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

 

 

 

 

 

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

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

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

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

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

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

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

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

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

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

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

This is what I said:

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

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

 

 

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

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.

The current situation with Mum is that she remains at home, quietly withdrawing from the world. Dad now has a wheelchair-compatible-car, she has a wheelchair, compatible with a wheelchair-compatible-car (not a foregone conclusion it would appear) and they have a hoist, an easy access shower, a toilet seat raiser and a mechanical chair and bed which allows a fairly easy transition between. She has carers from The Bluebird Agency (every one, without exception, complete bloody superstars) for an hour in the morning – they get her up, washed and dressed. Alison comes twice a week to take Mum out to get her hair or nails done and my sister and I visit when we can.  This is the entirety of her world and she is comfortable and peaceful within it. She sleeps a lot, she sits quietly for the remainder of the day and she sometimes smiles. She enjoys her meals, she doesn’t like her nails being cut but appears to experience neither significant distress nor overwhelming happiness. The range of her emotional experience is narrow but her mood usually sits somewhere around contentment. So we are at another plateau. Nothing bad is happening.

As discussed previously, this is the time that one needs to think about planning ahead. Much better to do it in a period of relative tranquility, and thus Dad has been trying to motivate himself to look around residential homes again, just so we know what resources are available if they are needed. We may get to a point where Mum is completely immobile and has greater need in terms of number of carers and frequency of visits. Currently Mum’s care package (when one factors in the above appliances, agency fees and occasional respite at the ‘nice nursing home’ out of town) run to a similar cost as privately educating a child at one of the more exclusive public schools – if this cost increases it may be difficult to afford to keep her at home.  It may also become too difficult to manage her care at home although at present I find it hard to believe that she would be capable of being difficult, challenging or any of those other pejorative terms that the dementia community rightly find degrading. She simply doesn’t have the physical strength to wander off or assault anyone and she has such reduced vocal capacity that she couldn’t insult or hurl abuse at a carer. Her ability to ‘misbehave’ is limited and in saying this I am neither trying to be offensive or wanting to belittle the experiences of those who do care for people with more complex needs.

She is happy. We are lucky.

 

Nonetheless, it is important that we investigate other avenues, just in case. The battle has always been getting Dad to take the next step (whether it be taking away the car keys, employing a cleaner to help around the house, or moving to downstairs living). So there have been conversations taking place and today the subject of visiting people in nursing homes came up. Dad’s question was ‘What would be the point?” – if Mum was so reduced in her circumstances to need residential care would she gain anything from seeing us? Would she know whether we had visited or not and would she care either way? Whilst I agree with the question and understand the reasons behind it, I think that there are hidden advantages of maintaining a frequent visiting schedule, even if the person you are visiting is completely oblivious to your presence:

• Taking kids into a Nursing home is good for them and good for the other residents, even if Mum doesn’t recognise her own grandchildren from Adam. Nursing homes can be scary places. Often people have never set foot inside one until they need to consider their own care or that of a loved one and it can be an assault to your senses; the noise, the smell, the institutional feel. I imagine it is similar to visiting prison, hospital or, to use my previous example, an exclusive boarding school. These places have their own individual character and can be intimidating if one is unaccustomed to them. So, normalising it; making the building and the rooms familiar to children is a good thing. It broadens their range of experience, it introduces them to how we care for our elderly and frail and it reduces the secrecy and stigma associated with shutting people away, out of sight. Additionally, the benefits to other residents of having children around are enormous. Toddlers and teenagers provide variety; new noises, new smells and new sensations in an otherwise limited environment. So yes, I will be taking the kids to visit Granny if we ever get to that point – and I will make sure that they have an activity to focus on when we see her. I might ask them to read to her, play her a piece of music or draw a picture. We might wheel her into the garden or sit in the communal area to finish a homework project but I recognise that there needs to be a purpose for the visit rather than simply sitting waiting for some piece of existential wisdom to emerge from Granny’s mouth or to witness any evidence that she is actually pleased to see us.
• Regular attendance from family members is an indication to the care home staff that this person had other shit going on in their lives prior to this juncture.  Of course, staff know this already, but even as a visiting GP it makes me view a patient slightly differently if I see them when their wife is in the room, or if their niece has just left and passed a message to the nurses to ask me about their cough. Knowing about the existence of a support network puts that person in context and, whilst I am not suggesting that staff would knowingly treat a resident better if they were expecting a visitor, there must be an element of wanting to actively demonstrate the family that the care being provided is good. Do residents who have no visitors receive a poorer standard of care? Probably not – but it can’t hurt to focus the minds a bit.
• Regular involvement and good communication between family and care home staff reduces the likelihood of inappropriate decisions being made. An inexperienced nursing auxiliary faced with a deteriorating patient in the middle of the night is much more likely to call an ambulance and have that person admitted to hospital if there hasn’t been a clear message from the family that this is not what the person would have wanted. If however, this message has been documented and reinforced through numerous recent visits, the nurse in charge can say, “Oh, well – her son was in today and he knows that she’s becoming more unwell, but he was very clear that she wouldn’t have wanted to go into hospital.” It is then a lot easier for staff to use their clinical judgement, make the patient comfortable and get them assessed on a routine visit from the GP the next day when a more informed, less ‘knee-jerk’ decision can be made.

 

I remain hopeful that we may not ever need to put Mum in a home. Having seen her over the past few weeks I think she is slowing down completely and she may just quietly doze off in her chair one day and not wake up again. It would be classic Mum to pop her clogs without a fuss and a drama. But equally, she’s still young and her body may continue to function for many, many years – so we need to have a plan. And if that plan, for whatever reason, ends up involving residential care, I hope I will be able to visit regularly and that my children will feel the same. I make no judgement on others – sometimes visiting a loved one may be just too distressing for those who are left behind – but I would say that there are hidden benefits beyond the need for companionship and that these should be considered when making a decision.

There is a point to it all – even if it’s not immediately obvious.