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