The mind plays funny tricks on you at times.

Well, my mind has a habit of wandering off into places it has no business of visiting.

That is probably why I’ve been wrestling with something that my head was telling me was a serious dilemma for the last couple of months. And it also explains Rachel’s rather non-plussed reaction when I mentioned it to her the other day.

The dilemma goes something like this: “Now that I’m doing a full-time, office-based job I can’t be a classed as a carer any longer. Can I?”

My logic was simple (at least it was in my own head). Surely as I now have a proper day job, I’m no longer doing the carer role I fulfilled when I was self-employed and working 99% of the time at home.

Right? Wrong, explained my ever-patient but frequently perplexed wife.

“You are still a full-time carer,” she pointed out. “I still rely on you to do all the things you did before. The only difference now is that you go out to work all day as well as doing all the other stuff.”

End of discussion. Actually, not quite.

It prompted Rachel to express the worry she’s had for some time now – that I’m stretching myself too thinly and trying to do too much.

As well as doing my eight(ish) hours a day in the office, I’m sorting Rachel’s breakfast and lunch out before I leave in the morning (as well as feeding and fussing the narky cat), I’m doing the shopping, the cooking, the washing, the cleaning, the ironing and whatever else needs doing. 

There is always “stuff” to sort. Like skimming pebbles on the beach, no matter how many you throw into the sea there will be always be plenty of others left to pick up.

20080800-seaham

(by rachelcreative)

But that doesn’t mean to say you have to do everything, or clear the beach of pebbles every day. I’m still avoiding the gardening, for example.

Also, the plan was to carry on doing some freelance work too but that has slipped away somewhat as there really aren’t enough hours in the day.

Yet it still feels odd, at times, to classify my role as carer. The things I do to help are things I do without question and would continue to offer to do if Rachel was in better health.

Yes, I have to do these things because of the severe limitations placed on Rachel by her illness. But I want to do these things because I would much prefer Rachel to have the space and energy to concentrate on the more important things in life – herself, her creativity, us.

This difference between have and want is something I’ve felt awkward about since Rachel first became ill and why I’ve always struggled to call myself a “carer”. Maybe securing a full-time job has just provided me with another excuse not to use the c-word in reference to what I do?

Whether that is true or not, we once again proved how good it is to talk.

There was me worrying that I’d abdicated a whole chunk of responsibility and no longer pulled my weight as carer. And there’s Rachel, worrying that I’m about to buckle under the strain of the twin role of full-time job and full-time carer.

The worry probably hasn’t gone away completely, but the awareness and understanding has undoubtedly increased.

I’m resolved, therefore, to do a bit more to highlight some of this “secret” work I do and which so many others in this country do without much in the way of recognition or support.

It is Carers’ Week in June and I’m hoping to do what I can to raise awareness of the UK’s truly “secret service”.

I’ve written before about how lucky I feel at being able to juggle a career and caring – something denied to so many in a similar position. We all have a different story to tell, different experiences to share, different priorities in life.

The efforts of campaigners like Carers UK on a wide range of issues – such as a long overdue shake-up of the benefits system to recognise the role of carers – are important to us all, even those of us fortunate enough to still juggle career and caring.

The last two or three years have shown just how unpredictable life can be and how difficult that can be to deal with. I used to pride myself on not planning too far in advance and was quite zealous in my desire to take each day as it comes.

There are occasions now when I would dearly love to be able to say: “In 6 months time we’re going to…” and know that there is a very strong possibility it will happen.

Perhaps the biggest lesson of the last three years is that there are very few certainties. Therefore, perhaps we should celebrate those that we do know.

So I’m a PR & Marketing Manager, a “resting” freelance journalist and consultant, an occasional blogger and I’m a full-time carer.

I still care a lot. And I have no intention of buckling.

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10 responses »

  1. theaardvark says:

    I had to fulfil the role you currently play for 6 months when my first wife’s brain tumour caused paralysis down one side. A combination of NHS, BUPA & MacMillan provided nursing care whilst I was at work and overnight one night a week.

    Although I wasn’t caring for her 24 hours per day or purely by myself, I (and, I think, she) still classed myself as her carer.

    Without wanting to sound callous, you need to have a part of your life that isn’t about “caring” to avoid, for want of a better expression, burn out. So that you can continue to “care” on a long term basis.

  2. Paul Groves says:

    theaardvark: I agree completely. I think that is where writing plays a big role for me – and indeed Rachel’s creativity is an enormous and positive part of her life.

    She is not defined by her illness, I’m not defined by my caring role. There is so much more to us both.

  3. ashysheela says:

    no-one “intends” to buckle… I think it just happens if you don’t watch out for the warning signs and make space for yourself as well. I hope you manage to strike a good balance for the majority of the time, as no-one is perfect and it is a lot to handle. Of course you are still a carer!!!

  4. Paul Groves says:

    Hi Ashy: It was a bit of a “doh!” moment when I mentioned it to MsCreative. As soon as I said it I realised it sounded ridiulous.

    I think part of the problem is that I had only just got used to working from home and caring when I was offered this job and had to go through the learning process again.

    But that also means we broke one routine and found new and different ways of doing stuff (apart from the gardening), which has to be good.

  5. Philip John says:

    I’ll bet it’s that self-less attitude towards your role as a carer that makes you a good carer.

  6. Rosemary says:

    Morning Paul,

    Excellent piece of writing once again.

    “”And I have no intention of buckling””

    Many partners/carers think like that but sometimes this can creep up on you without you realising. The beauty of the love you and Rachel share, means you are able to talk things over openly so between you ,hopefully you will be able to head this off from ever happening in the future.

    Not everyone is so lucky and the strain does become too much.Carers stretch themselves time and time again. Feelings of guilt can arise,of letting down the person they love/care for.

    Although situations differ so much between carers, I would say the majority do so out of Love and therein lies one of the main problems in that many do not ‘recognise’ themselves as carers and they can struggle on for years not aware of the help available.

    “”So I’m a PR & Marketing Manager, a “resting” freelance journalist and consultant, an occasional blogger and I’m a full-time carer.””

    You missed out the most important part you play….in that you are a loving partner.

    There are so many changes ahead for carers and not all of the proposals being bandied about are suitable.
    The Welfare Reform Bill has seen many organisations/groups up in arms and just yesterday PCS,other unions, anti-poverty campaigners and political organisations held a lobby at Parliament.
    Carer Watch were invited to attend but unfortunately our caring roles prevented one of us going.We prepared a statement to be read out and I hope you dont mind me copying it here Paul….

    ***********************************************

    Thank you for the invitation to speak at this important & timely event.

    We’re very sorry a Carer Watch representative could not attend today but, as you will appreciate, as full-time carers we often find it difficult to get out to meetings.

    Like you we have grave concerns about the proposals in the welfare reform bill & their likely impact on vulnerable members of society including many of those we care for.

    At the launch of the white paper, James Purnell said he wanted more debate about how carers might fit into a single benefit for all working age people (SWAB).

    We do not believe carers should be included in this.

    To qualify for carers allowance – the lowest earnings replacement benefit at just £50.55 a week – carers have to provide a minimum of 35 hours a week care.

    This care would otherwise have to be provided by state-funded social care staff at a considerably higher cost to the taxpayer.

    Without carers our NHS & social care system would collapse.

    We believe carers’ value to society should be recognised by keeping carer benefits separate.

    A recent study by Carers UK shows that three quarters of carers struggle to pay essential bills & more than half are in debt.

    The government should act now to fully recognise the work carers do in supporting the whole of society & protect carers from becoming impoverished.

    We are also very concerned about proposals to introduce employment & support allowance.

    We look after long-term & enduringly sick people. The idea that their benefit is now to be conditional on them satisfying private contractors that they’re jumping through the right jobseeking hoops is cruel & threatening.

    We believe sick people should be treated with dignity & understanding & not threatened.

    All the help to get back to work is welcome but it is wrong to impose ‘conditionality’ on these sick people who have so many other stresses & problems.

    We are particularly concerned for those suffering from mental illness where threat & extra stress is actually unsafe.

    For these & other reasons we are more than happy to sign up to this campaign & we are keen to help as much as we can.

    ********************************************************

    You mentioned Carers UK Paul.Their website and forum are second to none. They also have CarersLine where carers can ring for advice covering all issues relating to caring roles from benefit check ups,work related advice,carer assessments etc.

    Sorry for the length of this comment Paul, you know how geordies waffle on and on and on……… :P

    Best wishes to you both

  7. Nick Scott Donald says:

    Your role remains the same but the geography is different, that’s all.
    In the absence of any real wisdom I’ll just say that it’s very easy to put a lot on your plate, but darn difficult to get the balance right once it’s all on there.

    But then no one said caring was easy. Unfortunately.

  8. Paul Groves says:

    Philip: Many thanks for stopping by…and the compliment. I’ve never been good at accepting compliments (mainly because they are so infrequent!), so I’ll now shuffle away all embarrassed.

    Rosemary: You waffle away! Thanks (again) for the extra information. You’re right, I did make a schoolboy error and left out the most important description – husband and friend.

    Not being able to attend the Parliamentry lobby due to caring commitments possibly says more than I managed in a few hundred words.

  9. Paul Groves says:

    Nick: Real wisdom is rarely absent whenever you are around. Writing for “fun” helps. Thanks.

  10. [...] Day and I keep coming back to the same conclusion – I’ve pretty much said all I wanted to say, for now at [...]

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