires of their own making, but surely this needs to be addressed? And perhaps on this occasion technology is not the answer.

In the news today we hear that care homes have been offered 11,000 i-pads to facilitate communication between residents and family members. Presumably these are the very same i-pads offered to schools for their vulnerable low-income families in order to allow them to access education during lock-down? The same i-pads that never actually ended up falling from the magic tech-tree or reaching those who needed them – oh those I-pads, yes. But, lets suppose for one moment that these devices make it to their destination this time around – people with dementia are often more bewildered by virtual communication than not having a visitor at all, looking at the person holding the device rather than the person on the screen, not understanding why the girl on the telly is talking to them, and ultimately providing zero reassurance to the family member who called them in the first place that they are content and happy. Nobody wins. We need a solution that involves physical contact – and with a highly contagious disease, I realise, this is a big ask.

A similar but equally lengthy issue opens up when we look at discharging people from hospital back to care homes.

• Do we want COVID positive patients arriving at care homes? No.
• Do we want COVID positive patients to stay on hospital wards for two weeks when they are well enough to be discharged, taking up valuable beds that would otherwise be occupied by people with heart disease and cancer? No.
• Should we have COVID homes where all the COVID people go, like modern-day leper colonies? No. And even if we did, which care home operator is going to volunteer to host these particular viral hotspots? It doesn’t look great on the brochure does it?

What to do?

Helpfully I have chosen not to provide you with the answers to today’s little conundrum. I think it makes it more rewarding all round if you come up with the solution yourself, more satisfying, yes? But if you do, please be sure to pass it on to the policy makers – Cheers.

 

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.

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.

 

 

 

 

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.

 

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).

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

 

 

 

 

Well, now this is exciting!  Selected as one of the best Alzheimer’s and Dementia blogs of 2019. Thank you very much indeed http://www.mytherapyapp.com and in such esteemed company too – I am honoured.

 

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 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.