I feel the annoyance of things brewing up to a bubbling rant. Those of an easily offended disposition may wish to scroll on by.
There are numerous things that, to be exceedingly frank about, are f**king well pi**ing me off to a boiling a*** of steaming anger – or in other words has one mildly miffed.
Right then – the heating! So far four visits by various engineers. First was an electrician as some beep somewhere mistakenly thought it was electric heating here (nope), he concluded the wireless controller was duff. Second engineer came and concluded that the controller was likely okay it was the valves on the radiators. Third engineer came armed with hammers and valves, he clumped, bashed and clouted it into behaving and voila I had heating that was controlled by the wireless controller. Yes, sorted, that’s done. Then unexpectedly engineer returned again with orders to replace wireless controller with the upgraded one. Yeah, well, within fifteen minutes of him leaving the damn thing lost it’s connection, the radiators were boiling (at one point it was 28°c/82.50f). I did the take the batteries out and put them back but it still didn’t seem to control anything and it drops connection about every 15/20 minutes, so we just turned the radiator valves down to its lowest setting. You see I cannot contact these providers directly, I email person a who forwards it to rep b who gets company c to organise an engineer. Visit five being organised.
Bathroom. Back in early December a carer sat on the toilet seat lid and it cracked. All she did was lean forward to put my foot in the trouser leg and it split. It has been reported but it’s still not cracked. The cistern is a temperamental flush, the sink plug is one you push down to stay down and push to pop up except it doesn’t. The hot/cold indicator on the mixer tap is the wrong way round. The pump for the shower is slurring as slowing.
Care fees – way back way when I was first contacted about a possible flat here I had two immediate questions, can BFF stay for our holibobs together and how much is it. Reasonable enough asks, I thought. Thankfully the answer to a was yes (deffo deal breaker if no) and question b was I’ll get back to you. Eventually after numerous requests a badly photocopied brochure arrived giving pages of details about benefits and financial assessments, deferred payments with property sales, saving and investments limits etc and a line that said the fee was capped at £269 per week. This was the same as I was paying for current care so I could draft a possible budget plan. The County Council are responsible for invoicing and they run about 8 weeks behind, so January fees billed in March, but the buggers want immediate payment or you get a nasty in the post. I moved in the July, it took them until the end of August to change my postal address, despite being emailed weekly as a reminder and to ask for outstanding invoices sent to the wrong address to be emailed. In October I asked again but they said there was nothing outstanding. I chased various sections again and waited. To my surprise a bill arrived for the first 16 weeks (that’s to the first week of November) but the figure charged is £45+ a week more. F-a-r-k!! Emails whizzed off to various people asking the basic question – how much is it – and as yet no reply from anyone. Am I being charged different as a self funder, is this higher rate including kitchen meals I don’t have, or was I simply told the wrong figure or are there extra charges for things I’m unaware of – who knows. It seems those who should know, don’t know.
OT – as per previous rants, I ended up spending £3.5k on a 4ft profiling bed because initially they’d supply a small hospital bed (which I’d roll out of) before attempting to get permission for a better bed, which would be denied as I’m a healthy weight single lady, I’d only qualify for a 3ft bed. This would take approximately 5-6 months, so I ordered my own and got it here in four working days.
Which left the commode issue – I hate having to publicly admit this because it is degrading and personally embarrassing but since dignity etc is now a luxury I’ve just got to get over myself. Back in May 2022 I told OT I would need a different commode, as I would not be able to slide transfer to the porcelain throne. It would need to be a certain height so I can slide transfer onto it. I chased and confirmed over and over to make sure it would be there by the time I moved in, as you know, I’m good at most things but cannot not need the toilet at some point. Commode 1 was two inches higher than the sofa, I had zero choice but to defy gravity and force myself across, pinching my skin, breaking a stay in my brace, bruising in places and scratching myself on its corners. It was intolerable, my carers were appalled, the managers made an urgent call and three weeks later an OT wandered in, said I’d been sent the wrong one, that a right one would arrive. That took another couple of weeks. Again it was wrong, too low and my feet were dragging on the floor but they said they could raise it. Then they said they were waiting for the bits, then they said they were obsolete so it got cancelled without informing me. OT set about finding a different supplier who visited, took and wrote down measurements, as this would be a special request the once a month equipment panel would have to review and approve, this took another two months. Suddenly in December it arrived and was at the wrong height, they returned to adjust it and it’s maximum height again is too low.
Defeat has been called, towel has been thrown down, conceded stubbornness and with three emails one afternoon a commode to my bespoke requirements is being made by the same company who made my current shower chair some 15+ish years ago. Cost £560. As it’s a specific made to measure item delivery no later than end of February possibly sooner. But I know it will be right. Oh deities of all and any choice please let it be right!
Now the observant reader might well be thinking, if none of the supplied commodes work, then how is she……. you know….. draining the radiator or dropping the kids off at the pool, etc. Oh gosh, do I commit this truth to the forever world of the internet. Deep breath old gal. Well, my old shower chair with its aperture does have any commode pan rails to hold the pot, so it has to be stood on the floor, strategically placed to hopefully catch whatever descends. (Sorry if you’re eating your toast). The carers have been epic at making this system such a straightforward no bother method but still, sometimes not everything, you know. So yes, essentially this has been happening three or four times a day, every day since July 18th. *shudder*
Then there are the trifling little niggles that all add up to be frustrating, it is in my care plan, it is on a sign stuck to the wall, there is a sugar bowl next to the coffee jar and yet it is still a roulette game as to whether there will be none/one/two sugars in my coffee. A couple of things sent to the laundry have either gone walkies or been put away somewhere other carers cannot find them. The wardrobe chest of drawers must have a black hole in. Finally being able to attempt to make hospital appointments only to find either the consultant has to get the GP to or vice versa to make the referral, again it will be months before I can begin getting new back braces, or the EEG, or baseline respiratory clinic or…or…or… Oh yes and £50 travel costs to get to the dentist. I’m going to have to have words with them about how we do things, check up, x-rays, clean, done in one visit not spread across three or more.
Every month the care plan, the risk assessment and the moving and handling assessment is reviewed and signed, it comes round so quick. Management or Management’s management have decided to also include the question “Do you wish to review your respect form” that’s the new description for advanced directive or dnar or dnr, the bugger off and let me die choice. They better not ask me after an OT tussle I might say yes!
I’m not like the others here, except maybe one, and there are times I feel like I’ve moved to a care home where control of personal choice has been taken away and everyone is treated as if they’ve compromised mental capacity. It is not what I was lead to believe. Sadly for everyone I have a mouth and I’m not afraid to use it.
All my pictures are still in the box, I am so worn down by the frustrations and chasing I cannot think about what I want hung where. I miss seeing them, I’m connected to all my accumulated stuff. Maybe ‘soon’ the daylight will power up my solar energies mojo and I’ll get on with things.
I feel like I am being very moaning but this ‘independent living’ doesn’t seem to be gaining progress. It is all very deflating and wearing – plus it’s January, dark, dank, dismal…. ::sigh:: still could be worse.