Mistress Mog

Ms Mog has lodged a complaint. As Most Senior Addition to ChickPea’s life (pre-dating TH even), Ms Mog reckons she should have had a blog to herself by now. ……. So here we have it.

Ms Mog was a tiny black 6-week old kitten when she joined ChickPea’s life. Like most (all ?) kittens she spent any time awake dashing about or eating….. or using her litter tray. Just 6 weeks old – and never an ‘accident’. When she wasn’t awake she was usually crashed out on ChickPea’s lap. She was gorgeous.

Then she turned into a wee monster – or was it a teenager ? No longer would she allow ‘cuddles’ – or even being picked up. ‘Red in teeth and claw’ would be accurate. ChickPea was Having Difficulty With Life – Ms Mog, nonetheless, was a good reason to come home. In the middle of the night, when she got lonely, or cold, she would sneak up onto the bed, and just Be There.

Various vivid memories from those early years – including the time she jumped out of the kitchen window and landed on a seagull ! She stopped catching birds after that one – they don’t come much bigger than that round these parts.

When she was 6 years old we moved out of the one-bedroomed flat into the current abode – and she chased squirrels for a while until the delights of spending all day lounging in the sun took over.

At about seven years old she decided that a cuddle might be ok. It took her over 2 years to learn how to make herself ‘lap-shaped’ – night-time snuggling up being her speciality. Starting with just enough inches on the edge of the bed and progressively stretching and pushing to make the folks give her more room…….. and over the years she has perfected this trick - we now wake up in the morning to find she has commandeered at least 1/3 of the total available space…..(lucky we got ourselves a big bed, eh !)

She had a fine life then, waited on for breakfast and supper, central heating, out for 10-20mins constitutional (out the back door, into the neighbour’s garden, up the side of the house, across the front, up our drive and in thru the back door). What more could a cat want ?

About May 2006 she decided she was Now The Upstairs Cat. When carried downstairs she would kick and complain. If taken out to get a breath of fresh air and sunshine she would stomp off and disappear for 4 hours. Upstairs is her domain, Thank You Very Much. (Unless there’s prawns……)

She’s now a wee wisp of a thing, but feisty yet, and still demanding her share of the bed. We may be into her last chapter, but we’ve not yet got to the Last Word. ChickPea will miss her.

Fluid Balancing

No – NOT like ‘balancing plates’. ( Thankfully. As my general balancing abilities prevented me ever managing to stay upright on rollerskates, ‘Damp’ would become a Permanent Feature ).

As it transpires, this relates to the amounts of fluid taken in versus given out by an organism. ( In this case, DJ. One of his Essential Needs That Arrived Unexpectedly And Started All This. Caused by a fundamental mechanical drainage problem which reached and passed the state of no return, and a longstanding slightly impaired renal function).

Fluid Balancing tends to mean lots of tempting, cajoling and measuring to achieve the minimum intake requirement of two litres each day. And a fair bit of Ingenuity to make it a tolerable requirement for DJ. And good humour. And a basic ‘O Grade’ in addition.

Tuesday was a Fairly Good Day. By 3pm we’d already reached 1875 mls.

(It may not seem like much of an achievement to you – but believe me !)

That’s the ‘Input’ part of the equation. Easy to talk about. As DJ has difficulty tolerating anything around his body that he wasn’t born with, then the ‘Output’ is perhaps a little more ticklish to consider. Many people will tolerate (I use this word carefully) a tube which is inserted into the appropriate orifice and left in place (known as an ‘indwelling urinary catheter’) to drain into a collection bag which is hidden under clothing. This is then changed every few months by a professional such as the district nurse, with care and hope to avoid infection. If someone really will not tolerate this method, their ‘waterworks’ can alternatively be managed by gently slipping a simple catheter in as and when necessary – and then taking it out again. Needs a clean and careful technique, but it is really not difficult. As this is most usually done by the person for themselves, it is called ‘Intermittent Self-Catheterisation’ (ISC).

But The System remains doubtful that anyone would/could wish to do this for themself, and is absolutely convinced that no-one could possibly consider doing such a thing for someone else. That this method is commonplace for many people with spinal injuries (for example), does not seem transferable to care of the elderly so far as the system is concerned. Former colleagues of ChickPea suggested this management approach might be possible for DJ, were she willing to do it for him. Given that her job had required doing far more horrible things to ill people, she was willing to give it a try – so long as DJ was in agreement. He was. And TH. He was too. But The System ? – Took a bit of convincing, I can tell you ! (Not the nurses – they were great – very supportive and encouraging, and taught her over the next 3 days, and we got DJ home within the week – after a month in hospital of very difficult ‘person-management’ for both DJ and the staff concerned – and not just a few bruises, either).

Anyway – that’s how we do the ‘Output’ bit, usually about 3 times throughout the 24-hr day, measuring of amounts being necessary, adding up the day’s production and then comparing this with the day’s ‘Input’.

Now. For DJ to stay elsewhere requires they have staff who can do this technique. Does it seem obvious to you ? (Try telling the Social Worker……there’s several stories involved, but maybe another time…….). Anyway – the end result of this is that there are very VERY few of the ‘Respite’ facilities hereabouts which can cope with ISC. And because of the (dis)organized expertise of the Social Work system, there is apparently no database involved for listing the ‘Respite’ premises with such skill. Oh No. Each place has to be phoned, and asked.

Our experience of this is that if the Social Worker actually manages to arrange a Respite bed it will be somewhere that is not able to cope with either DJ's stage of ‘dementia’ or ‘ISC’. She assumes the district nurses will pop in and do the necessary, 3x/day for 7 days (or whatever). ! This thought causes apoplexy for the district nurses. (And for TH and ChickPea). Now that we are wise to this, ChickPea finds it most successful to track a place down herself, and get SW agreement thereafter…..

And I think – after 18 months of searching for a place to stick with – we may have found it. And that is where DJ is staying for Respite this time. And they even phoned yesterday morning to tell us that he had fallen on the floor during the night (what – only once ? – a miracle !), and that his fluid output at his late session was as good as we could hope. (Somewhat more reassuring than a previous place who had put him into hospital without telling us…….. they’d mis-copied our telephone contact details from the printed sheet we’d given them………).

DJ appears to be in the safest of available hands. We live in hope.

A Second Gauntlet.......

Kenny reckoned I’d thrown down a gauntlet with my ‘A-Z’ challenge. So here’s another to get the neurones whirring……….

“Describe yourself in 4 words” ..........OK ..... 6 if you must………

Last week I think I would have had to say “Tired, grumpy, frustrated and anxious”……….. But then on Sunday night DJ started to sleep a little better, and this continued both Monday and Tuesday nights. Last night he was away to ‘Respite’ – so TH and ChickPea awoke after an unbroken sleep of 8 hours – WOW !

“So describe yourself today, ChickPea, in 4 words”……..

I will – but I’m still working on it……..

Central Heating - in June !

It was a bit chilly this morning. Especially at 8am when Chickpea really REALLY had to wake poor DJ up……

Can you believe it – his first really decent sleep for about 5 weeks (from about 7pm – 2am, then from when he settled about 2.30am, and he was still sleeping soundly at 8am ! What bliss ! What a most wonderful gift to TH and ChickPea ! What a most generous answer to prayers – Thank You Kenny and Others…..) – and then he had to be woken up because the District Nurse was coming round early to repeat his blood test, and a ‘sitter’ was due at 8.30am because ChickPea (FINALLY – after near on 2 years, and repeated asking) had the chance of a training session about how to look after someone with Dementia…(!)……

I confess, ChickPea would dearly liked to have let him sleep longer………and should have got him up at 7.30am……….. but it was a bit chilly.

Yesterday and the day before were so gloriously warm and sunny, ChickPea was out in the garden in her equivalent of ‘shirtsleeves’. Domino Joe (DJ), meantime, was adamantly cuddled up in his jumper and fleece, determinedly staying in the conservatory, absolutely convinced ChickPea would be catching cold……..

So this morning he had the heating on for getting up from his bed. Ha ! - couldn’t you just do with a full time carer too !

Monday again........

Ahhhhhhhhhhh…….. THAT’s better !

Now – what is ChicKPea talking about ?

Is it that DJ slept better last night ? – He DID, as it happens – right thru from about 12.30mn until he was heard coughing at 6.30am…….. and then he tried to get himself up, so had to be lifted up off the floor at 7am….. But – see what a difference those 5 hrs’ sleep made for ChickPea – you’d not recognize her today after that grouchy thing you’ve been meeting over these last few days……. !

Is it that DJ kept his clothes on last night, so that Disseminated Trouble Was Averted ? – Well, it could well be, because he did and it was. But there is something else too…….

There was something ChickPea didn’t tell you last Monday, because it was much much too mortifying….. especially as she thought for most of the day that it was a really GOOD day, and we cooked up a fine Risotto if you recall……

But last week she actually had 2 appointments on the Monday morning……. Carefully organized to synchronize. Firstly at the doc’s for a (fasting!) blood sample (aye – skyhigh cholesterol runs in her genes, and trying to curb the dietary intake isnae working, nor wiz the previous type of statin tried….). Then away jus’ roun’ the corner to the hairdressers……. Had she remembered on Sunday night and been fasting she jus’ might have remembered and it would have been ok….. as it was, there was no recall at all until mid-afternoon, when she checked her diary about the arrangements she thought were for Friday ………..

Ooooops.

I blame the tiredness, myself. I think, had she been getting enough sleep and been on the same planet as the rest of us, and somewhere near sanity of mind, the appointments would have been attended. Hey ho.

So………What is the answer ?

The Answer Is – she got her hair done at last ! (Similar feeling of achievement as mowing the lawn…….. not that her hair is green, or anything……)

Sleeper's aWake

Well. Today was interesting.

I’ve said recently that DJ does not appear well. A blood sample has been taken for analysis – this should be available (to the GP) on Monday. DJ is booked to go into Respite for a week from Wednesday. This allows not a lot of time to implement any medication changes and see if they are working before he goes away. But that’s another story.

Today ChickPea just couldn’t keep DJ awake. Even tho it was gone midday when he finally did get up. His not wakefulness affected moving, eating, drinking – EVERYTHING. He was drooling all the time. He looked awful. There was the thought that maybe we should get another GP review – his hands and feet are so swollen – but we got NOWHERE helpful last time. There was certainly the thought that maybe we are getting close To Something Terminal Happening. In which case trying to insist he be awake seemed somewhat inappropriate. .....

So we accepted a slightly lower than ideal fluid intake. And when he was begging to get to his bed (“How about distraction ?” you say – well – just YOU try distracting a very determined and extremely deaf 95 yr old who really won’t listen, and despite short term memory problems (!) will stick avidly to his agenda of getting to bed NOW…….), so we let him get to his bed about 5.45pm…….. After all - Would he see morning…….?

Will he, heck ! I hae me doubts….. but not from Natural Causes……….

Wide awake at 8pm – more awake than for the last 3 days – and on the floor again, of course. So now he’s in the lounge with us, in the wheelchair (I really don’t trust his walking tonight), and he’s been up again for nearly 2 hrs, and all he’ll do is fiddle with this….and that……and try to take his clothes off again………

I’ll stop the blog and get him a warm milk drink, and try the impossible likelihood of him settling back in his bed…….. Nite Nite. Sleep well…….

The Way It Is Going........

Not good. Not at all good. Unless a miracle happens to reverse current trends, it is increasingly looking as if DJ will need to be in permanent residential Care over the next few weeks (maybe days) rather than the months that ChickPea had been anticipating.

At midnight last night, again at 6am and again at 8am DJ had to be picked up off the floor of his bedroom. No evidence of specific injury, but certainly increasingly bruised. Wasn’t really managing to stand, let alone walk. Maybe that will have improved by the time he wakens. He was wanting to get up at 9.30am, sat up, took some fruit juice, then wanted to lie down again……. so having replaced his pyjamas, ChickPea made it so……..it is now 12.30md, and he’s still sleeping………

Dementia, of whatever type/cause, is a horrible thing. The Professionals used to persuade us to get DJ up in this situation, and not let him sleep on. On the basis that he would be less likely to sleep the next night. We trusted and believed The Professionals. So we did. And DJ got more and more tired, more and more anxious and fretful, more and more unsettled at night. It all got so desperately distressing for DJ, TH and ChickPea that we stopped, reassessed. And decided to Trust our Own Instincts. And let DJ stay in bed late (sometimes – ‘outside arrangements’ mean he sometimes has to get up at 8am – sometimes 7am). But Lo ! The Situation Improved (for a while). So now I Say To Others – Trust Yourself !

Sadly, as TH pointed out, caring for Someone With Dementia is an uphill learning curve. You just get to managing to cope with The Requirements…. And These Change. So you cannae cope so well until you’ve struggled a bit with the New Requirements….. and then you get to cope again…..but then All Changes Again……… Struggle Again……. Cope Again…….. Changes Again…..

That’s what it’s like for us. What the heck is it like for DJ ? He never was a great one for communicating or sharing his experience, and the dementia is steadily – and increasingly quickly – eroding his ability to think, to relate to himself, to relate to us. His speech has been deteriorating this last week. Saliva escapes more and more of the time. Balance, stance and movement are disappearing almost as we watch.

Nothing can prepare the Nearest And Dearest for that. But for us, none even tried. Just this week I found the ‘Seven Point Scale’ of Dementia, on the excellent Altzheimer Socy website (I’ll try and tag it on the blog, but I’m not good at these things yet…). Perhaps I should have been more proactive and spent more time researching these things for myself. But I was (attempting) caring for DJ…… but NOW we know that his condition ticks all the boxes for ‘Stage 6’ and several of ‘Stage 7’……… there is no ‘Stage 8’ on this earth. So why – WHY – when I have asked The Professionals to give us some clue about his level of dementia, have they just shrugged and said, “Well, you know it is difficult…” HA ! you don’t say. And how many big bucks are they being paid, and just why should the relatives be expected to jump thru’ technical hoops to access the official case record notes to find out what any decent Professional (I speak as a Professional) should expect to deliver to Relevant Others as a basic factor of Good Professional Practice….. ?

The GP seemed somewhat unmoved and unconcerned when she was in 2 days ago. Didn’t want to know how – if – we are coping. After all, he is 95. But so what ? I’ve known 98 year olds with a good quality of life. Age of itself shouldn’t be justification for poor quality of life – or poor care. I am very concerned that maybe - just maybe - Things Could Be Better for a wee while with a little tweaking of the medications. GP wouldn’t consider that without a blood test….. so the District Nurse would have to come in to do that another day…… How come the GP, who was here, couldn’t/wouldn’t just do it there and then and it’d be in process ? Oh no. (But surely that costs the system even more, getting someone else all the way along to the house to spend another 5 mins getting a blood sample, as well as at least another 24 hrs before the results will be available ?).

Sorry. ChickPea worked in Acute Areas of the NHS for well over 20yrs and knows how the system wastes money by such illogical behaviours – and care of the patient is compromised by so many stupidities of The System. If The Professional concerned will think outside of their box and push the system, you find it is made of stretchy stuff that WILL actually accommodate better – even best – care for the individual. But The Professional has to work much much harder to achieve that result now compared to 20 yrs ago……. And now we have a new generation of Professionals, who perhaps have never actually seen ‘best’ care to even know that it can be possible…..

Anyway, the blood sample eventually got taken yesterday. 24hrs was probably within ‘targets’…….

Sorry. This has been A Rant. Sadly, a Very Necessary Rant. I’ll try to do better next time…….

And it's FRIDAY

Good morning ! Sunshine creeping between the grey clouds and 3 comments have been posted – this will be a good day…….. despite DJ needing a shower at midnight last night, and then awakening ChickPea at 3.43am, 4.15am and 7am……

Mr Mutt is out in the sun already, watching the ‘baby blues’ on the peanut feeder and the ‘baby greats’ on the seed feeder. Now a week on from fledging, they are all flying without hesitation and busy with the business of staying alive. Maybe Mr Mutt’s presence will help – he’ll maybe deter the Fluffy Black Marauder Mog that likes to lurk in the flower (weeds !) border and reduce the Feathered Friends’ population…… Not sure if he’ll also deter the sparrowhawk…….. but I hope so.

The kitchen is too quiet. The recycling is lounging in heaps rather than waiting outside in a bright yellow sack for collection. The washing is festering in a pile from last night rather than billowing in the wind. The washingup hasn’t. Mr Mutt is dreaming longingly for his walk.

ChickPea is flagging. So is TH, with another working day of being essentially the only one – yet again - to handle the whole team’s workload.

We usually look forward to the weekend, but with DJ’s recent poor health and poor sleeping, the weekend promises little respite. The GP was out to see him yesterday, but was fairly dismissive – well, he’s 95 after all. Happy Birthday DJ.

ChickPea's current A-Z

Still very very tired….. DJ continues to be too unsettled between 12MN and 8am to allow much possibility of sleep for either TH or ChickPea. So we are Finding Life’s Challenges A Little Difficult just now.

To focus, I thought about my ‘A-Z of today’ – what’s yours ?

Animals
Blogging
CatsnChooks
Dog
Emails
Faith - and Friends
God - and Garden
Hubby
Interactions
Jelly (especially good if you put fresh fruits into it !)
Keeping Smiling
Laughter
Making scones
Not doing the washingup
Odd moments of Insight
Painting the fence (this is taking a while)
Quire (ancient spelling of ‘choir’ - ok – I cheated )
Recording for the BBC (! – didn’t expect that, now did you !)
SUNSHINE (now there’s a surprise, eh !)
Taking Mutt a walk
Ultimate luxury of a bath
Violets in the front garden
Wearing Wellies (one of Life’s Little Luxuries On A Wet Day)
Xcitement of finding a comment on the blog (yes – it has happened)
Yummy icecream on a hot day
Zzzzzzzzzzzzing ……….. (I believe in hope….)

Monday Menu : ChickPea Risotto.......

Monday morning. DJ has just been taken away for the day – so I shall take a few minutes for personal therapy before tackling the day’s chores. TH is working late tonight, so there may be more time later on – we shall see.

Risotto – lots of bits and pieces, plenty for a meal. No recipe, just chuck it all in and stir well……..

Q. Did the car trip work and stop DJ fretting about a bus ?
A. Thank you for asking. Not really – no, that’s not quite honest – partially.
It had the effect of quietening the endlessly repetitive phrases for about an hour. It was also fairly therapeutic for me, in that I don’t drive so much these days as I used to, and there are turnings we go past that I fancy exploring. So as I had the car, This Was An Opportunity. We live in a major city – well, kinda suburbs of – but can be out past fields within 5 mins. (Apologies to The Environment – too many car fumes - not so therapeutic on that score, but, I am afraid, this was a Necessary And Lifesaving Manoeuvre ……). After about an hour, when ChickPea was beginning to count her chickens (figuratively speaking), DJ shot them down. From apparently settled, silent state, came : “Am I going to be able to catch the bus then ?” (NO)……. “Have I missed the bus ?” (YES) ……..”I need to get the bus” (WHY’S THAT THEN ?) “I don’t know”……. (THIS IS THE BUS – YOU ARE ON THE BUS)….. “But where do I catch the bus ?”…….
Then the seatbelt was off – Thank God for the childlock.
We got home after about 2 hours’ driving around fabulous countryside. DJ was being fairly quiet again – clutching onto the seat in front (honest – my driving really isn’t that bad…) – hmmmn - not exactly relaxed…... but ‘Aha’ thought ChickPea – ‘Situation Sorted’. .....

“When will I get the bus ?” sez DJ………

Q. Anything to Give Thanks For Today ?
A. Oh yes – thank you for reminding me - sleeping has been improving a little. DJ essentially slept thru (bar some shouting) from about 10pm until 7am yesterday and again last night. ChickPea’s problem now is that the Sleepometer – which was coping remarkably well in the middle of this last fortnight of Grossly Disrupted Sleep - now reckons it can give up coping, has plummeted to below ‘empty’ and is taking a bit of catching up…. And I do believe there’s Sunshine creeping thru the clouds out there.

Q. How was the w/e ?
A. Mixed. Saturday was fairly non-stop, trying to eliminate the pile of Essential Washing, accomplish Essential Chores, and keep DJ clothed. (This has been A Recent Feature – ‘sitting quietly’ – but removing bits of clothing – one afternoon last week, DJ was quiet in his room while ChickPea answered a phonecall, and next thing, there was DJ, not a stitch on, staggering through the house without his zimmer – ‘WHY ?’ – “I don’t know” sez DJ….) Saturday evening had A Bad Moment. I hate stepping in poo. Before Mr Mutt joined us, both TH and I were most indignant when ShoePoo happened. Since Mr Mutt joined us we are probably even more appalled when this happens, as responsible dogpersons do not allow this possibility to occur. But this was in DJ’s room. And Mr Mutt does not venture in there, nor does Ms Mog. That Bad Moment was NOT something I could share with TH, because he has to live here.
Sunday am and DG was with DJ for the service, enabling almost Full Participation for ChickPea – which was Good. A big, fabulous service with orchestra and Haydn’s Little Organ Mass. PK was back. DG, DA and DI were their usual lovely, kind, considerate, supportive selves. Lunch out is always good (especially re. No Cooking, No Washingup…) – we’ll overlook DJ being Increasingly Unpredictable In Public……. TH was then out with the cameras to cover an event loosely related to work, so Mr Mutt, The Wheelchair and I took DJ out into the park – where he fell asleep for a while. Necessary Clearing Up was then attempted as J was in from The Altzheimer’s Assocn to keep DJ company for the evening, allowing ChickPea a few blessed hours off for real Full Participation in a demanding sing but good evensong and post-sing-lubrication.

Guess that’ll do. My cooking skills are fairly rudimentary, I’m afraid. Hope taste was reasonable, not too chewy, probably about 2 out of 10 for presentation……. at least it wasn’t burnt…………

Tripping the night fantastic.........

DJ likes to fret. Well – that’s the only conclusion I can find after several years of trying not to fret myself when he’s like this……….

He came home from the day centre - on a minibus – 2.5 hrs ago. Since then, at least every 5 mins, he has been fretting that he “will miss the bus”…… he’s not sure what bus, or where it’s going – but he’s increasingly anxious that he will miss it. I’ve tried telling him he caught it fine this morning….. and again this afternoon to come home……. that he’s been on the bus……. that there is no bus……. that it has been cancelled……. that the next bus is 3 days’ time on Monday……. I’ve tried distraction - ice cream, tea, cake, biscuits…… more tea. I’ve said the driver has gone home to his bed. I tried the telly on… the telly off……. the curtains closed so the room is dark ……..

All To No Avail.

He’s usually fretting to get to his bed by now. That’s what he needs. He looks tired – desperately tired. But he’ll force himself to stay awake in case the bus comes……. Will he fall asleep if I take him out in the car ? Who knows. But it’s maybe worth a try.

Any other suggestions ?

Loopy Loo

I guess most 24/7 Carers have to find coping strategies for the ‘WC’ aspects of care. Do they also have to get used to being woken at 5am ? Sorry – but I really REALLY need to get this one out of my head……..

The main Precipitating Factor for DJ requiring full time care was developing acute urinary retention. We / I had suspected at least an element of chronic retention for a while, but as DJ wouldn’t talk about it, and the GP wouldn’t address it, we were stumped until his ‘Lunch-provider-carers’ couldn’t get in one day, TH was called home (again) from work, and found DJ having fallen and very torn and bloody. His skin is just so fragile, he tears easily. So TH called me (working fulltime then) and took DJ in to A & E at our local hospital and I left the ward I was working on and met them there. This was mid-August 2006.

So it began. Life was Never The Same Again.

DJ was admitted to hospital that day, and it took a month to get him out. We now know that This Is What Happens when he ends up in hospital. Because of his dementia he cannot understand or relate to what is happening, who the staff are or what is required. He gets upset. He won’t stay in bed. They give him sedation and put cot sides on the bed. He’s still upset, now feels retrained and doesn’t like it. He climbs over the cot sides, falls further onto the hard floor and sustains injury. To keep him in bed they give him more sedation. He now feels very ‘odd’ and sore, as well as restrained, so gets more upset. They give more sedation. He feels more peculiar. Gets more upset. Certainly won’t stay in bed. Falls over……… gets given even more sedation until he finally konks out…….. Episodes when the sedation level is decreasing precipitate him trying to get out of bed to get away and escape……. He gets given more sedation. Then they won’t get him up to walk ….. (“well, he’s really not able …… he wouldn’t be safe”)…….. so then their assessment is that he CAN’T walk……. so couldn’t possibly be managed at home……..

You get the picture.

And The System is both holding the paintbrush and painting the picture, and DJ and his family are effectively now ‘bit players’ being cast into An Alternative Universe.

But IS that the Real Situation ? Is The System’s Perceived Picture the only option ? Is The System’s Answer actually The Only Answer ?

Having worked within the ever-changing system for over 20 years, ChickPea wasn’t going to get steamrollered.

So, to get him home, ChickPea (PEA ? !!) found it necessary to Develop Skills to deal with the waterworks (‘cos DJ would not and will not tolerate a permanent tube being left in place to deal with the necessary). And The System was a bit surprised, both then, and now, that we were willing – and able – and could do it.

That bit I can still cope with.

The Bowel Bit is another matter altogether. We all know about ‘Bowel Habit’ from our own experiences. This title ‘Habit’ suggests a certain predictability. HA !

Over these many months we’ve tried most professionals for advice – District Nurse, GP, Gastro-Enterology Nurse Specialist …….. Their ( mostly pharmacological ) advice had the effect of making the Constipation-Diahorroea Rollercoaster run even faster and more unpredictably.

We stuck with each new bit of advice thru thick and thin….. and, thankfully, eventually gained access to a regular supply of ghastly and uncomfortable ‘pant pads’ which kind of assisted the basic practicalities of coping (if and when DJ would keep them on ……). We changed his clothes, changed his bed in the middle of the night, changed it again, showered him at 3am as the only option…..(too much detail ? – sorry )….. maybe you know how it goes – tho I hope not.

Sooner Or Later we would achieve a modicum of success and reach a week or so of fairly normal…… Then All To Pot again……. or Not In Pot – hence the difficulties……..

This has been another of those ‘Have Confidence In Your Own Instincts’ aspects of care. I guess this is also One Of Those Things that new parents discover ……. Not having achieved parenthood, we had to discover it new. Parenthood perhaps has the hope of progress and improvement………

And so eventually, caring for Someone With Dementia, you accept that this is just The Way It Is….. and presumably Will Be. Sometimes ok, and sometimes NOT. And probably Going To Get Worse.

Meantime…… I Give Thanks Continually for latex gloves, reams of bogroll, moist wipes and even for horrid pant pads………..

( Afterthought : And I wonder why I wonder why no-one leaves any comments on this blog…….. ! )

This Morning.......

I thought you might like to hear about Mr Mutt’s Thursday morning. ChickPea is waiting in for more parcels to be delivered today – maybe including Mr Mutt’s outdoor bed. Meantime…….

The sun was shining, a light wind from the NorthEast…….. DJ was in a slightly less Tangential Universe than of late, and the porridge was cooking nicely on its own…… so Mr Mutt could go out into his garden. This Was Good. The head was up, the eyes were bright, the tail was waving a little, and he was dead keen to get out. Yeah – Life OK for Mr Mutt. A bit draughty, of course, becos of the wind – so he settled as flat and windfree as he could in the sunshine, and Life Wuz OK.

Then ChickPea took the base bed-bit of his kennel out into the garden. Oooooooh ! This wuz good – up off the cold grass ! “Hey – I like this” sed Mr Mutt. Draughty, and a bit hard on the elbows - but hey – ok.

Then the top bit went out into the garden too. Mr Mutt moved out of bed because ChickPea insisted – she thought it A Good Idea while she put the top on. (Unpredictable dog has been known to bite)………..

Straight in. Settled down. “Very Nice Thank You” sed Mr Mutt.

Hasn’t moved for over an hour. The Tabby Twins from next door came to say ‘Hello’ and to investigate The Kennel. The Feathery Friends have been around. But Mr Mutt is Taking Time For Himself. Life Is Too Good For Sharing just now. Mr Mutt is Over The Moon.

Of Material Matters.......

There was an ENORMOUS parcel arrived in our porch today.

Mr Mutt, TH ( avec scissors ) and ChickPea eventually achieved liberation of the contents – despite yards and yards of sticky parcel tape - and Mr Mutt had A Very Great Surprise.

A kennel !

Mr Mutt loves being outside – but he really HATES rain – and wind. And he hates DJ’s hearing aid when it whistles. And he hates Being bored Indoors. He finds it a very difficult choice sometimes – stay indoors out of the wind, but with the H.A. …….. or away from the H.A. but cope with the wind - and hope against hope that ChickPea notices the black clouds are gathering and the temperature is dropping and it’s going to rain…..

And NOW he has a kennel ! Maybe tomorrow the postie will bring the ‘bed’ bit to make the inside of the kennel cosy and cuddly……..and soft for his old bony elbows…… Mr Mutt is optimistic - Life Is Looking Up !

15 Good Things

· FINALLY getting a week’s Respite arranged for DJ !
· That unexpected smile that brightens your whole day
· Friends
· Someone Else doing the washing up
· Eating out (or eating in with a carry-out supper)
· Fresh, clean, newly-ironed sheets
· A Short Sermon with a Relevant Point
· Ms Mog snuggling up in the middle of the night
· Sunshine
· A full night’s sleep (still not happening.....)
· Saturday morning
· Cuddling TH
· Cuddling anybody !
· Singing a top ‘B’ and knowing it was in tune
· A line full of clean washing on a fine day

SLEEP (3) - or feeling blue........

Or lack of it……… this must be seven consecutive nights now of significantly interrupted sleep……. and ChickPea, for one, is not doing ok. Sunday, Monday, Tuesday and Wednesday were all multiple repeated awakenings with no obvious cause. Thursday was a night to forget, with a shower the only option to clean DJ up about 5am……. washing machine on all day Friday. On Friday we identified that there was an infection, and DJ started antibiotics. Signs are promising that these are working. Saturday morning DJ again woke the household up about 5am, Sunday morning it was 6am…….. and now, about midnight Sunday night he just will not go to sleep – out of his bed every 5 mins……... It’s like he’s doing everything in his power to stay awake. He’s had the melatonin…… the warm, sweetened milk, the biscuit, the hot water bottle…… the dark room……. the room with the door open and the hall light on so’s he knows he’s not alone……. he’s been to the toilet….. WHAT am I missing ? ………on the basis that if he won’t sleep and wants to be up he may as well BE up, DJ is now thru here in the front room with me………. TH is trying to get to sleep upstairs…… I’m trying to stay awake downstairs until DJ finally goes back to bed and gets to sleep……

Any suggestions ? (They do need to be legal……..)

We have been trying to arrange a next Respite break for the end of June……. The SW has known about this for best part of a month……. told me last Thursday she just can’t find anywhere…….. she had tried just the last 2 places that DJ has stayed ..........

So I started telephoning around again, and by the end of the same day had found a possible place….. we just need to visit them this week to be able to confirm details…….. here’s hoping……….

The Lark Would Have Stayed In Bed...........

And so would ChickPea if she’d known what she would find at 4.30am......... I shall try to save you from the goriest of details – but I need to talk about this.

Today – when I am first writing this - is Friday 6th June.

Today – when (if ?) I am publishing, will probably not be 6th June – because I think this will need a few re-workings to make it an acceptable blogpost.

We haven’t really tackled the ‘Bowel Behemoth ‘, have we ? Carer’s Of The World Understand This. When you take on the role, no-one thinks about The Jobbie Job. But sooner or later, there you have it – the Task That Needs Someone To Do It – and The Responsibility is ALL YOURS. Probably at 3am in the morning. (Or 4.30am). When there’s Others Asleep that you really don’t want to disturb. When you can’t think, let alone Plan A Strategy to sort out the situation …..(where do you start ?)

Cleaning out the cat litter tray or Dealing With The Dog are very gentle preparatory tasks. VERY gentle. I used to work in a busy Intensive Care Unit – sometimes we were dealing with a bed full of **it. This was certainly effective training for the Role Of Carer. How does someone cope who has not received such experience ? Lucky White Heather, eh.

I am Exceedingly Lucky. TH used to work with Specialist Needs Provision Housing. So when we started planning DJ’s downstairs ensuite bedroom (otherwise known as ‘The West Wing’), TH insisted the ‘ensuite’ should be a ‘wet room’. I’d not really knowingly encountered the ‘wet floor concept’ – but I’m now Giving Thanks for TH. To be able to sluice the place down can be kinda useful.

A working washing machine is an item of household equipment to Hold In High Esteem and for which To Give Thanks. Frequently Taken For Granted. Like running hot water, rubber gloves and soap.

When It Needs Done, It Needs Done Quickly. And Efficiently. And Thoroughly.

And when ‘tis done – you can enjoy your coffee (or Tea…….. 6am is a bit early for a Gin and Tonic…..).

Ranking with Royalty !

Today, ChickPea found she had ‘An Official Birthday’ – just like the Queen !

We’ll not go into the details of quite HOW this occurred (Protecting The Innocent).

(Oh yes – there HAD been a secret after all ! )

This has been a glorious sunny day – just like you’d want for your birthday. And I got presents ! And TH did all the cooking (that’s a real gift too). AND we had scones with jam and clotted cream for tea (never mind the cholesterol – it’s my birthday !)

Wot fun !

And we now have a Wii to play with ! (And it’s got NOTHING at all to do with incontinence………!)

TREASURE HUNT

TH thought There Was A Secret.

ChickPea just thought TH wasn’t interested.

She’d floated the idea of writing a Blog, and TH had been encouraging. Then, NOTHING. No enquiries as to any further thoughts/plans/ideas/attempts to do this. NOTHING. (She knew TH was tired, and busy at work, and a bit not well – but, well, these things somehow didn't seem relevant – she still hoped he might have asked her about the Blog).

So when, yet again TH the CWK was flogging his laptop, instead of trying to talk to him, or Being Bored watching telly, ChickPea just got out her windup laptop and got on with it. When floundering in the jargon and intricacies of Blog setting-up, she got on with it or Tried What She Though Was Required, then took time out to Wait And See What Happened. And she did it. It Worked. And she wuz dead chuffed.

And TH Thought There Was A Secret. (Some chance !)

But – There Wasn’t. Just one of those Elephant Pits of Communication Failure. So now ChickPea had discovered what a ‘URL’ might be, she could email the Blog’s one to TH.

Is a ‘Secret Shared’ a ‘Secret Halved’ – or a ‘Secret Doubled’ ?

Mr Mutt's Morning

Mr Mutt is having his morning siesta on the lawn. He’s had his breakfast, been out for his morning stroll and is now snoozing outside, well away from DJ’s hearing aid and ChickPea’s attempts to keep DJ awake whilst awaiting the transport out to the Day Centre. (This amount of effort does not bode well for the day centre staff, who will no doubt bring him home early………) But for Mr Mutt, life is ok.

He has a variety of companions in his garden, does Mr Mutt. There’s the Tabby Twins from next door who visit him for a bit of entertainment (they get bored at home, and Mr Mutt is good for a larf – he tries to disappear into the scenery in his efforts to avoid the TTs). Then there’s the Flying Fraternity. These are wearing coats of very many colours – the bluetits and great tits in particular love the peanuts hanging from the rowan tree, while the sparrows, greenfinches, dunnets and occasional goldfinches prefer the seed feeder (not such a good mix as usual, so not so many visitors this morning). The neighbourhood robin is keeping an eye on proceedings, while the blackbirds are wary because the lawn is a bit too long for their liking. I keep hoping any available thrush will call by for a snail feast – these are walking up the windows of the conservatory this morning, and disporting themselves in a most unseemly manner. (Will the chooks eat snails ? – I’m told they will help me sort out our slug situation).

Who else to keep Mr Mutt company ? There’s the current grey squirrel who is still learning the knack of hanging upsidedown to raid the peanut feeder – his predecessor was much more accomplished at this feat, but our neighbour saw a fox feasting next door, and that gymnast has not appeared since. The Fox Family have not been seen in the garden visiting Mr Mutt (yet – tho they have been known to tag along for his late evening walks, coming as close as about 6 ft, causing Mr Mutt a little anxiety). They certainly visit the garden in his absence, and we see signs of a hedgehog who visited last night – but I don’t think this one has much of a taste for slugs !

The washing line is filling up, and there’s a wee breeze this morning to make the sheets flap. DJ was busy last night. Oh – the joys of having an outdoor opportunity for drying wet washings. I remember when we moved in, March 2005, glorious sunshine that first week, inspiring breakfasting in the garden, Ms Mog discovering the delights of chasing the squirrels, and TH discovering the pleasure of shirts dried outside. Life certainly holds Good Moments.

So, with all this activity, Mr Mutt has to concentrate quite hard to achieve slumber or significant boredom when he’s out on the lawn. He’ll have to work even harder at sleeping once the chooks arrive – but I think, between you and me, we’ll keep that a secret just now, eh !

Porridge

So what accords ‘Porridge’ the merit of being such a High Blessing ?

Are you a morning person ? I confess that I am NOT – more of ‘an owl’ than ‘a lark’ (usually. Sometimes DJ gets me up in the wee sma’ hours, I cannae get back to sleep and the Lark Manifests… Always a shock to the system).

I grew up with a Mum who endeavoured to keep the Feast of Breakfast not only Interesting but Unpredictable. This must have been enormously demanding with 3 ravenous kids, but was presumably A Ploy To Get Them Out Of Their Beds in the morning. Not sure it worked. But it certainly merits 100 out of 10 For Effort.

That DJ is addicted to porridge is Very Helpful. When he’ll eat nothin’ else, he’ll ALWAYS eat Porridge. His swallowing is always ok when he’s eating his porridge - and he doesn’t fall asleep when he’s eating his porridge.

All of which helps create a Much Less Challenging Morning ……….. which has to be A Good Thing.

PS. Porridge is also said to help lower your cholesterol levels. TH and DJ both have very low counts. I don’t. I blame the genes, personally………

Sleep (2)

Remember our daytime herbal tablets experience ? Well – before we found the daytime ones, we discovered ‘Nightime’ versions.

Again, we only discovered these in desperation because traditional medical approaches not only failed us completely, but dramatically increased the ‘not sleeping’ problem.

And again, so long as we didn’t try to use them every night, but just as a ‘fallback’ to achieve the occasional ‘satisfactory’ night, we got fairly good results. Not 100% you understand.

And then, reading DJ’s newspaper one day, there was this article about melatonin. A natural part of human bodily functioning, natural ‘normal’ levels increasing at night to help sleep. Noted to often be depleted in the elderly.

So – we tried to discuss it with the psychogeriatrician when we had a meeting about the difficulties we were having trying to live with DJ’s disordered sleep. He didn’t know anything about melatonin. Clearly didn’t WANT to know about melatonin. Certainly didn’t seem inclined to think it would offer any benefit. Maybe The Time Had Come to put DJ into Permanent Residence Somewhere. End of meeting.

This is Why You Need Confidence In Your Own Abilities as a carer.

Back to the Internet (a few weeks later - when we were again getting desperate, having discovered the benefits but also the shortcomings of herbal tablets). And what did Computer Whizz Kid, TH find ? – you guessed it, Melatonin. So we got some. And we tried it. And we had nearly 2 weeks of fairly normal sleeping for DJ (and us). Miracle of Miracles.

That was Then.

Now we’ve just had 4 nights of very disrupted sleeping. TH and I find this Very Difficult. DJ doesn’t – he usually gets allowed to sleep for bits of the day just to Help Survival Of The Carers. Today T from Crossroads was in for the afternoon, and had to contend with DJ demanding to go to bed from about 2.30pm……. We finally let him go to bed just about 6.30pm……. then he was up out of bed about every 20mins and pestering to get dressed from about 7pm, determined it would be morning if he wanted it to be……finally made him sit up with us at 9pm……but still not wanting his bed at 11pm...... it’s now 11.34pm and we’re hoping he’ll settle this time……

Has been at least partly related to Gut Gymnastics....

The melatonin continues. Last night I re-tried one of his previously-successful-before-Respite-abused-it herbal tablets……

……. SURELY he will be so tired tonight he will sleep……

Memory - or lack of it

DJ’s memory isn’t any more – well, not his short term memory. This brings endless frustration – not for him, because he doesn’t tend to remember that he can’t remember – if you see what I mean.

If You Live With Dementia you will know this one.

Like me an’ TH, you will no doubt find it difficult to understand, and astonishingly difficult to remember that DJ doesn’t actually mean to forget, nor intend to frustrate us. I’m also absolutely sure that he doesn’t intend to irritate the heck out of us. But, I confess, it happens.

So, for example, he forgets that he is getting dressed, and takes his clothes off again when he was almost fully dressed ……. like this morning when I nipped thru to the kitchen to check the porridge wasn’t burning – only to get back to him and find the tie off, all the buttoned shirt buttons undone again, shoes off and All Systems Go For Bed – an unbelievably reliable occurrence when getting him up to meet a deadline !

So how – HOW – when he is so so good at forgetting everything, does he remember the ‘Recurrent Themes’ ?

Like “When am I going home” ?

DJ goes to a Dementia Day Care Centre - well, it's actually the assessment centre, but there seems to be nowhere else that will accept him for day care now – our local Specialist day centre expelled him for being disruptive during his probationary six weeks……. fortunately the assessment place is being kind enough to us to keep him going along Mondays and Fridays at the moment………..

ANYWAY…. the staff deal with DJ’s repetitive “When am I going home ?” question by putting numerous pieces of paper in his pockets saying such as ‘we will take you home at 3pm’. What they don’t want to know is that after he gets home here this very self-same question continues over and over and over again for the next 3 hours or more……

I remember the last time TH took DJ back to his former home in a more northern city – where DJ had lived fifty years and more, and where TH lived and grew up – a well-kent place. But DJ was completely lost, couldn’t find the bathroom in the 2-bedroomed flat, wandered, fretted, wouldn’t settle or sleep…… so poor TH gave up on the Intended Tasks, headed back southwards and arrived home here absolutely exhausted after their 36 hours away….

Dementia is a poor trip. “Home” does not seem to be a place that he can go to for DJ any more, but a desperately vivid, unobtainable dream……….