Facts and figures, don’t you just love ’em?

In this fast-paced world when the soundbite is everything, here’s a few little numbers to consider:

  • There are almost six million carers in the UK.
  • One in eight adults in the UK is a carer.
  • 3. 3 million people juggle work with caring responsibilities for a disabled, ill or frail relative or friend.
  • The main carers’ benefit – Carers Allowance – is £53.10 for a minimum of 35 hours, equivalent to £1.52 per hour.
  • People providing high levels of care are twice as likely to be permanently sick or disabled.
  • Every year 2 million people take on new caring responsibilities.
  • 1.25 million people care for more than 50 hours a week.
  • 58% of carers are women, 42% are men.
  • 1.5 million carers are over the age of 60.
  • Carers’ unpaid contribution is £87 billion each year, yet the decision to care can mean a commitment to future poverty. Many give up an income, future employment prospects and pension rights to become a carer.

I still struggle to class myself as Rachel’s carer. But that is what I have been for the last three years.

It has led to huge changes in our life together and yet some thing never change – I still can’t wait to walk in the front door and see her smile.

me and her

The fact I’ve been able to juggle a career and my caring role throughout this period makes me very lucky – something I am acutely aware of and a “luxury” I cherish.

Others are not so fortunate.

It is National Carers Week and by happy coincidence it is just over a month before I embark on the C2C Challenge – it is almost like I planned this or something!

As some of you already know – because you have so generously made a pledge of support – I am looking to raise awareness of the role of carers in the UK and of ME/CFS, the illness that forced Rachel to give up work and that has such a significant impact on her life and our life.

I am hoping people will donate 10 minutes of their time, rather than £10and learn more about caring and ME/CFS.

I’m a firm believer that there is strength in numbers and the more people who are aware of issues and willing to lend their voice and their support to a campaign, the more likely it is to be heard.

Closer to the challenge itself – July 11 and 12 – I am planning to outline some ways in which people can use their donated time.

But, for now, clicking on the link above for National Carers Week is an easy, quick win.

Have a read of some of the facts and figures and other sections if you have the time.

I better get back to the day job.

Advertisements

7 responses »

  1. Rosemary says:

    Good luck with the training Paul.Hope you are both well.

  2. Ursula says:

    Paul, considering that you are a journalist who, by nature of the job, is inquisitive I hope you won’t mind my raising a few questions.

    I am a layman when it comes to how the terms “carer” and “caring” are used., I am slightly baffled, having done a little research, what either of the above constitutes. After all, we all “care” for people (most certainly emotionally; in turn, as fate falls, leading to having to do so physically when that near fatal accident, ME, MS, old age, whatever, arises); we “care” for our children (which involves a full-on engagement other than wiping their little noses and bottoms); it seems to me, the unitiated, that the concept of ‘caring’ you are referring to is that of one looking after an indisposed who you have bonds with which cannot be broken. It must be tough and I’d hate to be in that position considering all the restraints it imposes on one’s own life in many different ways.

    With the obliteration of the large “extended” family (not least geographically) the burden on the individual is far greater than it used to be. We now expect, make demands on, the state to provide. Yet, and I know this cannot be of any comfort to anybody in the position of taking on that extra burden which restricts the “carer’s” own enjoyment of life, in the “olden” days it went without saying that you would look after your “own” as and when the need arose. Nobody questioned it. Nobody would look for sympathy or respite. The welfare state has changed all that.

    It is not entirely clear to me what today’s carer expects (from whom?) to lighten his load.

    What am I trying to get across, Paul, is that communication between those who have no choice but “to care” and those who don’t needs to be improved dramatically. And, as if you carers haven’t got enough on your plates already, I am afraid it’s your job to educate the rest of us. Tough, I am sure.

    As promised I’ll do what I can to support your cause.

    U

  3. Rosemary says:

    Hi Ursula,

    I hope Paul does not mind me replying to you ahead of his own response ( unless he replies as I am typing this 😛 ).

    One of the main things you will find among carers is that no two sets of circumstances are the same.I cant speak for others but will give you a little insight as to the caring roles I had/have.

    I started in my teens helping mam with my disabled brother.She had had contact with german measles whilst pregnant.Brother is profoundly deaf,high autism,temporal lobe epilepsy,partially sighted and severe behaviour problems.He is over 40 now and at times has been violent.Helping out was always as a daughter/sister,never looked on myself as a carer then.I was still able to have my own life.I worked,had family and supported my parents each day.There are not enough words to describe the difficulties they faced over the years,how each step was a fight to get services.They did though.

    Things changed when mam and dad became ill.Dad had several heart attacks which resulted in him eventually having 6 by passes on his heart.Mam had always had poor health but things escalated and many things all came at once.

    Arthritis ( needed hospital when bouts really bad….operations to flush out infection )….pernicious anaemia…angina…osteoporosis…liver failure resulted in transplant 10 yrs before her death…….kidney failure,had fistula fitted but it cut off blood stream to her hand….received emergency dialysis for 1st time the day before she died……diabetic ( insulin) ….weekly injections for kidneys too…IBS but last 2 yrs had been double incontinent….partially sighted due to diabetes…..last 2 years was blood transfusion dependent..needed “top ups ” every 3-4 weeks….hypertension…amputations….and many other operations over the years as the need arose 4 other probs.

    As mams health deterioated,hospital appts could be 3/4 times a week to different local hospitals,so my hours working decreased.I have to say that even 10 yrs ago,ahead of the flexibility rules for carers came in,I had a great employer who bent over backwards to assist in any way possible.It was easier as they were a big organisation but even so,even to this day I am grateful to them for the help they gave.I did give them 110% back so in a way they did not lose.

    As you can imagine Ursula, the point came where I was shattered,a decision had to be made and so I gave up work.At this time we received no help,neither practically or financially .

    I had to learn to give injections for diabetes and kidneys,monitor sugar levels,to recognise various signs that mam needed medical attention immediately,administer over 50 pills a day,ensure anti rejection pills for her transplant were taken, and again keep a note of mams daily health in case any of those meds needed adjusting.

    The hardest part though was the personal care.In time it became part of my daily life but at 1st it was heart breaking but the person who helped me the most was in fact my mam.Her strength through everything was unbelievable.She had never complained until a week before her death and that was even then still thinking of others.They had removed 2 fingers but it had not worked so her hand was to be next.Her 1st thought was how she would communicate with my brother as we use sign language.Mam suffered and her death was horrendous but I was with her at the end so take comfort from that.

    We have a great package for my brother now and he is in residential care during the week with weekends at home with my dad and me helping.His life is full of activities.Even that was a battle to get though.

    Along side this I am a wife/mother of 2 girls,both of them adults now.I have been fortunate to have my hubbys’ love and support with me every step of the way and he still does regarding my brother.

    All the care I provided above,I did it as I wanted to do it.However,should Love be a commodity that this govt can take for granted.Over many many years,due to restrictions I was not able to claim Carers Allowance.I did receive Direct payments 12 months prior to mams death however.

    All my own dreams,those of my hubbys had to be laid aside.You become drained,both emotionally and physically.You see tears as a sign of weakness so lock yourself in a bathroom with taps running so noone can hear you.

    And yet,at the same time you gain a different kind of strength,an inner strength.

    I actually class myself as one of the lucky ones Ursula. You only have to read some of the stories on Carers UK online forum to see how carers are struggling.Finances are a major factor but so is lack of services,not fitting eligibilty criteria,day centres closing,lack of respite.
    Govt allocated money to PCTs to provide breaks for carers.It was not ring fenced and we are finding it is not being used for the intention it was given.

    People are living longer,those with illnesses/disabilities are living longer too, and as time goes by more and more stress is going to be placed on family carers.We have pensioners in their 60s’ caring for elderly parents in their 90s’,who also have disabled adult chiildren still at home.

    I did not mean to waffle on as long Ursula but I hope for the few minutes you have read this,that it brings you into our world and gives you more understanding of what many carers face daily.

    This week is Carers Week.The newspapers are full of stories,most MPs are making statements about how they value carers,respect them but what about next week and the week after………………and next year………………….and so on.

    Action from the govt is needed now to help carers but certainly not in the form of some of the proposals of the Welfare reform Bill going through House of Lords right now.That is another battle for us though and a one we will continue with.

    Paul, I apologise for hogging your blog this morning but you know us women,once we start yapping we never stop.I hope Rachel will back me up here :P.

    .

  4. Paul Groves says:

    Thanks Rosemary 🙂

    Sorry Ursula: I wasn’t ignoring you, I promise. Its been a busy week.

  5. Ursula says:

    Rosemary,

    Don’t worry about Paul. He has the patience of a saint and the generosity to throw us a ball and let us amuse ourselves on the playground of his blog.

    Sorry, I didn’t answer your reply earlier, and thank you for taking the time to address my questions and somewhat enlighten me. It is humbling to read about your plight. Reflecting on what you say – yes, sure, there are definitely some people in my life I would put my own (life) on hold for – most certainly my son, Felix.

    On the other hand, and I don’t mean it as flippant as it sounds – in fact it probably sounds awful – I have told Felix (he is nearly 18) to “accidentally” drop a brick on my head should he ever find himself lumbered with a demented mother. He didn’t find my comment funny – and maybe it wasn’t.

    I hope, Rosemary, that you will have the chance and time to look after yourself, your own interests, your own wellbeing instead of keeping running after others. The last sentence might sound harsh in the ears of those who need looking after, and for that I apologize. But all of us have only one life – and that life needs to be lived too! People talk about life/work balance – it strikes me that there has to be a balance between the needs of the carer and the one cared for, too.

    I love your poetic locking yourself into the bathroom with the tap running so no one can hear the sobs. We all do it, Rosemary, if for different reasons.

    I wish you enduring stamina; foremost I wish you to find the strength to look after YOUR Self.

    U

  6. Rosemary says:

    Hi Ursula,

    Thanks for your reply, and no you did not sound flippant at all.I think most of us say something similar.Mine was asking my kids to put a pillow over my head.Question is,how much of it is really in jest or hidden away in the words, is there a slight truth too.Makes you wonder eh,

    Dont worry Ursula,my life is fine.It may be taking a different direction to the one I had hoped for but it is a one wherein I am surrounded by Love.The rest we deal with as it comes.

    Sorry ok but your comment about not running after others made me chuckle.After my mam died I had been away from office work too long,had no skills to speak of, so what did I do and you dare smile…:P.
    I was employed by a family to look after their elderly parents…lol.Been doing it almost 3 yrs now and can honestly say I love my job.

    As regards wishing me stamina and strength,for that I thank you.Not so much for my personal life but for the constant battles with this Govt and no doubt the next one.For this I am not alone.The internet is a marvellous tool and brought many people in to my life that otherwise I would not have met.Through it we created Carer Watch, we also cross over many of the carer boards,I moderate on CarersUK forum too.We hope to use the internet to raise awareness of some of the most horrendous proposals in the Welfare reform Bill currently going through the Lords.

    One of the last things you said Ursula was….””there has to be a balance between the needs of the carer and the one cared for, too”” … how very true.

    However,I also believe there should be a balance within society between those that are strong and those who are weak/vulnerable/unable to fight for themselves..
    To that end I, along with others, will fight for fairness.

  7. Paul Groves says:

    Ursula/Rosemary: Thanks both, you’ve raised some interesting points.
    You both might be interested in my latest post on exactly what chronic illness and life as a carer sometimes means.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s