Caring For Mum – Part 3 – My Wellbeing

As explained in my last couple of posts, my elderly mother’s physical and mental health has declined significantly in recent months, as she’s been struggling with the impacts of going blind and having falls, including anxiety, panic attacks, sleep disruption, confusion and visions.

That’s required me to be much more attentive as her carer, which in turn has had an impact on my own wellbeing, as seeing her change so quickly has been heartbreaking and a shock to the system, and therefore difficult to come to terms with. And even though I know I’m one of 6 million unpaid carers in the UK (many of whom are in far worse positions than me), it still feels like the loneliest job in the world, because I’m having to do it all by myself, unwitnessed in secret behind closed doors.

I have now started to reach out for support, both for myself and for Mum, and consequently I’m feeling a bit better than I was, because I know that help is on the horizon. But it is very much a waiting game, during which we have no idea how long it will take for help to arrive, what support we’ll be able to get, and how useful it will turn out to be.

I’m also very fortunate to have close friends who are keeping in touch to see how I’m doing, allowing me to sound off to them about what’s happening, offer advice, provide information and meet up occasionally, despite having issues in their own lives that they’re dealing with. I greatly appreciate that, as I don’t feel so isolated and it’s comforting to know that people care.

So here’s an insight into what it’s been like from my perspective and the support I’m trying to get. I hope you find it interesting, and again feel free to comment here or contact me if you have any help or advice or just want to be supportive.

Contents

• Early Emotions
• Current Feelings
• Leisure & Work
• Help & Support

Early Emotions

Having little moments of confusion, seeing a few visions and suffering occasional falls has been normal for Mum for at least a year now. And because they weren’t very frequent occurrences for a long time, they didn’t stop us from living our lives the way we normally do, and we didn’t feel any need to worry. After all, Mum can’t see and she’s old, so it’s to be expected that she’ll find it a struggle and not be as sharp-minded as she used to be.

But in these last few months those issues have escalated to become very regular, including daily moments of confusion and anxiety. And it’s really caught us off guard.

To begin with I told myself that while she’d been unlucky to have 2 or 3 falls, I knew that she would recover from them and get back into her normal routine, just like in the past. And I felt sure we could manage things ourselves just like we always have before.

But as things got worse, and it became apparent that she wasn’t getting better, I naturally became very anxious and upset about what she was going through, comforting and reassuring her as best I could. We never used to hug each other, but we do it fairly regularly now, each looking for reassurance that the other is ok. This situation has certainly brought us closer together, which is one positive to come out of it.

However, I also found myself getting frustrated that I couldn’t do anything to fix her, and that she wasn’t prepared to get mental health support for a while. And I do get a bit irritable if she’s interrupting my work, relaxation or sleep, especially if she’s calling out for me multiple times in a row. My frustration isn’t with her actions, but simply the fact that she’s still suffering, yet it still makes me feel guilty for feeling that way. I don’t want her to think I hate her.

So when I do feel like that, I do my best to stay calm around her. Early on it was quite difficult though, because I hadn’t expected to feel that way, and I did inadvertently upset Mum once or twice with my tone of voice or being a bit too stern with her. But she was having similar mood swings too, being equally frustrated by her own situation, leading to moments where she said hurtful things to me that she didn’t mean, which then made her upset because she was scared that I would be angry with her. That led to her crying in my arms a couple of times as she apologised to me and I reassured her that everything was ok.

And I’ve cried too, but not in front of her. It’s very rare that I ever get really emotional, and early on I suppressed any feeling of sobbing, even if I felt myself welling up. But there were a few occasions where she was really struggling, and her constant need for attention and the lack of help became completely overwhelming, which led to me returning to my study or bedroom and bursting into tears.

I was just terrified that things would keep getting worse, that I was losing the mother I used to know, and that I was powerless to stop it. I also knew that her mother lived to the age of 105, and despite all of her current issues my Mum is generally still healthy in her early 80s – so if we’re struggling after just a few months, what happens if this goes on for another 20 years?!

Feeling that way, however, did spark the determination in me to seek support. It was clearly getting too much, and I didn’t want to risk my own mental health declining further, or Mum’s for that matter. I nearly went down that path when I had sciatica during the Covid lockdowns, because my condition kept getting worse, yet it was impossible to get timely help from the NHS, for obvious reasons. So my mind started drifting into darker territory that it’s never done before or since, which made me go private to get myself sorted. And I’m glad I did. The best thing about the osteopath wasn’t his massages – as nice as they were – but his messages, reassuring me that I was fine and that we could fix it. It was such a weight off my shoulders, in every sense, and his words put me in the right mindset to regain my focus and figure things out. So I know first-hand that even basic mental health support can make an enormous difference.

---

Current Feelings

I’m happy to say that I’ve been feeling considerably less emotional and a little bit more relaxed in the last few weeks – enough to focus on writing this lengthy trilogy of posts for instance – because I’m reassured that help is on the horizon at last, even if it’s some way off, and even if we’re still having setbacks in the meantime. Plus there are signs that Mum’s improving a tiny bit here and there, which I’m more inclined to notice given my calmer mindset.

Don’t get me wrong, I’m still worried about Mum and how much support we’ll get, and I still get frustrated or irritable if she’s in one of her more emotionally dependent states, especially if I’m tired or if she wakes me up when I’m in bed. But I am able to control my emotions better at the moment, and I haven’t cried, or felt any need to cry, for several weeks now, thank goodness.

I’m just trying to pick up on any little positive I can, and point them out to Mum encouragingly when appropriate, while also recognising from experience that the path to improvement will be very bumpy and involve some backward steps, rather than being a straight line. And we do accept that we need a lot of help to steer us through this turbulent period, because we can’t do this ourselves.

I’m also glad that I’m able to comfort Mum when necessary, and can even make her laugh, even if it often involves me being a bit silly. And we do have plenty of normal moments together too, because when she’s calm and happy and focused, so am I. So I haven’t lost my mother, she is still here. There’s just a different side of her that comes out sometimes that we need to find a way to suppress or at least be better equipped to deal with.

So all in all it is still an emotional rollercoaster for sure, just not quite as bad as it was, relatively speaking anyway. While I am more relaxed overall, the fact remains that I am still concerned for her welfare, I’m always a bit on edge in case she needs me, I am anxious as to whether we’ll get much support for her, and it is very difficult not knowing how long we’ll have to wait for things. But I am keeping my fingers crossed, as there’s reason to be hopeful now, whereas it felt like there wasn’t before.

---

Leisure & Work

One consequence of all this is that I’ve steadily pulled back on my leisure activities, to the point where I’m now at home nearly all the time, so it feels a bit like I’m in lockdown again. It’s not because Mum isn’t allowing me to do anything, but we both know how anxious and panicky she gets if I’m out for too long now, and how confused and unpredictable she can get when she wakes up from sleep. She’s afraid for me to go out and I’m afraid to leave her.

So the only reasons I’m going out now are to do a bit of shopping at our local M&S – because we love their food and feel we deserve treats for getting through each week – or to attend appointments, or to occasionally meet up with friends – either for a general catch-up or even a theatre show like I did in June. I certainly treasure the company of my friends, especially at a time like this, and Mum also wants me to see them as she knows I need their support, so she does make an exception for that despite the fact that it makes her very anxious when I’m out.

Apart from all that however, I’m no longer going out by myself for long walks, or for events with the Spice Social group I wrote about so enthusiastically just a few months ago, and I’m not booking any theatre shows to attend by myself. And I dearly miss all of that. I was so in the routine of doing those kind of things, and was loving the fact that I was getting back into social events and meeting new people again, that it’s been difficult to adjust to everything stopping, just like in lockdown.

But for those few occasions when I do still go out, I’ve set up a “Where is Glen?” command on Mum’s Alexa device that she can (and does) check on me with. It just reads a message back to her, which I manually update on the app as and when necessary. So if I go to M&S, for example, I’ll set the message to say when I’m on my way there, when I’m shopping in there, when I’m on my way back on the Tube, and when I’ve left our local station to make the final walk home. Part of me wonders if it’s wrong to do that, in terms of fuelling her emotional dependency and need for attachment to me, such that she’d get more upset if I stopped doing it. But she does like it and finds it reassuring.

I can also sometimes get my Aunt to keep an eye on Mum while I’m out, but she can’t be here all the time as her own life is rather eventful, and she doesn’t fully understand Mum’s situation or needs. But she is staying in contact and popping round every so often to see how Mum’s doing, which is lovely of her.

As for my job, the situation has impacted the support work I provide for my friend Emily as well, because sometimes it’s been hard to focus on it when Mum requires my attention for help or reassurance, and I haven’t always got quite as much done in a day as I used to. And of course I lost an entire day of work recently when I had to take Mum to the hospital. Consequently, there have been occasions where I’ve put in a few hours in the evenings or at weekends to make up for lost time, as the jobs quickly add up otherwise and I don’t want to let Emily down.

That has improved over the last couple of weeks or so though, now that I’m more relaxed in the knowledge that Mum has been referred for mental health treatment. So I am more focused on my work now like I used to be. Not perfectly, but I feel like I’m being more productive and my work days are a bit more normal again, so I’m not doing very much out of hours now.

In any case, I’m incredibly grateful that Emily and her editor are being so patient and understanding, as I know it must have been a bit frustrating for them sometimes when Emily hasn’t been able to post as many stories as usual. And I am keeping Emily posted on developments of course.

Beyond that, my time is also occupied by preparing and cooking our meals, doing other little jobs that Mum needs help with, writing rambling blogs like this, watching TV, listening to music, etc. So I’m certainly not bored these days. I just don’t have anywhere as much time for leisure and relaxation as I used to, especially in terms of going out.

It would certainly be nice to be able to have a break sometimes – although carers aren’t legally entitled to one, and the Carers Trust are currently running a petition to change that, so it would be great if you could sign it (they aren’t sponsoring this post, I just happened to notice they were doing it and I agree with them).

---

Help & Support

In a situation like this it’s surprisingly difficult to speak up and admit you need help at first, whether you’re the carer or the person being cared for, because you assume you can get through things yourself and you don’t want to be a burden to anyone else. You also don’t necessarily know what help, if any, is out there or feel confident that you’ll be able to get it, especially in an age where there are so many cutbacks to funding and services.

But I know I need to try and look after myself and get support as well as seeking help for Mum, so that’s what I’ve started trying to do.

In my previous post I explained the mental health support that we’ve arranged for Mum. But beyond that, I’ve also done the following:

• Registered with our local carers community organisation, which means I can attend workshops when time allows and receive newsletters that include useful information.
• Arranged for a Carer’s Assessment for me and a Care Needs Assessment for Mum from our local council. I initially applied on July 2, since when they’ve called each of us and asked us various questions, and they’ve said they’ll try to arrange a joint assessment soon. It would be nice if it could enable me to take breaks – e.g. to get people to be with Mum so she’s not lonely or unsafe while I go out, or even take her to day centres so she has something to do and people to meet. It would also be useful to have help with cleaning, as she can’t do it at all right now, and not very easily in general anyway, plus I don’t have time to do it while I’m working and looking after her, and we’re both visually impaired so we can’t do it perfectly anyway. And perhaps we could get some further rails or other adaptations in the home for her. I don’t mind paying for things either, i just need to be able to access support now and in the future.
• Applied for a Carers Emergency Card. This was something I learned about in one of the newsletters from the carers community, so I sent off the form on July 31. It will mean I have a card that I can carry with me at all times, containing a registration number and a telephone number. If I’m then in an emergency situation while I’m out which means I can’t care for Mum (e.g. if I have an accident or fall seriously ill), then the phone number can be used by me or emergency services or a member of the public to trigger my emergency action plan. The call centre will try and get hold of my Aunt first, as she’s my emergency contact, and if that fails they’ll get someone from a local agency to look after Mum, and there are details on the plan about her conditions and needs. So that would give us both peace of mind in case anything happens to me, as I know Mum does get worried about me when I’m out of the house.
• Been referred for a wisdom tooth removal. That’s got nothing whatsoever to do with this situation really, but it’s something I’ve been referred to a specialist for recently. And it may affect my ability to care for Mum if I have to spend a day or two recovering. Depends how complicated it ends up being and how painful it is afterwards!

---

Conclusion

So there you have it, I think that’s the most personal post I’ve ever done, in terms of talking about my mental health. So I hope you found it interesting, and thank you for being supportive by reading this trilogy, I appreciate it. Thank you so much again to my friends who are checking in on me as well, that really does mean a lot.

As I say, I am fine on the whole. It is very difficult sometimes, granted, and will continue to be for some time, but I’m better than I was a couple of months ago. We just have to hope the wait isn’t too long for any support we get.

I’ll keep you updated in any case, probably in the form of journal-style posts around once a month, or possibly more frequently if anything major happens. We’ll just have to see, as this journey is completely unpredictable.

And I’ll still be posting about other things as well, such as the entertainment I’m enjoying, and anything exciting I do when I get the opportunity to go out and about. This caring stuff is just another topic I’m throwing into the mix here. So thank you for reading, and I’ll see you for more posts very soon!