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…….