Since leaving full-time work earlier this year to focus on caring for my mother, it’s been a difficult few months for reasons we hadn’t expected. We’re doing better now, but it was a rough ride sometimes that has set us back a bit and given me pause for thought.
For one thing, I managed to pick up a foot injury, which stopped me from going out. I believe it was metatarsalgia, as it affected the ball of my foot. Thankfully it’s been slowly getting better with rest and more appropriate footwear, and I am now going out around my local area for walks and shopping again quite comfortably. I still get occasional faint twinges, reminding me to be a little bit careful, but they’re increasingly rare and disappear quickly.
In addition, while I was recovering from that, we had a series of 6 intense heatwaves to deal with here in the UK. Occasional spells of hot weather are fine and very welcome, but this was a relentless period of above average heat and stifling humidity with barely any respite between each wave. Suffice to say it did my elderly mother no favours, and thus required me to stay indoors most of the time to look after her. We both got quite fed up with it, as it felt like it was never going to end! And now it finally has, it’s taking time for Mum to get back into the full routine she had several months ago, as being unable to do much for so long has affected her confidence and independence. So it’s still limiting how much I can go out, as she doesn’t like being alone for too long.
What’s really struck me as I reflect on the summer, however, is that I’ve been on a similar rollercoaster ride to last year in terms of my mental health while caring for Mum. And as I’ve found myself making comparisons and noting the similarities, something has finally clicked in my mind. It was probably obvious to everyone else, but it’s only in hindsight that I’ve been able to see and acknowledge it by name.
I’ve been grieving. I’ve been going through the stages of grief. So I wanted to offload and structure my thoughts with a post and a video about it.
Contents
Dealing With Grief
Mixed Emotions
It’s the natural response to grieve when someone dies, so it’s rather caught me unawares to be doing it while Mum is still alive. And now I realise it, I feel naive not to have noticed it before. Yet having looked it up online, I see that it’s normal for carers to take a long time to make this discovery, because you’re in the eye of the emotional storm without really considering or understanding what’s causing it. After all, nobody trains you to be a carer or tells you what to expect, so it just happens out of the blue and you have to fumble your way through it, trying to find help when you feel you need it.
I always knew there would come a time when I’d have to look after Mum much more closely, sacrificing some of my personal freedoms in the process, and I knew that it would be difficult sometimes. So feelings like sadness, frustration and stress haven’t had a deeper meaning when I’ve been focused on helping her day-to-day, because I’ve simply been getting on with things and figured I was probably just a bit tired. And if I’ve got really upset, I’ve just tried to find time to relax, in the belief I had let things get to me too much. So it never occurred to me to put a name to it all as a whole.
What’s really thrown me off the scent though is that Mum and I are actually very happy in many ways. For instance, we’re much more affectionate than we ever used to be, sharing cuddles every day so that, due to her blindness, she has tactile contact. They’re warm and reassuring moments for both of us – although during the heatwaves we had to keep them short so that she didn’t get too hot. She likes me stroking her hair as well, she enjoys the dinners I cook for us, she thanks me for the things I do for her, and we’ve gradually been finding it easier to talk to each other about our thoughts and emotions.
I’m also able to make her laugh most days quite easily, for instance by making jokes, singing along in silly ways to music on the TV and radio, saying particular words in certain ways that I’ve learned are amusing to her, and getting her cuddly teddy bear and lion involved during her bedtime routine or at other points in the day. I love hearing her laugh and being able to join in with it, because it comforts me to know that she’s having those moments of happiness in which she feels relaxed and loved.
We even laugh at less pleasant things as well sometimes, such as when she had an accident, shall we say, that I had to clean up. She did feel ashamed and I hated dealing with the mess, so she could have got really upset and I could have got very frustrated. But we just ended up laughing about it as we were dealing with it, because it wasn’t her fault, and there was nothing to be worried about as it was a very rare occurrence. I think the fact that I wasn’t shocked or angry, because it’s the sort of thing I expect to happen occasionally, helped her to feel more at ease about it. So she was probably laughing with relief at first, and often when she laughs I try to capitalise on it to keep it going a bit longer, which I did there.
So I didn’t expect to be laughing while grieving, because the two concepts seem incompatible at first. But when you think about it, laughter is one of the most powerful tools to cope with it, acting like a comfort blanket and a distraction, hence my mother and I have harnessed it so readily. I did the same when my father died, watching lots of comedy that night and in the weeks that followed. Indeed, many people go to comedy gigs in hard times, as illustrated by Jimmy Carr in his crowd work videos, where he responds tenderly to grieving members of his audience (he has a great chat with a blind man at the start of that clip too). And TV sitcoms can also incorporate grief to great effect, such as the classic episode of Only Fools And Horses about Grandad’s funeral, which is very moving yet still generates laughs and moves the show forward. There aren’t many writers like John Sullivan who could pull that off so well.
Having such a mixture of ups and downs, therefore, is obviously part of life in general, as well as being a carer, hence I dismissed it as nothing more than that. And on the whole we are happy, despite the issues we encounter. But having taken a fresh look at the negative feelings I sometimes experience, I’ve been able to put the pieces together, take a step back and look at the full picture in a fresh light.
Sense Of Loss
The 5 recognised stages of grief are shock & denial, anger, bargaining, depression and acceptance. And as I look back on my caring journey so far, it’s clear that I’ve been going through them all in one way or another, and will continue to do so.
As many websites indicate, it’s not a linear path where you move from one stage to the next, and it’s not a journey with an end. It’s a jumble of emotions that form a unique pattern for each person. Trying to find some balance between the pros and cons of life as a carer is a difficult and ultimately futile process, because of how unpredictable it can be. The best you can do is embrace the good times and develop coping strategies for the difficult moments.
But it all comes down to one root cause – loss. Over the last couple of years I’ve witnessed the total loss of Mum’s eyesight, and a big loss in her mobility, confidence and independence, which in turn has led to some loss of my leisure time, social life and paid work. She is still able to do some things by herself, and I am still able to go out for short periods, stay in contact with friends and do a bit of freelance work. But nevertheless these changes have had a significant impact on our lives, and it’s likely that they will get worse in the future.
State Of Shock
To start with, the shock of seeing Mum’s health deteriorate so rapidly really knocked me for six. The mental health effects that Mum experienced from going totally blind were soon followed by the physical impacts of her falling due to both her blindness and old age. Having so much happen to her all at once was scary and difficult for both of us to come to terms with. And then being hit by so many heatwaves for so long this year was a shock to the system too. We know they will probably become more common due to climate change, but it’s still something we haven’t experienced to that extent before.
In line with that, there has certainly been denial as well. I’ve always tried to look on the positive side of things, so I kept trying to persuade myself and Mum that, given time, we could get back to going about our lives in the way we used to, even when I feared that things were changing for the long term. As much as I knew the time would come, part of me didn’t want to believe that it was now, and I was scared to accept the possibility. I hoped it was just a bump in the road we could get over.
That in turn is connected with bargaining, as an attempt to try and regain control when it seems to be slipping away. I kept looking for ways to fix things, and found myself thinking about what could happen in different scenarios, or regretting doing things in certain ways that might have made things worse. And while I don’t believe in a higher power like God, there have been a few particularly stressful moments where I’ve looked to the sky and pleaded with anything that might be up there to stop putting us through all this, including Dad if he’s watching. It’s never worked, but there’s no harm in trying!
To be fair though, we have been able to improve some things – most notably Mum’s sleep cycle with the help of melatonin, which has made her a lot better during the daytime, while her new wheelchair allows me to take her out more easily, and we do have a mental health doctor and a befriending volunteer for Mum who we can call upon for a chat anytime. We also have plans to make the house more accessible for her so that she feels safer.
But not everything can go back to the way it was. And that has naturally upset me sometimes, hence the depression stage of grief. I have cried a few times over the past couple of years, when I haven’t been able to help Mum enough or put things right, and I’ve let it get on top of me. It’s been many years since I last did that, so it is very unusual for me. I haven’t cried as much this year, which I’m glad about, but it has happened once or twice. It can make me feel silly and ashamed, and in most cases I haven’t told Mum, but letting it out of my system like that has helped me to feel better.
Anger & Frustration
What has unnerved and upset me most though has been the anger side of things. I’m a very calm person on the whole, to the point where I can be a bit too laid back about things I should be up in arms about. So to find myself getting frustrated or angry as a carer sometimes, and on a few occasions letting Mum see me in that state, has been disconcerting. It can look like I’m frustrated with her directly, when it’s actually towards the situation she finds herself in, through no fault of her own, which I have little to no control over. I hate that she’s going through this stuff and that I can’t fix it.
When I have got frustrated, I’ve often felt guilty and embarrassed afterwards, berating myself for being like that, as I worry it makes me look like a bad son when I’m trying to do my best for her. And not being able to explain those feelings can in itself make me more frustrated, resulting in a bit of a vicious circle. So I’m only really now starting to accept that it’s a natural response born out of grief and I’m not a bad person because of it, and consequently that realisation is helping me to recognise my feelings and control them much better.
Various things have caused me to feel a bit irritated sometimes. For example, it can happen if Mum keeps asking for help or attention multiple times when I’m in the middle of something or if I’m just trying to relax. The main reason I left my role as a support worker was because it became too hard to help two people with urgent needs at the same time (and I’m sad to hear that my friend’s Access To Work situation still hasn’t been resolved). There have also been a few sporadic occasions where Mum has woken me up in the middle of the night for a seemingly unnecessary reason. And another trigger is when I’ve helped to guide or direct her to a certain place only for her to keep forgetting the way, which is more likely to happen when she’s tired or anxious and thus not thinking clearly.
Identity Crisis
The occasions I’ve found most frustrating and upsetting, however, are when she interprets me as a younger version of my myself or a woman. it doesn’t happen regularly, so most of the time she does know that I’m her real son. But it tends to happen in certain circumstances, and it can make things very difficult, because it’s an impact of her blindness that neither she nor I could have anticipated or been prepared for, and we can’t do much about it.
It stems from a couple of years back, not long after she first lost her light perception and went totally blind. Her brain started to make hallucinations to compensate, particularly when she became really tired during the day, due to her sleep cycle being all over the place. As far as I understand it, this seemed to happen if I spoke to her as she was coming out of a dream state after having a sleep in the lounge, at least to begin with, and then became a bit more frequent after that. Her mind would basically interpret my real voice as coming from a younger version of me or a woman, and generated a moving image in her vision to match up with it, making them feel real to her. I had no idea she was seeing those visions at first, as she didn’t tell me for a while because she thought she was going mad. It was only later that we spoke about it and I started to figure out what must have been happening.
The hallucinations have long since stopped, perhaps thanks to the melatonin settling down her sleep cycle. All she sees now are colours generated seemingly at random by her brain, which are still a bit unsettling for her, and she doesn’t get so tired that she sleeps during the day anymore. But the concept of a younger Glen or a female sometimes being in the house has stuck in some corner of her mind as fact, so there are still occasions where she interprets my voice that way. Deep down she knows it’s wrong, because she didn’t give birth to a twin of me and there’s no other possible explanation for his existence, and I don’t feel like a woman to her when she touches me. She also can’t understand why there are never 2 or 3 of us in the house together, or why she and I only ever do cooking and laundry for 2 people if there are others here. So she does know they’re not real, yet part of her is still sure they exist.
As far as I can tell, her worst periods of confusion happen when she gets really tired or feels unwell and/or there are big rises or drops in the temperature or atmospheric pressure that her body has to try and adjust to. She can also be badly affected when her vision is filled with a dark green colour, which she particularly dislikes, or bright white, as it makes her think she’s outside.
In situations like these, it feels a bit like she’s gone into the equivalent of a computer’s Safe Mode, with her mind limiting its use of resources but still allowing her to function normally, while it tries to sort out other things in the background. It makes her either forget or become extremely uncertain about where things are and how to navigate around, and sometimes she thinks that the lounge has an older layout that she last saw decades ago when she had sight.
But that’s also when she’s likely to think that I’m the younger Glen or a woman. And once she does, that’s it. There’s no shifting it or convincing her otherwise until she settles down again. She doesn’t like them, and is convinced that they boss her about and always lie to her when they tell her that things haven’t moved. If she’s then shown where something is, or tries to navigate around herself, her spatial awareness can be so off that she questions why things are in impossible places, like the stairs being in the lounge instead of the hallway.
On some of those occasions she has therefore got angry with me, or specifically with the person she thinks I am. It ranges from her simply asking why I’m lying to her, and getting annoyed if I say I’m not, to much rarer but more aggressive outbursts telling me to go away or saying that she hates me. Even though I know it’s not the real me she’s referring to, it is still directed at me, so it still hurts. Yet I still have to care for her regardless, and if I’m tired myself it’s really hard to keep calm.
It’s one of those incidents that led to the idea for this post. After those many weeks of hot weather recently – during which she couldn’t do much and often didn’t sleep properly, plus it was too hot for us to have proper cooked dinners a lot of the time – she struggled to adapt for about a week when the temperature fell quite significantly and the air pressure changed. And on one of those evenings, when she and I were both rather tired, she thought I was the younger me, got very annoyed and uncooperative, and we had an argument about who I was, which made me openly upset that she was being horrible to me. But what then made me angry was that she just laughed in response. She was so deep in that state of mind that even her own son tearfully pleading with her didn’t make her care. So I stormed out of the room and into my study, something I’ve never done before, but it was just too much and I needed space to calm down – which I did, but it was a strange moment.
We cuddled and made up soon after of course, because it was a very exceptional situation by our standards. I think, after a difficult few months with my foot injury and all the heatwaves, our respective frustrations had built up to the point where they had to be released somehow. And doing so actually helped to clear our heads a bit. I felt awful for having a go at Mum and dwelt on it for the rest of the night and some of the next day, which is when the whole idea of grief suddenly clicked into place, and I confirmed it by looking online. It was such a relief to see that it all made sense, so it really helped me to feel better.
Moving Forward
Communication
Being a carer, or the person being cared for, has been a real learning curve for both myself and Mum, more than we expected. But we’ve gradually been improving, because any disagreements or upsets we’ve had have shown us how to communicate better, about things we’ve never had to consider or discuss before. Mum has sometimes been scared to tell me about things that are happening to her, in case I think she’s mad and send her into a care home, and I’ve been frightened of saying or doing things that upset her or make things worse, or I’ve just had no idea what to do for the best. It’s been new territory for both of us.
So we are continuing to make an effort to be more open with each other. Mum is realising that she needs to tell me what she’s seeing and feeling, and what she wants me to do to help her in the best way, because I don’t know for sure what’s going in her head otherwise. That then helps me to respond in the best way. And now I understand better why I get frustrated or upset sometimes, I have more power and incentive to rein myself in, so I can be more patient and attentive even when things are difficult. It’s going to take time to change our habits and natural responses I’m sure, and it will probably never be perfect, but we are moving in the right direction. The difficult times have always ended up bringing us closer together, so ultimately they’re not a bad thing.
Accepting Grief
Acknowledging, admitting and accepting the grief I’ve been experiencing, and taking the time to write my thoughts down here even if nobody reads them, has been quite therapeutic. Realising that it’s common for a carer to react in the ways that I have, and that it doesn’t make me a bad person, is reassuring and feels like an important milestone in my caring journey. And talking to Mum about it has also helped her to understand, accept and talk about the fact that she’s been grieving too. It’s a comfort to know that we’re both going through it.
I could go and have a bit of therapy or counselling of course, and maybe I should at some point. It’s not something I’ve ever had before, and now I’ve written things down I don’t feel a major need for it. But I think a potentially better step could be to try and connect with other carers, and take more advantage of carer support services, as that could be as beneficial as my links to the disabled community have proven to be throughout my life.
I am registered with a local carers organisation, but it had previously been difficult to get to talks and events, as they only put them on during working hours. But now I have more free time, it’s probably worth looking into them more. For example, I know they offer free massages for carers every month, meetings with guest speakers, online access to courses on relevant topics, links to all sorts of resources (a few of which I have already made use of), and other stuff. So I’ll give that some consideration. After all, I’ve spent so much time finding support for Mum, I ought to get some for myself too.
Carer’s Allowance
Another thing that’s made me feel better this week is that I’ve finally been approved for Carer’s Allowance, and have received my first chunk of the back pay they owe me. I first put in my claim in February, so it’s taken them 7 months to sort it out. They asked me for additional information in April and May, and I got a phonecall in early August to clarify a few things, so I knew it was slowly being processed, but it’s a relief to finally get it sorted.
It makes it feel more legitimate that I’m a carer somehow, knowing that the government recognise it. It also gives me peace of mind that not only am I getting some degree of financial compensation for my efforts – as low as it is – but it also means that I’ll get Carer’s Credit, to ensure I keep building my entitlement for the State Pension while I’m out of full-time work. And I believe I can apply for a Council Tax discount as well.
Going forward, the Carers Allowance department will keep asking me for updates about my income every 3 months for the first year, and then afterwards they will just ask for updates on an annual basis. And that’s fine, I’m happy to do that. I am, however, surprised that it’s all being done on paper, as it’s a very slow process. Their letters take about a week to arrive, with forms I then need to fill in by hand and send back, including supporting evidence I have to print out to go with them. And then it takes several weeks before I hear anything more. Access To Work claims are online now, for example, with all supporting evidence uploaded to the government portal, so I’m surprised there isn’t a similar facility for Carer’s Allowance, as it would make things a lot quicker and easier for the DWP as well as claimants.
Going Out & About
What’s still more of an uncertainty is how much of my social and leisure life I can get back. With the heatwaves having burned away some of Mum’s confidence – which is slowly returning – she’s been very anxious about being on her own for too long, quite understandably. I expect there will be a similar impact if it gets really cold during the winter and she relies on me more then too. And in general I think there will be some periods of time where I can go out more than others, as has already proven to be the case over the past couple of years.
The main issue is that there isn’t really anyone else who can be with Mum in my absence, not least because it’s me she wants when she’s feeling anxious. We do have a family member nearby who supports us in other ways, which we’re very grateful for, but they don’t understand Mum’s needs in order to look after her properly, and they have their own health issues and a busy lifestyle that they need to focus on, although they would of course step in if there was an emergency. And while paying for a professional carer remains an option, I don’t know how we would find the right person who Mum and I would both trust, and it wouldn’t be cheap. So it’s simpler and nicer for Mum if I stay at home, and I am genuinely happy to do that. I would still like to get out more in London, of course, but I’m pleased to be doing so locally again for now, and I am able to keep myself occupied at home in all sorts of ways, this blog being just one of them, so I’m never bored.
When I do go out, Mum does wear a pendant for help if she falls, and I’ve recorded some voice memos and set up responses on Alexa to remind her of directions or other things if she needs it. She can even ask Alexa where I am and it will tell her, relaying messages that I update in the app at appropriate points. All of that stuff has helped her when I’ve been out in the past, and has continued to do so while I’m going out locally at the moment, so we know it will all be useful when I go out for longer again. We just need to work back up to that without rushing her, and hopefully we’ll also return to a point where I can take her out for journeys in her wheelchair again, as we had been making good progress on that before things went downhill. Her confidence has always been very fragile, so it always takes a while for it to improve again when it takes a knock. But she does want me to go out more and she wants to be taken out in her wheelchair, just not quite yet.
Because of our situation, therefore, I had to cancel a day out with a friend to see a show for my birthday in August, which was a real shame, as it sounded good and I hate messing people around. But we’re hoping to arrange a more local meeting soon. They and other friends have been very kind as always, keeping in contact to check I’m alright and have a general catchup. One of my fears has been that if I can’t go out as much or guarantee my availability, then some of my friends might drift away if they can’t meet up easily any more. And it always feels a bit awkward when I have to say that I can’t go out because of Mum, as if to imply she’s deliberately controlling me when she isn’t. So it’s reassuring that people do stay in touch, it means a lot.
As for things like theatre shows, exhibitions, events, etc, I’m now very reluctant to book anything in advance, as there are several bookings I’ve had to cancel over the past year already. It’s hard to plan anything too far ahead, given how unpredictable Mum’s situation is. I also therefore need to consider whether to renew my Spice Social membership again, as I had written a glowing review of the group last year, feeling excitement about doing more with them, only to stop attending their events with everything going on. I optimistically renewed it this year when there seemed to be the possibility of resuming my involvement, but I can’t keep doing that on the off-chance. I have until February next year to decide, so we’ll see how things are by then, but it looks likely that I’ll end up cancelling it.
Ultimately, it’s really just a case of taking it week by week at the moment. Being able to go out locally again is great at least, and Mum has been doing better since the weather returned to normal, so I’m staying hopeful that I will be able to get back into Central London again, on my own and with Mum too. But if I do have to put that kind of thing on hold for a long period, and there will undoubtedly come a time when that becomes a necessity, I know that it won’t be forever.
The Future
If we’re talking about grief, then I am of course well aware that I will go through it again in a different way when Mum dies. I obviously don’t know when that will be, and I don’t want it to be too soon. But if she lives as long as her own mother (to nearly 105), and there’s nothing currently to suggest that she won’t, then I potentially have another 20 years of caring ahead of me. An awful lot can happen in that time. So when things have got particularly stressful, I have naturally been fearful about that, and I have told myself that it will be a relief when it’s over.
It sounds like a horrible thing to feel or say, and I have felt guilty about it sometimes. I certainly haven’t said it to Mum. But again I’ve learned it’s something that’s common to many carers, and like it or not there is truth in it. Much like my current situation has been a strange mixture of ups and downs, I know it will be a similar rollercoaster ride after the worst happens.
I will be devastated at her loss, and it will take a lot of adjustment given that she’s been such an integral part of my life for over 40 years already. Bereavement counselling may well become essential at that point. But if I still have good health, then I will have total freedom to focus on myself, go where I want and do what I want, and I won’t deny that I’m looking forward to that. I also know that I’ll be able to look after myself with cooking, cleaning, etc, and Mum has felt reassured that I will be fine in that regard, because I already do a lot of that stuff now. It is of course also very possible that my sight will be worse by then, but I know that there will be plenty of support available if that’s the case.
But I know not to dwell upon the future, because it is completely unpredictable and all the ‘what ifs’ could drive you mad. So instead, Mum and I are simply focusing on the here and now, taking things day by day, week by week. We are much better than we were over the summer and we are still learning as we go along.
We’re also currently looking at ways to make certain rooms in the house more accessible for her, which in turn should further help to increase her confidence and independence in the long run. Or to put it another way, we’re looking at how best to make an investment in her future, as well as mine, because if this caring journey is going to last a long while, then we want to try and ensure that we’re as safe and comfortable as possible.
Conclusion
As usual, a small idea for a post has snowballed into an avalanche of text, as I’ve attempted to process and organise my thoughts. It just goes to show how complex caring and grief can be, and it’s been good to get it out of my system. And as with all of my posts about being a carer, I could have just hidden it all away in a private journal. But I see no harm in putting it online, and I feel it’s important to be open about the more difficult parts of life where possible. I also know from 10 years of blogging that my posts are sometimes very helpful to people who are going through similar situations to me.
And to be clear, I am still happy overall, despite the inevitable difficulties that come part and parcel with caring for someone. I love my mother and being with her, I love how my increased caring duties have brought us closer and enabled us to communicate better, I love that I’m able to help her retain some of her confidence and independence, I love that I can help her during the harder moments, and I love making her laugh. I’m now certain and happy that my decision to quit full-time work was the right one taken at the right time, I’m glad that I have the ability to look after her myself, I’m very grateful to my family, friends, local services and the government for providing vital support, and I appreciate how fortunate we are to be in a position where we are financially stable to get through this. I also have plenty to keep me busy and entertained at home when she doesn’t require my support, and I’m still hopeful that I’ll be able to get out in London more, even if it’s not on a consistently regular basis.
So if you have read this far, then thank you, I do appreciate it. I hope it was interesting and perhaps even relatable. Normal service will resume on this blog very shortly with my next monthly roundup and more entertainment reviews as usual. it’s just felt good to get this out there.
Finally, here’s a short list of relevant articles I’ve come across online while doing a little bit of research for this post, in case they’re as useful to you as they have been to me. There are of course plenty of other websites discussing this kind of topic as well.
- The Stages Of Grief:
- Grief & Other Feelings As A Carer:
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