Caring For Mum – Part 2 – Mental Health

Yesterday I started to open up about how things have become more difficult for my elderly mother, and by extension for myself as her carer, since she went blind last year. That first post was about her physical health and sleep, including the fact that she’s having falls regularly.

So now I want to talk about the changes to her mental health, which I’m finding the most upsetting thing to witness, because it’s distressing for her and I feel powerless to fix it. We have reached out for support, as I’ll explain during this post, but until any help arrives I just have to be as patient and supportive as I can for her.

She naturally has quite a lot of anxiety and some panic attacks as a result of her blindness and recent accidents, which is difficult enough for her to deal with, and consequently she’s become very emotionally dependent on me. But her brain has also been messing with her by making her think there are multiple versions of me in the house, or getting her confused in other ways, which we hadn’t anticipated.

There are plenty of times when she’s relaxed and clear-headed as well, fortunately, but every day there are at least one or two instances where she’s not thinking straight, usually due to tiredness or stress in some way.

So I’m going to explain things as best I can here. As I said last time, I’m very open to any help or advice if you want to offer it in a comment or contact me in other ways. But in general I hope these posts help to raise some awareness of what it can be like as carer, and how unique our particular situation is.

Contents

Confusion & Panic Attacks

When Mum’s fully awake and alert, she’s pretty switched on. Her memory’s always good and she doesn’t get confused very much. So I don’t think she’s got dementia, judging by the signs of dementia vs general old age. Instead, Mum’s issues appear to be from her difficulty adjusting to blindness, her unconventional sleep cycle, and her states of anxiety and panic. If we could get those things sorted out, her moments of confusion should be greatly reduced.

In particular, because her body clock is all over the place, and there’s not a lot she can do while recovering from her falls, she regularly sleeps in her armchair in the lounge for periods of time during the day. And when she wakes up there, she often gets confused or anxious, and occasionally has a panic attack, as she’s not sure where she is, what’s going on, what time it is, who’s around, etc, because she can’t see. And that’s not helped by her brain generating random colours, lights and visions as I’ll discuss in the next section.

While this doesn’t happen every single time, it does occur at least once every day or two to varying degrees. And if she’s woken from a particularly deep sleep, it can often take her quite some time to transition from being asleep to fully awake, leaving her in a bit of a daze for several minutes. In the most extreme and thankfully rarest instances, if she’s been jolted awake before she’s ready (e.g. by a loud noise like the doorbell), she can be in a confused state for up to half an hour or so.

One thing that can make it worse is when she falls asleep listening to the radio or TV, because sometimes she wakes up and gets confused by the noise. In particular, she likes listening to football, so if she wakes up hearing the commentary, all the crowd noise can be quite overwhelming for her. On a few occasions it’s even made her think she’s there and she’s asked to go home. So now, if she’s listening to something and it looks like she’s asleep, I turn it off so that she can wake up in peace. It doesn’t guarantee that she won’t panic or get confused, but it has helped a bit.

Another example is where we have a fan on pointing at her – which has been most days lately thanks to the warm weather – because sometimes the breeze makes her think she’s outside when she wakes up, and she asks to go indoors. Again, not always, but it’s happened a fair number of times now. So again, if I see she’s gone to sleep, I’ll turn the fan off or direct it away from her.

But even if it’s quiet and still in the lounge, she still sometimes panics or gets anxious when she wakes up there, or if she just feels lonely and needs comfort and reassurance.

I don’t think the problem is quite so bad if she wakes up in bed, partly because she gets very little sleep there in the first place. But I do stay up later than her, and recently she’s been coming downstairs at some point most nights with no idea what time it is, and when I tell her the time she goes back to bed again. So I think she must be nodding off a bit, then waking up and forgetting to use the talking clock or ask the Alexa machine by her bed, instead coming downstairs to see if anyone’s about. Yet when she’s lying in bed fully awake, I do hear her pressing her talking clock quite regularly.

It’s not just sleep that addles her brain either. Just feeling tired, anxious or panicky tends to have a similar effect by stopping her from thinking clearly. And I’ve also noticed that it’s harder for her to concentrate properly if she’s feeling particularly cold or hot, which has been most pronounced in the depths of winter or during the recent heatwaves, but she can also get confused after a relatively small temperature change of just a few degrees.

Unpredictable Behaviours

Those moments of confusion or panic have therefore led to her being unpredictable, because every time she nods off I don’t know when she’s going to wake up or what state of mind she’ll be in. It’s very upsetting when she has panic attacks, for instance, although most of them I’ve been able to nip in the bud by calming her down relatively quickly. But some have been quite bad and it’s taken much longer to relax her. Or even if I do get her to calm down, she’ll still make anxious noises for a little while sometimes.

But it’s not just anxiety and panic that she experiences. She also occasionally behaves in other unexpected ways when she wakes up in the lounge in a confused state, for example:

  • Walking around the room randomly, without wanting to go anywhere in particular. If I notice her doing this I keep an eye on her, and only intervene if she’s at risk, as it’s hard to tell if she’s sleepwalking or is half awake. On a couple of occasions she’s even walked out of the lounge and into my study next door, and got into a panic because she rarely goes in there and is thus unfamiliar with the layout.
  • Pulling armchairs across the room, thinking they’re in the wrong place. She’s done this on a few sporadic occasions now, and I do step in and move them back if this happens, because obviously it’s creating a hazard.
  • Pushing or lifting items off tables without realising she’s doing it or why, such as her big Victor Reader audiobook player with non-slip feet that she dropped on the floor once, or the Alexa machine that she had picked up when talking to it and then dropped. Both survived the impacts I’m happy to say. Again, she’s only done this a few times, but I obviously need to be careful that she doesn’t drop anything she could trip over or cause damage to.
  • I once found her picking up the phone in the evening and pressing random buttons, so I stopped her and put the receiver down. She couldn’t really explain what she was doing at the time, but when I spoke to her the next day, she said she had been trying to call the police because she thought she was in the wrong house. Fortunately she didn’t have a clue what buttons she was pressing!
  • On one afternoon recently she asked me what her name was, which she’s never done before. But her mind was all over the place anyway because she’d had a panic attack earlier in the day, which she hadn’t fully rested and recovered from. So once I reminded her, she was then able to recall my name, our address, her sister’s name, etc. Similarly, the next day she’d had another big panic attack in the morning, and in the afternoon she asked what country we lived in. But she hasn’t asked any of those questions again since. So her panics really do mess with her head for a while – as well as exacerbating the pain from her collarbone injury at the moment – as a result of which I’ve discovered online that there’s such a thing as a panic attack hangover, which I’d never known before.

Visions & Versions Of Me

This is a particular type of confusion for Mum that seems most bizarre and scary to us, because – if you’ll pardon the expression – we never saw it coming. So if anybody is experiencing the same kind of thing or can relate to it, we would love to hear from you.

Since losing her light perception last year, Mum’s brain has been generating random lights and colours in her eyes, which have been unnerving enough for her as it is, sometimes causing her to panic as noted above. So she needs help to come to terms with that as it is. But we can understand that happening, it makes sense.

However, at some point last year her brain also started generating visions of me when I was talking to her – not every single time, but quite often. I assume that it was drawing on memories from when she could see, in order to compensate for the lack of sight, because it recognised my voice.

Those visions felt very real to Mum though, because she was seeing them at the same time as she was hearing what I was actually saying. So to be clear, she’s never heard fake voices – it’s always real conversations with me that have generated the visions.

To complicate things further, her brain seemed to have 2 visions of me in its memory, so it would choose one or the other each time. So that convinced her brain that there were 2 versions of me – the normal me and a younger version.

I only became aware that this was happening when Mum occasionally started referring to me in the third person – i.e. “Glen said this” or “the other Glen said that” – and I then asked her about it. She didn’t explain it at first, because she was scared she was going mad, but she did tell me in the end.

From what I was then able to establish, or at least make an educated guess about, I think it was happening during the period between her being asleep and fully awake, so maybe her mind was more susceptible to creating imagery like in dreams in those moments. But they got locked in her memory from there.

She’s told me that she doesn’t seem to be having visions quite so much these days, which is good, although she still has them occasionally. But the concept of two Glens has very much stuck with her, depending on how she hears my voice – and there’s now a third person in the mix as well.

So when Mum’s tired, half-asleep or in a generally confused state when I talk to her, her brain will decide that she’s hearing either:

  • The normal me – Most of the time she does realise this.
  • The younger me – As far as I can tell, this seems to happen if I’m quite relaxed and cheerful, even singing to myself or making silly noises that I know amuse her. But even when I talk in my normal, neutral tone she still mistakes it for a younger me sometimes.
  • A woman – This appears to have come from me adopting a calming, soothing tone when Mum’s been particularly anxious, to try and help her relax, and I had no idea it was being interpreted this way for a while. Mum’s occasionally had visions of her too, but dressed like me in the other visions. So I’ve stopped doing that kind of voice, but she still thinks my normal tone is the woman sometimes now. And Mum doesn’t like her, because she doesn’t know who she is and thinks she’s bossy. So occasionally if I’ve been talking to her she’s tried to push me away and called out for Glen. And when I try to reassure her that the woman doesn’t exist, in her confused state she doesn’t believe me. When she’s fully awake and alert, Mum looks back on it and knows the woman isn’t real, but she gets anxious in case she hears her again.

So all of this is doing Mum’s head in sometimes, as it would for anyone I’m sure. I cannot imagine how distressing it must be for her. She does know there’s only one of me, and she knows it’s impossible for there to be a younger version of me or some random woman in the house, yet her brain is insisting otherwise. So I’ve got into the habit of checking to make sure she knows who I am, especially if she wakes up from sleeping in the lounge.

I’ve also set up routines on her Alexa machines that I can trigger via the app on my phone, which remind her that there’s only one of me in the house, and there’s no young version of me and no woman. So if she wakes up from sleep, for instance, I’ll get it to play a message to that effect before I start speaking, so she knows the voice she’s about to hear is mine. She’s been liking that, because the Alexa voice is completely different to mine and she trusts it, given that she uses it for other things. But there was one instance very recently, when she was tired and not thinking clearly, where she said the woman was triggering the Alexa voice and not me. So there’s no guarantee she’s going to keep trusting those messages.

But ultimately, being confused by these different iterations of me has been getting to her so much that recently she announced she’d had enough, and pleaded with me to get her help. So we have now arranged that, as I’ll explain later in this post.

In the meantime, while we wait for that support, I am getting the impression that she’s starting to accept that these different versions of me are actually just different sides to my personality or demeanour, and she is trying to fight a bit against what her brain is telling her. But it’s a real struggle to change what’s become so firmly embedded in her mind, so she really needs to talk to someone about it, and the sooner the better, as it’s an issue that’s only getting worse.

It’s such a strange phenomenon in any case. I am aware of Charles Bonnet Syndrome (CBS), where blind people have hallucinations, so perhaps it could be a form of that. But when I enquired about this particular issue through Esme’s Umbrella – the charity supporting people with CBS – it wasn’t a variation of the condition that they had encountered before. So it could be related to CBS, but we can’t be entirely sure.

This was the reply I got from their medical advisor, Professor Dominic Ffytche, described by the charity as “the world authority on visual hallucinations of all types”, and I have no reason to doubt those credentials. It doesn’t really make things any clearer for us though, as even he’s a bit mystified by it!

“What is being described is a real voice triggering a hallucination of the person speaking (note this is not the same as CBS visions talking). This is not something I have come across before. It is consistent with CBS triggered by sound but the awaking from sleep and drowsiness may also be important factors here. It is normal for sounds to interact with dreams while waking so a version of this may be what is happening. We don’t fully understand the relationship between CBS hallucinations and waking from sleep but know it is relatively common in our large scale studies.”

Emotions & Loneliness

This whole situation has certainly brought Mum and I closer together, which is a positive thing to come out of it all. We talk a lot more about how we’re feeling, and I’ve been getting more tactile with her (giving her hugs, stroking her hair and back, letting her touch me, etc), especially to reassure her that I’m real given the confusion her visions have caused.

But because she sometimes has high levels of anxiety as a result of everything I’ve talked about above, and as I’ve perhaps been a bit too attentive sometimes when I’ve been worrying about her, she’s naturally become very emotionally dependent on me, or clingy to put it another way. Not every single day, but most days to some degree.

Bear in mind I’m also the only social contact she has, and has had for a long time, apart from her sister who pops in occasionally to see how she’s doing. So she does get lonely when I’m not around. She used to be able to cope with that well enough whenever I went out, as she could do stuff around the house to pass the time and feel useful. But given her anxiety levels now, and the fact that there’s not much she can do to occupy or distract herself while recovering from her injuries, it’s become a much bigger issue for her these days, understandably.

So when I’m at work in the study next door to the lounge, for instance, she’ll sometimes call out to me during the day to check I’m still around, even though we’ll have discussed earlier that I’ll be working all day there and I’m not going anywhere. Sometimes she calls out to me at night as well to check I can hear her, or pops downstairs to check I’m still there if I’ve not gone to bed yet, though thankfully not as often as she used to.

And naturally she then gets very anxious and even panicky if I go out of the house and leave her on her own for too long. And I worry about her being on her own too given the changes in her behaviour, so there is probably a bit of emotional dependency in the other direction as well, as I need to know she’s ok.

Therapy & Support

Mum has been reluctant and afraid to get mental health support for quite a while, in case they decide she’s going mad and put her away somewhere, or diagnose her with some horrible condition, or just can’t help her. And I couldn’t just do a referral behind her back and without her consent. I would only do that if she was posing serious danger to herself or me, or had lost her mental capacity to think about it.

So all I’ve been able to do is suggest and encourage things, and over time she’s allowed or asked me to put the wheels in motion, which has been a relief. We’ve therefore arranged the following for her:

  • Psychogeriatrics – After the confusing visions had got too much for her, we got in touch with our GP surgery and were able to speak to a lovely lady doctor the very next day (July 22), who understood what we were saying about Mum’s various mental health issues. She then made a referral to the old age psychiatry service, which is a specialised area of psychiatry that we didn’t even know existed until then. That went through on July 22, and I’ve no idea how long we’re going to have to wait, but I know NHS waiting times in general are quite lengthy. I do at least know that the Patient Record Team at the relevant NHS Trust have hooked into her medical record, which is good, so they’ve got her on their system at least.
  • RNIB Counselling – We’ve been able to get her a telephone appointment with a counsellor during August, so it’ll be interesting to see if that proves useful. As I said in my previous post, she never had any mental health support as her sight deteriorated over the last couple of decades, so I don’t know if this will be too little too late, as we really don’t know what to expect. But I’m hoping it will help at least a bit before she has the psychogeriatric therapy, which could be several weeks or even months away for all we know.
  • Sightline – My wonderfully supportive friend Claire suggested this to us. Sightline offer a befriending service to visually impaired people, where a volunteer calls up at the same time every week for a friendly chat about whatever you want. So I referred Mum to it, and within a few weeks she’d been matched up with a lovely lady, and they’ve now had a few calls together. Mum was very anxious the first time, but she’s been ok each week since, and is good at keeping the conversation moving. She’s even been open about some of the issues she’s been facing, which I’m hoping bodes well for any therapy she has in the future, if she’s willing to mention them to a stranger. I don’t know if she’ll keep using the service long-term yet, as it’s still early days and the novelty could wear off if they run out of things to talk about, but it’s good social experience for her.

Incidentally, Claire has also made me aware of other mental health support services offered by the Partially Sighted Society, Macular Society and Deafblind UK, which I’ve also made a note of in case they’re useful. I’ve also now created an index page for these carer-related posts, on which I’m including useful links that I know of or have learnt about.

Neither of us have ever had any type of therapy before, so it is a big step into the unknown. But the fact that she’s got a counselling appointment and a psychiatry referral has made me feel reassured, less emotional and a bit more focused than I had been. I’m still very anxious and worried for her, of course, but I’m relieved that help is on the horizon now, even if it takes a while to get here, and I’m just clinging on to the hope that it will make a positive difference.

Conclusion

So that’s where we stand in terms of my mother’s mental health, and if you’ve read through all of that then thank you so much, I really appreciate it. It’s feeling good to get this stuff out in the open, I must admit, so it’s not all hidden away and bottled up.

In my next post tomorrow I’ll talk about the impact this has been having on my own life – some of which I’m sure you can guess by now – and the support I’m trying to get for myself. After all, if I don’t look after myself, then I won’t be able to look after her either. I need help as much as she does, albeit in a different way.

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Author: Glen

Love London, love a laugh, love life. Visually impaired blogger, culture vulture & accessibility advocate, with aniridia & nystagmus, posting about my experiences & adventures.