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.