Welcome to the next part of my carers journal, in what is set to be an important transitional month for us, as my mother is hopefully coming out of her cast in the second half of October. We’ve also had some very significant news this month that will greatly enhance her ability to get out and about again, and we’re still looking into her long-term care options as well. So there appears to be light at the end of the tunnel if everything works out. Here’s what’s been happening during the last few weeks.
Contents
Sunday, October 5
Wheelchair Referral
While Mum is still having issues with sleep, anxiety and panic as usual, this month has got off to a pretty good start, with our most positive development to date, because she’s been approved for a wheelchair already. I had taken my time to fill in the form, clearly explaining why her blindness and frailty made her mobility much more difficult and placed her at greater risk of falls, especially when going out and walking long distances. The lady from our disability support service then sent it off to the relevant team, saying that it would probably be quite a while before we hear anything given their long waiting list – but then just 2 days later we had a phonecall from the wheelchair team saying the referral had been accepted!
I had already been able to give them Mum’s height and weight on the form, because it was in the discharge paperwork from her hospital stay in August (and indeed her recent medical history may well have influenced the speed of their response). So I just had to confirm that she needed a wheelchair for outdoor use rather than indoors. The lady said that they had to order it from the manufacturer, which would take 4-6 weeks, before it would then be delivered, meaning we might have it by Christmas. It will come with a cushion for comfort and a seatbelt for security, they’ll cover all repairs through a company they use, they’ll come and do a maintenance check every couple of years, and it will be on loan for as long as Mum needs it.
So we’re over the moon about that. Mum’s confidence in going out has been increasingly eroded in recent years by her blindness, tiredness over long distances, and now all of the falls she’s been having, and it had been quite a big mental and physical effort for her to go out with her sister to the park and the fish and chip shop recently. So a wheelchair will eradicate the risk of falling and tiredness altogether, and enable her to get out and about much more easily with the help of me, my aunt or a carer. So she’s really looking forward to being able to go to the park, shops, salon, theatre and so on again much more safely. It’s really perked her up – although a big part of her isn’t quite going to believe any of that is possible until it actually arrives.
She’ll still walk short distances sometimes of course, as she doesn’t want to stop using her legs completely, obviously, and she needs to stay a bit active for her balance. But having a wheelchair, and a free one at that, will allow her to get out of the house properly again at long last. There are organisations that let you pay to hire wheelchairs as well, such as the service provided by the Red Cross (who sadly don’t have any available in our area anyway, we’ve discovered). But if Mum’s new chair is only a couple of months away, we might just wait and save the money. We’ll see how things go.
Physiotherapy
Apart from that, on Wednesday the physiotherapist returned to continue Mum’s balance exercises, and was happy that she was doing them correctly. She was then immediately followed by an occupational therapist lady who spoke to Mum and saw how she got in and out of bed, and how she got on and off the toilet. She’s happy that Mum doesn’t need anything for her bed, but she is going to order a better toilet frame for her, as the one I bought on Amazon is alright, but there are better ones.
She’s also referred us for help with cleaning as well, and I got a call from a lady about that on Friday, who explained that we’d have to pay for that, which is fine. So she’s given me the number of a company called Fantastic Services who I can call. I expected them to be just some small local firm, but when I found them online it turns out they’re a huge company who claim to provide all sorts of services across London using trained and insured experts, many of which we would find useful – assuming the company’s any good, and their 4.6 out of 5 rating on TrustPilot from over 46,000 reviews suggests they are. So we’ll try their cleaning service when I get around to contacting them, and if it goes well, we’ll look at their others too.
Sleep & Melatonin
On Thursday, meanwhile, the mental health doctor rang to see how Mum was doing, so I gave her an update on everything. Given that GPs are reluctant to prescribe melatonin long term, she’s thinking of trying something else instead, like a sedating antidepressant, to see what effect that has, given that anxiety does keep Mum awake sometimes, even when taking melatonin. But she’s going to come and visit Mum again to talk to her about it first, which will be good, and she’s booked that for next month.
In the meantime, she’s prescribed another month’s supply of melatonin to keep Mum going, so I’ll be able to pick that up next week when the pharmacy have ordered it in. It would probably be good for us to try other things, because if we do so, and if it turns out that ultimately the melatonin is the best option, we can then go to the GP with proof of what we’ve tried and push for a long-term prescription for melatonin.
Socialising
On Saturday I then got to meet up with my friend Claire, who very kindly came down to my neck of the woods again. So we had a lovely lunch and a catch-up chat, and she’s continued to be a wonderful rock of support. Mum was also still calm and in good spirits when I got home, despite me having been out for a few hours, which was nice. She hadn’t phoned me at all, even resisting the temptation to do so at one point, and used my “Where is Glen?” command on Alexa as usual to reassure herself of where I was, as I kept it updated. I had cooked her fish and chips for lunch before I left, so that kept her going nicely.
Finally, on Sunday, Mum I did a Lush order and booked our M&S Christmas food collection in the morning, but apart from that I just got some little jobs done, helped Mum with a few bits and pieces, looked up some information online and did some blogging work. So it was a nice relaxing way to end the week.
Sunday, October 12
Daily Life & Sleep
Daily life has continued in much the same vein for Mum and I this week. She’s still wearing her cast, counting down the days until it’s due to come off, but she’s not feeling much pain in that arm now. There have even been a few days where she’s only taken painkillers once, when going to bed in the evening to be on the safe side. She had been taking them 3 times a day to start with.
As for sleep, the 4mg of melatonin she’s taking has continued to have a limited effect, granting her a little bit of shut-eye each night, but not enough. It appears to have shifted her body clock as well, as she now tends to feel tired in the evening more than during the day. She still falls asleep in the lounge and wakes up disorientated and panicky though – it’s just that it happens in the evenings now more than the afternoons (although she still gets a bit lost and panicky then too sometimes). She even cried on one occasion because everything looked black to her and she found it really frightening.
Thankfully she hasn’t mistaken me for the horrible mystery woman this week that her brain occasionally invents, although I have been very careful to hug her and be affectionate before taking her upstairs to bed at night, so she feels sure that it’s me.
Anyway, I picked up another month’s worth of melatonin from the pharmacy this week, as the mental health doctor has prescribed it to keep Mum going until her home visit next month. It’s still only at the 4mg strength, but it’s better than nothing.
Other Support
Apart from that, there are a few other little updates in terms of help for Mum.
Firstly, a different physiotherapist came round to see her on Wednesday to continue with the balance exercises, because the original one was off ill. But she was happy with how Mum was getting on, which is good.
Secondly, I exchanged a few emails with a fellow member of the Aniridia Network who has very kindly offered to talk to us since reading my blog posts about being a carer, as they can relate to a lot of what I’ve written, so we’ve arranged a call with them later this month.
Thirdly, I took Mum to the local pharmacy to have her flu and Covid vaccinations, as they’ve been great at protecting her every year, and the last thing we need is for her to end up in hospital with anything else! I had the flu jab myself as well, which I’m eligible for as her carer, so that’s good. I couldn’t get the Covid one as well though, as the rules have been tightened on who can have that, unfortunately. But at least Mum’s protected for the winter now, that was an important job to get out of the way.
And finally, Mum’s sister popped round shortly after we’d had those jabs done to see how she was doing, and to invite her out for a walk. But Mum didn’t fancy going, not least because she had nearly tripped over on the way back from the pharmacy, thanks to the tree roots that make our pavement uneven. Fortunately I caught her to stop her fall, but it understandably unnerved her a little bit, especially as we’re now so close to getting her cast off. That’s one example of where a wheelchair will come in handy – it could be used to take Mum down to the local park, to get over those bumpy hazards on the pavement, and then once she’s in the park she can get out and walk on the flatter ground. We just need to get the chair, but that’s several weeks away yet. We’re really looking forward to it though.
Sunday, October 19
Counselling Assessment
This has been another eventful week, with several more positive developments. And the most useful thing for Mum this time around has been talking to some important people on the phone.
Firstly, she had her initial telephone appointment with the RNIB counselling service. This wasn’t the start of the counselling itself, but an initial assessment with a nice, friendly lady to find out more about her, what she hopes to get from the counselling, and what type of counsellor she wants. Mum opted for a female with lived experience of sight loss, which I think is wise. So she’s now on the waiting list to have the actual counselling, which will consist of up to 8 weekly sessions. It’s already been quite a long wait, because this first assessment was due to happen in August, but was postponed because of Mum’s injury. So hopefully it won’t take too much longer.
Befriending Chat
We also had a chat with a lovely lady who contacted us through the Aniridia Network, as part of their Befriending scheme, after reading my blog posts that the charity had kindly shared in their newsletters. Having also lost all of her sight in recent years, she could easily relate to a lot of the difficulties and frustrations that Mum has been experiencing. So it really helped Mum to understand that she’s not alone in all this, there’s nothing unusual or wrong with what’s happening to her, and it’s normal to take a long time to adapt to losing her vision. It’s all very well telling her that there are lots of other blind people out there, and she did speak to another blind friend of mine who visited a couple of months ago. But this is the first time she’s ever spoken to someone with the same underlying condition who’s going through a similar experience and thus truly gets it, and it’s been a reassuring revelation for her.
The lady was also able to suggest some useful tips and tricks that she finds useful, such as separating different colours or styles of clothes using dividers in drawers, sorting items into bags made of different materials, placing tactile magnetic letters (like you get on fridges) on tins to distinguish their contents, tying ribbons or pieces of string around bottles of cleaning materials to tell them apart, and getting involved in activities with Sense like seated dance that we’d never been aware of before. So we may well try some of those things, on top of the little adaptations we’ve tried out ourselves, like using bumpons in various ways.
Mum’s mental health in general has also been fairly good this week. There are sitll moments of anxiety and panic of course, and I’ve also noticed in recent weeks that she has occasional moments of disorientation where she thinks the furniture isn’t in the right place, and accuses me of lying to her when I try to assure her that nothing’s moved. But by and large, she’s been in fairly good spirits.
She’s really looking forward to getting the cast off very soon, receiving a wheelchair in the weeks ahead, and being able to have a greater say in the care she receives. And I’ve been able to make her laugh pretty easily over the last couple of weeks, usually with my silly sense of humour, such as making up daft songs, or using her cuddly toys if I have to guide her somewhere as if they’re helping. She’s been sleeping fairly well at night too, and not dropping off much during the day or in the evening, so it does feel like her body clock’s still adjusting thanks to the melatonin.
Care Payments
I also had a call from the woman in the reablement team, who said that Mum had been approved for some direct payments for the next couple of months, to help pay towards her care. She said she would call me back with more details the next day, though she didn’t.
We then received a letter on Friday telling Mum what her contribution would be towards the direct payments, based on her income and expenses. That doesn’t really makes sense to us though, as based on what I’ve been reading recently, they don’t pay towards your care at all if the person has over £23,250 in savings, and whereas they know Mum’s income from her pensions and DLA, they don’t know what her savings are, and she’s over that threshold.
So I filled out the financial assessment form that was included with the letter, got Mum to sign it, and posted it off on Saturday morning. That way they can see we’ve been honest about the savings Mum has, as it’s the first opportunity we’ve been given to say what they are. Nobody’s asked us before now, so it was a surprise to get a letter saying she’d already been assessed. We’d rather be open to avoid any trouble further down the line, as we wouldn’t want the council discovering the savings later on and demanding we pay a lot of money back.
If the council decide they still want to pay towards Mum’s care despite that, then that’ll be great. But if we have to self-fund any care we get for her, we’re perfectly happy to do that too, as we’d been originally expecting to have to do that anyway. We’re in a fortunate position where we can afford to do so, and it’s reassuring to know that direct payments are there as a safety net if we were to ever need it. But we’ll see how they react to the form I returned anyway.
Bathroom & Balance
We’ve also had a couple of visitors for Mum this week. On Tuesday morning, a man came round to install a new grab rail by the upstairs toilet, which she’s really happy with, because it’s a long 28-inch rail that stretches diagonally from the toilet to the window sill, and she finds it much better than the frame I’d bought. That said, I also stumbled across a company that does accessible bathrooms who look interesting, and Mum really likes the idea of having the bathroom transformed, as it isn’t really fit for purpose or safe enough for her needs now. So we’ll look at getting them in for a consultation soon.
Then on Wednesday morning the physiotherapist returned and was happy to see that Mum was still doing her balance exercises correctly. And she also confirmed that she’ll be back next week, which hopefully will be the day after Mum has her cast removed. So the physio lady will be able to see what state her wrist is in, and whether it needs special exercises to strengthen it and regain movement, which it surely will after being in a cast for 10 weeks!
Incidentally, I rang up and booked the transport for Mum’s hospital appointment next week, after being on hold for half an hour. And I had a call from the hospital to say that the appointment has been moved forward by a couple of hours, which is fine by us. So that’s the big event next week, the time has finally arrived. Here’s hoping she does get the cast off and that everything’s ok, because it will be such a big relief.
Conclusion
So that’s where we’re at so far this month. Things have definitely been looking up lately, and if we can get her cast off next, that’ll be a huge leap forward. She’s just being extra careful until then, and we’re keeping our fingers very tightly crossed!
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