Becoming an Unprepared Carer

I recently wrote a blog post for Carers Support West Sussex. I’m not actually based in West Sussex, but that’s not the point of this post. In that post, I remarked that nobody tells you what you need to know about being a carer until you are one. I must confess, even then it’s still fraught with difficulties. I’d like to think with the Care Act (2014) and the enhanced legal rights for carers, that the job of being a carer is becoming easier for many. In my case, I still feel that I’m learning. That’s probably why some of my carer posts on this blog may seem simplistic, or even just common-sense! That’s why, for this post, I thought I’d look at some of the things that I wish I had known from the outset.

You’re Not Alone

It can feel very lonely as a carer. I’ve commented previously on how the early days affected my social life. There’s a fear that grips you when you first realise that the person you’re caring for depends on you. That fear controls you. To some extent it always will. I still clockwatch when I leave the house, and I don’t think I’m ever truly settled unless I know someone else is with my mother. There’s the financial issues too if you’re unable to work because the person you care for needs constant attention. It’s tough, it’s trying and yes, you will sometimes feel lonely.

Kath Rella Carer
In the early days, I felt like a lost child until I learned to ask for help.

The good news though is that you’re not alone. We’re somewhat fortunate to live in an age where we can communicate online. The charity, Carers UK, has an online forum where you can chat with other carers, and I fully recommend it to people of all ages, particularly those new to a caring role. Carers UK also offers a variety of information services, and a helpline.

And don’t ever discount your friends. None of us want to be someone who leans too much on their friends, but I couldn’t have got through this without mine.

You’re Entitled To Me Time

You’re also entitled to support from the local authority. You can request a Care Assessment which is designed to meet your needs. This can include someone taking over your responsibilities for a few hours here and there so that you can get some valuable “me” time.

But even when you’re at home, you’re still entitled to some down time. There’s a danger that we define ourselves by our role. We may begin to think or feel as though we are a carer and that is all we should do. Somehow, doing something for yourself is a betrayal. The truth is though, being a carer should not be how we define ourselves. We’re still people and we need quiet time, me time, fun time etc.

Kath Rella Carer
Escaping to new worlds with one of these is part of my “me” time.

The best advice I can offer is try and learn a routine that affords you some time to kick back and do something you enjoy. Watch a movie, read a book, play a video game, take a walk etc. You’re more than a carer.

You Can Still Pursue Your Goals

When I became a carer, I honestly thought that was it. I’d be a carer for however long and then end up with a CV that was pretty much blank for several years (thirteen and counting!). At times, I still fear for the future. I mean, who’s going to want to employ me, right? Employers will be looking for experience and I’m not going to have much of that.

However, we can only face the future when it becomes our present. I can’t see what will happen in five, ten, fifteen years time, and I’m not going to hazard a guess. So I’ve taken some initiative for myself, and I’ve studied with the Open University. I have quite a few qualifications now. I bagged myself a distinction on my most recent module!

Jennie Lee Building Open University
Jennie Lee Building at Open University Main Campus in Milton Keynes

And I have other dreams too. I enjoy writing, and have a small number of creative writing pieces on this site. My intention is to publish a novel sometime over the next year or two. Maybe not all my dreams will become a reality. I probably won’t score every goal I have. But being a carer doesn’t mean an end to it all, nor does it mean I can’t push myself to accomplish things.

It’s Okay To Be Unwell

I recently posted about caring while unwell. For the longest time, I was adamant with myself that I couldn’t be ill. In my mind, I had to be the strong one, the fit and healthy one. I had to be in perfect working order to look after my mum. Honestly, I thought of myself as a machine rather than a person. Consequently, I’ve probably tried to ignore a few things that I shouldn’t have. I dare say I’ve allowed my health to suffer somewhat. It doesn’t help anyone though, not me nor my mum.

Kath Rella Carer Thoughts
I didn’t feel quite this bad, but if you do, that’s okay.

When you’re ill, focus on making yourself better. I don’t mean to suggest that you ignore all your caring duties, but prioritise what needs to be done and let the less-important stuff slide until you’re better. Cutting yourself some slack is something we all have to learn.

It’s Okay To Be Depressed

I’ve written more than a few words on this site about depression. I suffer with depression, and have now for as long as I can remember. It’s just as much a part of me as my skin. That probably sounds quite defeatist but it isn’t intended to be. Through therapy, I’ve learned to cope with my depression. I imagine it will always be there in some shape or form but it’s not going to beat me, and that’s the best I can hope for right now.

Carer Thoughts Bullying
A fairly accurate representation of me for many years.

Depression is a horrible affliction. Your own mind seems to rebel against you. Something whispers in your ear like sodding Wormtongue the most horrid of thoughts. When you’re a carer, the last thing you need to hear from your own mind is how much of a failure you are. I heard it. There are times in my life when I have felt so completely worthless that taking my own life seemed like a sensible solution. It’s not though, it’s a stupid, permanent solution to a temporary problem. If you feel depressed, don’t sit there and take it. Don’t allow some twisted illness to dictate to you. Make an appointment with your GP, and when in crisis call The Samaritans. You’re a carer and you’re definitely worth a whole lot.

You’re Not a Failure

Obviously, this ties in to the depression bit above. It’s still worth repeating and worth its own heading. You cannot do any more than what you are physically and emotionally capable of doing. Sometimes it might seem that you’re being asked more than you’re able to give, and you might feel like you can’t do it. This doesn’t make you a failure. It doesn’t mean that you’re not an adequate carer. There’s a bunch of things that I cannot do. I can’t fix the light-fitting that needs fixing, for example. And yes, at times, I have felt that I can’t be the carer that my mum needs.

Carer Thoughts Kath Rella
You may feel like this but you shouldn’t.

I was a selfish, naive, stupid girl when I started caring. Suddenly placed in a position where I was responsible for someone else’s wellbeing was terrifying. I couldn’t do it, or so I thought. With help, I managed to get a grip on my emotions, calm down and learn. As I’ve learned, I’ve grown and got better at it. Yes, I still feel bad when my mum’s in pain, or having difficulties – but I feel bad because I cannot wave a magic wand and fix everything. Nobody can, though. Accepting you’re doing the best you can is a big step. Learning that you also offer companionship is the next one.

You Can Learn About Yourself

I didn’t envision being a carer as part of my life. I have, however, learned that I can do it. In fact, I’ve learned a lot of things about myself over the years. From my academic gifts, through to my ability to adapt and react, and even my fondness for creative writing! I cannot say for sure I would not have learned these things if I were not a carer, but I can definitely point to being a carer as the reason I’m aware of them now.

Kath Rella Carer Thoughts
Okay, yes, this may be a slight exaggeration.

I think being a carer has taught me that I’m actually a strong person, stronger than I ever gave myself credit for. There’s things I’ve managed to accomplish that I wouldn’t have dreamed of doing when I was a teenager. It can be argued that this is natural growth, and I won’t deny that, but we are the sum-total of our personal experiences. I am what and who I am because of the life I’ve lived. I’d argue I’m much less selfish, more compassionate and probably a much better daughter and friend.

It’s Okay To Be Annoyed

It probably isn’t okay to be annoyed permanently, but you need to cut yourself some slack when you’re a little peeved at things. I love my mum, but she annoys me sometimes. I annoy her sometimes. It’s a thing that happens. People, no matter how close, annoy each other from time to time. Currently, my mum is going through a fussy-eating phase which is making it difficult to prepare meals. I’ve adopted the approach used with children of just cooking it and making her eat it. This doesn’t always work. She’ll claim she’s full and doesn’t want something – such as a turkey steak I prepared the other day – but you can bet your ass if I offered her a slice of cake she would suddenly have room.

Carer Thoughts Kath Rella
Grumpy cat would have eaten the turkey steak.

There’s a few other things she does that irk me from time to time. Yes, I get a little tetchy or grumpy about it. I know the situation is hardly ideal for her, so I’m inclined to give myself an internal bollocking for feeling narked. The point is though that there’s nothing inherently wrong with frustration. It’s perfectly natural. Don’t give yourself too hard a time, although you should seek further support if it’s becoming commonplace.

Look After Yourself

This is probably the most important thing I can say. In a way, it’s a culmination of various subjects above. Your happiness and wellbeing is as important as anything else. At times, it’s more important. That sounds selfish, I know, but working yourself into the ground doesn’t help anyone. I won’t lie, I’m not in peak physical condition. I could stand to lose a little weight, I smoked too heavily for a while (tobacco free for three years now!) and I would live off pizza if I could. My sleep pattern is a little disrupted (planning a blog post on that soon!) and for all the advice I’ve doled out here, I might not heed all of it myself.

Kath Rella Carer Thoughts
Alright, yes, Tai Qi on the beach isn’t really what I mean here… but doesn’t this guy look like Zlatan Ibrahimovic to you?!

However, you must take your me time and destress. You should try and eat well and get enough exercise. Accept when you’re ill and treat yourself. Live your life! It might not be the life you imagined, but do whatever you can to enjoy it because the happier you are, the better it is for the person you care for. When problems arise, don’t insist on doing everything yourself. Seek help, because you’ll be shocked (in a good way!) just how many wonderful people there are out there who want to help you.

4 COMMENTS

  1. I agree Kath… the plight of the unpaid Carer is often overlooked.. we are in the shadows & not considered by the NHS who think they know best on how to treat the person your caring for, the person you have known for years, the person you knew before they were sick. But do the professionals recognize the lived experience we all have caring for their patient.. NO! Are you asked for your opinion in the treatment they want to give… NO! Are you offered any help & support to continue as an unpaid Carer… NO!

    Well I am fighting back.. I have gathered 80 stalls, all offering free support for unpaid Carers & taking the information all over the City & County of Nottingham… have done this for the last 4 years & will continue to do it while I have breath in my body… its called the Carers Road Show…

    Your post is an inspiration to others on how to get through all that faces you …
    and your right there are loads of people out there willing to help… well done Kath..

    • Hi Trevor.

      Thank you so much for taking the time to post a comment. It sounds like you have had a lot of difficult experiences yourself.

      I am very impressed by the work you’re doing with your Carers Road Show. Information about caring can be so hard to come by, particularly when you’re new to it. This sounds like a really good, positive initiative. I’d be happy to do my little bit to promote your efforts on social media, if you wish?

      Thank you for your kind words. They are very much appreciated.

      Kath

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