I’m an unpaid carer for my mother and lately we’ve been struggling to cope. We need help.
It sounds like I’m introducing myself at some kind of group therapy session. But then this series of posts is a form of therapy for me really, to open up about what’s been going on lately.
After all, being a carer does make you feel anonymous, as you’re leading a secret life behind closed doors, even from your own relatives and friends to some extent. And I haven’t felt the need to write about it here before, because my mother and I have had a healthy balance to our lives with no major issues.
But developments over the last few months have proven too overwhelming for us to deal with by ourselves, because Mum hasn’t adapted well to going blind for various reasons, plus she’s having falls quite regularly. So I’m having to do a lot more for her, and it upsets me to see her struggling so often. It’s been a shock to the system for both of us, because it’s a new, confusing, emotional and somewhat frightening journey that we’re being forced to embark on. We are now starting to reach out for support, which has given us reason to be hopeful. But there’s a lot of waiting involved.
So bear with me while I ramble my way through what’s been going on to bring you into the loop, because there is quite a lot. I’ve split this up into three posts that I’ll be posting over consecutive days, to focus on Mum’s physical and mental health issues in turn, followed by the impact on me as her carer and the support I’m trying to access. Then I’ll share regular updates as to how we’re getting on, alongside the other types of post I usually do.
Mum knows I’m putting this stuff online, as it’s nothing for us to be ashamed about, it’s good to raise awareness, and it might help us to find extra support. Indeed, I’m very open to any help or advice that people are able to offer as a result of reading all of this stuff, so feel free to comment here or contact me by email or social media if you wish.
But even if you can’t help or relate to what’s going on, I hope you find this interesting. If I can use this situation and my platform to help raise awareness of what it’s like being a carer, then that alone makes this worthwhile.
Contents
Mum’s Sight Loss
Her Journey
My mother was born visually impaired in the 1940s, and it was from her that I inherited my conditions aniridia and nystagmus. Back in her youth there wasn’t any proper support available, and her family didn’t fully understand the impact it was having on her or how to help her most effectively, although they did the best they could of course. So it was difficult for her growing up, and that naturally affected her confidence, her trust in others to help her, and her general mindset, not just at the time but during the rest of her life since.
She did get a good job as an adult though, and she did eventually go to a rehabilitation centre for the visually impaired – the RNIB’s Manor House in Torquay – where she met the man who then became her husband and my father, which I have written about before. She continued to have regular eye appointments after that as well. And as I grew up I started to help her and Dad with things more and more. So I’ve basically been a carer for both of my parents ever since my teenage years really, and since Dad died 14 years ago I’ve continued to look after Mum.
By the turn of the millennium, however, cutbacks in our local health service in Devon meant that it became increasingly difficult for Mum to get eye appointments, and the waits became so ridiculously long – up to about a year – that eventually she just gave up and dropped out of the system. And I don’t blame her really. They didn’t seem to be that bothered about seeing her, even though it was clear that her vision was gradually deteriorating.
So her last eye appointment in Devon was in 2004 we think, and because she’d lost faith in doctors being able to do anything about her sight, she never saw anyone else about it over the next couple of decades. She saw doctors about her general health, and any little injuries or illnesses as necessary, as GP appointments were easier to get, but not about her eyes specifically. I think she’d just resigned herself to the fact that it could never be fixed, sadly.
She therefore never had any professional medical or mental health support as her sight continued to get worse, which has undoubtedly exacerbated her current situation.
Becoming Blind
So that brings us to the present day. At some point last year she lost her remaining light perception, rendering her totally blind, and it’s gradually been having more and more of an impact on her, particularly mentally.
In particular, it seems like her brain has been trying to adapt and compensate for it, but it’s been making a mess of it, including in ways that we hadn’t anticipated, such as the visions she’s had and the confusion they’ve caused, which I’ll be talking about in my next post.
That, combined with having falls and the general effects of old age, has significantly affected her already shaky confidence and anxiety, as you can imagine. And in turn that’s had an impact on me, as I’ve had to become a lot more attentive to her practical and emotional needs.
She is now registered with Moorfields again as well, incidentally, as she finally went earlier this year. It’s too late for them to save her sight, as she knew would be the case, but it was still good for her to be back on the system, as even when you’re blind you can still have problems that make your eyes uncomfortable. I need to get myself registered with them as well, as I haven’t been looked at for a long time either for the same reasons as Mum, but with everything else going on I just haven’t made it a priority.
Physical Impacts
Falls & Telecare
Mum was already having occasional falls last year, but this year she’s had several in fairly quick succession – at least nine in the space of five months by my reckoning, all but one of which have been at home (the other was when we were getting off a bus). A few were due to trip hazards that she couldn’t see, which we’ve dealt with, but the majority have just been due to her losing her balance e.g. while turning around to go in a different direction.
Unfortunately, and unsurprisingly, the first few falls really knocked her confidence and made her a lot more anxious. One of them in particular made it difficult for her to get out of bed for a few nights, which didn’t help matters. And then having further tumbles since then has only added fuel to the fire each time, as have all the other issues I’m going to mention. So it’s all been adding up.
Because her falls were worrying me as well, I contacted social services about it and we were able to get telecare installed, which only costs just over £5 per week.
It means that she has a pendant alarm to wear around her neck, which she can press manually if she needs help, or it will trigger the alarm automatically if it detects that she’s had a fall and isn’t moving. Either way, it will initiate a call via the telecare unit on the windowsill in the living room and someone will respond to check if she’s alright. The unit also has a big button on it that she can press if necessary. And it uses mobile networks, not the landline, so if the landline goes down it can still contact the call centre.
If she therefore needs assistance and I’m not there, the telecare people can take the necessary action. They will call me of course, but they can also contact emergency services if need be, who can enter the house without breaking the door down, because we have a key safe hidden away, which the telecare provider will give them the location and code for. Mum also has to test the pendant once a month so they can verify it’s still working correctly. And she has set it off by accident a few times, but they don’t mind that, as it’s probably quite common.
So in theory that does give me peace of mind if I go out, knowing that she would get help if she fell. However, because she also sometimes has panic attacks, or acts in confused ways when she wakes up in the lounge, or gets distressed when I’m not around, as I’ll be explaining in my next post, I’ve become frightened to leave her on her own too much anyway.
Collarbone Fracture
For most of her falls, she’s been able to take a bit of time to recover at home, even if we’ve had to call 111 a couple of times for advice to be sure. But when she fell in early July she fractured her collarbone, so we had to spend a day in hospital while they took a look at it.
Fortunately she doesn’t require any surgery, and after a follow-up appointment they’re happy that it’s gradually healing itself, so she doesn’t need to go back to hospital any more unless it gets worse again. But she has been referred to their frailty team, so they’re currently coming around to the house once or twice a week to see how she’s doing.
It takes about 6 weeks on average for a fractured collarbone to heal, we’re told, and allowing for Mum’s age it will probably be a bit longer than that, so we’re probably looking at the end of August at this rate. It is a long and frustrating wait for her, during which she’s been unable to do tasks like cooking and cleaning, so she is rather fed up with it all, bless her. But there are signs that it’s gradually healing, and lately she’s started to do a little bit more than she could a few weeks ago, so that’s good.
It doesn’t help, therefore, that she had another little fall yesterday morning (August 2) – which made good use of the telecare system, as she had to use her pendant to get them to call me, as I was fast asleep in bed! She could have called out to her Alexa machine to call mine upstairs as well, but didn’t think of it in the moment. She was also feeling around randomly to grab on to anything to help her stand up, so when I came downstairs I found she’d moved her armchair, pushed the TV off its stand (it survived albeit with a crack to its leg), and tipped over the serving trolley, all of which made the room even more hazardous. In any case though, it seems to have been a minor fall this time, as apart from a few little aches and pains plus a bruise on her leg, it hasn’t made her collarbone fracture worse as far as we can tell, which is a relief.
Navigation
One of the things that the frailty team have been doing when visiting Mum at the moment is to give her a bit of introductory long cane training for indoor navigation, as she’s never used one before (whenever she’s been out it’s always been with me guiding her). She’s not really in the best mindset for it at the moment given her collarbone injury and overall anxiety, and hasn’t got in the habit of practising with it much between visits. And given the regularity of her falls, we’re wondering if she might be better with a walking frame than a cane.
But she is making baby steps in terms of progress with the cane, more than she believes she is, and they are referring her to our local social care service for proper training, so hopefully they can spend some time working with her more extensively. I can’t really help her much, other than keeping an eye on her and getting her to come towards my voice, as I don’t have any long cane experience myself
It would be useful if she could get the hang of it though, because she does struggle with getting around a bit. Sometimes she’s alright and can find her way around the house pretty easily, and even if she’s a bit disorientated a simple prompt from me can put her back on track again. But there are many occasions, especially if she’s woken from sleep in the lounge or is just a bit tired or anxious, where she gets herself lost and either calmly asks me to guide her or gets into a panic.
The lounge in particular, even though she’s used it every day for the 8 years we’ve lived here, still confuses her sometimes, because it is a fairly big space. Everything’s deliberately arranged so she can feel her way around it from one area to the next, but she still struggles to get the hang of it when she’s not quite fully alert, and sometimes goes off course if she tries to walk freely across the empty space in the middle of the room without touching anything. There are probably ways we could rearrange the furniture to make it easier, but I don’t know what might be best, and I don’t want to confuse her even more by changing everything right now.
Sleep Disruption
Body Clock
Like many old people, it had become pretty common for Mum to have naps during the day – particularly in the afternoon and evening – in one of the armchairs in the lounge, so there had been nothing to worry about there. She had always stayed in her bedroom all night as well, so everything was normal.
But now she doesn’t have light perception, her body clock has been completely thrown out, which I know is very common and severely affects many blind people.
So when she gets tired and nods off in the lounge now – again most commonly in the afternoon and evening – she sometimes sleeps very deeply, to the point that it can be almost impossible to wake her up. This was something that I noticed happening more and more last year. And when she goes to bed she tends to stay awake most or all of the night, though I wasn’t aware of that for a while until she told me. So if I see her sleeping during the day, I just leave her to it and don’t wake her up.
As well as her body clock being out, she’s also been unable to do very much whilst recovering from her various falls, especially since her recent collarbone fracture. So she’s been sitting around more than she would like, which has inevitably caused her to nod off anyway. But even when she was a bit more mobile and doing jobs around the house, she was already starting to have much deeper sleeps during the day and little to no sleep overnight.
We did call a doctor at our local surgery about it, and I said to him that several blind people I know use melatonin to help them sleep. But given Mum’s age and frailty he didn’t want to give her anything too strong at first. So he tried prescribing her Promethazine, a type of antihistamine that makes you drowsy. It relaxed her slightly, and if she was really, really tired already then it just about helped to tip her over the edge into sleep. But for the most part it didn’t help her sleep any more at night.
We were going to keep going back to that doctor to see what he suggested next, and we still might, as even if pills just help her to relax a bit more at night that’s still useful, even if she doesn’t actually sleep. However, now that we’ve been able to get her referred for proper mental health support, as I’ll explain in my next post, we’re inclined to wait and see if that can help better with this side of things, in terms of medication and/or other methods. I still think melatonin would be worth a go, but while I could technically go online and buy it, I don’t want to do anything without a doctor’s approval.
I have also tried to make her as comfortable as possible in her bedroom, including giving her a teddy bear that she likes holding on to, putting on a nice big fan when it’s warm, and she does listen to classic comedies she likes on her audiobook player (usually the audio adaptations of The Good Life), as being so familiar with them it doesn’t matter if she falls asleep during them. We try to make sure she goes to bed at roughly the same time every night to keep to a routine as well. And I’ve even started giving her a kiss on the cheek to say goodnight once she’s all tucked in, as we’ve found she likes that too. But she’s still not sleeping much or at all overnight, ultimately. I think she gets a little bit now and again, but it’s only very little.
Restlessness
As well as having a disrupted sleep cycle, her general anxiety also means that she sometimes gets restless after she goes to bed at night, or in the early mornings when she’s in the lounge before I get up, which has naturally affected my own sleep sometimes.
For example, there have been some nights where she’s called downstairs for me several times (as I go to bed later than her), either for help with something or just for reassurance that I can hear her. And there have also been a few mornings recently where she’s come into my bedroom and woken me up in the early hours, or disrupted a lie-in i’ve been having, pleading with me to get up and be with her, because she’s got herself in a bit of a state.
Those things don’t happen all the time, so most nights I am able to sleep, so far at least. But there have been a sufficient number of occurrences in recent months for it to be notable, as she never used to be like that, and I do find that I feel tired some days even if I thought I’ve slept well. And I don’t always react in the best way either, as I get a bit irritable or frustrated if she keeps calling out for me too often at night when I’m tired or if I’m jolted out of sleep in the morning. I don’t shout at her or anything like that, and I do my best to try and be calm, as I know it’s necessary to help her and I don’t blame her for being restless. But it is very hard sometimes. We’ve each had a few moments where we’ve got a bit ratty and then apologised afterwards, though not so much recently.
She also went through a phase where she didn’t want to stay in bed much at all, and started to come downstairs to watch TV during the night. I think this was after a fall where it was difficult for her to get out of bed for a few nights, so she became afraid to stay there, but it quickly became a habit even after she felt better. It was a bit frustrating for me, because the late evening after she goes to bed is the only time of day I really get to myself now. And I like to wind down at the end of the night by sitting in the armchair and watching TV, which helps me to relax so that I get a good night’s sleep, which in turn helps me to function better the next day.
I have managed to wean her off that particular habit though, which is good, as she and I both want to try and keep her in a regular routine of going to bed at the same time, even if she’s not sleeping there much, because it still helps to rest her body after sitting down a lot during the day. She still comes downstairs briefly and pops her head into the lounge most nights though, either to check I’m in there for reassurance, or just because she doesn’t realise what the time is as she forgets to press the talking clock by her bed, but she goes straight back to bed then.
Conclusion
I’ve touched upon things like anxiety and confusion there, and they’re all part of the mental health issues that Mum has been experiencing as a result of her blindness and falls. So I’m going to talk more about that side of things in my next post. But I hope you’ve found this first part interesting.
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Well Eye Never 
I’m sorry you and your mum is going through this.
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Thank you Amanda. 🙂
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