Here’s another set of journal entries on my life as a carer, to bring things up to date before Christmas. Then I’ll do another post to cover the Christmas period, which will take us into the new year.
The month didn’t start off well in terms of my career, as my support work role is now looking untenable, despite the government claiming it wants disabled people in work. So do excuse my rant in the first journal entry!
But at home things have been a lot better, in terms of Mum’s health and medical appointments, coupled with our preparations for Christmas. I was even able to meet a friend for a festive meal, which was lovely, and look at some of the decorations in the city.
So here’s what’s been going on so far this month, which I hope you find interesting as always.
Contents
Thursday, December 4
Support Work Cuts
I knew things were going too well, and given the political attitude towards disabled people at the moment, this latest development regarding my role as a support worker hasn’t surprised me. It’s utterly bizarre and totally reprehensible, and will severely affect the career of a good friend as well as my own if it isn’t changed. But it’s not a shock either, sadly.
When I started to work for my friend Emily nearly 3 years ago, the lady at the DWP who approved her Access To Work support was lovely. She was very understanding and ensured that Emily had everything she needed to pursue the career in journalism she had been dreaming of and had worked so hard to get into for a long time. She also offered me a very fair wage for my services, saying that I could ask for it to be increased at any time.
I only did 22 hours per week to begin with, but as it became apparent that Emily needed more support to fulfil the requirements of her role in line with her non-disabled peers, she asked Access To Work for an increase in her support hours on a couple of occasions, clearly explaining why. And it was granted without question each time, hence I’ve been doing 37 hours for quite a while now. I’m proud that my support has enabled her to pursue her dream career so successfully, we’ve worked brilliantly as a team.
Since then, however, the rules on support workers appear to have been tightened as part of cuts and restrictions to the Access To Work scheme, leading to many more rejections of applications, as the DWP don’t want to pay extra wages if they can possibly avoid it. Disabled people are an unwanted burden now, hence the government’s attempts to cut PIP, a lot of which they had to backtrack on. So I’ve been aware for several months that people have been having trouble acquiring or retaining support workers, and feared that Emily would also encounter problems. And I was right.
Having looked at her renewal claim, the DWP have informed Emily that they’re going to slash the hours that they’re prepared to pay me as her support worker from 37 (a full week) to just 8 (equivalent to one day). That literally makes it impossible to do her job, so she’s absolutely devastated, as you can imagine.
To add insult to injury, they’ve also given me the higher rate of pay I had asked for, a reasonable increase to take account of inflation – but with the cut in hours that still means I lose nearly £500 per week! So why bother increasing the rate in the first place if the hours are going to wipe out the benefits of it?
The way the email was written to Emily was also totally lacking in compassion and empathy, effectively saying Emily could talk to the lady who made the decision, but it’s a waste of time as she’s not going to change her mind. Emily has still had phonecalls with her regardless though, and the lady is at least talking to some of her colleagues about support for breaking news and weekend shifts, so maybe she can claw back some hours there. But ultimately Emily will have to go through the reconsideration route for appeal when she receives the letter confirming the decision, and of course she will be appealing it. She’s determined to fight it, and she’s got plenty of support behind her.
There just seems to be this fundamental misunderstanding that my support replaces Emily’s role, when it doesn’t at all. She can – and does – do the things I do, but it takes her a lot longer, and in a journalism role, or indeed any job, you can’t do things slowly. So I share the load with her to give her the space she needs to do the rest of her tasks.
I enable her to do her work, I don’t replace it, because we work together as a team, two people working as one. She can’t do her work without me, and I can’t provide a lot of my support until she’s done some of her work. I also can’t do the core parts of her job – devising and writing stories, conducting interviews, professional photography and video recording, etc. Being a journalist isn’t for me. But I can support Emily to do it using the skills I do have. That’s the whole point.
It just makes no sense. Well, it does given the fact that they don’t care. They know full well the impact it’s having on Emily and others, but she’s not important to them. And neither am I, as it doesn’t even occur to them that they’re cutting my job and income as well as hers. So I have no influence over this new decision. Even when I enquired about an increase in my wages as part of this renewal, I was dismissively told that I’m not allowed to talk to them and any such requests have to go through Emily – yet they still incorporated my request into their decision anyway. Which is completely at odds with the lady I conversed with when I started this job, who was perfectly happy to discuss it.
The DWP would of course be quite happy for disabled people’s employers to pay for support workers instead. But a lot of companies won’t want to pay 2 people to do 1 job, even more so when factors like increased National Insurance contributions introduced by this government have made it more expensive to employ people as it is.
If I look at this from a purely selfish perspective, then sure, Mum and I are in a fortunate position where we could manage if my support work role came to end. As a carer I could spend more time looking after Mum and taking her out, as there are benefits I can get to support me if I don’t have other income, and we have the practical and financial support of a relative as well. And I could always look for a part-time job if need be, or take part in research projects that pay a little bit.
So I’m not overly worried for me in that respect. But for Emily it’s a lot more difficult, and I feel very sorry and angry for her. It’s despicable that she’s being treated like this after all the hard work she’s put into the career she dearly wanted.
We’ll just have to wait and see what happens though. Emily’s going to appeal it, obviously, and we’ve also got a meeting with her employer soon, so hopefully she can get it sorted. But she shouldn’t have to fight like this to start with.
Monday, December 8
After a strange week given the news about Emily’s job, she had Friday and today (Monday) booked off as leave anyway, meaning I’ve had a 4-day weekend in which to relax.
Evening Out
So on Friday Mum and I had a nice quiet day, before I then went out and met my good friend Claire in the evening for a Christmas meal at Bill’s, where we had a lovely catch-up chat over delicious food. I’ll write about what I had in my next Christmas Favourites post, but altogether I was out of the house for just under 6 hours, my longest absence for several months.
The cold weather can affect Mum’s mind somewhat, and had already been starting to do so when I left, as she did get a bit disorientated. But she was happy for me to go, and was able to have fish and chips for her tea, which I had put in the oven for her just before leaving.
When I got back she was in good spirits, but explained that she had got a bit lost and confused at one stage, thinking that things had moved around, which is normal for her. So she had accidentally pushed the TV off its stand again, though thankfully it survived by being caught by the wall and equipment behind it. We could have a TV mounted on the wall of course, but that’s no good for me as I like to sit close to it. So at some stage we do want to get a bigger stand that can go back against the wall, and a bigger TV to go on it.
She had also smashed her tea cup, as she thought she was putting it down on the draining board but there was nothing there. She had managed to pick up the biggest bits though, and I found some other bits after I got home, as well as running the hoover round.
She had settled down again after that though, finding her way back to her armchair and listening to the football on the radio. And she was then able to find her way upstairs to her bedroom to put her nightdress on, before coming downstairs when I got back home. We then had a nice chat, while she also had a cup of tea in another mug, and she was in a happy mood despite her little mishaps.
So overall she did well really. Despite getting in a bit of a state, she didn’t panic and call me, and managed to get around safely, eventually re-orientating herself. And she’s still happy for me to go out again as well, it hasn’t put her off being on her own.
Weekend In
We’ve then just relaxed at home on Saturday, Sunday and Monday, as the weather hasn’t been very nice. So I’ve done some blogging work and other bits and pieces, including ordering some new mugs from Denby for Mum, along with a pasta bowl to see if that will work better than a plate to contain food for her, and I’ve been looking at getting us some new Christmas decorations as well. My aunt also rang on Monday night, so I took the opportunity to update her on my work situation.
Again the cold weather has made Mum a bit confused or agitated occasionally, but we’ve got through it. On Saturday she had another instance of thinking I was someone she didn’t like, and told me to go away, but I stayed with her and hugged her for a while anyway, and she did settle down fairly quickly, realising who I was. On Sunday morning she then told me she had got confused during the night, because her vision was all white and she thought she was in her bed in the garden. So she got out of bed and felt around, finding her bedside table and chair, and then the door to the landing, and realised she was still indoors. So she was able to go to the toilet and then return to the bed feeling reassured.
So on the whole, it does feel like she’s very slowly becoming more aware and accepting of the fact that her brain isn’t always telling her the truth about the world around her. It still wins out and convinces her of its misinterpreted reality to begin with, and it’s still pretty unsettling for her and frustrating for me, naturally. But she seems to be a little more able to realise it and question it than she was earlier in the year, and is a bit more prepared to believe me when I tell her what’s real. Not entirely, but more than she used to be. She also seems to refer to me as the ‘real’ Glen now, in contrast to the other version she mistakes me for, which is a change from her calling me the older or younger Glen. So that seems to be an improvement in her recognition of me.
Sunday, December 14
Support Work Appeal
This slightly shorter week at work started with a busy day for Emily on Tuesday. Firstly, she learned that she had passed her law exam with a 70% mark, which is brilliant. Secondly, she made another attempt to call Access To Work, and this time spoke to a lady who was nicer and more sympathetic about her appeal, and shocked that the hours had been reduced so much. The lady tried to ring the woman who had made the decision, but she still refused to change her mind. But this new lady told Emily that she didn’t have to wait for the letter to apply for a reconsideration and make a complaint, so she did both on the phone there and then. That doesn’t mean Emily will get the result she wants of course, but it’s a step in the right direction to get her support looked at again by someone different.
And then thirdly, she and I had a meeting with a few other people from her company to discuss how they can support her in the new year with her reduced support hours. I’ve said that I’ll do the 8 hours per week up until the end of the financial year out of goodwill, to give Emily at least a little bit of support while the appeal goes through, just in case it gets approved quickly. But after that I’ll have to stop, as I can’t afford to work on such a huge pay cut long term. I’m as angry with the DWP as she is, as their decision has insulted and impacted both of us, so I don’t want them taking advantage of me. If there are no consequences to their actions, they’ll assume they can get away with it again.
Indeed, there is part of me that’s tempted to stop working so I can spend more time caring for Mum, taking her out, getting stuff sorted out in the house, etc given that we do have a cushion of support to lean into. I have to prioritise Mum’s requests for help even when I’m working, and I have to take her out to appointments, but then I also have to make time to catch up on things I’m doing for Emily as well, which means I’m having to put in hours at evenings and weekends here and there. So it’s not the best arrangement perhaps. If I were to stop and later on found that I still needed to work for some extra income, then maybe something part-time would be better. Or maybe I can just do occasions jobs to bring in a bit extra, like with the audio description consulting I’ve done occasionally. But then again, if the DWP approve full hours at the new rate I requested, that will boost my income nicely. So we’ll see how it goes, and I need to think about it. The DWP have put me in a very difficult situation.
Christmas Shopping
Apart from that though, the rest of the week was pretty normal, although I did receive the new Christmas decorations I ordered from Amazon, including window and wall stickers, along with bunting and paper chains, and some Command hooks, so will gradually put those up day by day, as we want the lounge to feel particularly festive this year. We also bought some Christmas treats in our Sainsbury’s order, including a really nice Taste The Difference Yule Log that we’ve eaten over the weekend, and other goodies that we’re saving like a Taste The Difference Stollen Cake for Mum, a Tunis Cake for me and plenty of chocolates that we can mix together in a bowl to pick at. We were able to get quite a lot of money off using the Nectar points we’ve been accumulating as well.
I then bought some more goodies this weekend. On Saturday, I went out in the morning to M&S, picking up their delicious Turkey Feast and Pigs In Blankets sandwiches that we had for our lunches over the weekend, along with some Turkey Gravy and frozen veg to stock us up for Christmas, plus other general groceries. Then I went out again that afternoon and had a nice little walkabout in general.
Then today, on Sunday, my aunt took Mum out to our local Primark to buy a new coat and to look around a couple of other shops in the high street. And while they did that, I headed up to Oxford Street for the afternoon, having a walk around the area. I checked out Regent Street and Carnaby, spent some time browsing HMV, listened to the Ebony Steel Band playing Christmas tunes, and admired the Disney-themed windows in Selfridges as well as having a little look inside the store. And then before coming home I popped into M&S near Marble Arch to get a few more bits and pieces, including a Yule Log and a nice big Unsmoked Gammon Joint, among other stuff.
Both of my weekend outings were quite long – around 7 miles on Saturday and nearly 9 miles on Sunday – so I’m very pleased with that. Mum and I are both happy that I’m going out again like I used to. And she’s been fine when I’ve got home on both days, in good spirits and happy to see me.
For the most part she’s functioning fine on her own at the moment it seems. She’s still struggling to make herself a cup of tea sometimes, even with the smaller kettle I bought her, as she can’t always get the hang of aiming the kettle into her mug. But I think she rushes it a little bit, expecting it to be as simple as it always used to be, and she’s still asking me to make tea for her sometimes, especially when we first get up in the morning. So with more practice it will hopefully get a bit easier for her. And despite going out for a long walk (by her standards) with Sylvie, she wasn’t too tired later on in the day either.
So we’ve had a good end to the week. This next week will be my last full week at work before Christmas, although on Monday and Tuesday I’ll be out in the afternoons anyway, to take Mum to a couple of important appointments. Hopefully we’ll be able to relax even more for Christmas once those are out of the way.
Sunday, December 21
Appointments
This week started with a couple of pieces of reassuring news that made us nice and relaxed for Christmas. On Monday I took Mum in her wheelchair to Moorfields on the bus, without any issues this time, where the doctor who had performed the biopsy surgery was pleased to tell us that there was nothing wrong. The lesion on Mum’s eye had just been a freckle that had got a bit out of control (an intradermal naevus to give it its medical name), and the eyelid had healed up well.
And then on Tuesday I walked Mum in the wheelchair around to the fracture clinic, where we had to wait a little while for her to have an X-ray, but it showed that the bones in her wrist have healed nicely. Not quite in the most ideal position, sure, but it’s as good as it can be, so they’re not concerned about it. And while it’s still a little bit sore for Mum, she’s able to do her daily activities fine, and she doesn’t feel she needs any extra support with it.
So it was great to get those two things sorted in time for Christmas. The support work issue for Emily’s job still hasn’t been resolved of course, but that’s more stressful for her than me. We all had another meeting online on Tuesday morning, and while HR have confirmed they can’t fund extra hours for me (which isn’t a surprise), it was good to hear that they would be doing all they could to help Emily.
Deliveries
On Wednesday we then received our Denby order. Mum was happy to have received a pack of 4 replacement mugs in the style she had before, but she also rather liked their larger style Cascade Mug with a bumpy texture on the side that I also bought for her to try. It’s very distinctive because of the way it feels, and it has a larger flat bottom so it’s harder to knock over. So she’s started using that to have her tea now. She did try using the pasta bowl for her dinner, and got on fine with it, but she doesn’t feel it makes any real difference compared to a plate, so she’s gone back to the plate she normally uses, which I always put a guard around. But we’re keeping the pasta bowl anyway, just in case it ever comes in useful.
Mum then had a bit of a restless night for some reason, possibly because she had a bit of a sore stomach. She had been asleep when I came up to bed, so when she woke up she wondered where I was. I have my bedroom door shut when I’m in there asleep, partly to shut out the noise of things she listens to next door and partly as a signal to her that I’m in there sleeping, as it’s the only reason it’s ever shut. It’s also just nice to feel like I have a bit of privacy. But that didn’t stop her opening the door at quarter past three in the morning to check if I was there. So having just been woken up I felt a bit irritated that it wasn’t actually an emergency.
She then went to the bathroom to use the toilet, so I went back to bed again – only for her to then get lost in her half-awake state on her way back, coming into my bedroom to get me up again to help her. And, as is common when she’s in that state of mind, it took a few attempts to get her to understand where I was trying to guide her both physically and verbally. But I managed to get her back to bed, and she didn’t disturb me again after that, thankfully, though I didn’t get much sleep in the end, being a bit anxious that she’d open the door again. She then overslept on Thursday morning and had a few moments of confusion later in the day as well, because she hadn’t slept properly.
On Thursday we then had another couple of deliveries, one being kitchen foil, which isn’t very interesting. But the other was a Micro-Speak Plus handheld voice recorder with tactile buttons and audible prompts, which my friend Claire had recommended. Mum liked the idea of it when I mentioned it to her, as it means she and I can record various reminders and instructions on there for her to listen back to. So I’ve already added the list of washing machine programs, the speed dial numbers in our phone and the names of her medications for when she rings the pharmacy for top-ups.
Talking of the pharmacy, Mum also rang them on Thursday to order another bottle of melatonin pills, and they were delivered the very next day. I’m so glad we’ve got that on repeat prescription for her, as I had been anxious that it might prove difficult to get it approved, but we’re fine thanks to the recommendation from the mental health doctor.
Also on Friday, the Aniridia Network very kindly made a brief post on their blog about my ongoing journals about being a carer, marking a further bit of promotion on top of their newsletters, so that’s very kind of them. I’m glad that people are still finding these posts interesting. I’ve also continued to share the videos from their conference that I edited recently.
Shopping
On Saturday I was then able to go out twice. In the morning I went over to M&S in Stratford to pick up some more festive things and other general essentials, so I now have my traditional Tunis Cake and we have a new Yule Log that we can share at Christmas, along with Turkey Gravy and more mince pies. I also got us some more Pigs In Blankets sandwiches that we had for lunch, and they were lovely.
Then in the afternoon I went out for a walk, starting at Charing Cross, as naturally I had to check out the tree in Trafalgar Square, and it is looking a bit better this year. There was a small group of people singing Christmas songs by the base of the tree as well, which was nice. I then walked through Leicester Square andPiccadilly Circus, then up Regent Street to Oxford Circus, and from there I made my way along Oxford Street. I then went into the M&S store in Marble Arch, where I got a few more bits of food, including a Hawaiian pizza for me to have for my tea (which was lovely) and a top-iced madeira Christmas cake for Mum.
Mum was fine and very happy when I got home too, which was good. She got very tired while listening to the football that evening, but managed to avoid falling asleep until she felt it was the right time to go to bed, and resisting sleep like that is something she couldn’t do last year. She used to just nod off while listening to the radio, and then wake up in a panic because the noise of the crowd and the commentary made her think she somewhere else rather than at home. So for her to be more in control of when she sleeps is really good, again thanks to the melatonin.
That said, she was a bit out of sorts of Sunday, because she came down with a cold. She had mentioned that she’d felt it slowly coming on during the week, and it finally took hold more firmly, sapping her energy a bit. She did still cook and eat her dinner, but during the afternoon she ended up going to bed for a few hours. She did come downstairs for a little while in the evening, but then went to bed at her usual time and went off to sleep pretty quickly. So hopefully she’ll ride the peak of the cold over the next few days so she can feel better in time for Christmas Day.
Indeed, it seems to have taken a long time to get here, but Christmas is nearly upon us at last. I’ve been gradually putting up some of the decorations I bought during the week, including window stickers and bunting, so with all that and our Christmas tree, the lounge is looking much more festive now. And we’ve got more than enough treats to nibble on – the cakes, chocolates, shortbread, etc will keep us going well into the new year. So, provided Mum is feeling better, we should be able to have a nice relaxing Christmas. Here’s hoping!
Conclusion
So that’s where things stand as Christmas approaches, and thank you as always for reading through that. Mum has a cold, so I’ll probably come down with it soon too, but otherwise she’s physically healed after her wrist injury and lesion removal. So we’ll hopefully be able to have a relaxing time over the festive period after the rough year we’ve managed to get through.
I’ll share another journal post after the Christmas period to let you know how we’re getting on. And before then, the first part of my Christmas Favourites will be up soon, to let you in on the entertainment that I’ve enjoyed so far this month, along with one or two other posts I want to do. But regardless of whether or not you’ll be around to catch up on things here over the holidays, I hope you have a lovely Christmas!
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