5am

ChickPea has inadvertently joined the ranks of the under-sleeping these past many weeks. With frequent spells of similar over the previous months into years. If you too are caught in this scenario of AWAKE at some early hour, with Sleep happening to Others who you have no wish to awaken, then you have all my sympathy, empathy and commiserations.
   

Leaving your bed runs both the likelihood of becoming SO awake yourself that there’s no chance at all of getting back to sleep, as well as the risk of Awakening Others. However, if you have a bedfellow, staying in bed may similarly run that risk of Awakening Another as you re-arrange pillows/sleeping position/duvet/check the clock/etc...........
     

Gaining Insight into this scenario is a compensation, I guess, enabling greater understanding of the burdens of others.
   

The Feline Thing That Goes Bump In The Night has cottoned on to this timetable and appears about 5.30am for a little company (probably hoping that TODAY may perhaps Be The Day For An Extra Breakfast)... 
   

Concentration for prayer is somewhat absent. 
   

Recalling others in the blogging fraternity who share in this experience may perhaps reach out some support.
   

I suppose ironing in another part of the house is always an option........
   

And, of course, by the time the alarm finally sounds, sleep is tantalizingly close, so actually getting up for the day is no easier than if you have only just awoken.
   

But, however you look at it, this is not – currently - an ideal start to a day, nor conducive to cheerful outgoing self-projection, nor to positive working relationships........
   

Anyway....... have a good day. x

Is To Be Expected.........

We had expected Life To Be Different Without DJ. But hadn’t expected these overwhelming feelings of grief and loss, and the complete and utter dis-order of Life Turned Upside-Down……..

We all slipped quite gently into living together, several years ago. DJ was getting more lonely in his Northern Town about 400 miles away from TH and ChickPea. He enjoyed his holidays down to visit them. Truth be told, he wasn’t really feeding himself so well on his own, and he was getting a bit scared living alone. For TH and ChickPea there was little Impact On Life Here initially. DJ was independent and self-caring, ate with them, sat with them, watched TV with them, conversed a little. Didn’t want to go out much, but enjoyed coming along to church and sitting away up the back while his son and daughter-in-law sang with the choir towards the sharp end. Life was ok. A bit tight for space, maybe, because a 2-bedroomed house with too much clutter doesn’t allow much room for manoeuvre. But we got by…..

As changes crept in, so Life Accommodated. When DJ stopped bothering to eat on his own, the Support Team started to visit. When he got lonely on his own all day, he started going to a Day Centre. The Space Factor was dealt with by a purpose-built bedroom with an ensuite wetfloor shower room. When he forgot it was night time, he had a notice by his bed to remind him. Life accommodated so gently to start with we hardly noticed. The downhill slope was so very gradual, then.

When he developed the need for 24-hr care in September 2006, ChickPea stopped working to keep him company. She thought DJ would continue at home for at least 4-5 years yet......

ChickPea looks back now, and can hardly believe that the recent precipice was so hidden from sight. This crash was not expected yet. Sudden unforeseen loss of life maybe, a kind and gentle visit from the Grim Reaper in the depths of a night…… but not this catastrophic loss of sleeping and ‘domino-effect’ health deterioration. ChickPea had hoped we could continue until at least the end of the summer months. All kind of ‘civilized’ and kind of ‘manageable’. If only…... but some things you cannot control…….

DJ appears as well as can be expected, really. Residential Homes have the security of warmth, company, routine, absolutely and completely predictable mealtimes. Not too much unpredictability. He has been quite settled when ChickPea has visited this week. Calm, not Anxious or Fretful (these latter 2 Fearfuls had become regular companions for DJ here at home). Talking a little, seeming to accept honest answers to questions, managing to play dominoes with a little assistance. And he is clean, quite tidy, cared for. A few nights of falls and not sleeping, but that is as it has been recently. More than six weeks without full sleep wasn't going to be survivable for any of us - the writing was appearing on the wall, even if we didn't want to read it. The staff are great – all seem kind, relaxed, friendly, concerned. Willing to talk a little – but not too much – getting on with their jobs as necessary. There’s a good atmosphere. Helps ChickPea’s head to cope, even if her heart and emotions are totally screwed up just now. Is To Be Expected, I guess……….

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…….

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…………

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……….

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……

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……….