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........

WHERE are the chooks ?

On Monday night TH found a superb documentary from the BBC by a lady about her mother who has dementia. TH caught the end of the programme, then being a CWK, tracked it down on the ‘watch and listen again’ facility. So we saw it all after all. Entertaining, Harrowing and Inspiring. A most courageous undertaking to share so boldly.

DJ’s wife had Altzheimer’s Dementia. It ‘s a most cruelly demanding situation for TH, coping with a second parent with dementia.

We found this programme astonishingly supportive, admitting the emotional and practical difficulties encountered. Although every presentation of dementia is specific to that individual, so much is shared by many. And it changes. Sometimes daily – or hourly – so far as ‘details’ are concerned. But if you step back, you can see the more profound overall changes. Some of these are because you have found more effective coping or ‘dealing with’ strategies. Some of the changes are the deterioration.

One of the bells that rang for us from the programme was the difficulty of ‘pant pads’…… I’m sure these must be amongst the most uncomfortable things ever devised for wearing. And not easy to cope with on several levels. So it’s not at all surprising that the user with dementia takes them out and hides them. Dealing with the end results of that are not at all easy. But – enough !

An unsettled night for DJ, with the old GI tract playing merry mayhem at 5am. (giving thanks for 'pant pads' !) Not conducive to DJ feeling great. And it's raining again. So I’m letting him sleep on this morning, in hopes it will help him get through the day. T from the ‘Crossroads’ Support Organization is due to visit him this afternoon. They usually play dominoes.

DJ and I played for about 2 hours yesterday pm – it made the afternoon more acceptable than the morning had been. At the end of it we were both seeing spots...

HOWEVER - what I really really want to know is this. “WHERE are the chooks ?” This blog says it includes chickens………..

Well…. we’re still awaiting delivery of the henhouse. Current purchaser demands apparently far outstrip the production team’s ability to supply. We thought we’d have them by now, but though we were told ‘the beginning of June at the latest’, we’re still awaiting a delivery date.... We contacted a poultry supplier last week, and will probably have to wait weeks more for the hens to get here....

The therapeutic effects of handling hens sound considerable from internet trawlings, so I’m very hopeful that DJ will get some positive benefits from these new additions to the family. But at this rate we may never know……

Tuesday.....

What a glorious sunny day we had yesterday for the Public-holiday Monday ! Hope you had good weather and a good weekend.

Was a Good Day here – TH and Mr Mutt were finally recovered from the Major Upsets they had experienced after eating a hotdog on their trip north to pursue necessary dealing with DJ’s flat. A hard enough job at the best of times. Anyway, Much Was Accomplished before the Unexpected Onset on their way home, and 48 hrs later recovery was progressing nicely.

Meantime DJ, Ms Mog and I chuntered on fairly steadily. Did I tell you that the hearing aid has finally arrived ? Wax prevents full reliable functioning – but (hopefully) that will get sorted out by the GP on Thursday. (Same problem with last 2 hearing aids – each time we waited weeks for the District Nurses to come along and sort out the wax problem to optimise hearing function and Quality Of Life……… when they finally arrived, they insisted there Was No Problem and – as guidelines say ‘don’t syringe’ – guess what ? – they wouldn’t syringe…….. I’m now told the wax is very deep and tho softened by our regular use of ear drops, will continue to further compromise DJ’s compromised hearing until it is cleared – either by syringing, or by an ENT Specialist picking it out bit by bit……….) Meantime, we now have a fair chance of DJ hearing SOMETHING – though no guarantee of him either listening or responding……

So – it was worth trying the church service on Thursday – all went ok – so Sunday morning was also feasible. Bless his heart, DJ managed very well indeed ….. for the service. A Very Kind Lady from the congregation cheerfully decided she would look after him so that I could sing in the choir, and they managed very well together. DJ followed the service ok, stayed awake, and seemed pleased to be present. Cup of tea after. All Well.

And then there was a wedding. Needing the choir.

This was Not Ok for DJ. …… I guess I had been too optimistic, and hoping for Too Much.

There was no way we could risk disruption to such an important occasion. So TH stayed to sing (Tenors being in Short Supply just now), and DJ and I went off and grumped in the nearby park. Not sure who’s temper tantrum won – but it was all verbal – and we both survived…

And now it is an overcast and somewhat grim Tuesday….. DJ did not sleep well thru the night – kept getting up, for no apparent reason - just wouldn’t settle. So I let him sleep on this morning. Now he’s up, breakfasted, and Stomping About In A Grump. The zimmer bangs against everything, the door handles get pulled about, the feet drag and the vocal sound effects deserve an Oscar. And, sorry – but I’m not exactly The World’s Best Nice Thing this morning.

We’ll get the S.A.D. light out after lunch and play dominoes………..

Friday.....

End of a week – or start of the weekend ? Ha – there’s a question !

DJ started his day today in typical ‘Friday’ fashion – impatient and very very grumpy. How does he do it, when he basically has no evident awareness of which day it is…..

Waiting for the Day Centre transport is always a trial on a Friday. This morning he wanted to solve his impatience with the waiting by going back to bed…….. ChickPea was NOT popular for disagreeing with this decision…… Attempting distraction with yet another cup of tea didn’t really work – though did help his fluid intake for the day.

But the herbal tablets ‘to relieve anxiety’ presumably took effect eventually and helped him through the morning, as he seemed pleased to be going out when the transport eventually arrived, and the staff did not complain about his day when they brought him home. Great things, these. But disappointing that like so many things over these months, they have been a ‘last ditch’ finding. I tend to expect such things not to offer benefit, and sold merely as a money-making prop for the hypochondiacal . But I’m revising this opinion.

We tried the ‘standard medical solution’ to this problem of anxiety/restlessness/agitation (which all too often progresses to the disaster scenario of actual aggression) – in fact, I think we tried most of the sedatives available to modern medicine. The first dose of anything was usually helpful, but thereafter we were into a deteriorating and disintegrating downhill spiral of horror…….. And each time that he’s been admitted to hospital he has rapidly been not only sedated but seriously over-sedated in their efforts to control him…….. You can imagine the heartache of then trying to prove that he can be fit enough to get home, and that we can manage him ok at home. (At the moment).

Being a health professional – even from the ‘front line’ – has not gained any special privileges or credibility in these situations. If anything, you see the staff glaze over and stop listening…..

So, in desperation, in effort to try and continue home care, I tried these herbal panaceas.

And DJ seems happier, and better able to cope. TH is less aggrieved and better able to cope. And I am certainly happier and better able to cope.

And ………very keen to keep their effectiveness by not over-using them. So I try to use all the methods of distraction that I can think of, keeping the herbals in reserve as a ‘fall-back remedy’. This means that we end up using them just two or three times in a week. (And have to remember NOT to give them over to Respite placements….. when we did that they used them every day and they stopped working……. and we had to track down another herbal formulation that did work…..)

I’m not sure that I can finish this with ‘they all lived happily ever after’………. but the herbals are certainly helping at the moment.

Dotty

DJ was looking a bit grumpy. Often happens when he feels neglected – I’d been trying to learn how to blog, and then getting lunch. Oh yes – and no sunshine. Net result, DJ feeling low and neglected.

Well, life is much too short for that, so out with the SAD lamp to offset the weather, and out with the dominoes to stop him moving away from the light ….. and to keep his eyes open. Helps the SAD light take effect.

Do you play dominoes ? DJ does. For hours and hours and hours if he gets half a chance. And, miracle of miracles, concentration is never a problem when he’s playing dominoes.

It looks easy. Easy Peasy. Especially when you’re just playing against Someone With Dementia.

Forget it.

Eight games, and he hammered me every time. Even when he had a handful of doubles. I tell you, the Force is with him. And he knows it. There’s that wee smile creeps across his face. Makes it all worthwhile.

But he still tells the day centre that he can’t play dominoes and doesn’t want to learn……….

Shaving

So there we were, DJ and I, in his bathroom this morning. ‘Caring’ requires intimacy.

Many generations of ladies have no doubt mastered the intricacies of shaving the male of the species. I am making progress.

Slowly.

TH grew a beard because shaving was not a favourite pastime.

I now better understand.

DJ used to shave most competently, but his new shortcut of scraping at his face with a dry blade was causing an awfu’ mess, hence I eventually reached the conclusion that I’d better help out. ‘Dementia Guidebooks’ advocate helping The Someone Affected to do it for themselves…….. but that is only possible for so long. They don’t tell you that.

They give you the pleasure of Finding Out For Yourself. Nice.

Over these months I have discovered You Need Confidence In Yourself. Your instincts can usually be trusted. I guess new parents find this out The Hard Way too. Take Courage Carers.

We shall doubtless meet that one again along the BlogWay.

PS. Any shaving tips to assist technique ?

Sunday 18th May

Ah well – it was worth the try.

I have a ‘regular commitment’ on a Sunday morning, sharing part of ‘Layclerk’s’ former life. DJ was a part of that too, with the support of wonderful friends during the service. Then we had Disaster Sunday when DJ ended up in hospital having collapsed – that was a few months ago. He is a lot better now, and had his hearing aid arrived as hoped, we were going to once more attempt Plan A - The Excursion. But sans hearing, it would be a very long morning for him…...

So Plan B was next – get DJ up, breakfasted, settled with the newspaper and dozing in his chair, and TH and I would slip out for the 2.5 hours, get home ASAP and take DJ out for his lunch……..

Yesterday, when TH and I were both here all day, DJ slept…….. from 7pm Friday night, until I got him up for his breakfast at 11.40am Saturday, with just brief ‘ups’ at 10.20pm, 5am, 7am…… he then slept in his chair as often as my back was turned, getting increasingly angry that I wouldn’t let him go to his bed…….. about 5pm we took him out on wheels to the park (no – not on rollerskates – tho there’s a certain attraction in the thought….), and he had a bit of a walk as well – not very willingly, I’m afraid, but ‘Taking Exercise’ is An Important Requirement. So we managed to prolong ‘up’ until about 6.15pm. Even – just – managed to achieve the minimum of 2 litres intake required for the day (always more difficult at a w/e). So at last to his bed …… another good night (especially for us) re just up at 11.30pm and settled quickly….. and Plan B seemed like a real possibility……..

No chance.

The proverbial ‘cat on hot bricks’ would not have rated even close at 9.15am when we needed to leave. So – Plan C - TH left on his own. Again. I should be used to this sort of personal disappointment by now. Getting out on a Sunday is one of my Support Activities. Hasn’t been possible several times recently. Maybe ‘Hence The Blog’.

That this level of activity and restlessness usually links with DJ’s WC needs is usually of little comfort – his awareness and control of such is decreasing too. Part of his care needs. And so it was today. About 10mins after TH left – and now he’s dozing and dreaming – and looking for the ball at his feet that he’s convinced I threw just now………

Thank God for the Sunshine. It helps. Enormously. Have a Nice Day.

Communication

One of those wee things in Life that we Take For Granted. When we can, that is.

Domino Joe was a sheet metal worker, and now has significant hearing loss – or, as he would put it “Ah’m deef” (not a spelling mistake, but his accent). He usually has a hearing aid, wears it when I or TH put it in and turn it on – but then DJ still outwits us because he rarely listens. But that’s another story.

A result of his last ‘Respite’ stay was losing his hearing aid. So we are awaiting his second replacement within a year.

(A previous ‘Respite’ put that hearing aid into the washing machine. It didn’t do too well. They wanted US to claim on OUR insurance ! We didn’t. Eventually they did.)

Meantime, ingenuity rules – gain DJ’s attention, devise a way of holding his attention and of delivering required information. Did he understand – yes – but not what you said – marvellous the alternative versions he can find. Try again…..

If you do – or have – lived with dementia, I am sure you will know about this.

We mostly get thru this problem with a 'write on/wipe off' board - marvellous things (except when the pens all run out at the same time and you've not bought any spares......). Saves trees.

For the 'Regular Reminders' we use printed and laminated sheets. Saves Carer.

We should have gotten his new hearing aid yesterday afternoon. But – well – you’ve guessed – No. So another w/e without DJ hearing…… but also – look on the bright side – another w/e for Mr Mutt without the Whine Which Beats All Whines…….

Ha !

I was right - the gremlins were lurking to flummox me !

Hello !

Hello Reader !



Thank you for joining my voyage into the Unknown. Computing skills are not my strongest of skills or life vices.



Blogs vary – and this one may flounder and founder before ‘tis begun. We shall see.

Meet the Family

Let me introduce Us. The Chickpea family.

Of prime importance (‘cos he now pays the bills), is The Hubby, Computer Whizz Kid and ToyBoy. He is one of those people you meet who you remember. Especially his chuckle. I was in a large gathering the other evening, and misplaced him. He was running the bar for the event, but kept taking time out with (my) camera to record the proceedings. No sight of him nor camera – tried the hall next door, outside, the loo (you know how it goes) – no sign……… Then I heard laughter away over the other side of the main venue (behind a pillar).
Makes yer heart melt, that chuckle !

Then there’s Father-in-Law of now 94 who lives with us. He has dementia – so – To Protect The Innocent (give him the benefit of the doubt) – we’ll call him “Domino Joe” – or DJ for short. He’s quite short already, but you know how it is when you’re typing…… His dementia is getting worse, so I am absolutely sure he will be a Star Item in this Blog.

Ms Mog is my ancient feline companion. Nearly 19 years old, she remains as feisty as ever, and I often gain new scars to prove her point. But she’s fading. We have a fabulous vet who has seen us often over the past few years. We thought Ms Mog’d not see 2008 – but she remains adamantly present. I shall miss her when she moves on.

Newest addition to the family is Mr Mutt – a rescue dog ‘with issues’ who joined us about 18 months ago. We are trying to follow specialist advice to best care for this fellow – who we now love dearly, but have to accept is very unpredictable.

Yet to arrive are ‘The Girls’. We have decided to increase our family by about 4. As delivery of their henhouse has been delayed, I shall introduce them when they join us.

'Hello'

Welcome Kind Reader. I was feeling lonely. Thank you for sharing my voyage into the Unknown.

Computing skills are not my strongest of skills or life vices. I thought I'd managed to post this earlier - all seemed ok, but it never showed up on the blog. Maybe it'll creep in behind this one to flummox me further. I guess the technique will improve with practice.............

Blogs vary – and this one may flounder and founder before ‘tis begun. We shall see.

'Why ?'

So, “Why Blog ?”

Why indeed. “Why not ?” is an equally valid question. Maybe an answer will emerge along the way.

What I DO know, is that “People Matter.” A lot. So my blog will doubtless include people I know. But I shall endeavour to Protect The Innocent. The Guilty may not be so lucky. But there – who am I to be able to tell the one from the other ?