I keep saying 'Thank you', don't I, and it never feels like quite enough. I came in last night, extremely emotional, to find OH surrounded by tissues and looking like death warmed up and clearly feeling absolutely awful that he couldn't be with his Mum too, so I just couldn't vent at him, poor begger. I dumped it all on you guys (again!), and as ever, you are all there. I think I would crack up without you all, and your support xxxx
I am a lot less fraught this morning (you'll be glad to hear!). The big positive to yesterday is that by spending the whole day there, I saw first hand what is needed and how impossible this situation is for the staff. Whenever they could, they left themselves one short in the lounge to have someone sit with Mil, to help me when intervention was needed to stop her ending up on the floor, or banging her legs and arms (even her head on occasion) against surfaces and objects that could have injured her. When there were periods of time that they simply couldn't spare someone else to be in there, they came running when I called for them, or hit the bell for help. They also came running on many occasions when even with a second person in the room, Mil was so resistant to being moved to a safe postition that more staff were needed to do the task without injury to her - or to myself and the other staff with me. There were at least 5 occasions when it took 4 of us to handle her safely. The key to keeping her safe is definitely having one person there, all the time, to summon the help when it's needed. Its also clear that an alternative is needed to pushing the bell button, because there were 2 occasions when the speed at which Mil moved left me quite literally stuck holding onto her, to prevent a fall or her determindly kicking out in a way that would have led to her injuring her legs/feet, and I couldn't reach the bell. I had to yell out for help, and thankfully, each time there was someone within earshot. You can get a plug in cable, with a call button on the end, but cables are easily tangled and would actually get in the way when you have your hands full with Mil writhing and screaming and fighting against you. Some sort of 'wireless' hand held alarm is needed - so now I know that, I can look for such a device and provide it asap. In addition to her becoming physically aggressive at all interventions, I also saw her go from the writhing and jerking to sudden violence, literally in the blink of an eye, with no provacation or predictability. In all instances, the aggression was accompanied by an almost unbelievable surge of physical strength and speed from Mil that quite literally took my breath away. She can punch and kick like a mule, she is so quick to grab and gouge or twist wrists and fingers and it takes two people at least to get her to ease her grip. I also saw her trying to bite - not an issue in itself as she has no teeth, but often the lunge at staff to try and bite was swiftly followed by an attempt to head butt. The 'writhing' and jerking also leads to what seem to be her involuntarily lashing or kicking out, again, without warning. I saw, over and over again, how she was so tired and tried to sleep and how each time, the spasms and jerks kicked in and woke her up, preventing her from resting. I counted 4 separate instances of her gouging at herself, or pulling her own hair out. I saw so many indications that she is hallucinating - she gestures, points , even holds her hands out to an area where no one is, and then has an unintelligible, one sided conversation - which can quickly descend into either tears or anger, the latter leading to her lashing out or screaming in fury. It took at least two staff to get food and liquids into her - one to give her the food or drink, one be ready to hold her so she couldn't writhe into a prone position, or to try and stop her hitting at the staff trying to give her food or drink. In addition, there were numerous occasions when she pulled at her clothes, lifting her top up and exposing herself - the door to her room has to be open for safety, without someone there to repeatedly 'cover her up', anyone passing would get an eyeful, which is an obvious compromise to her dignity. The last point may seem almost trivial in the light of all the other issues - but its all evidence and its still a valid reason we can use to pressure for the support.
With the experience yesterday (and possibly today too!) I can argue with absolute authority now about the need for 1-1. I saw first hand how dangerous it would be to leave her unattended. I saw the unpredictability of, the potential for and the actual occurances of injuries to staff and to Mil herself. I saw first hand all the different stratagies the staff tried - they were just desperate to keep her safe, it was a case of 110% effort in terms of ingenuity and persistence to try and protect her. I also saw how Mil repeatedly thwarted all those attempts. I have wracked my brain, thinking of aids or ways or means to deal with every issue I saw. I absolutely know that 1-1 is the only option. This 'manager' said to me on the phone that 'for example' it may be that she needs to organise an OT to come in and 'assess' Mil to see if there is some sort of chair/seat that will stop the falls risk, or if bed rails will help. Seeing Mil's agility and determination yesterday, I can see that bed rails would just be an obsticle that she will try to climb, and would increase the risk of injury. And that no matter what the shape or design of a chair, without restraint, she will get out of it - and that restraint will increase her agitation and distress. I suspect that the manager will try and insist on these steps, mainly to delay providing 1-1, but I saw enough to shoot those ideas down.
The bean bags seemed to considerably lessen the risk of her being able to kick or lash out at objects and cause herself injury, and also made it difficult for her to roll onto the floor. However, trying to get to her to give drinks, food or personal care is bl**dy impossible with the floor covered in them. I also am worried about choking risks whilst hse is in that situation. I think everyone who entered the room ended up tripping or nearly tripping, and at one point, I damn near fell on top of her. The bean bags remove some risks - but add others. Although keeping her free from injury is a priority, I don't think that having a 77 year old, terminally ill lady lying on bean bags on the floor is what anyone could call an appropriate situation.
It may be (please God) that I get there today, and the agitation and writhing of yesterday isn't present. She may be so exhausted after what added up to nearly 40 hours of her being in the state that she was in yesterday, by the time I left at 6, that she is just sleeping, exhaustion having finally won over even the TD symptoms that were stopping her sleeping for so long. She may be sat in a chair and we may even get smiles and hugs and some comprehensible speech. Any of those scenario's may last all day - or may change from one to another, without warning. There is just no way to call it at the moment - and I find this unpredictability pretty much the hardest thing to get your head round. There have been occasions over the last 2/3 weeks when if she was observed by someone not in the know, that they wouldn't understand why 1-1 is appropriate. There are a couple of occasions where I have even questioned the need, simply because she seemed so unresponsive and ill, that I honestly thought it would just be hours before she passed away. But then the next time you see her, all hell has broken loose, and you even end up wondering if 1-1 is going to be enough!
Today, I am going armed with notepad and pen, and, if its the same as yesterday, will note for myself every single incident and the times. This manager should get back to Mr Gethings office by tomorrow (I hope). I suspect she will stick to the not enough evidence stance. Mr Gething's office will get my notes, the photographs and the video by way of a response if that happens. I really, really do not want the video out there for public consumption, not at this time, if I can avoid it. But if needs must, no matter how bad it will make me feel, I will use it to get Mil the care she needs, if I have to. The meeting with the consultant, social worker and everyone else is scheduled for 27th of this month, 10 days from now. After yesterday and what I saw, that's too long as far as I am concerned, so I will be pusing for the support to be there sooner, by whatever means.
Thank you, so much, again, everyone - love to you all xxxxx