Welcome to the next part of my caring journal, which I know has been getting quite a bit of attention recently, and thank you to all those who are taking the time to read it.
The second half of this month has continued to have positive developments overall, with thoughts turning to long term home care for Mum, as well as ongoing help with things like her sleep and mobility. But there have still been difficult moments as well, with Mum having occasional restless nights, sometimes due to sleep-induced confusion as to who I am or where she is, along with moments of general anxiety or panic, as has become the norm in recent months.
Generally though we’re doing ok, as we can see light at the end of the tunnel in terms of Mum’s wrist cast coming off later in October, and we’re looking forward to arranging proper care for her.
So here’s what’s been going on over the last couple of weeks, which I hope you find interesting.
Contents
Sunday, September 21
I always feel a bit anxious about tempting fate when I say this, but we’ve continued to have positive developments this week.
Occupational Therapy & Physiotherapy
Firstly, now that Mum’s getting some strength back, she’s started going upstairs to use the toilet by herself during the day again, and she’s been doing a bit of cleaning in the bathroom too. She’s still using the outside toilet once or twice during the day as well, as she doesn’t want to forget the route to it, but she’s much more comfortable using the stairs now, and going up more than once a day isn’t causing her any discomfort. She’s also started helping to prepare lunches again, as buttering bread or rolls and putting ham or cheese on them doesn’t involve any heavy lifting.
Meanwhile, the occupational therapist from the frailty team has done his last few sessions of long cane training with her. It was only ever going to be temporary while Mum was on what they call the virtual ward, but he’s referring her to a community therapist going forward for further support. There’s still a long way to go, and I don’t know if she’ll ever be fully at ease with using the cane. But she did start practising with it each day before he arrived, without me giving her any push to do so, which was nice to see. And in general he has given her a nice boost of confidence when it comes to moving around, so she’s still walking around the house during the day without the cane just to stay mobile, and to come and say hello to me in my study.
He’s also ordering a new high-backed armchair for her, as the armchair she’s got isn’t supporting her properly any more. I did buy a new armchair earlier this year, which I really like and she likes too, but while she did use it for quite a while she’s gravitated back to her old chair again. So it’s nice that she’ll be getting a new one for free that might be better for her. In the meantime, we’ve also received a new cushion for her existing chair that the physiotherapist had ordered after her visit last weekend. So two therapists have realised that Mum isn’t sitting correctly, each coming up with different solutions, but I think a whole new chair will be better.
And talking of physiotherapy, Mum’s also been given an appointment for a rehab worker to visit next Wednesday to start her balance exercises, so that’s good. Plus, thanks to the referral from the physiotherapist, Mum’s also been given a podiatry appointment for early November to look at her toenails.
Wheelchair Referral
A lady we know from our local disability support service came round on Tuesday as well, so it was lovely to see her again. She was pleased to see that Mum is making good progress, and she’s willing to help Mum with long cane training outside in the future if and when she feels ready.
On our request she’s also going to make a referral to the wheelchair team, because we feel it would be useful to have a wheelchair to take Mum out if we have to walk a fairly long distance e.g. to the salon or around the park, in case she feels like she can’t walk the full distance or has issues with her balance. Getting her on and off a bus isn’t safe, and taxis cost money, so if it’s walkable it would be better to do it that way, plus it gets us some fresh air. She also recommended that we check out local charities to see if they can lend us a wheelchair in the meantime, as the waiting list could be quite long for the referral, so I might do that.
Carers
We also had a call from a woman from the reablement team to talk about Mum’s longer term care needs, because it appears that the reablement period is coming to an end soon. Although I don’t think that Mum’s technically had any reablement as I understand the term to mean. My impression was that it was about carers or support workers helping and encouraging people to get back into doing daily tasks again by themselves, like washing and showering, getting dressed and undressed, preparing meals and cooking, etc. But with Mum still in her cast, getting her to do stuff like that herself just isn’t possible yet.
So the carers have simply been washing and dressing her every day, without getting Mum to do any of it herself – which has been vital and incredibly helpful, don’t get me wrong, but it’s not reablement. To my mind, it would make more sense to have the period of care while she’s in her cast, then once she’s out of it they can go into a reablement process, to work on getting her back to doing things independently.
Still, the lady who called agrees that Mum has longer term needs and is happy to make arrangements for that, which is reassuring. I also enquired about my own carer’s assessment and she’s going to arrange for that as well. So I hope it actually happens this time. I also asked whether we have to use whatever care agency the authority decides on or if we can make our own decisions, and she said we could have a direct payment, where we’re given funding and we then make our own arrangements. So we’ve gone for that. It would mean having to provide proof of what we’re spending any funding on – and we don’t yet know how much we’ll get, if anything – but that’s fine. It would just give us a lot more flexibility. She’s going to a panel meeting about it soon anyway, so she’ll let us know after that. Fingers crossed we’ll be able to move forward and get Mum much more personalised care soon.
Sleep & Melatonin
As for nighttime, the increased 4mg dose of melatonin has been helping Mum to sleep a bit more. Not the whole night, because she still sometimes hears me going to bed a few hours after her, and she’s told me that she stays awake for a little while, or goes in and out of sleep during the night. But she’s getting at least a couple of hours I reckon.
And she even overslept today (Sunday), much to my happy surprise! She’s been dutifully standing outside my bedroom door ready for me to take her downstairs in the mornings, but on this occasion she wasn’t, and I could hear her breathing steadily in her bedroom, so I just left her to it. And when she did stir half an hour later, I let her get up on her own and find her way to the toilet without getting involved. And the carer came while she was doing that, so she was able to get things ready to wash Mum while she made her way downstairs.
So that seems very promising. There are still instances during the daytime or evening where she dozes off and wakes up a bit confused or panicky, but she’s not having as many deep sleeps or sleeping for as long in the lounge as she used to. There are also still occasions where she thinks there are more than one version of me, plus she’s still a bit clingy sometimes. So the extra sleep is by no means fixing everything, but it’s certainly a step in the right direction.
Sunday, September 28
Now that the occupational therapist has stopped calling, I thought this week might be a bit less eventful. But it’s had its share of up and down moments
Sleep
The melatonin is still helping Mum to sleep a bit more at night, which is good, although she still isn’t sleeping for long enough, only a couple of hours or so. And she is now getting tired and dropping off to sleep in the lounge later in the evening rather than the afternoon – although it’s not clear if that’s purely down to the melatonin adjusting her body clock, or if it’s partly because she’s keeping herself awake by walking around the house during the day to stay mobile and stave off boredom. After all, being in the wrist cast for so long has become very frustrating for her, and she’s still got a few more weeks to go. So she keeps coming into my study to say hello and have little hugs.
She’s not in as much pain now though, which is good. She used to have painkillers in the morning, at lunchtime and when going to bed, but she doesn’t need them very often now, only having them once or twice a day, and even then it’s more of a pre-emptive measure just in case.
Confusion
However, Mum hasn’t always been sleeping better, and she still gets confused sometimes when waking up downstairs.
In particular, on a couple of evenings this week she woke up from a sleep in the lounge and asked to go to bed, and seemed quite awake and focused, conversing with me normally. But it soon became apparent that her mind hadn’t fully come back to reality, as she didn’t know where she was, and didn’t remember the layout of the bathroom or the house in general, not even believing me when I told her she was at home as usual.
She didn’t realise who I was either, and instead mistook me for the horrible mystery woman her brain interprets me to be now and again. I guess I might have used a softer tone initially when she woke up, which is a hard habit to break, or I was just saying the wrong things in general. In any case, it doesn’t matter how gentle and reassuring I then try to be with Mum in that situation – once her brain has told her that I’m that woman, everything I do or say is wrong, as Mum doesn’t trust her, and assumes she’s bossing her around or having a go at her, and I can’t prove that it’s me. It makes me feel so helpless.
Mum then got frustrated with me (i.e. the woman she thought I was) as I put her to bed on those nights, even telling me to clear off and leave her alone on one occasion. I did my best to stay with her and comfort her, but she was having none of it, so I had to just respect her wishes and leave her alone, as at least I knew she was safe in bed and I could hear her if she had an emergency. But she then started loudly complaining, saying that I didn’t care if she lived or died – which I can only assume is her calling out for her real son (i.e. the real me), because I’d supposedly left her with the horrible woman. But I couldn’t go back in because she thought I was the woman, so I couldn’t win! She did quieten down after a few minutes though.
In both cases, as she hadn’t had much sleep because of all that, she then told me off during breakfast the next morning, for allowing the woman to be so horrible to her rather than stopping her. It seems impossible to persuade her that the woman doesn’t exist. And when I tried to ask her about what I could do better to make her feel more at ease and realise that it’s me taking her to bed, she got frustrated at the fact that I didn’t automatically know. But we did eventually agree after the second occasion that I would give her a hug in the lounge just before I take her upstairs to bed, as the woman doesn’t do that – although I can’t help fearing that if I start hugging her in those cases, she’ll think it’s the woman hugging her anyway. But we’ll try that over the coming week and see if it makes a difference.
Anyway, in each case, once we’d had breakfast and a bit of a chat and she’d calmed down, we did get on well together for the rest of the day as normal, even though we still felt a bit rough and upset about what had happened. That’s the one comfort I remind myself of when Mum gets into that sleep-induced state of mind at night, that we always make amends eventually and get on well again, because she does love and trust me and wants me with her. And it’s only dozing off in the lounge that causes these problems, because when she’s had a sleep triggered by the melatonin pills in bed at night, she wakes up quite calmly. I’ll be telling the mental health doctor about all this when she rings next week for an update anyway.
Care Arrangements
Apart from those nighttime issues though, and other general incidents of anxiety and panic Mum’s been having as usual, there have been much more helpful developments during the week.
On Tuesday morning I attended the latest monthly workshop by our local carers community group, as I want to start going to those regularly if I can. It is possible to go in person to these meetings, but as I have to take time away from work as it is, and thus risk falling behind a bit, it’s easier to take part online, as some others were also doing. So I watched a presentation about effective skills and resources for making complaints, which was interesting. Hopefully I’ll never have to make use of the advice within it, but it may prove useful in the future, you never know. And they did send me a copy of the slides, so I have them for reference.
Then that evening, the lady from the reablement team sent me an email with a link to extensive information about Direct Payments – at 7:30pm, so she was working quite late! Direct Payments are where the council gives you the funding so you have full control and flexibility to arrange your own care, rather than the council doing it for you. So you can employ your own personal assistant or use any care agency of your choice, and decide who does what and when, provided the care you need has been agreed in the support plan that you put together with the council’s social care team. They also give you a pre-paid debit card on to which they load the money for you to make payments with, and they monitor what you’re spending that money on, to ensure you only spend it on your care needs, which is fair enough.
All that said, it looks like there’s also a financial assessment involved, taking into account some of your income, savings and expenses, to see if you’re eligible for funding. And the savings we have will push us well over that threshold. So we’ll probably just have to fund Mum’s care privately ourselves. But that’s fine. We’re in a position where we can afford to do that, and that would give us absolute control over Mum’s care anyway.
Nevertheless, it will still be useful to get a care needs assessment for Mum and a carer’s assessment for me from the council – which I’ve been trying to get for a while anyway, and they have a duty to provide them as we asked for them – to see if there are any ways the council can still help us, and it might help our entitlement for other things. So I wrote back to the lady confirming we’d like to go down the Direct Payments route, and she replied to say she’ll put the wheels in motion. We’ll see what happens.
Over the weekend I then started looking up local care agencies, using the Care Quality Commission website that inspects them, and the Home Care website that has user reviews and other information about them, and then checking out the actual websites for any agencies that I felt were worth looking into further. Having never researched this kind of thing before, Mum and I are quite amazed at how many there are. It’s easy to dismiss a lot of them, but there are quite a few potential options as well. So I just need to take my time looking through them all.
Physio & Other Support
Anyway, back to the weekdays, and on Wednesday morning a physiotherapist lady came and showed Mum some balance exercises. Nothing difficult, just a few things to do while holding on to the dining table for support, like marching on the spot and lifting her legs in different directions. So the lady’s given me a sheet with details of those exercises, and Mum’s been having a go at doing them each day. The lady will then be back next week, and I think there will be three sessions altogether.
Meanwhile on Thursday, the lady from our local disability support service sent me the wheelchair referral form, following the discussion we’d had on her recent visit. So I’ve filled that out and returned it to her. It is tiring for Mum to walk too far these days, plus she’s lost a lot of confidence due to her blindness and all the falls she’s had, so she’s become very nervous about going long distances on foot or using transport like buses. So using a wheelchair should help her to feel much safer, hopefully.
I also discovered on Thursday that the Aniridia Network had very kindly shared my blog posts about being a carer at the top of their email newsletter, which was a nice surprise (and hello to anyone reading this who has arrived from there!). And in response to that, I’ve received a message from one of my fellow members of the charity, who can relate to our experience to some degree and is offering to have a chat. So that’s very kind of them, and I’ll try to arrange that.
Conclusion
So that’s the latest update, with quite a bit going on as always. It’s still difficult at times, but we’re staying optimistic about the future. Mum hadn’t realised it was possible to get so much help – a lot of what we’ve already received has surprised her, especially when you hear about how stretched services are in local authorities and the NHS, and she never knew about care agencies and what they offered before. She always assumed and feared that when she needed more help she’d just end up in a care home.
And my own knowledge was extremely limited, as we’ve never felt the need to look into this kind of thing before, so a lot of it has been an eye-opener for me too. It’s funny really – I used to print social services bills as part of my old job, so I remember seeing terms like “domiciliary care” and “direct payments”, but I never really understood what they meant at the time, as I had no reason to know. And, like Mum, I was never aware of the scope of services that care agencies can provide, or how wide a choice of agencies there are.
So if we can find some really nice carers who are friendly and kind and easy for her to communicate with, and can help her with a variety of tasks, it could potentially make a big difference to both of us. Getting Mum out of her cast will also be a big weight off, in every sense. We just need to be patient while waiting for all these things to happen.
In the meantime, there are a few things coming up in October that will hopefully keep things moving forward in a positive direction. So stay tuned and I’ll continue to keep you posted in the weeks ahead.
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Well Eye Never 
It’s good that you are getting help. I know that being a caregiver can be hard.
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Thank you Amanda. 🙂
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