On the floor.

This is the second post today, scroll down for a non-dementia posting.

SMIL is not in a good phase.  Her downward progress, when you consider that this time last year she was at home, has been rapid.

I had had the best conversation with her for some months just the day before yesterday.  Her daughter emails that she notices her mother is brightest just before it all goes wrong and she gets worse.  She had been to visit the day before, had taken her mother out for a push round the village and had complaints that there was nothing to do.

The day following this SMIL and I had an almost normal conversation.  She remembered she had been sent photographs and said they were good.  She told me her daughter had taken her out.  I told her about a job interview the S&H had had and she expressed surprise at the possible raise in salary.  She said she was well and enjoying the weather and, after further chat, eventually bade me good bye.

I emailed her daughter with an account of the conversation but that evening received a return email, things had gone wrong.  SMIL had calmly asked for a phone to contact her daughter.  Then she said she was being abducted and that her daughter needed to get the police.  In the background the daughter could hear a member of staff asking SMIL to stop kicking her.  Then SMIL hung up.  Her daughter was, of course, distraught.

Today when I rang, I was told SMIL has taken to the floor.  She is either lying or sitting on the floor and refusing to get up, so the staff are making her comfortable on the floor.  I sent love.

Neither my mother, nor mother-in-law took to the floor, though my mother had phases of refusing to sit in certain chairs and my mother-in-law would only sit in the middle of the settee, which was inconvenient at a time when we had a limited number of seats.  My mother did once fall at home and was unable to work out how to get up.  A senior worker was sent for.  She had a well-practised routine for retrieving the floored, involving holding hands and mirroring the position of the demented fallen.

I am blogging this to let you know, if you are new to this, that any and all behaviour can be expected.  Nothing is unusual if your brain is on the fritz.  SMIL’s daughter was wondering if her mother was trying to tell her that she had been wrong to take her from home and that she needed to return.

Reading messages into the utterances of the demented is not a helpful task for relatives.  I compared it to standing under a neon fish and chip shop sign that had an electrical mis-connection and attempting to find messages in Morse code in the flashing on and off of the sign.  There is no message, the sign is on the blink.  It is faulty and not working.

There is no doubt that demented people do better in their own homes for as long as it is possible or practical to keep them there.  Familiar surroundings confuse them less.  If you had unlimited funds you could just wheel in the private nursing team.

The OH’s aunt ended her days in a facility run by nuns.  My father’s cousin-in-law’s solicitors sold two London properties to fund care in a private hospital.  My mother-in-law was removed every fortnight to alternate family members until she finally went into an NHS hospital.  My mother’s house was re-mortgaged by me to fund private care at home, she then was moved, when the money ran out, to a posh care home in her own little flat.  Because of her geographical situation away from family after her son committed suicide, SMIL was moved early into a nursing home.

But all, wherever they were and whatever stage of dementia they were at, exhibited strange behaviour.  It did not mean that relatives, friends, or professional carers had done better or worse.  It just meant that their brains were not working in the normal way so that normal had little meaning for them.  How can you behave normally if you don’t know what normal is?

SMIL’s daughter routinely beats herself up for sins of omission or commission.  So did I.

To be tasked with caring for someone who would be classified just a hundred years ago, as insane, is to take on a thankless task.  If you are expecting to store up rewards in Heaven, or wherever you are hoping to turn up after life, know that the road to get there will be uncertain of poise and rocky underfoot and that someone will have arranged all the rocks point upwards just as you put your foot down.

But a worse thing in my book, or blog, is to dodge the bullet and leave the task to someone else.  Even worse is to supervise or criticise the person taking on this task from a safe distance.  This happens much more often than you might believe.

And if you are a long term reader, you know before I write it that the best reason for stepping up is that one day it might be you.

If you are able bodied the best way to avoid it being you, that we know of so far, is to move that able body.  All the blood in you goes charging through your brain every seven and a half minutes, taking out the trash, bringing oxygen to the bits that need to grow and live and keeping your brain, where you live, a nice place to be.

Don’t just sit, scrolling through a device, put your device down and leap around shouting that you are sane and wish to continue.

And if anyone gives you a funny look, you can tell them I’m going to do it too now!

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Vegan patches

I am attempting to distract myself with work.

The OH announced he has booked a holiday without me in September, so I am keeping busy with work and trying to forget that it is at least eleven years since I had a holiday.  I have not had much experience of holidays; if someone is taking a holiday in a pub every night there is no money left for anyone else to go anywhere.  There was money when the mortgage was paid off.  We went to Rome and I took notebooks with me expecting to interview someone for a magazine.  I really don’t have the concept of holidays.  Christmas is a festival of work for women, in my opinion.

So, I am keeping busy.  I have just had another do with my intestines, so the busyness is confined to stuff I can do sitting down, for a while.  The S&H and his bride and children inherited a green leather Chesterfield sofa from my mother.  Last autumn the bride decided the sofa she had had since she graduated had had it.  Having sat on it, I am able to confirm her opinion.  So I offered to buy a new sofa for Christmas and they found a very good one, leather, just about half price in a sale.  It is very nice and very large but not green like the other sofa.  It is light tan.  It lives in a large lounge but you can still tell that the two sofas are very different colours.  One is dark green, one is light tan.

I thought perhaps that leather cushions in a mixture of colours might marry the two, so I am going to make them.  I had bought from a shopping channel sale ten six inch square leather pieces in varying colours but had been thinking about it for a long time.  Then the OH announced (more announcements) that despite his armchair having been renovated about five years ago and the cushion re-stuffed a couple of years ago that his seat, much like some politician’s, was becoming uncomfortable and that he required new padding.  There is a place in the next town that provides safety foam stuffing and has a suction machine that can shrink it and pop it in so that the end result is tighter than (please provide your own simile here, thank you.)

However when we examined the cushion, the fabric underneath was split, rendering the cushion unstuffable.  The OH was in  favour of duct tape but I cut a piece from strong woven curtain leftovers and machine sewed it right round the edge on to the leather turnings.

The cushion, repaired, was taken and stuffed tighter than a turkey (you can have that one for free), so that now the OH complains he is sitting on a mound.

Well, just as long as he’s happy…..

Encouraged, I got my leather scraps from the loft and the box I use for doll shoes and got started cutting.  As the existing squares are six inches  the rest would have to be too, as I believe my machine might be good for straight lines in leather with the correct needle and thread but I have doubts about any fancy pattern with strange corners.  Strange corners are the bugbear of patchwork, in my opinion.  Moreover, a six inch square is quite a large piece to find in scraps.  To get enough I have had to utilise some leather skins inherited from my father.  Like everything he did, these are extremely substantial; I anticipate problems machine sewing leather of varying thicknesses together any way.

So one way and another, square patches it is.

I thought that on two sofas you really need  two cushions per sofa.  At present the DIL has twenty-four inch square cushion pads without covers.  They do look quite big, so I have settled on eighteen inch cushions, which require nine patches per side, eighteen per cushion, thirty-six per pair, seventy two per set.

Yesterday and last night I cut sixty two six inch squares and marvelled at how easy it is, even with a squared cutting board, a six inch quilting ruler and a sharp rotary cutter, to deviate from an exact square.

I have done that bit but may need to cut surrounding strips to make up the full size, once the turnings are allowed for, and the zip.  Of course, the cushions will not need washing but in time they may suffer from flatness, or even hollows, and I can’t see anyone else unpicking them to get at the cushion pads.

There is another problem that makes me feel now is the time to do it.  Though, to be fair now is often the time to do anything, if you want it done.

I am suffering from creeping veganism.  I am already piscatorial, by this, in the absence of a swimming pool, I mean that I eat fish.  For a month I have replaced my marine collagen capsules with vegan collagen capsules.  What I have got for this is painfully splitting skin.  So I am on the edge of a dilemma anyway.  Should I have qualms about using the  left overs from the fishing industry to bolster my ageing carapace?

I was brought up by a Boy’s Own Paper reading father, weaned on The adventures of a five guinea watch and tales of derring do in Darkest Africa (or the Pole, or the Equator, anywhere other than Sheffield), all of which featured guns and some poor livestock getting shot.  Throughout my childhood there was a shotgun in the hall cupboard.  My father thought leather was wonderful.  On the floor we had Bertie Adams, a real poor dead leopard with a green felt fringe and a stuffed head.  I loved Bertie Adams and was upset when my father put him in the window of his retirement antique shop and even more upset when he sold him, regarding him as family.  (Bertie Adams, that is.  Once a dealer….my mother had been warned not to stand around in a bath towel in the winter when she was a bit pasty just in case she was mistaken for a statue and sold to the highest bidder. Opinions were mooted that this would not happen once she opened her mouth, other opinions asked when she had ever closed it.  Wit in families can be quite cutting edge.)

This therefore is the time to embrace the leather before I start feeling very sorry for long gone cows or have to have a funeral and bury the three piece suite in the garden.

I’ll let you know how I get on.

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Sleep that knits up the ravelled sleeve of thingummyjig.

I do not have problems with sleep.  I get into bed and close my eyes.  End of.

However.

I bought us new pillows from QVC.  I did this for several reasons.  They (assorted) tell you you should not have the same bedding forever.  Most of the weight of your pillows is dead dust mites and their faeces.  Lovely.  Also, several year old pillows that I have slept upon look no different but the OH’s pillows go a strange, museum worthy hue.  You could use them to set dress a seventeenth century drama and no one would argue with you.  And they go flat.  You are supposed to sleep on one pillow, whereas, if I am having digestive troubles (ooh me troubles)  I need three to begin with, even eating no later than eight.  Then there are the sneezes of the OH, which last, as the Kinks were wont to warble: all day and all of the night.

Accordingly when eight pillows appeared in a bundle for a bargain price with anti allergy covers, I bought them.

I then went through the massive palaver to book a slot at the dump to throw the old ones away.  As I’m sure you recall, the OH cannot do this as he has been banned from the dump.  Such a help.  After a mere quarter of an hour online filling in forms, the:  Tickets!  You’ve got Tickets!  landed in my inbox and a simple twelve minutes later (because the computer and the printer are not friends yet, despite having been introduced frequently)  I managed to print them.  I placed them on the notice board together with proof of my address and my residency, because you just know the tendency of us council tax payers to drive twenty miles to a different dump for a lark, and I was ready.

I did not, of course get banned from the dump.  I was greeted with waves and kindness, made a burly dumper with a paper parasol laugh  and the folk at the charity shop banter for five minutes.  Sweetness and light it was, I don’t know how the OH does it.

And so to bed with new pillows.

Two too deep, one too shallow and domed, so your head rolled off.

I did toss and turn.  I cannot lie on the metal arm until later in the morning but had just fallen asleep when an urgent alarm woke me.

It was the alarm clock telling me it wanted new batteries.

So, domed, flat, domed, flat, one pillow folded and springing open, domed, flat, folded, chucked off.

Finally I dropped off literally and figuratively, only to be woken at three eighteen by what felt like a scratchy leaf falling on my forehead.  Half asleep I grabbed it and hurled it away from me.  I woke, put the light on and looked.

It was a dead fly.  A large dead fly.

When does this ever happen?  Is it an omen for something?  Where is a spider when you need one?  Why, given the size of the room in comparison to the size of my forehead, did it fall on me?  Had it been sitting on the light, dead for a while before it succumbed to gravity?

I buried it in the bin, with neither service nor hymn and had, momentarily, returned to my slumber when woken by the insistent doorbell at five past seven.

Five past seven!

I sprinted downstairs, opened the inside door, raced to the kitchen, found the key, opened the outside door.

‘Yewer nammmi?’

‘Pardon?’

‘Yewer sewer nammmi?’

‘Um Laverick.’

It worries me to think that somewhere in the world a child believes that the pinnacle of ambition is to cross the channel in a dinghy and get a job waking people early in the morning delivering printer cartridges.

I would have gone back to bed but I’m awake now.

So I thought we could have a chat.

How do you sleep?  If it’s OK don’t change a thing (voice of experience.)

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Clearing out the garage.

I have reached one of those miserable phases after a bereavement when doing anything much has little appeal.  I can’t even get myself together sufficiently to send a sympathy card.  I did speak at length to family members last week to express my sympathy and shock but really that doesn’t cut the mustard because I know the bereaved husband, who has Alzheimer’s, will not be able to be looked after the same way by his son as he was by his wife. The husband and wife I knew so well as regular Miniatura exhibitors were among the best and genuinely world class.

SMIL too is difficult to maintain contact with.  She was dumb for many weeks.  Absence of words can affect dementia sufferers in varying degrees.  I think it has a lot to do with blood circulation and gravity; the more you sit around, the less inclined your blood is to make the tiresome journey, against gravity, up to your head.  If you pat yourself on the top of the head, your words are situated under your hand – insufficient blood flow will affect the words first.

SMIL now is having a resurgence of words, unfortunately last conversation this was mainly in the form of shouting ‘Shut up!’ at other residents.

The OH has booked a holiday alone in September.  Not that I have a valid passport anyway.

I have been working in the garden, which always cheers me up but the house at the right angle to us in the next road has a tree in full leaf which plunges my back garden into shade by early afternoon.

All in all it’s a bit depressing round here.

So, I’m clearing out the garage.

It seems amazing to think that just over a couple of years ago the garage was a space empty save for the elements raining into the builders’ cups of tea.  Where did all the junk come from?

Well partly it’s the lockdown library which occupies a quarter of the garage.  It isn’t just the cart to wheel in at night, there’s also the jigsaw trolley.  On two boxes are the bagged-up books with bookmarks, waiting to fill spaces and a garden table with all the paraphernalia for cleaning, sorting and bagging the books.  To think it all got started with one small table that got nicked.*

One entire wall is gardening stuff.  It’s amazing how much stuff you need to plant seeds, which are really small, in dirt which is everywhere for free.

Opposite there’s the decorating shelves and wall.  Not only am I incapable of chucking out half a pint of matching paint**, the palaver you have to go through to leave empty paint cans at the dump is mind boggling.

Then there’s all the packaging.

I spend probably an hour a week up at the post office posting things.  I was quite postal to begin with.  I’m a one woman backlash against the online takeover, believing nothing beats a nice letter in the post.  My grandmother told me the tale of her complaining to her mother that she never got any letters. ‘How many have you sent?’ her mother asked. Just before my friend died my new computer found an old photo of her and her husband setting up at Miniatura in their heyday.  How glad I am that I printed it off, made it into a sturdy card and posted it.  I send SMIL photographs of the grandchildren.  I make them into zigzag books which she can easily manipulate and enjoy with no words.

I send a lot of parcels to the grandchildren.  Latest was packs of summer pyjamas, L was instantly sick on hers, I was informed.  Fortunately they were packs of three sets each.

All this posting would cost more if I didn’t recycle packaging.  This of course means you have to store a lot of it because you never know what size of item you are going to send until you pack it all up.  So there is a huge box of padded postal bags.  The box is going to have to move so that……..

I can put the kiln on!  Yes, under all of that are the kilns smothered in combustible stuff.

A little kiln needs a clear eighteen inches around it to fire safely.

In my head new fairy dolls are waiting.

In the near corner behind the kilns, the slip.  I shall have to buy new Milliput, it will have gone rock hard by now.

And that may lift my spirits.  Getting on with something proper.

I was sending manuscripts off to agents for a couple of years but I am currently weighed down with rejections.  Some are so inundated with lockdown novels they don’t even bother to reject you:  If you haven’t heard from us in eight weeks, assume we hate you and move on.

So, garage it is.

And then I will have to book a slot at the dump, who are still in lockdown mode because they deal in rubbish and will not help you if you bring heavy things.  And, of course the OH was banned from the dump, so it will have to be me.

My horoscope says I’m in a one in twenty years success phase, with everything I touch turning to gold.

Which I will turf out of the garage and take to the dump just as soon as I can book a slot.

*

P4090800 (2)

** Last colour but two.

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A sudden shock.

The Dementia diaries have had some unexpected consequences.  Having written down what I discovered when caring for my demented mother has meant that much of the useful stuff was committed to memory.  As I am incapable of minding my own business, I have found myself answering musings or direct questions and occasionally been approached by a new carer who has heard about the diaries.

Just at the start of the pandemic, a friend on the Christmas card list, who knew about my mother and who had had a similarly difficult mother, rang me for my opinion of her husband, who was doing and saying strange things.

The upshot was that she was added to the list and for the last couple of years I have rung her once or twice a week to support her through caring for her husband, who has Alzheimer’s.  She herself was in remission from lymphoma and not exactly young but highly intelligent and coping well with all the hurdles that are placed in the way of the carer on almost a daily basis.  She found herself drowning in paperwork but tackled all the letters to doctors and hospitals, methodically.  She found a release and time to herself in gardening.

In November an adult son who had sold his house but not yet bought another, moved back in with his parents, temporarily, bringing his dog, who was a handful but a distraction.

It all seemed to be going as well as could be expected.  I rang her yesterday to be told by her son that she had just died of a brain aneurism.

If you are the principle carer, what is your plan B?

I have frequently written about the importance of caring for the carer.  As you know, I have had cancer twice, each time after years of caring for a demented family member, I think cancer is my  response to stress.

What if your response to stress is something less obvious?  What if the stress of caring is affecting something inside of you, explosive in nature but hidden?

Just putting the cared-for into a care home is not the answer.  It has to be funded and the funds have to be administered.

My father’s cousin’s wife, who was childless, arranged for a solicitor to administer her affairs.  He sold her house to finance her care, ringing me, a possible inheritor, to tell me his actions.  I naturally gave my blessing and together with cousins received a little keepsake – a little snuffbox with a newspaper clipping.  It is on the desk before me as I write.

If you are the demented person and have no one to care for you but have a house or possessions that will finance your care in a place of your choosing, selecting the solicitor as soon as you feel able after diagnosis, will buy you time and choice.  As the world turns, most solicitors will not be surprised to be asked, this is a common task and they will have a scale of fees already.  You can search online for specialists, or ask locally.

My friend who died, found the travelling to the special hospital with her husband very stretching.  She did not drive and was dreading the day her husband’s licence was revoked.  A local friend who had to go to the next large town to a special hospital for cancer treatment used the local taxi firm until she had made friends with one of the drivers, who was kind and concerned and drove her door to door.  If you are researching solicitors, locality might be something to consider.  Someone established and a bit more expensive could be preferable to distant cost cutting.

If you have other family members, perhaps those who have absented themselves from the caring, they may need to know the facts in a rush.  I carried with me, throughout my mother’s care, a huge bag with folders with absolutely everything, from medication, to hospital appointments to carer’s phone numbers, friends who called to her house and who they were, and the contact details of the window cleaner; the lot.  I did this after she was whisked into hospital the first time and they asked what her medication was and what she was allergic to, and I didn’t know the answers.

Come to think of it, the arm I carried the giant bag on was the one that broke, so maybe you could put the heavy files on a mobile or similar, though not if you are as adept at losing stuff on a mobile as the OH.

At the very least you need the facts written down and put in a place, ideally one where the demented person cannot find them and turn them into confetti (yes this happened) or hide them.  Then you need the place to be easily discoverable by the family member or at least a one word clue if you are run over by a taxi  taking someone to an appointment.

If you can gasp: ‘Look in the fridge/ desk/ sock drawer/under the clock/ saucepan cupboard before conking out, you’ll have contributed to the smooth running of the universe and much more importantly, the continuing care of your liked one.

And that, as you contemplate the tyre tracks across your suddenly flat stomach, but not in a good way, will be a source of great satisfaction and, upon your arrival in Heaven, you will be directed to the queue for those who have done their very best and are everyday heroes.

Where you will find my friend, who I shall miss.

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Dangerous days out for the elderly.

On Friday it was my birthday.  I was old.

Nevertheless it was decided that we would venture from the building, go somewhere else and return in celebration.  A little bottle of something fizzy was put in the fridge in case the day went tits up.  It was replaced upon our eventual safe return by a big bottle of something fizzy by the OH who has little truck, almost a Dinky toy, with small bottles of anything, and was, under the circumstances, justified.

We went to the Jewellery Quarter of Birmingham, which, you will know, if you are a regular here (pull up a chair, old pal) is a favourite day out.  It is, theoretically, an easy journey from our lovely home and seat of all our decorating failures, being but three or four train stops away on one line, going North, so easy a pigeon could manage it.  In fact they do.  We saw them at the station here and also in Birmingham.  So, expanding my theory here and here (pointing) it should be easy, very very easy for two adult people with 142 years of experience between them not to stuff it up.

You think?  (Well you probably do, we didn’t, well he didn’t, I did but failed to mention it and thereby hangs this tale.)

By getting up variously at the unknown hour of seven A.M and quarter to eight, we made it to the station in a car by quarter past nine and duly booked, paid and ticketed, boarded the train which announced its destination as Birmingham Jewellery Quarter (yes, so easy it even has its own railway station) after stopping at three other places.  We got in, we travelled, we arrived, we alighted, minding the big step, we went up in the lift, we emerged in the jewellery quarter, we shopped, we coffeed,  we walked up and down the two main streets, I looked, I talked to many craftspeople (just like miniaturists but only making one thing in a vast number of specialities) we dined (back at the coffee place who gave me a free birthday cup of tea) we walked, I shopped, I bought.  We popped into the Bullring to Selfridges to get a ceiling light but failing as they had stopped stocking electrical items four years ago, so I bought toys for the grandchildren.

So far, so perfectly competent.

Upon our return at three thirty to the station, the OH consulted his mobile phone because he has an app.

When the planet crashes it will be because somebody had an app.

Hence to platform 2, yes 2.  I had misgivings.

In the course of our marriage I had one child and countless ’undreds of misgivings.  Oh yes.  For lo, I said to myself, looking up and down the platform (2 it was platform 2) is this not the Northbound line, when we are wishing to go South?  I would have questioned the OH but he had gone to the gents.  Instead I assisted a young lady with a pushchair and a baby, wishing to get to platform 1.  I advised her it was just round this corner, up in the lift, over the bridge, down in the lift and there you are, opposite.  There, indeed she was and, mission successfully accomplished, we exchanged a victory wave just before she boarded the train upon which we should have been, as I informed the OH, returned, relieved, as our train pulled out of the station.

He fired up his phone and consulted the app.

That, he announced, was our train.

We went round the corner and looked at the board.  It had changed, he said.  Well, you know, they do that all the time.  They very much live in the moment, do station arrival boards.  Once it’s gone, they don’t even mention it.  Not even to gloat that you were on the wrong platform, idiot passenger.

He consulted the app.  A train going in the right direction was available on platform three.  Three?  I thought there were only two.

Three was round the corner, round another corner and there you are.

There you are nothing, empty.  Deserted.  Daisies.  A cough drop wrapper.

A voice announced ‘The train now leaving from platform 1 is your train, Jane, and you’ve missed it.’

The OH consulted his app.  He vouchsafed the information, imparted by his app, that we had just missed our train.

Hiding in the ticket office was the station manager and Darren.  I suggested to the OH that we talk to actual people.  People who worked there.  People in the know.  Informed.  Professional.

The station manager got out her mobile.  She had an app.  A different app.

She consulted Darren.  ‘There was one on three, wasn’t there, Darren?’

‘Yeah.’

‘It was there about twenty minutes. Almost empty, wasn’t it Darren?’

‘Yeah’.’

‘Twenty minutes stood there.’

‘Yeah.  It was.’

I interjected (I was becoming irritated, a bit.)  As I requested information Zarathustra perked up again to tell us the train departing from platform 1 was another one I’d missed.

The OH and the station master were both surprised.  They need better apps, in my opinion.

So what we did was, first I went to the toilet, the toilets being off platform 2.  Then we went up in the lift, over the bridge and down the stairs, the OH attempting to mollify me by telling me you use more calories going downstairs than up and not a lot of people know that, happy birthday.

Half an hour later, an hour after we had arrived at the station we boarded the correct train and, after a few stops, alighted, after I had woken the OH who would happily have slept to St Pancras.

Then we went home where he swapped the Dinky bottle for the big one.

After the usual fight the film we watched was a comedy: The hundred foot journey, starring Helen Mirren speaking ‘Allo Allo’ but nevertheless entertaining.

There is a saying which says  in its wisdom it is better to travel hopefully than to arrive.

This is a lie, or, possibly, an app.

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Back in the groove.

Here I am, it’s Sunday morning, I mostly comprehend the new laptop and Windows 11, which I think I’ve got, of which more later, and it’s time to fire up the old tripewriter and catch up with you.  How have you been?

I’m sure you remember the postings about my Step-Mum-In-Law, referred to here as SMIL, whose life changed very drastically, as a result of the pandemic and who is now my fifth family member with dementia.  The situation forms quite a piece of my every day and, accordingly, I have revisited the Dementia Diaries, which I began to write when I became carer for my mother in 2012 and realised how little help there was anywhere for those close to a demented person at the time of your life when you most need a bit of guidance to ignore.

A year ago SMIL was living in her own home.  Her daughter had arranged for the local council to send in carers several times a day and had installed a remote speaking device and a camera.  Previously in the pandemic this had been unnecessary because SMIL’s son lived a few streets away, was only at work a few days a week and could do the shopping and pop in for visits.  Every Saturday he and his daughter arrived at SMIL’s house with fish and chips and, despite the pandemic there was a happy evening and something to look forward to every week.  I had been phoning SMIL every day since the beginning of lockdown.  I knew lockdown meant a vast change for SMIL.  After my father-in-law died she carefully constructed a life for herself that meant she had something to do and a reason to leave the house every day.  A sociable person, she enjoyed bowls, a lunch club, church and various other groups and societies.  Her daughter did visit when she could, although she lived an hour and a half away and had three teenage children.

I rang every day; we chatted for an hour.  Sometimes when I rang SMIL’s son was there and I chatted to him too.  Then he committed suicide, which, it became apparent, he had been planning for months.  He rang my son, who he had never spoken to before, at Christmas, to check his phone number.  When he died he left his daughter, a student, his mother, for whom he was unofficial carer and his sister, in remission from breast cancer,  upon whose shoulders everything fell.

SMIL’s daughter then contacted the council.  The responsibility for the care of people with compromised mental health varies very considerably round the world, as the first series of Dementia Diaries made apparent.  I received emails from many countries.  Although arrangements differed widely, what became more obvious with each email is that the more agencies are involved in the care of a person, the more opinions there will be as to what is the correct procedure.  Chiselled into a wall at the forum in ancient Rome was the remark: Talis homine, taila opinionem.  So many men, so many opinions.

So true.

With many official visitors to the house, opinions as to the competence of SMIL to live in her own home, even with carers visiting, were various.  A senior official, visiting on a bad day for SMIL, who had just had a diagnosis of dementia and a son who had committed suicide a few weeks previously, opined that she should be in residential care and promised rapid transition to a care home, anywhere there was a place.  Understandably SMIL’s daughter, who had been surveying residential facilities near to her house, acted quickly and moved SMIL to a care home in the next village to her.

For the first fortnight SMIL was happy, chatty and having a holiday.  The she said she had had enough, she wanted to go home.  Now she is saying that she will forgive her daughter just as long as she can go home.  Needless to say daughter plans to clear her mother’s house and sell it, which she has to do to meet her portion of the costs of the fees for the residential home.

SMIL has not said much because over the last few weeks she has lost the power of speech.  Now when I ring each day, the carer in the home puts the phone on speaker and I talk cheerfully about family matters for ten to fifteen minutes, send love and sign off.

This time last year we were having chats lasting up to an hour.

What to conclude from all of this if you are a carer, or likely to be cared for?

Talk while you can.

One of the most helpful things I did with my mother after my father died was to have long discussions.  We talked about what she wanted and what I could practically speaking, achieve for her.  When we reached agreement about a detail I wrote it down.  I had a loose leaf file which included information about her illness, pictures of brain scans, contact details for family, doctors and so on.  All the information you carry around in your head, which will be lost if the working of your brain is compromised.

I keep a file here of salient facts such as where I bank, the name of my doctor, plumber, lift engineer and so on.  Each time I have to look up a fact I add it to the list.  It is for the S&H and it is because it took me a solid month when my father died to find out all these facts about my mother and this at a time when I had no time to grieve and was so busy with all the practicalities.

If you were suddenly struck dumb, what would you like to tell your children?  Or your friends?  Whoever it is will look after you?  Tell them now and write it down.

The OH says I spoil the grandchildren, always buying them things.  Their mother remarked when we visited that I bought them most of their clothing.  I do.  When they came last week I took the children out for shoes and they had a pair of shoes, a pair of sandals and a pair of slippers each, they were sparkly, they lit up when you stamped, they were great.  They loved them and I loved being able to buy them.  I’m not rich, it’s my state pension that provides the money because while the OH is alive we have a good occupational pension from his work.  I am so lucky.  We have paid off the mortgage, we can put on a cardigan and turn the heating down, we are old and don’t need to eat much, we are alive.  So I enjoy buying things for the grandchildren because, now, I can.

I look at the news, as we all do, and see how life can change in the blink of an eye.  If you are the carer for a demented person you already know this.  Don’t wait until bits begin to drop off.  Make your desires known while you are ept and ert.  As a person who has had cancer twice I know how very rapidly you can become inept and inert.  The transition to struck dumb, grasping your knees, rocking and not knowing what you want, except ‘make it all go away’ can be a heartbeat.

At the very least, while you are lucid and vocal tell the people you love that you love them, tell them you know they will do the best for you that they can, if the need arises.

Don’t let them suffer as SMIL’s daughter is suffering, because  a person whose brain is not working told her she might be forgiven for moving her mother to a care home, which she had to do to save her.

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Back

Hello, I’m back.

The new computer is up and running.  By my reckoning they last about 9 years round here before they fall over groaning under the weight of undeleted late night window shopping expeditions, so, with a bit of luck we’ll have 9 years of chat before it all goes damp round the edges.

I am not going to make this a long post because I am exhausted.  Installing the new laptop involved a four day visit of the grandchildren and their parents.  The OH had a birthday, mainly at a little local fairground with the children, while the S&H  set most of this up for me and attempted to teach the idiot parent how to work it all.

Prior to their arrival I spent a week redecorating the kitchen.  How ideal it is to go from decorating the kitchen to preparing the house for guests, a room each and loading all the crafting stuff into my own bedroom, is something you can only guess at.  I know with great certainty that I will never redecorate the kitchen prior to having guests again.  I used to paint the hall, stairs and landing the week before Christmas.  It would appear that I have learned nothing.

The upshot is that every time I sit down I just

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A brief hiatus

Jane’s son here. Her laptop has died, and until she gets a new one (and I can help set it up), the blog is going to have a short intermission. She hopes to be back around the end of April.

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Cash and car parks.

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Henry was worried that he might be late for work because of difficulty tying his shoelaces.  They were, after all, just one filament sewing thread.

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Happily the giant hand was at hand, which was handy.

Henry got to work at the bank in a rush, just in time to be umbrellaed by Mrs. Vera Coggins, who was overdrawn again.

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‘How is it, young man, that there is always so much month left at the end of the money?  I need plenty of money for Miniatura.’

Henry suggested that if she were to stop spending so enthusiastically, she wouldn’t be overdrawn.  This was definitely the wrong thing to say.  She rushed past him, whacking him with her brolly.

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‘Don’t be ridiculous!  There are still five cheques left in the book!  I shall have a word with someone more senior!’

Afterwards Charles and Henry exchanged notes.

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‘She was that big!  Huge!  Dreadful woman.’

‘What did you do?’

‘I extended her overdraft, went on to the concourse at the NEC and got her some money from the cash machine.  But I’m going to take away her chequebook next time she comes into the bank.  Or you can.’

Actual money is a very welcome thing at the Min.  I don’t have a card reader because I only exhibit at Miniatura twice a year, so it would cost me more than my takings to have one but I do accept cheques drawn on a British bank, and money.  Many other exhibitors are the same.

The good news is that you won’t have to spend your money in the car park.  Ask on the way out and they will give you the pass that will enable you to exit the car park free, gratis and for nothing. This is wonderful.  I have attended other shows where the car park cost me £16 before I even got into the building.  But Miniatura is not like that.  It’s very classy.

See you there.

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