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……….

Sleep (1)

For many of our twenty ’24-hour care’ months with DJ, sleep has been a Most Precious Commodity. Quite quickly TH and I developed the habit of sleeping with at least one ear open, in hopes of not being awoken by the bedroom light being turned on unexpectedly at 2am…… To hear DJ approaching before that moment is certainly preferable….. quite how he gets up the stairs without making a sound is astonishing – certainly, neither TH or I can manage it – and in the days when Miss Mog ruled downstairs as well as upstairs you ALWAYS heard her ascending ! DJ is no lightweight, and the Assessment Centre clearly disbelieve me if I say he is capable of understanding his actions….. so WHY then does he CREEP around the house at night ?

A crashing sound is also an unfavourable way to be roused from sleep, especially for TH who has to get up for work the next day. DJ has mostly managed to bounce most resiliently (he evidently has a most attentive Guardian Angel) - but his skin is extremely fragile, and it can tear very easily when he falls. A little blood can go a long, long way if you’re fast asleep and didn’t hear anything……..

So TH (who used to work with housing for special needs tenants) and I (formerly a health care professional working with seriously acute health problems), quite quickly identified 2 needs:
(1) We needed a system to inform / awaken his Main Carer if DJ was out of bed;
(2) This same system must NOT wake TH……..
We were, of course, a bit more specific about other requirements of this kit. Oh yes, and we searched the internet and found 3 systems, but the manufacturers wouldn’t supply us directly, needing a social work referral…

At that stage we didn’t have a Social Worker……. and without a ‘Named SW’ we could get precisely Nowhere. I think we’d push harder now. ‘Duty SWs’ were really out of their depth, and passed the buck… It took 6 months to get an allocated SW. Then it took another 6 months to persuade said SW that (a) such a system was necessary, and (b) that such a system existed……. THEN we were allocated to an OT…… so had to jump thru all these same hoops all over again – and then the OT passed it to a ‘gadget man’ who had to find a significantly cheaper product… never mind that it was cheaper for a reason (like being unreliable, and uneconomical on the batteries that – oh, surprise ! - WE have to fund)……..

So – it took about a year to get a (very limited) system (“which we wouldn’t normally supply, but have done as a special favour to you” - and yes – I think that WAS actually said to me by ‘The Professional’).

And then…… the system failed over and over and over again. (Wonder if that’s why the Altzheimer’s Info Technology site - see http://www.atdementia.org.uk/default.asp - don’t recommend this one….). Poor ‘gadgetman’ had to come back to us again and again and again, and given that he is only paid to supply, and not to maintain equipment, it was very very kind of him………

TH and I cracked the wasted battery farce by purchasing a battery tester, rechargeable batteries and recharger. At Great Price, of course – though significantly cheaper than the accumulating cost all those standard batteries which had to be replaced (and which were subsequently found to be ‘full power’ by the new tester……… )

So now, assuming the ‘change battery’ sound hasn’t started after DJ has gone to bed (ever considered that hearing problems may be a blessing ?), and Sleep has allowed us access, TH and ChickPea now gets some ShutEye, knowing that if DJ gets up, ChickPea will get woken by a wee ‘personal pager’ buzzer, so can deal with the ‘Why ?’ factor.……. Good, eh……….

12 Things That Go 'Bump' In The Night.......

1. DJ falling over because he turned off the automatic light and won’t use his zimmer……
2. DJ opening his wardrobe door because he KNOWS 2am = 2pm and he should’ve been up and dressed hours ago……
3. DJ falling over his zimmer ………..
4. DJ trying to open the front door by pulling the door handle off…..
5. DJ falling out of bed……..
6. DJ banging his bedside drawers because he’s lonely and wants to be sure he’s not the Last Survivor in the house……
7. DJ falling over because he was taking his pyjama trousers off when walking………
8. DJ trying to break the window because he thinks he needs to get out……
9. DJ banging the lounge / kitchen / understairs cupboard / any other door he can find, ‘just because’ or ‘just in case’………
10. DJ just falling over – ‘How’ and ‘Why’ being largely irrelevant………
11. The ‘DJ-is-out-of-bed-alert pager’ somehow making sudden contact with the floor……
12. ChickPea trying to hide in the wardrobe……

'Scottish Episcopalian' ...... ?

So wot’s this then ? Is it dangerous ?
Sometimes – tho maybe not often if you live in UK.

I’d been Christened ‘Anglican’ as a babe in arms, went to Baptist Sunday School (‘cos it was just around the corner), graduated to essentially non-denominational ‘Crusaders’, enjoyed the pride that goes with carrying first a Brownie Pennant, then Girl Guide Colours at Church parades. Then in teenage years I spent most of my Sundays with schoolfriends at the local Free/Evangelical/Non-denominational/Non-conformist church, encountering an intense spiritual crossroads of memorable and life-changing significance which turned all the switches of my deep inner life to ’On’. My Christian Life seemed well mapped out - until a No-Nonsense Nudge From The Almighty resulted in a Mighty Move into my local English parish church. Hello, High Anglicanism. Wow – now That was a surprise ! Evangelical Folk Singer to Traditional Sacred Choral Church Music in 6 months. Mmmmn.

When I first came to this city, far-ish north of UK, I was living across the road from a big church. So I eventually called in one Sunday morning – and the eucharistic setting was ‘Merbecke’ – HEAVEN ON EARTH ! - HOME ! And I met folks who became closer than my far-flung relatives, and I got kinda stuck onto the superglue of the place………

And that’s how I became a Scottish Pisky…………..

Chooks Update

Well……. we heard today that our ‘Omlet Cube’ henhouse will be delivered on Friday 4th July…….. so, yet another month to wait again from here…….. My brother in Devon would no doubt say we should settle for a much cheaper and more accessible alternative. But we have a lot of foxes around here, and ‘Omlet’ seem confident that their design is very effective against foxes. User Reports on their website seem to support this claim. So I guess we just have to wait. And yes – we fully understand that 4 hens would live quite happily in the ‘Omlet Eglu’ – but I for one do not fancy getting down on my hands and knees on our muddy lawn to clean the ….. er….. poo tray. And we want to provide best care so’s to keep happy and healthy hens. The height of the ‘Cube’ appears much superior re user-friendliness and back care. ( See www.omlet.co.uk ) And as TH and his back are frequently at odds, I am keen to optimise the chances of him actually doing his share of the chook management tasks !

So I guess we’ll just have to be content and continue with the ChickPea Family as we are just now.

Patience ! Calm ! It is only another month, after all........