Parts of me are broken. This is a place for me to record things that feel worth exploring. You are free to watch me trying to figure out my deal. I promise to be super honest, except when I am clearly joking!
Showing posts with label CARE HOME BLUES. Show all posts
Showing posts with label CARE HOME BLUES. Show all posts
Still in the shitbox care home. Neither my GP or the local respiratory team would sign off on a sensible plan to move me, just in case something goes wrong on the journey. It's ridiculous bureaucracy; nobody wants to accept liability on the off chance that something goes wrong when I'm at the furthest point from a hospital, even though it's a given that staying put is not an option. I've had to sign a form saying I understand the risks of moving (though really I don't, I just know I can't stay here!) and then pass two mental capacity tests (one set of questions posed by people from either end)! With all that red tape cut I was due to move today, only someone at the receiving end caught COVID, so they can't take new admissions. I feel like Sisyphus' boulder; scheduled to reach the top of the hill aeons ago yet never quite making it.
I have figured out the perfect funeral service for when I do kick the bucket. It's weird to think of the people who know me most intimately not being there, or knowing that I'm dead. Then again, I won't be in a position to care. So I'll try and capture my vision for it here in advance.
I've only been to one funeral, and I don't remember it lasting too long, so I've narrowed it down to four songs and a joke. I think that's reasonable. It wouldn't be a religious thing, but I've included some God stuff for them that like it.
I imagine it would take place in a crematorium. I don't know who would officiate. There would be a photo of me and behind it a slideshow playing of random photos I took on holiday in Portland; the absolute happiest I've ever been. To signify the beginning of the service my favourite song plays: "Another Girl, Another Planet" by The Only Ones.
The officiant would start by apologising on my behalf for making anyone travel, and that I hoped they took it seriously when I said not to wear anything they felt uncomfortable in or to have made any crazy sacrifices to come. They would tell the following joke:
There's a farmer who attends church every Sunday in a small village, but one weekend in the Autumn he realises that the window he has to harvest his crops ready for market is closing, and he can't afford to give up his Sunday morning, so he stays at home and reaps his harvest.
That afternoon one of the parishioners comes up to him and chastises him for missing a service. The farmer replies that he decided it would be better to be out in his fields thinking about God than in the church thinking about his crops.
The officiant would then point out that I hoped nobody would feel sad or uncomfortable at my funeral, but that I would appreciate them finding some time for me in their thoughts in the following days or weeks, as well as for my surviving family.
I wrote yesterday that in the downtime since my last post in August "I've basically been doing worse, physically and mentally." The word "basically" really does soften the blow there, doesn't it? Jesus Christ, what an understatement!
Since I last checked in to tell you about my health I've suffered three episodes of Hamster Heart (SVT), mini pulmonary embolisms, right side heart failure, sub-COPS level SAT readings, and weeping leg ulcers. I only found out about this today, other than the bouts of Hamster Heart, which are pretty hard to miss, the home had documented that they'd recognised the symptoms but not told me! Not that I could have done anything about it. Apparently I also go cyanose when I roll on to my side. I've graduated from a CPAP to a BIPAP (if you're reading this Vanessa, you called it!) and am also on 2 litres of oxygen for 16 hours a day.
To borrow another famous understatement: I told you I was ill.
Bested only by Leslie Nielsen's "Let 'er rip.
A few weeks ago I was visited by the mental health team. As I wrote back in March, I had a meeting with them in February and they came up with a bunch of ideas of how to help me in the room, but then sent me a letter saying: "As your current issues with your mental health are based very much on your situation, we are unable to provide any support until you have made steps towards changing your situation. We feel that at this time your needs are most appropriately met by weight management services and we would encourage you to work with them towards discharge from [your care home] and getting back into your own property. At this point if you are still struggling with your mental health, you can be re-referred back into mental health services."
As I wrote in March, this was a soul-crushing denial of help, a cruel Catch-22. It was like a lifeguard refusing to help a drowning man until he demonstrated strong swimming skills. One of the women I saw in February came back again last month, and told me in the room that I seemed a lot more depressed. She wasn't wrong.
Not only had the mental health team passed the buck, but weight management services have not met me either. Every specialist or GP I've met here has come to the home unannounced; they know I'm not going anywhere and that they will need to liaise with staff before meeting me anyway, so I'm always the last to know. Well, round about September my social worker told me that they'd written letters to me but I'd never got back to them. I explained I'd never received them and gave her permission to give them my e-mail so they could get in touch directly. A month later she asked why I hadn't written them back, and I told her I hadn't had any e-mails either, (not even in my spam!). I asked her to tell them to CC her so I would definitely get them, and that was the last I heard of it.
So I know the last post was me complaining about the lady from safeguarding who came to visit me. Today I received a copy of a report summarising the level of care the home provides for me. I was not consulted about the report, or even aware of it. Some of it I feel painted me in a poor light: you get the impression reading it that I am a glutton, and that I would be living a full, active life if only I could stop constantly stuffing my face with fatty foods! Weirdly, though, the report also contains a bunch of outright lies about the help I'm receiving and my ability to express myself and make decisions for my future.
I'm going to let you read the e-mail I sent to adult social care, because it reflects what a terrible job the home have done representing me. I sent a blind copy to my parents, and I think that this report, combined with the fact that three members of staff have caught COVID this week, have finally convinced them that anywhere would be better than here.
Dear ****
Today I received a copy of my review, ref ****. I was not informed this review would be carried out and was not given a chance to object to any of it. A lot of the information held within is not true, so I thought it best to clear up a few things:
The care home do not provide 3 or 4 staff to help with a body wash.
They do not provide 2 staff members to help with toileting needs.
I do not need help maintaining family and other relationships.
I do not need help with memory, awareness, planning and decision making.
The home does not offer help with behaviour or mood affecting myself or others.
I do not receive visits from the Community Nursing Team to monitor my skin.
The home cannot claim I am continuing to put on weight as they have never weighed me or taken physical measurements of waistline, circumference of upper arms, etc.
I was not able to contribute towards the review via phone, or any other method, as I was completely unaware of it.
I do not feel upset discussing my care and support needs.
I did not consent for the nurse to discuss these matters away from me.
My family do not visit me daily, mainly due to them living two hours away, but also in part because the home allows a maximum of two guests to visit during a week, booking in advance and visiting once, simultaneously.
The physiotherapy team did not require me to drop down in weight to 180kg before helping me. There is no maximum weight at which they will stop helping those who need it.
I have not been discharged from working with a psychologist and a psychiatrist because I refused to accept help.
I have not been in my current placement since 2016, and was in fact relatively healthy, living independently and holding down a full time job as a dry cleaner at this time.
There are other aspects of this report I disagree with - for example, I feel I would benefit greatly from assistance from the mental health team, and that my financial situation needs addressing as a priority due to **** Care Home's inability to fill out and return some standard paperwork in a reasonably timely manner - but the information that I have laid out above is fact.
It is probably worth mentioning I find the nurse who provided information for the report, Sue ****, to be borderline negligent. I went into hospital last December and the paramedics that dealt with her during handover described her as 'obstructive.' I went into hospital again this year because she told me an ear infection I had was getting better when in fact it had been getting worse. She has been lackadaisical treating episodes of supraventricular tachycardia I have suffered in the home, which is one reason safeguarding concerns have been raised on my behalf.
Thanks for your time,
Tankerton Latch
So that's me embracing my inner Karen! Tomorrow I have an unrelated group chat with the care home manager, my housing officer, my occupational therapist and someone from Adult Social Care. This report has only served to get me extra riled up!
I tend to be pretty laid back. I'll usually go with the flow, to the point where it's to my own detriment. I ended up in this dive because I agreed to move out of my temporary flat before all my concerns were met, I last went to hospital because I let the nurse here convince me my infections weren't as bad as I knew they were. I put up with a lot of shit, I think mainly because of my relationship with my brother growing up. He was a bully, and worked away at my self esteem, and when he stopped getting a rise out of me he started arguing with my mother. It takes a lot to put my needle in the red. But when it gets there, watch out!
In the Kill Bill movies there's a sound that plays when Uma Thurman's Bride character first encounters a member of the Deadly Viper Assassin Squad, post-coma. The camera focuses on her eyes, and an alarm sounds, followed by a quick six-note escalation. When it plays, we know The Bride is consumed by her anger, she'll leave it all on the floor as she goes after her target. She'll give all she's got, because these people will take it all from her. You can hear the sound here:
I've had moments where I've felt that way, as I'm sure we all have. And I'm sure I can't hear that sound in the moment, but I associate it so closely with that feeling of all consuming anger that I subconsciously add it when replaying these moments in my head.
The last time I felt it was whilst I was living in hospital after being kicked out of sheltered accommodation for being too much of a medical risk. Obviously I wasn't in the greatest headspace anyway, and then one afternoon I received a phone call from a telemarketer. I can't remember what the guy was pitching - pretty sure it was cheaper gas, though it might have been loft insulation - I can't remember what exactly it was, but it was definitely something you'd need to have a fucking house for. I said something like "You're barking up the wrong tree here, mate, I'm homeless and in hospital."
"You should move in with me, then," the cunt on the other end said.
I felt my face freeze mid-smile and my temperature drop. "What was that?"
"You should move in with me," the odious little shit repeated.
Well, I can't remember exactly what I said. I know I didn't swear or give a reason for the prick to take the moral high ground and hang up. I remember channelling my inner Victor Meldrew, first berating the poor bastard, then demanding to speak to his supervisor and asking what sort of outfit she was running, employing callous little sociopaths, asking if they were given any training or instruction or whether they were free to harass and insult whomever they liked... I was properly livid!
I had some of the same sense of anger on Friday when I met Danielle, my safeguarding officer. I was feeling pretty rough anyway, she hadn't let me know in advance she was coming, and I got the feeling she just wanted to get my paperwork off her desk rather than actually helping. Remember at primary school, when kids would argue, some grown ups would let both kids have their say and work out what was fair, whilst others would just make the kids shake hands and promise to behave? That was very much the vibe I was getting off this woman.
She started off asking what my goals were. I told her I wanted to leave this place. "Where to?" she asked. I told her I didn't know. I told her I wanted to be able to get out of bed and into a wheelchair. "Do you know what that will actually take?" she said. I told her I didn't. She said losing weight would help. I told her I've cut out sugary drinks, replaced crisps with healthy snacks, kept a food diary, consulted with a dietician and the kitchen staff, and that for nine months all I've had is earache about losing weight but that nobody is actually weighing me. She asked if I'd considered food substitutions. "For example," she said, "I really love ice cream." I told her I haven't had ice cream since moving in here. "Okay, but what I do is, instead of having Ben & Jerry's, which is 2000 calories, I'll have Halo Tops, which are 300 calories." I reiterated that I'd quit sugary drinks for water and potato chips for healthier equivalents. "The thing about healthy alternatives is that they do still contain calories; you can't eat them all day." I told her I had a snack between dinner ending at 5pm and breakfast starting at 8.30am. She then went on about the takeaway I had last week, saying that "one cheat meal can undo a week's good work." How about one in nine months, after they'd forgot to make me dinner? This woman was not winning me over!
At this point she decided to let me know why she was here to see me. Two separate safeguarding concerns have been raised, one by my occupational therapist about the home's failure to reposition me, and one by adult social care about their mistreatment of my hamster heart episodes. I guess her thoughts on dieting are an added bonus for her fat ass clients, whether they want it or not? Lucky me!
Well, she said, it's good news! The home have put their hands up, admitted they've done wrong, and are going to be better from here on out. I guess that makes up for shirking their duties for the past nine months? Am I supposed to be reassured now? To take them on their word that it'll be smooth sailing from here on?
"So, have they been repositioning you?" she asked.
"They started to, on Tuesday, knowing that safeguarding concerns had been made, and they bollocksed it up."
"How did they bollocks it up?"
"They repositioned me the wrong way, undoing the work the occupational therapist has been doing trying to straighten me out. I wrote to the occupational therapist on Tuesday when they did it and she sent one sheet of instructions to the care home manager on Wednesday morning. I've seen it, and I've told them not to move me until they've read her instructions so they know they're doing it right. One side of A4."
"Okay, well I know they've been trying to reach her. Is there anything else worrying you? The staff here say you're quite down.
"Yeah, my finances. My PIP payment was stopped in February, and because the home took so long filling out the paperwork to get my benefits reinstated I've dipped into my overdraft for the first time since becoming honeless, which is one thing I never wanted to happen."
"Ooh, I'm with you there, I don't believe in going in to debt." Well, 80% of the UK are, so maybe there's a colleague that can explain how fucking awful it can be? Maybe teach you some basic empathy as well? Unbelievable. "Well, I don't deal with the financial side of things, but I'll make a note to pass your details on to my colleague who does."
She then started to give me her deeply patronising wrap up speech - bare in mind this was my first time meeting this bitch, as far as I know she knows nothing about me or what I've been through already.
"Well, the good news is you're still very young, you've got a lot of opportunity to turn it all around. It will take a lot of graft, and it will hurt, and you will cry. Hey, but at least if you've got yourself into a pickle with your money then you won't be spending it on things like takeaways!"
Aaand there goes my inner alarm. Awee-orr! Awee-orr! Duhn duhn duhn duhn da-duhnnn!
"The fuck did you just say...?"
"I haven't got into a pickle, the home spent so long filling out a simple form that it put me into debt. Because they don't care."
"Well, we don't know how long these things take-"
"Yes we do. Because the same form was sent to the hospital, and they sent it back within a week. All they had to do was write down how long I've been here and how much care I've been receiving, and it took them three and a half months. And now I have no money to my name, but I'm still paying these people once a month as if I had."
At this point I think she left, I can't remember her saying anything else, certainly nothing of value. I basically slept through the following 48 hours, that white hot anger took a lot out of me. I realised writing this I'm still angry about it! I was going to write a couple of things about Strict Julie's cornertime post, maybe revealing a couple of things in the process! But I realise I'm definitely in the wrong frame of mind, and am likely to cause myself trouble there!
Yesterday I had a visit with someone from Adult Social Care, the first I've had since moving to this shithole nine months ago. She's going to raise a safeguarding concern in the county that's funding my stay due to their terrible handling of my hamster heart episodes. My occupational therapist is raising one about the lack of repositioning, so hopefully they'll get me out of here soon!
The Adult Social Care lady also set up an online meeting between me, the care home manger, my housing officer, my occupational therapist, and herself, in order to discuss some complaints I've raised (the hamster heart treatment, the repositioning, the lack of Wi-Fi, the absence of a blood pressure cuff).
On a completely unrelated note (!) today was the first time in nine months the care home followed my care plan, hoisting me in the air to change my and repositioning me every two hours. They're using an old pregnancy pillow instead of the fancy decubitus the OT asked them to buy, and J can certainly feel the difference, but it's better than nothing! They even remade my breakfast sandwich because they used white bread instead of brown (The brown bread's all right, the white is over-processed, tasteless, bleached shit) and told me to let them know if I needed any other changes to my meals! I've been repositioned four times today, which is great because the previous one was literally three or four weeks ago (I remember it was a Sunday, I just don't remember which.
Of course, nothing in this place ever goes quite right. They started with the cushion under my right side for two hours to straighten me out, which was fine, and then left me on my back unsupported for two hours to ensure there are no pressure sores, which is also fine. They then put the pillow under my left side, so I was tipped over more to the right than usual. I couldn't even look at my laptop screen in this position - I'm holding my Amazon tablet dead in front of me as I type this and it's literally at an angle of 45°. All my weight is on my neck and the top half of my right arm. My right ear is touching the bedsheet. I told them that I need to be laid straight, but Ruth the head carer was adamant this is how repositioning works - with you on your right side, then your back, then your left side, then your back, and so on and so forth!
I appreciate that is probably how it works with most people, but with my spondylitis the last thing I need is to be spending a quarter of my time pushed further over to the right than I naturally am anyway. I've e-mailed my occupational therapist and hope common sense will prevail. Annoyingly, the day shift went home without removing the pillow and setting me flat, and the night staff carer didn't want to take the pillow out on her owm, so I pulled it out myself after being extra off kilter for three hours. I'm sure the OT is going to go ape shit!
Good morrow, my poor neglected Malpals, you're all looking fine! Please forgive me for my absence! I haven't been doing great the last few weeks. But I write to you today in a state of happiness far greater than any post-orgasmic afterglow!
It seems I was taken off my antibiotics too early, as my mastitis never went away, and has now flared up again. I'm seeing a physiotherapist twice a week, though he is not nearly as hands on as the one I had coming five times a week whilst I was living on my own. I agreed to move here because my carers at the time told me this was a dedicated rehabilitation facility, and that I could be receiving physio all day, every day if I wanted it! Eight months without help later and I have a lot less strength and movement. Never mind, at least I'm on the road to success again!
I've also had two episodes of hamster heart since I last checked in! Regular readers will know that's my jokey name for supraventricular tachycardia, a condition that causes my heart to beat at around 265bpm. You'd think it would be awesome, like when Fry drinks 300 cups of coffee in Futurama and time seems to slow down for him, or when Neo dodges bullets in The Matrix. What actually happens is your blood moves through your lungs too quickly to take on oxygen, and you die if the issue doesn't resolve itself. Fortunately both times I was able to sort it through tilting my bed (I'm bedridden and living in a care home, if this is your first time reading this!) but on multiple occasions it's needed treatment in hospital, with pretty serious drugs. It can (and nearly did!) require defibrilation. Well, of the two times I had it only once did my so-called "carers" ring the emergency bell for the nurse, though I asked for it both times.
The first time it happened I told the carer, in front of the nurse, that it's a serious condition and I need her to ring the emergency bell if I ask her to. I expected the nurse to have my back. Instead the carer told me that she has to use her own judgement before ringing the bell, and would only ever ring it if a patient was out cold. I told this to another nurse and she said I should have reported the carer; I said another nurse had witnessed the whole thing and hadn't said anything. The head carer submitted a report to the manager for me before, and nothing was ever said about it. Why waste my time? Surely telling two nurses is reporting it? My patience with this place has basically eroded at this point.
The second time the carer did ring the emergency bell, after I insisted, and the nurse left me unattended for five minutes whilst he went to look for an oximeter. A room in this place starts at over £400 a week, shooting up to near £600 depending on the level of care you need. They should really go fuck themselves.
All of which is to say, I haven't been feeling awesome, nothing much good has happened, and so I haven't felt like blogging. Well, that all changed today, because PIZZA!!!
I haven't bought pizza since moving in, but I have bought this awesome hat!
Hey-o Mal-Pals! I don't have a whole lot to say, though there have been a few happy developments since I last posted! I have just started on the final chapter of the Julie and Sue adventure, but it is slow going. I have other pursuits these days! I originally intended to annoy her with another silly ending, but have thought of a strong conclusion that I hope will illicit a better reaction. I'll write the original ending at the end of this, because it's too good to stay in my head, and that's what this blog is for. But before that I should fill you in on what's occupying my time! This really will be a checklist of things going on with me rather than anything with a point, more a journal entry than an article. I hope that's okay!
First off, my Reddit game is stronger than ever. I had a frank conversation with Babycakes, letting her know that I enjoyed playing with her but she was so submissive and amenable that I was struggling to know what she wanted or whether she was truly enjoying any given move I made or if she was just placating me. We shared some truths about ourselves and now we're closer than ever and both getting something out of it. She's very smart and will now let me know when something's bothering her whilst still staying in character. We had this exchange earlier, set in a Chinese restaurant, that I enjoyed very much:
Me: It's very satisfying watching you tuck in! You seem to be wearing a good deal of it too! And there's some on the table and the floor... My first idea was to bring home a large set meal, but this was so much better, someone else can deal with some of your mess for once!
Her: I’m sure I can help with some of that, Daddy. I put it there, I can do a second pass at getting it inside me.
I imagine you'll do okay slurping errant noodles off the table and sucking sauce out of your hair, but people will probably object to you getting on all fours and eating rice off the carpet, wiggling your diapered bottom in the air. I would like the option to bring you back, so don't get us kicked out! Or worse! Do you know what happens to bad Chinese boys and girls?
There’s an interesting question. Are we talking the majority Han, or oppressed minorities such as Tibetans or Uighurs? The big cities such as Shanghai or Beijing or the various provinces? Big place, China. Hugely diverse population, with a whole range of different traditions. So, yes, lots of things, but which specific bad things would require a finer brush than one that paints all 1.4 billion at once, to say nothing of the half a billion expatriates.
I’ll try not to get us thrown out, Daddy.
I certainly hope you're not implying I was about to be racist, or to over-generalize! I like to think I'm fairly liberal and forward thinking! I know I was a little silly pretending not to recognise your foreign words earlier, but that was self depreciation rather than homophobia. And you obviously know a lot more than I do about Chinese culture, I wouldn't want to offend you!
Oh, not in the slightest, Daddy. I’m extremely hard to offend, though we do share outlook and intent. Though my backside may indeed be the most offensive thing in the room. I can’t really tell. I’ll get on with the eating. Table scraps fine, floor a no go.
And I'll make a second trip to the buffet. I was going to say they have to report to Hunan resources.
