Enter the dragon.

My Step-Mum-In-Law has been in a nursing home for a few weeks. I have tried to keep contact with her, not least because one of the reasons demented people go downhill rapidly upon entering residential care, is their disconnect with all things familiar. 

Unless you are a seasoned world traveller, you will have some understanding if you have ever been on holiday to a country with a culture very different to your own.  There may be guards with guns at the airport and the toilets could be strange. The currency looks odd and needs to be scrutinised and you don’t understand a word anyone is saying to you.

This, magnified, viewed through the fog of dementia, is the world of anyone newly resident in a care home. At the time everything in the surroundings most needs to be familiar to give reassurance, it isn’t.

For these reasons I tried hard to keep contact with SMIL, to be the familiar in the unfamiliar.

The prefrontal cortex of the brain, the bit behind your forehead, is the place where all the complex interactions with other humans take place.  In dementia, as in alcohol or drug use or withdrawal, these most delicate and nuanced workings are unavailable.  Thinking happens by electrical jumping between the synapses, the ends of the nerve fibres, to grossly over simplify matters.  Our brains are not hard wired, any nerve ending can connect with any other nearby nerve ending, which has to be one of the best designs in the universe.  But it is fragile. Fraying the nerve end with a drug or blocking the space with a plaque is like cutting the toaster lead with scissors.  No toast.  All the new thinking is doughy.

However, in the demented brain, well worn thinking becomes hard wired.  If you are out rambling through rough grass, you can see the trampled pathways and follow them because the walking is easier.  So the demented person is happy with familiar thinking, they know where it is going.  As my mother’s dementia worsened, one of the few things that would sooth her was getting out the old photograph albums.

So, doing what I could do, I tried to keep chatting to SMIL.  However, this involved ringing the main office, requesting whoever answered the phone to find A) the nurse’s mobile phone and B) the SMIL, then ring the Nurse’s phone number and be connected.  If she would talk.  At first she would talk, unless she was making friends with the other residents, in which case the phone would be put on a table and forgotten.  She does have a mobile of her own but cannot use it, or understand what the ringing noise might be, although she has twice used it to call the police, her daughter informed me, very upset.  As my mother used the phone in her flat at her care home to call the fire brigade three times, who did turn out, in case she was the last resident in a burning care home, I was less upset.

All the official pamphlets and literature about dementia tell you that, as the demented person is incapable of functioning in your world, you have to enter their world, to get inside their head and appreciate their world from their point if view.  This can be very like entering not just the dragon’s den, but the dragon.  An utterly irrational world is a frightening place.

Since the start of the pandemic I have been sending photographs of her step great grandchildren, taken by the DIL to the SMIL’s tablet.  The SMIL loves the photos and the little videos of the GGCs playing in the park, whooshing down slides and spreading ice creams down their nice clean clothes.

She has recently lost the know how to work the tablet.  The GGCs had visited Legoland for a birthday treat.  I printed off the photos and sent a concertina booklet to the SMIL.  When I rang, she told me she had just got out of the shower and that it was the first shower she had had for ten years.  Rejoicing in her cleanliness, I enquired if she had got the photos, she replied that she had and then began swearing at me and hitting the phone on the table.

This sort of scorching is always a surprise. Slightly charred, instead of running round fanning the flames, I endeavoured to do thinking.

I knew the SMIL was on antibiotics for a water infection and, the first course having proved ineffective was on a second course.  Which, given her response, didn’t look as if it was working either.  Now, why was that?

One of the characteristics of dementia and old age which has not been adequately explained to my liking, but which, if I live long enough, I’ll tell you all about, is the problems caused by human plumbing.  It’s not just the waterworks, which, I can already tell you (hurrah! knowledge.  oh.  hurrah.) suffer from lack of collagen as we age.  Collagen is the body’s elastic which makes things that ought to be plump, plump.  Your body decides not to bother making as much, starting at about age thirty. At my age even your wrinkles have wrinkles and if you are still working on losing weight, your wrinkles’ wrinkles have wrinkles.  And so has your bladder.  Your previously elastic water carrier is thinner, weaker and needs emptying more often because it is thinner and weaker. If it was a bag for life supermarket carrier you’d have swapped it for a new one ages ago.  This problem affects both species and all the intermediaries. Then there’s male hydraulic problems and all the inherited female difficulties caused by balancing heavy babies on just the one pelvic floor.  Human plumbing is long overdue for a redesign. My old family doctor was fond of explaining that those bits and your nose would work perfectly all your life if we still walked on all fours.  He used to chuckle about it mightily until he got older himself.  I strongly recall an episode of a Star Trek spin off in which a pregnant crew member, struggling to give birth, just had the baby beamed out of her and on to the table beside her.  That would be handy and save a lot of subsequent bother.

The SMIL had two children, a little late in life, as she had been told she couldn’t have children. Much later on, the pelvic floor problems occasioned by late pregnancy became evident as she aged.  She had a prolapse, which she told me about on the phone. A prolapse consists of organs which ought to be inside of you, falling out through the holes. I assured her it was a medical problem and really did need help from the doctor.  She was reluctant but having frightened herself by physical evidences of the prolapse on several occasions, was eventually encouraged to get help.  The doctor assisted with an internal anti-gravity device, which needed regular replacement.  SMIL was not happy about the outcome and used to complain to me each time the date rolled around, but the fix worked and she was OK.

Now, remembering this, I considered that if the SMIL’s son had taken her to the doctor, the last time he could have done so would have been over six months ago, as he had committed suicide in the spring.

I also recalled how very off the planet and aggressive my mother used to be with a simple water infection.  If you get such a thing, you will know it. You’ll be able to pinpoint the source of the misery every time you crawl to the bathroom.  This information seems to be unavailable to demented people.  One of the first items to be brought into my mother’s house by the carers was incontinence pads.  I was assured she would need them but she never did.  How much this had to do with the fact that she had never had a great weight sitting on her pelvic floor, as I am adopted, is difficult to calculate, but I think it had a significant effect.  She continued to know when to visit the bathroom for the whole of her life, which, although you might be young enough not to have to consider such a thing, is a great blessing.  This did not stop her having frequent water infections and being aggressive every time.  After a couple of years we eventually got wise to this, and if she was really ratty, suspected an infection and got started on the antibiotics before the ambulance rolled up at the door.  Eventually she was on antibiotics permanently, which of course, left no resources when matters worsened.  This common fix helps to explain why viruses can romp through care homes.

Back in the present, putting all of the pieces of the puzzle together, I rang the SMIL’s nursing home and, speaking to the chief nurse, acquainted her with the situation as I saw it.  The nurses are not able to access the residents’ medical notes, but the doctor, who visits every Monday, can.  He will read back through the SMIL’s notes and find out if an elderly festering anti-gravity device is the source of the infection.

If you have not yet reached the stage of involuntary dribbling, weeing and hitting passers-by with your walking stick be glad of every moment. If your body works, look after it.  Be really nice to your relatives in the hope that, if you need looking after and can no longer do your own thinking, they will do so for you.

If like Captain Picard, you are engaged with someone temporarily or permanently off-world, just try to keep the lines of communication open.  One day it could be you breathing fire at the villagers and hoping someone knows how to work the extinguisher.*

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*This entire post sponsored by MixedMetaphors4U and Spot the Brane board books.

Posted in Dementia diaries. | Tagged | 1 Comment

Difficult telephone chats.

Once again I am having some difficult telephone chats with a demented family member.  It’s my step-mum-in-law.  Cared for at home, a couple of hours car journey from her surviving child, her daughter, she went down hill so rapidly under the effects of constant back pain, that the care authorities were suggesting to her daughter that she needed to be in a facility, where they could keep an eye on her and were going to do so within the next twenty-four hours, whereupon her daughter got in a car and moved her mother to the nice care home in the next village to her own home, at speed.

I have talked to SMIL most days by telephone.  Not every day, as sometimes whoever answered the phone said she wasn’t well enough to chat.  Her daughter has been going to visit, mainly to collect complaints from her mother and be told how bad she is and now the daughter’s husband has tested positive for Covid, so she can’t go in anyway.

Needless to say the daughter is beating herself up at every opportunity.

How you view the world and your place in it, is an individual view dependent on many factors, such as genetically inherited personality and the life circumstances acting upon that base. Like flower bulbs planted under concrete, some of us still twist this way and that to get to the light.

I have known a number of doctors, nurses and care workers, trying to cure a loved one by proxy.  I know a policeman who would dearly have loved to arrest his errant brother.  I have an aunt who, as a magistrate, sent her unloving mother to jail repeatedly.

You cannot control what another person is doing or is going to do.  You can and should, to a certain extent with your children but can’t absolutely; the first time you cannot stop a baby crying is exceptionally educational.  Child psychology informs us that at the age of two or three, as children are more able to physically affect their environment as their motor skills improve, they begin to evolve magical thinking. Dress up a five year old and give them a magic wand and see how happy they become.

In the matter of dementia and other conditions that affect the working of the brain, we find ourselves powerless to even reach or interact with the affected person.  If their brain is not working they are not susceptible to reason.  It does not matter whether the condition affecting the brain is amyloid plaques in Alzheimer’s, alcohol withdrawal, or drug saturation, normal exchanges are no longer possible.  Not only can we not control the person, we can’t even help them, and sometimes are unintelligible to them.

The last conversation I had with SMIL, she complained that her bedroom was not her bedroom at home, demanded to know where she was, and in various other utterances was challenging and aggressive.  Eventually she hung up on me.

I have found under these circumstances, a phrase I read in a booklet for relatives of demented people to be helpful.  It said that the demented person was unable to enter your world, so you have to enter their world.  If they say they are the Queen of Sheba, you enquire how many elephants her majesty would like today.

In practical everyday terms I have found demented people, but not those suffering from drug abuse or withdrawal, to be reachable through tone of voice.  Soothing, calming and reassuring is the ideal tone to adopt, even if you are being sworn at.  In their minds all the sufferer can detect is a threat and they react with aggression. If you can find a way to remove the threat verbally, or to be obviously not part of the threat, this can help.  I remind the SMIL that in her own home she was occasionally looked after by her neighbour who could not be there all day.  SMIL is not well today and needs round the clock care which she is getting.  She is surrounded by nurses who can attend her immediately, unlike home where the neighbour couldn’t get hold of the doctor at all.  And so on.  All positive, all reassuring, all related to the physical immediacy of SMIL.

I have found dementia patients to be easily overwhelmed with fear, especially in the presence of pain.  It is almost as if the brain is magnifying the threat so that the compromised sufferer will take notice and act.

I understand being consumed by fear. I was fearful in cancer, especially if I was tired.  It is not such a jump to realise if I had been removed from familiar surroundings, was in pain, bereaved and had had a diagnosis of  a disease affecting my brain, inside which I live, that I too would be frightened and lost.  It would be almost unreasonable to be reasonable.

Whether caring for someone directly or indirectly, in your general dealings with other people, sane or insane, I believe the greatest help to yourself and others is to be kind.  I think it is one of the greatest virtues. It is, under duress, tricky to hold on to.  It is hard to espouse when you yourself are tired, in pain or fear.  The assistance to the necessary attitude is life itself.  Anything can happen to anyone and often does.  Being the sympathetic ear, the generous comment, the gentle understanding gets easier with practice. My grandmother practised these virtues all of her life and eventually excelled at them all.  My mother took the reverse view and was always fighting life.  Towards the end of her life my grandmother was never short of help or company; she was a nice person to be with.  Towards the end of my mother’s life there was really just me.

Anything could happen to you or me. If it’s already happened to someone you know, being kind is a good idea if you’re the one with the working brain.

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Symbiosis.

In a bit of long overdue housekeeping, I have tidied up my links.

New readers clicking on the word that says links in the top bar will find themselves on a page with other websites’ addresses.  Clicking on these links will take you directly to that website.  I had an enquiry whether I stocked items from other websites.  I do not.  If you order an item from another website you have reached with a link, your transaction is with that website not this one.  I used to have a shop on this website full of dolls that I make.  That was lost in a change of computers.  Although I may have recovered the information, I am not sure if I wish to start an online shop again.

I enjoy having a site with free reading written by a writer (me.)  I hope you enjoy it too. Unless I am away, for reasons beyond my control, recently health, though I hope very sincerely that is now finished and restored to normal, I post new writing at least once a week.  If I have more to say, more frequently, it’s always worth scrolling down to the previous piece to see if you recognise it.  I have been looking through my older posts.  I have been posting here for twelve years, so there’s at least 624 writings to sieve through, I hope some of it is gold. I’ve been doing it myself and find I can make myself laugh quite easily, though I tend to do it late at night, so I might just be tired.  You can select a topic by clicking in the side bar under categories or tags.  Posts appear always with the most recently posted first, scroll down to travel back in time and click on ‘older posts’ to go further back.  Yes this website offers time travel.  Free!*

If you wish to contact me, please do so by clicking on the link at the end of this piece of writing, where it says leave a comment. I always respond to emails unless they are spam, or you have entered your own email address incorrectly.  I can only use the information you give me.  A reader in the last week had an incorrect address so I was unable to answer her email because her email address did not work.

I have removed links to websites that are no longer working.  I have added mini epilogue, which is Marilyn’s online miniature construction diary.

If you have a website which is miniatures related, or you feel readers might be interested in, please email me for consideration. It’s called the World Wide Web because we can scuttle along the links to find each other, not for a larder of dead flies in the corner of the room, though if you stay glued to a screen for long enough, that may happen too.

I began this site to give publicity to Miniatura artisans but it evolved and has brought and shared friendship round the world.  Everything I write here is original, nothing is copied from anywhere else.  If I make a joke, it’s my joke (which accounts for how terrible some of them are.)  If there’s a photograph either I am the photographer or someone, usually a miniaturist, has given me permission to use their original photography.

I wrote for hobby magazines for many years.  Visitors to shows and senders of handwritten correspondence frequently asked for more to read but not always about hobbies and preferably funny.

Here it is.  If you have been reading for twelve years, thank you for joining in.  I write because you read it, you read because I write it.

Symbiosis.

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*Only backwards in time, so far.  Though I am willing to predict rain and the government (any government) doing something you don’t approve of.

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Midweek Miniatura–again!

Oh it is such a joy to be writing about everybody’s favourite miniature show again.  I love writing about the amazing artists, there are some, I’m one, who only do Miniatura.  In my case it’s because one original artist producing everything by hand from scratch can only make so much in a year to keep the quality consistent.  If you are making miniature art of any kind, it takes a lot to fill a six foot table.  I would never do a Miniatura without a lovely table full of choice, because before I was an artist, I was a collector. 

I know many of the best Miniatura artisans feel the same way, and I know from visitor comment, that’s one of the things you love about the show. Every single table is worth a really good look and there is stuff here you simply can’t get anywhere else.

Into all of this like a tiny pair of tweezers up the arm of a miniature bear, fits Josephine Parnell.

If you are new to this site you’ll find Josephine in my links, click on the top of the page.  She has been there since the beginning and is still making quality everything.

Josephine makes her bears in sizes to be dolls’ house residents and to be toys for dolls’ house residents and just to be brilliantly collectable miniature bears.  She also makes bear kits, so the ambitious can have a go themselves.  She once even made a kit of me, yes, I exist as a bear kit, which may or may not amaze you.

Here are some of the bears who will be going to the show.

Josephine

Any of these bears are smaller than your hand, but look at the detail, look at the personality, their faces are expressive, you can tell what they’re thinking, yet they are made of pile fabric.  Look at how good the clothes are.  Now look at the little bears the small bears are carrying.  They are perfect but the size of your finger, jointed, and they have expressions of their own.

This really is virtuoso stuff.

I asked Josephine about her attendance at Miniatura 2021.

Josephine says as long as she can get petrol and Covid stays away she will be attending Miniatura at Stoneleigh Park with her Dolls’ House bears, small and miniature bears, elephant and bear kits.  She will also have fabric to make more when you’ve been bitten by the bug.

Miniatura is the only show Josephine attends now. She is sure she’ll leave something behind.  (This is a normal exhibitor worry – the first show I did, I left the sign that said who I was on the dining room table, and nearly had to exhibit incognito.)

Josephine will be cheerfully smiling through her mask and answering any bear and sewing questions visitors may have.

Josephine is the expert and has a fund of knowledge which often attracts queues.  I have seen proto bear makers with margarine tubs containing failed bears (but no margarine) waiting patiently for the advice which will help.

If you do have to wait to get to this table, I promise you the wait will be worth it.  The bear which Josephine made of me has never got into a house.  It lives out, on the top of a bookcase, next to the one I made (not well at all, I’m not really a bear artist) from a kit.  If you get a bad attack of ‘I can do that!’ after seeing Josephine’s wonderful bears at the show I would urge you to buy a kit, they are very modestly priced, and have a go yourself.

In the spring you’ll either be waiting in the collector queue or the margarine tub queue.

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www.dollshousebears.free-online.co.uk

www.miniatura.co.uk


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Midweek Miniatura

I am so happy to be writing that title again, there were times when I thought it might not happen, but Miniatura is back, back, back!

I, however, am not. As you know if you’re a regular reader, I have health issues.  Not only am I not well enough to build a shop on a table and put a thousand items on it in two and a half hours (which is what I do), if I caught Covid at the show it could easily finish me off.  I am getting better by the day and plan to be back at the Spring show properly, healthy and well enough to enjoy every minute.

I am not even going to go as a visitor this time.

I am leading by example, pain in the neck though it is, and I sincerely hope you will follow.

I asked show organiser Andy Hopwood about Covid and the show.

As you’ll be aware the government have lifted restrictions, at the time of writing.  Andy says he will be monitoring the official advice right up to the show.  As you’ll also be aware, if you watch the television news, Covid cases are on the rise.

You are asked to bring to the show one of the following items of proof:  proof of double vaccination, NHS passport, proof of a negative PCR test or proof of a negative lateral flow test.

If you are in the UK you can still get flow tests free of charge from Boots The Chemist. They are in a box with many tests.  You follow the instructions, which will be either to shove a swab up your nose, or to shove a swab on to your tonsils and then up your nose, put the swab stick in a little tube and half a minute later you get a result which will be a change in colour.  I suggest if you are doing this you then take a picture of the result as proof.

Andy’s helpers are ready to take temperatures of visitors at the entrance.

Everyone is aware that the nature of Miniatura is people crowding round tables squinting at the tiny stuff.  Distancing is going to be difficult but please do your best.  You would be beyond annoyed if someone leant over your shoulder to see and then sneezed all over you.  It would wreck the show for you and you would worry for days.

You don’t have to wear a mask but if everyone did, it would be great.  If you sneeze without a mask on, and people do still sneeze because they get dust up their nose, you will get looks and not be happy.

There will be hand sanitiser at special areas all over the show.  Please use it.

Above all things, if you feel poorly on the day or the day before, don’t go.  The tickets are half price, they only cost three pounds.  A fancy cup of coffee costs more than that.  If you act responsibly and don’t go if you feel poorly, you’ll only lose three pounds.  If you are ill and go out and catch something you stand to lose a lot more than that.  And if you have the virus and don’t know it and gave it to your favourite exhibitor and killed them off you would hate yourself forever. You know if you are a regular visitor that many of the exhibitors have lifetime skills which it has taken them a lifetime to acquire, you know there are exhibitors who are wheelchair users.  I have written for over quarter of a century about Miniatura being the level playing field and Miniatures being the hobby where we value people for what they are and not for what they are not.

Please look after the miniaturists, definitely the best people in the world. Look after yourself, do not go if you are ill.

If you are well, go and have a fantastic time.  Have one for me.  I am very jealous.

If there is one thing that Miniatura has proved it is that the show is a survivor, of course it is, we love it.

So I’ll be back in the Spring, meanwhile feast your eyes on the exhibitor list which you can find by clicking on the link below.

www.miniatura.co.uk 

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Miniatura 2021 at the NAEC

There’s a blog title I never thought I’d be able to write.  Miniatura 2021!

The pandemic that stole our show has given us a new exhibitor we would not be meeting if the world had continued in the normal way.

Our silver lining goes by the name of Jon Trenchard, who would have been touring and acting if the virus had not given him the enforced leisure to continue with the house.  I know as I write that you may be either welcoming a soul mate who had the good sense, like you, to get busy with the house, or wishing (like me) you’d got on with the miniatures a bit more while you had the chance.

More of Jon in a moment, in his own words.

Meanwhile you may have spotted that I’ve misspelt NEC in the title of the blog, except that I haven’t.  The show this time is being held in the NAEC, which is the National Agricultural Exhibition Centre. A different place! On any map it’s about a fingernail away from the other place.  If you thought you were going to the usual place, please look it up and make sure you go to the right one.  It’s about ten minutes travelling time  by car from the previous location.  It has some differences you may appreciate, foremost that the site is much smaller, so there is no need for shuttle buses, there’s usually only one event at a time, which is the case with Miniatura, so you can’t miss the hall, it’s all flat and level and there will be wheelchair parking.

I have asked show organiser, Andy Hopwood, some tricky questions about the show, the virus and the venue and he is finding out the exact answers.  When he has found out to his satisfaction, I’ll be able to tell you.  Meanwhile, as always, information on the Miniatura website and the NAEC website, may help with your enquiries.  Links at the bottom of the blog.

Jon 1

Here is Jon looking through the door of his castle.  You may think you recognise the castle and the builder as they were in national newspapers some time ago.  You could classify Jon as a returning miniaturist, like so many of us.  When he finally left home, his family were happy to give him the castle he had been building since he was a child, but it was Covid that gave him the time to make it exhibitable.

I’ll let Jon tell you what happened next:

‘When Andy asked me in 2019 to exhibit the miniature castle I’ve been making since I was 12, I was so excited and flattered…and nervous.  Some of the interiors were nearly complete, and the exteriors were still an unimpressive mix of cardboard box and plywood.  How, after over 30 years in the making, even considering my professional commitments as a touring actor, could the castle be so unfinished?  That was nearly two years ago.  During that time, my theatrical work dried up, and the Miniatura show was postponed three times due to Covid restrictions. This has given us all time for hobbies; I’ve worked on those exteriors, and added a few interiors like a gatehouse with a working portcullis.  This period has also increased my excitement and my nerves about revealing my life-long project to other miniaturists.  I am in no doubt that many other miniaturists far excel what I can create from ‘bits and bobs’ like cereal packets, egg boxes and coffee stirrers, so I am even more flattered and amazed that my invitation to Miniatura still stands.  I am so looking forward to finding out what visitors to Stoneleigh NEAC think of my imagined ancestral seat, (to be displayed as if it’s a National Trust property, complete with hand sanitiser at the entrance), and I hope people will be very generous with tips on how to improve and create with new techniques as the mini castle grows bigger…’

Jon 3

As you can see Jon’s techniques are already impressive and I know the cereal box brigade will be sitting up and taking notice.  I wonder how much Jon’s familiarity with stage sets has influenced him, he certainly seems to know a thing or two about painting. This a sneak preview of the exterior walls that you are seeing first, here.  I hope Jon will not be too surprised to find visitors with their noses to his walls taking notes.

And here is Jon who you’ll be wanting to bombard with questions.

Jon 2

You will find Jon on an island completely formed of new exhibitors.

Andy is delighted with his all-new island.  I think this is a good idea, when they’re all in one place you will not miss the new talent at all.  There is nothing more annoying than getting home after the show to discover brilliant new talent making it to the newspapers or the television that you failed to spot, which is easily done in a show of such excellence.

I think Jon is on a steep learning curve, he has not yet realised that the natural state of a miniature house is unfinished, unless you’re making it as a gift or a commission or donation.  When he hears all the ‘entirely recycled dolls’ house’ stories, he’ll know what you know by looking at the pictures and reading the words.

Jon Trenchard has come home to Miniatura.

www.miniatura.co.uk

www.naecstoneleigh.co.uk

Tickets are still available!  (As I write.)  Numbers are limited, please click on the Miniatura link above if you’re interested.

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There and back again and back again and there.

The poor S&H needs a visit, I thought.  When things go wrong a hug from Mum is a help.

However, it is a long way and a long time since we went there.  The OH has found and been bought very, very expensive new shoes that help his crumbling feet but has not driven far in them; I will not drive that far with the constant whining noise in the next seat.  Did we need to go on one day, stay in an hotel overnight, as the mature are prone to do, apparently, or could we, taking into account feet, bladders, eyes and other bodily parts, do it in a day?

Therefore, it was suggested, we should go for a day out somewhere, some way away, not necessarily over the rainbow but a reasonable distance and see how we did.  Coronavirus restrictions being lifted, a visit to another town seems less risky than hitherto.  The OH has always wanted to visit Cambridge.  When he was the County Emergency Planning Officer of the next county he went there for meetings that were in a large venue on the outskirts but he had never ventured into the centre, reportedly pretty.  Moreover, a friend of his, who had been to university there, said it was an easy place to get around in.  Little he said, you couldn’t possibly get lost.

I am quite stupid, yes I am.  I took the word of a drinking friend of the OH, whom I have never met and, stupidly trustingly, did no research of my own.  I am your dim friend.  Oh yes, der.

Our destination decided, the fight in the morning about time of setting off was reasonably brief, so we set off in a huff, or other wheeled conveyance (my car which has the aircon) at just after nine.  I begged the OH not to drive to terrify me, eternal optimist that I am, the car was pointed east and we went.

The theme of the day, which was being lost was established fairly soon.  We arrived at a brand new stretch of road and the SatNav threw its hands up in horror. Warning Uncharted Territory.  CAUTION, UNKNOWN ROAD.  It announced repeatedly in sepulchral tones whilst showing nothing whatsoever on the screen.  Thus was the second theme for the day, not being able to operate the helpful electronic maps, established.

Ten miles of utterly uncharted A road and a couple of incognito bridges, like the Man With No Name in the cowboy films were sufficient to establish that we were in the Badlands of Unmapped Britain (next village three miles) but suddenly the virgin road surface gave way to the usual littering of exploded tyres and grit and we were back on the radar again.  The SatNav, suddenly gaining confidence came back on line and began to warn the driver that he was speeding.  It warned the driver:  Beware! three times before he lost patience and switched it off, approximately three minutes later we were flashed by a speed camera helpfully upping the cost of the trip somewhat.

See?  If I tell him he’s speeding, I’m a nag.  If the SatNav tells him, it gets switched off, and so, he will persist even unto fines or driver’s ED.  You really can’t tell some people (another theme for the day.)

Two hours, one restroom stop, some points on a licence and a pop quiz on the radio, later, we arrived on the outskirts of Cambridge.  We then relied on the driver’s internal radar, which does not exist, and, ignored all pointing from the passenger, who was reading the road signs and pointing: Look, City Centre!

‘No, it’s this way. I know this stuff.  I’m driving.’

After three one-way streets and twenty minutes of suburbs and tiny back streets, he finally caved in and asked a pedestrian, who, naturally pointed in the same direction the passenger had been pointing in for twenty minutes.

In the centre we drove gaily past the entrance to the multi-storey car park (which we were to exit in the wrong one-way direction  for the benefit of another camera, later,) and had a little tour around the one way system before we encountered it again.  Finally we parked up, and telling each other which level and area we had parked in and both instantly reverting to default setting of: mumbling noise from spouse, ignore, forgot where we were immediately.  Though it became urgently obvious that we were not in proximity to toilets at all.  Fortunately a lift decanted us into a shopping centre.  After a very quick trot down the stairs to the basement toilets (closed for cleaning) and a slower trot back up we discovered the main shopping centre toilets,  Mafeking was relieved and the day out began.

Half a street away we were in the centre of town which is a market place.  You could tell it was a area redolent of students by the fact that it was an area redolent of cooking smells.  Every cuisine of every street everywhere and a sweet stall, which enjoyed my custom until I remembered my diet and felt the weight of the bag which I had over my metal shoulder.

Fortunately as we ambled along we came across a very good bookshop.  Like most university towns, Cambridge seems to be well endowed with book shops.  Cambridge University Press is the oldest bookshop on the same site in the country and has been publishing and printing since 1584.  The OH has signed up for a distance learning course in Astronomy and Cosmology.  You may ask what the difference is, apart from Carl Sagan, who always said ‘Cosmos’ so cutely, and, indeed, the OH and I are hoping the course will enlighten him to the extent that he can tell me, because I would like to know.  He was keen to see if the shop had his coursework book, which of course, it had, though the Big River outfit has it for less, a fact the OH provided on his phone to the lady on the till, who lowered the price to match.  One course book later and a quick lecture book on What is Life by Mr Schrodinger, which seemed a good question in light of the demise of the little cat, for me, and we were out in search of the river with the OH carrying the bag.

The OH was very keen to see the river; punting on the river Cam has been going on for about a hundred years.  A punt is a boat with a flat end on which the sailor, known as a chauffeur on the Cam, walks whilst sticking a pole into the river bottom and pushing, walking along the boat and retrieving the pole.  Various novels and writings have explored the comic possibilities, so we walked via the wrong street indicated by the OH and his on-phone SatNav, encountering some students protesting, running along with banners, hotly pursued by the police, running along with radio phones.  It was all quite energetic and someone in the crowd said they were protesting to The Speaker.  In a town where everyone is encouraged to get on their hind legs and say something, this was a fairly equivocal statement, in my opinion.

Two wrong streets later we followed my nose and found the river and a pub serving lunches by the river and while the OH did the ordering I talked to a fairly excited couple, about our age, also there for the day.  Apparently just a few minutes earlier a punt had passed at a leisurely pace, followed by another punt, low in the water, just out of TV camera shot, laden with huge secret service men, bristling with guns.  The lady said that in the first punt there had been an important American called Nancy Posy, or something similar.  Nancy Pelosi? I enquired.  ‘That was it! Do you know her?’  Oh, that Speaker.

Yes indeed, Nancy Pelosi, hearing that we were out for the day, had decided to follow suit, just missing us by tourist attractions all day before popping into the Cambridge Union to give a speech and receive an award.

After lunch the OH decided he wished to see the Mathematical bridge.

The first street we went up was blocked off.  It was populated by some workmen straight out of Shakespeare’s comic scene with workmen to put in play ? talking to Lady MacB?. Cheer things up a bit?

Following some enjoyable banter I rushed after the OH up the next street on the left which was also blocked off.

The OH got out his phone with SatNav.  (Shakespeare would have put this in every comedy, if it had been invented.)  We trekked for a good fifteen minutes, and, as we then appeared to be on the outskirts of civilisation turned and trekked back.  The OH had had his phone upside down, helpfully, as you do.  We noted the Loch Fyne restaurant on the opposite side of the road and trekked back to where we started, to the cry of ‘Twelve minutes walking, it says here, twelve minutes!’*

I asked a person, who directed us to the restaurant we had had lunch in, where you could observe the Mathematical bridge by turning your head, very slightly, to the right.

I was extremely keen to see the Fitzwilliam Museum, which was founded in 1816 and has half a million objects.  The OH did not want to ‘Spend all day in a museum,’ though he never said at this point, or any other, that he wanted to spend all day tramping the streets, which is what we did.

Guided by the OH’s in-phone Sat Not we tramped the streets again for a lot more than twelve minutes.  Eventually I spotted two children, dressed as policemen.  The girl was very pretty, so ignoring my urge to ask her why she did not just marry a nice man and have some children, instead of tramping the streets, like us, we asked for the location of the museum.

Ten minutes later we discovered it was the building opposite Loch Fyne.

At the door we found out that, though it was free, you had to book.

Finally the OH put his phone to good use, booked us a spot in five minutes with an Email ticket that he only deleted twice before being able to show it to the chap on the ticket booth and we were in.

Gosh it was good.  There is some fantastic pottery, lovely Roman and Greek stuff and some fabulous Ancient Egyptian artefacts.  Actual linen clothing thousands of years old.  Quite wonderful.  We spent ages in the museum, had a cup of tea and decided we would go home because, for some unknown reason, our feet were aching.

It was a great day out,  famous people have been founding colleges at Cambridge since 1284. Seemingly every one of them has then had his statue carved and stuck on the building that he founded.  You can absorb a lot of sculpture just by tramping the streets, which we definitely did.

IMG_1486[381]

Nancy Pelosi was here five minutes ago.  She probably knew how to work the SatNav.

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Coming soon – Miniatura news!  It’s on, Coronavirus willing.  Details at www.miniatura.co.uk

*10,672 steps, a mere 100 calories worth according to the OH, who looked it up on his phone, or 400, according to my feet.


Posted in The parrot has landed. | Tagged | Leave a comment

Sadness.

Dear little Cleo the cat died today, 9/11. A fox got her, she was a small cat.

You may say that there are bigger things to mourn today.  So there are.  Man’s inhumanity to man, in any place at any time should make us sad.  You may say that a fox is just being a fox and a cat is just a cat.

Ronald Searle, the great cartoonist, described his time working as a prisoner on the Siam-Burma death railway in the Second World War.  Starving, one day he and some fellow prisoners found some kittens and played with them.  The next day they cooked and ate them.  Ronald Searle ascribed the way cats crept into so many of his later cartoons as the result of guilt.

If you lose a family member in a terrible way, though there are few good ways to lose someone, you can feel the loss is too great to mourn.  Most of us feel able to express our grief at the loss of a pet animal when we are unable to articulate the loss of a family member.

I think it’s because pets can’t talk. What can’t talk can’t lie, can’t manipulate, can’t call names, can’t break promises, can’t betray.  And there’s a lot of really bad stuff you cannot do without opposable thumbs.

I met Cleo when the S&H chucked out by a girlfriend, came home bringing his cats.  In the first flush of enthusiasm, the girlfriend had weakened when the S&H had kept putting ‘cat’ on the bottom of the shopping list.  I am quite grateful she did not succumb to the subsequent ‘horse’, though the S&H may have been pushing the joke as much as his luck.  He went to a dreadful breeding farm and rescued the little one hiding under the furniture.  Back at the flat the little one had two little ones of her own.  The S&H asked for advice; I suggested a trip to a vet unless he was planning on becoming a cat breeder; not an ideal career in a block of flats with a ‘no pets’ policy.  One kitten was rehomed and then the girlfriend and the S&H fell out and home he came with two cats.

A friend of mine said ‘What an imposition!’  I agreed for about three days, after which I was a gonner.  It had been twenty years since we lost our first cat, who lasted to nineteen and a half.  I felt the loss so keenly I said I would never have another cat.  In the same year my cousin’s son died of a brain tumour, he was only thirty, and we all lost beautiful Princess Diana in a terrible car crash.  The world seemed too sad to contemplate.  It was, for a while.

Then along came this little cat.

P2260234 (2)

the perfect size for sitting in a box, helping.

Or, equally, having a nap on the work you were planning to do

P4110543 (2)

so you couldn’t.

For five years I loved these cats, especially Cleo, who was little.  One of the undertall but a cat. Absolutely perfect.

But then the S&H married, had children and moved to a larger house with room for cats and children.

The day he came to collect the cats, she tried to dig her way out of the basket and I had to run indoors, crying (because I do not cry.  I am made of boiled nails.)

But she went to live with him, they moved to a bigger house and the cat was a shoulder cat.

cleo

Then I started breaking bones and got cancer and the surgery went wrong.  So I asked the S&H if the cancer came back, to bring the cat back to me and he agreed.

But here we are, or, rather, I am but she isn’t.

When we went to visit she was so pleased to see me, she would rip up the carpet.  How many people do you know who are so pleased to see you, they rip up the carpet?  I hadn’t seen her, except in emailed pictures since the Christmas before lockdown.  And now I won’t see her again.

I hope there’s a heaven for cats and dogs and pets in general.  All those little animals that live with us and give us unconditional love, no matter how rubbish we are.  Animals contribute so much to our lives.  They are excellent companions, teachers and time wasters in the most life-affirming way. 

And it is above all safe to love them because they cannot speak, safe because they only want a stroke, or a walk, or the big monkey with the opposable thumbs to work the tin opener.

You may remind me that I put my mother’s cat down, at her incessant request.  I did.  I did the same for the first cat, who had a rodent ulcer that was incurable.

And this is the problem with pets. We are.  We outlive them.  Unless we are old and frightened that we won’t.

Loss is the price of love.  It hurts your heart.  It sits, like lead, in your feet.  It makes the day of loss interminable and then subsequent days speed up, taking you further away from the loved one.  It gives your soul a right good kicking, until it is bruised.

The bruises of your soul are wisdom manifest: blue for knowledge, red for hurt, gold for the love that runs through every life of every sort, that makes the wonderful world.

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A step in the right direction.

This blog is firmly apolitical.  It’s about you and me and anything cheerful, because that’s what I got requests for twelve years ago.

However, I notice the British governments are finally taking notice of the financial truth which so many families have run into like a great brick wall across the future.  An ageing population has care needs which need to be addressed.

Nobody would look fondly at their little children and think that some day those children would make themselves ill trying to care for their parents.  If you are a similar vintage to me you may recall a television programme called Tomorrow’s World, espousing the view that in the future the advances of medical knowledge and ability would lead to us all living to be much older and have a great deal of leisure time to fill.  The corollary, that we would still be alive but infirm and needing help was not foreseen, and how to finance it all was not even mentioned.  The world was an optimistic place in the nineteen sixties.

As you know I have come up against the sharp end of dementia three times so far.  Every time has been destructive to me financially and health-wise, even though I was not the one with the dementia.

I started to work-out daily, twenty-one years ago.  I did that because I had a disease that made moving difficult and I was allergic to the medicine.  I did not think at the time of a connection between dementia and inactivity.  My mother-in-law had Alzheimer’s but at the time she was very active.  She used to run keep fit classes.  I believe her dementia may have had something to do with being the youngest of fourteen children.  Children produced from elderly genetic material are likely to have in-built faults, nature doesn’t like old parents.

Subsequent encounters with sufferers of dementia convinced me sufficiently that their inactivity was, at least, a contributory factor to the development of the disease to keep me doing the workouts.  I think getting the blood rushing through your brain, contrary to the dictates of gravity, is like running the tap swooshily enough to wash the gunk down the plughole.

Causes of dementia are not yet certain.  Figures for dementia look set to follow the cancer statistics in blossoming.  If we are not to cripple the future with care of the elderly and not so elderly, we need more helpers and finance.  If you’re a regular reader you’ll know the financial cost to me of caring was half a house the first time and a whole house the second time and cancer both times.  There are and will be many people in the caring role who do not have a house to sell to finance care of a relative but be stuck with the problem anyway.

I am glad Parliament is addressing the problem.  I have not the slightest doubt that some tax payers will complain that they should not be asked to fund someone else’s disease.  However, no one now thinks cancer charities are nothing to do with them.

I believe in a relatively short span of time everyone will agree that the problems of an ageing population are the problems of us all.

The world is a very unequal place. Some people are not even free to call their lives their own. No one who was ever a teacher would fall into the mistake of believing we are all born equal.  We are not.  We may start out healthy and sane and end up crippled and sick. We may have children who have special needs.  We may catch diseases and die too young.  All these and more traps for the unwary lie in wait and we cannot predict what will happen tomorrow.*

But we can predict that if we live long enough we will grow old and probably need help and that the people helping us will need support.

I, for one, am very glad that a government is starting to address this problem.

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*Therefore, enjoy today.

Posted in Dementia diaries. | Tagged | Leave a comment

Resentment.

Regular readers may be surprised that I’m visiting the dementia diaries again.  If you are a new reader who has found this blog by putting dementia into a search engine, hello.  There is information here, accessed by clicking on dementia diaries in the bar to the right of your screen. The experience was gathered during five years of care for my demented mother, which I blogged.  Every agonised step of the way is there, with nothing omitted.  The funny things that happened, the frustration with various agencies, the reactions of the wider family, the neighbours who stopped speaking, are all documented as  they happened to me and my mother.  The diaries evoked a response from others in the same situation, world-wide.  I wrote them because it helped me and helped others with the same difficulty.  Despair is likely to strike in the middle of the night or at the end of a very long day, when the world is asleep and there is no help, at which time learning from a screen that someone else has been where you are and lived to tell the tale might be the only help you are going to get. If you are new to this and wish to email me about it just click on the link at the end of this bit of writing.  Whatever awful thing has occurred or how inept your response to it, I promise will not shock or stun me, and I will never say ‘You did what?  You idiot!’, because I am visiting this disease as an amateur assistant for the third time now.

The first time was just after I married, when my new mother-in-law was diagnosed with Alzheimer’s disease, back in the late 1970s.  Nobody knew what it was, you had to explain that it was a pre-senile dementia.  My poor mother-in-law, who I scarcely knew, was only in her fifties.  My father-in-law, having two older sisters, had decided long ago that in times of trouble the women closest would help.  So he drove himself and his wife from the North East to Scotland one weekend, where his sister-in-law lived in a big house with a guest bedroom; the following weekend he drove down to the Midlands where my husband and I were just settling into our new house, which had a spare bedroom.  It was a four day long weekend.  As I reached home from the school where I was a teacher, my in-laws would be sitting in their car on the drive.  They would wait, on Monday, until I returned from school to leave, and in between I was nurse, cook and bottle washer while my father-in-law and husband sat in the pub.  At the end of it all I was in debt to half the value of our house and had cancer for the first time.

The second time I became the carer on the death of my father.  For a couple of years, when I visited, he had been standing behind my mother making whirly signs beside his head.  On the advice of a couple of doctors I let sleeping dogs lie.  Again the disease was of a five year duration from diagnosis, although the specific type of dementia was not able to be identified during my mother’s lifetime.  At the end of it I would have been in debt to the tune of half a million pounds, but fortunately my parents lived in a town where the houses were as expensive as the private health care.  One offset the other, so I didn’t have the debt, just the cancer.  The surgery to save me was bungled so I am still suffering intestinal problems and a lot of pain three years later.

This time round it is my father-in-law’s second wife who has been diagnosed with Alzheimer’s disease.  She is taking the medication which prevents further formation of the plaques in the brain, which characterise the disease and prevent the brain working properly.  This is a new invention since my mother and mother-in-law were diagnosed.  The situation has been complicated by the pandemic.  During the lockdown my Step-Mother-In Law was being kept company and helped in isolation by her son who lived in the same town.  He committed suicide in March, prior to her diagnosis, leaving his sister, who has already had breast cancer and lives at a distance, as sole carer.  I have been talking to SMIL every day on the telephone from the beginning of the pandemic but am unlikely to visit so far away.  My greatest use to her daughter is moral support and continued telephone contact every day with SMIL.

I am also in weekly telephone contact with a friend whose husband has the disease, who also cared for her difficult mother through it and ended up with cancer.

You can see why nothing you say about the disease will shock me.  I have a wardrobe of tee-shirts on this problem.  Accessing medical and daily assistance is as near as your search engine.  It became evident, last time round, that provision of help is various round the world, but that there is some knowledge and experience wherever you are reading this. The problem of how to help demented people and their families and especially how to help family members who are direct carers and prevent them become ill themselves, seems to be evident in all developed societies.

In my dealings with this disease I have noticed that the attitude of carers to the problem and to the sufferer can make a difference to day to day life, both for the person with the disease and those trying to help.  As the disease progresses, the sufferer’s brain is no longer able to function normally but to the very end will be able to pick up on nuances in behaviour and attitude of the carer and react. If there is one thing worse than somebody loopy round the bend (to express it in the vernacular), it is someone loopy and angry with it.  Anger and frustration are typical for the sufferer, which you can understand readily; if your brain is not working the way you want it to, that’s annoying.  If someone who is meant to be helping is annoyed with you because your brain is not working and you can’t make it work that’s very annoying.  If all that happens and you have lost the words to express it, you are likely to strike out.  Therefore to forestall this unfortunate characteristic of later stages of the disease as long as possible, the helper, whose brain has to work for two people, needs to modify their responses.  The more calm, soothing and reassuring they can be, the happier and more confident the sufferer, the less fraught the situation, the more pleasant the day, the less likely the carer to get sick later.

If you are the primary carer, looking after yourself is exactly the same as looking after the sufferer.  In fact it is more important, because if you go down, they are stuffed.  All agencies will tell you that, admitted to care homes or hospitals, dementia patients go down hill.  Memory is one of the first casualties of dementia.  Everyone is happier and more confident in familiar surroundings. If you take a person who is struggling to understand, away from everything they know, they will be lost.  It may be that a formal care facility will be the eventual destination anyway.  Postponement of this situation is desirable.  As the carer, you will be alarmed at how little you are able to help your demented person, once you have given up daily care of them to another agency elsewhere.  You will be powerless.  Care homes have their own rules, they have to, to work.  Your aim, therefore, as primary carer is to keep things ticking along as normally and happily as possible for as long as possible.  Happy declining years of the cared-for are less likely to make you, the carer, ill eventually.  Daily strife and misery is more likely to make you sicker sooner.  Therefore aim for happy.

The eagle-eyed reader (that’ll be you) may have spotted that this column is entitled ‘Resentment’.  Entitled!  Entitled!  Who does she think she is, expecting everyone to do her bidding while she sits there like lady muck.  Entitled!  I’ll give her entitled, you can’t even see there’s anything wrong, I bet she could remember if she tried, and now she’s moaning and I’m expected to deal with it, as if I didn’t have a life of my own!  It’s disgusting and, what’s more………………

The adopted family in which I grew up didn’t just have resentments, they dandled them, paraded them, dressed them up in bonnets and took them out for a walk.  They are not alone. In any family: What she said to Uncle Ernie at Our Maggie’s Wedding can provide a topic of conversation that only dies with the participants.  I was fortunate, a decade ago, to finally realise that I had married an alcoholic and had been raised in a family, members of whom had this disease also. A doctor pointed me to Al-Anon Family groups, the support organisation for family and friends of alcoholics. In the weekly meetings many topics of interest are discussed which are evident when living in proximity to alcoholics.  One of the topics is resentment.

Resentment, which the dictionary defines as showing or feeling indignation at, or retaining bitter feelings about, insult or neglect, is so common in families of alcoholics, it’s almost a marker of the disease.  Alcoholics under the influence of a drug can exhibit behaviour which is careless, rude, aggressive, challenging, destructive and hurtful at least.  In withdrawal, the brain, devoid of the alcohol on which it depends as fuel, can cause similar behaviour. As that disease progresses the alcoholic needs more alcohol to obtain the same effect, suffers more from withdrawal and is eventually trapped in behaviour and mood swings which will damage every relationship, starting with the close family and working out.

And so, of course, does dementia.  The pre-frontal cortex of the brain, which houses all of our more complex and delicately nuanced interactions is destroyed by disease.

If you ask the loaded question: Does my bum look big in this? of a healthy person whose brain is fully functioning, you may come away from the encounter glad that you have beautiful hair or unusually lovely extraordinary brown eyes.  This is because their pre-frontal cortex is functioning. If you come away from the encounter considering applying for a job as a model, even though you know you are four foot ten, sideways, then their pre-frontal cortex is working very well indeed.

You will not have such luck with an alcoholic, unless they are drunk, or a person with advanced dementia unless they love you very much.

Constant, sometimes seemingly daily, damaging encounters with a pre-frontal cortex that is not working can build up resentments at a great pace.  As I learned at meetings, the only person hurt by the resentments is you.  Resentments can chain you to the past so thoroughly that’s it’s difficult to operate in the present.  If you approach the demented person bristling with indignation about something they said, or something you had to do for them yesterday, they, who cannot express anything helpful, will pick up on your resentment instantly.

I personally believe the brain in disease retreats to infantile clues as to the demeanour of the carer. A baby knows if you are tired or cross, without you having to explain.  They read your expression and tone of voice.  If you had ever tried to care for a baby late at night when you had little patience left, you would know all about this.  The more the baby screams, the more tired and desperate you become.  The more tired and desperate you become, the more the baby screams.

When your brain is working well, you can detect and modify your behaviour to finely nuanced clues.  Salesmen do it, psychiatrists do it, children do it.  It is a matter of survival and the oil that keeps the wheels of society turning.

In the damaged brain, the connections that interpret incoming signals and modify outgoing communications are lost.  Although the wonderful, plastic brain will be adapting like crazy, or more specifically, like sane, it cannot keep up with the destruction.

Therefore holding on to resentments about any behaviour evinced by the demented person is a waste of your valuable time.  At the start of the disease, strange behaviour and unsuitable utterances may be a surprise.  Caregivers may try to deal with the utterances by giving them equal weight that they would give to similar declarations coming from sane people.  As the disease progresses and it becomes more obvious that these are not the utterances of a sane mind it is easier to take them less personally and respond more effectively.

It is unfortunately a marker of the disease that the closest care giver gets it in the neck just because they are there.  The sick person needs to bemoan their lot, as would you with a diagnosis of dementia, and the closest caregiver is just that, and in range.

The reason I am writing about dementia and resentment now is that yesterday when I rang the SMIL, the phone was answered by a friend who was visiting.  Visits from those who are not family members will dwindle as the disease takes hold but are beneficial, when cheerful, to the demented person.  They are respite for the primary caregiver and to be encouraged as long as they last.  In between praising the friend, I became aware that she was very resentful.  She had arrived to find the SMIL in pain and mostly, sitting in the chair whispering and moaning.  The SMIL has back pain, largely because she doesn’t move much. She gets up in the morning and sits in the chair.  As the carers coming in four times a day make the meals, she only gets up to go to the toilet or back to bed.

The friend decided it was her job to remove the pain.  She had rung the doctor’s surgery, which was closed for training and then the SMIL’s daughter, who was at work. Consequently the visit, which the friend had hoped would be a good thing she would be doing, but for a limited amount of time, had suddenly become a lengthy deed until the daughter could be contacted, medical assistance found or some other remedy applied in the unspecified future.

I could hear the resentment in the friend’s voice and I could hear the SMIL responding to the situation, which the friend was obviously finding difficult, by crying and moaning.

I chatted cheerfully to the SMIL, while the friend had a breather in the kitchen.  Half an hour later the SMIL was a little improved and I suggested to the friend that she only wait until the carers turned up, which was in another half an hour.  The friend was slightly mollified, so I praised her a lot for going at all.  She cheered up, the SMIL cheered up but I’m willing to bet the friend will find reasons not to visit for some time.

If you decide to interact with a person with dementia, doing so resentfully or angrily will not be helpful. The ideal mindset is to do the research early in your contact.  Doctors have numerous leaflets, The Alzheimer’s Disease Society has a website and offers online support.  Having some idea of what is in store is helpful.

Of course you can always dodge the bullet.  You can bung your relative in a home, sell their house to finance it and never visit.  In my mother’s eventual care home I met people with relatives who had done just that.  I’m sure it would be safe to do so if you were absolutely certain it would never happen to you.

My Victorian grandmother used to say: Don’t do as I do, do as I tell you.  As a teacher I can say with great certainty that children do not do what you tell them; they copy what you do.  This is how we evolved and still how we learn.  How you care for your seniors is being watched by your juniors.  In times of stress behaviourists tell us we revert not to our education, but to example set in our childhood.  And, as they say in the Lottery adverts, it could be you!

Why dementia is on the increase is the subject of research.  I think inactivity has something to do with it. During the pandemic many people who were normally very active spent the day sitting at home.  For years before she became ill my mother used to get up and sit down. She had cleaners always but years ago, when there were fires to be laid and lit and no car to go to the shops in, she moved a lot more.  She believed that idleness was the mark of a lady and felt it a privilege not to have to move or work.

During the pandemic when I rang SMIL and asked what she was doing she replied that she was just sitting.

All the blood in your body goes charging through your brain every seven and a half minutes. Moving helps it to whoosh through your head, defying gravity, clearing out the far reaches of your synapses, refreshing all the connections, keeping your brain alive. We are the first humans in history who can sit and watch a screen all day long.  We have not evolved yet to overcome the dangers of this inactivity.   Our brains are huge for our size, they utilise a fifth of the fuel we take on board each day, they require hours asleep in down mode to keep healthy.  You are your brain.

I will never tire of saying how wonderful you are if you are managing this disease for someone, helping someone with the disease or just turning up now and again and being a friend.  The job is possibly the most difficult you will ever undertake but few things will ultimately make you feel that you have realised your potential as a human being so fully.  Don’t wait for the aliens to land.  All there is, is people.  Be kind to them as you are one, secure in the knowledge that what goes around comes around.

If you are at the start of this journey be like Captain Pickard on the Starship Enterprise, get your crew at the consoles, buckle up and Engage!*

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*In fact there were no seatbelts on the Enterprise, despite regular Photon Torpedoes and half the saucer section going missing.  In the 60s version the crew ran backwards and forwards shouting, on the bridge, under attack.  Twenty years later they were just leaning slightly.  Aim for leaning slightly, if at all possible.


Posted in Dementia diaries. | Tagged | Leave a comment