Do you care?

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I wandered through into the kitchen, snuggled in my dressing gown, to boil my own kettle for my second coffee of the day… an unaccustomed luxury. I am usually at work by that time, dragged reluctantly from sleep by the alarm clock, woken by the cold pre-dawn walk with the dog and, seven days a week, drink my second cup of coffee perched on the end of my son’s bed. Last night, I had dressed and driven back to work when I should have been on my way to bed. Tomorrow, I will be at work before dawn. These things happen in my job. While my son, quite rightly, objects to me calling him ‘work’, he is, after all, both my job and my employer (and it is better than some of the things I have called him…).

It has been a while since I wrote about being a carer… and these days, to the unreasonable guilt felt because you are talking about it in the first place, is added the knowledge that you are one of the lucky ones who gets paid for what you do. And after all, you are no longer officially called a carer. You rejoice in the title of Personal Assistant.

The number-pushers of Whitehall, realising that, by officially employing family carers, they could bring the unemployment figures and benefits budgets down. By calling us ‘personal assistants’ instead of carers, the official number of carers in the UK drops. Just for good measure, the move also covers the horrific fact that un-‘employed’ carers save the country more than the annual cost of the NHS. Little thought appears to have been given to the altered dynamics of families where one member can employ, command and potentially fire other family members, nor to the effects of dealing daily with employers who, by the nature of their conditions, may be subject to irrationality, mood swings and behavioural problems which could create situations for which any other employer would be hauled before a tribunal.

Being officially employed is supposed to protect both employer and employee. In the case of family carers, this is a fallacy, and  I know of not one carer who will clock off at the correct time… the day only ends when the needs are met and the work done. Many jobs need to be done that are not covered by employment contracts and, according to the social worker to whom I mentioned this, they are simply expected to be done, because we are family. It is for this reason that carers are not paid for half the things or hours they do, and why carers suffer a number of health problems of their own, directly related to the nature of their employment.

By employing family members in such a fashion, many end up working twice the hours for which they are actually paid… which is defined by a minute-by-minute assessment of what the powers that be will pay for. This takes no account of the time waiting around between approved jobs or the many other things that must be done and which are not covered. The ‘employed’ status effectively excludes carers from other help for which they might have been eligible, and the hours worked, being all-encompassing as well as irregular, mean that carers are not reliably available to supplement a meagre income with a second job, even if there was the energy. Any lie outside caring comes out of leisure or normal sleep requirements.

And we… the employed personal assistants/family carers… are the lucky ones. There are literally millions of unpaid family carers who fall through the net, getting little or no help, whilst having to hold down a job, subsist on benefits or pensions, or go to school.

Many people do not even realise they are carers. If someone in your family. A friend or a neighbour, is too elderly, frail or ill to cope and need help, you just do it. You can be a carer if you are far away and live on the end of a phone, attempting to help from a distance. You are a carer if your partner needs help… even if you are both in need, but only one of you can manage to do what needs to be done.

Perhaps most concerning is the number of children who care for parents. They miss out on so much that childhood and teenagerhood should offer. It is not the parents’ fault, but that of a system that fails to notice or to offer the support they need. While the children may feel a sense of purpose and learn responsibility early on, they may be unable to give time energy and attention to achieving their full potential academically and may miss out on many of the social skills that are acquired by simply being young and with friends.

My own caring role started early. I learned to be a big sister as my mother went through what I now imagine was post-natal depression. We moved in with my great grandmother when her husband died, and by the age of thirteen I knew how to wash and dress her, and was the nominated person for enemas as my mother was stressed to the max. I never thought of myself as a carer… had never registered the term… until in later years, I met the paperwork that goes with being a carer, when I looked after my late partner for a decade.

It was at that time I started to become aware of how many carers slip through the net of official and charitable help and how many people could be helped as they take on roles for which they are untrained and unsupported. Officially and unofficially, I have been a carer for half my life, yet it is only a few weeks ago that I was informed that I could do manual handling training and a first aid course if I wished. I have already done both through mainstream employers, but I am pretty sure it would have helped thirty years ago…

Being a carer can be wonderful, rewarding, joyful, enriching and the experience can teach you a great deal. It can also be exhausting, debilitating, stressful and a danger to your own health and wellbeing. In very many cases, it also leads to prolonged financial hardship. Carers need all the help they can get, and few know where to look or dare ask; after all, we are supposed to look after our loved ones… asking for help is letting them down somehow… or that is what goes through your mind. It is a betrayal to say you cannot cope, a betrayal to say you need a break.

If you are a carer, let your doctor know…  there may be support there, and in the UK at least, there are things to which carers may have access. Let your employer know if you are an unpaid carer… you have a right to ask for a bit of flexibility in your working hours. Take a look at carer’s charities online. There will be one that operates near you and while they may offer only a place to talk, there can be practical help available too. In the UK, check Turn2Us to see if there is any financial help for which you may qualify. You may be able to get a break through one of the charities. Learn to use the internet to find what you need… a little wrangling with the search bar will almost always offer some advice or solution. If you don’t have a computer of your own, try Computers for Carers.

If you are not a carer, the chances are that you will be at some point in your life. One in five people are likely to become carers… and if not, you may need a carer yourself. Find out what it means to look after someone every day, or to need that level of help.

If you know a carer, and you probably do, even if they do not call themselves by that name, spare them a thought. Loneliness and isolation are two of the most common problems faced by carers. Pick up the phone… make them a coffee… ask if there is anything they need… or just be there and listen if they need to talk, especially if there is no-one in the family they can talk to, and that is often the case, as people can be too close to a situation.  It matters and can make more of a difference than you might think.

About Sue Vincent

Sue Vincent is a Yorkshire-born writer and one of the Directors of The Silent Eye, a modern Mystery School. She has written a number of books, both alone and with Stuart France, exploring ancient myths, the mysterious landscape of Albion and the inner journey of the soul. She is owned by a small dog who also blogs. Follow her at scvincent.com and on Twitter @SCVincent Find her books on Goodreads and follow her on Amazon worldwide to find out about new releases and offers. Email: findme@scvincent.com
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100 Responses to Do you care?

  1. Ritu says:

    Thank you for bringing this to light. Something many of us don’t think about much.
    And I can only guess that the money you get paid in reality is a pittance compared to what you actually do, but still,your saving the govt and NHS money…

    Liked by 3 people

  2. My hubby is my carer. I do what I can for myself (partially to save him the job, and partially because I like to do as much for myself as I can). But there are tasks I simply can’t do, and times when the time of day or night it is means nothing. I’ve always thought he didn’t get the pay or support he deserves.

    Liked by 5 people

  3. barbtaub says:

    Reblogged this on Barb Taub and commented:
    If you know a Carer… (And, I promise, you DO!)

    Liked by 2 people

  4. Pingback: Do you care? – by Sue Vincent… | Chris The Story Reading Ape's Blog

  5. Certainly food for thought. Here is Spain it’s only now with the economic diaspora that some elderly and infirm people need care and new systems are being put in place. A lot rely on charities to pay for carers.

    Liked by 2 people

    • franklparker says:

      Lucinda, I take that to mean that in the past it was taken for granted that (grown up) children would take responsibility for the care of their parents/grandparents. At least in Sue’s case, from my understanding of what she has said, such behaviour is recognised with a payment.

      Liked by 1 person

      • Yes Frank in the past here in Spain the extended family cared for the elderly etc. all of the hospitals I’ve been in have visitor beds in each room and family are expected to sleep in and do a lot of the patient care. The nurses do the nursing stuff, the family do the rest eg washing of patient etc. I too understood that Sue referred to family care as qualifying for payment but here I’m pretty sure that is not the case – unless all the family were working and could not afford to pay a professional carer. There is the Spanish NHS but not the after care benefits such as in UK. We have self-help groups, I’m in one where we raise money, help out with shopping, visit in and to and from hospitals, and pay for home nursing or for careers for those who can’t afford etc. British people here are amazed at all this but if the services aren’t there then you make a plan. I’m still in 7th heaven under a free medical service and don’t have to save up to go to the doctor.

        Liked by 1 person

      • Sue Vincent says:

        I think that used to be the case everywhere, Frank, but the loss of close-knit extended families has impacted on that.
        Some are now employed by the person they care for, at the State’s expense, unless they live together. Others may get some help via social security benefits. Many are either not eligible for help or do not know they are entitled to it and fall through the holes of the net.

        Liked by 1 person

    • Sue Vincent says:

      The government here, to be fair tothem, have done a lot to help over the years… though some of the measures still leave a lot to be desired. It is not all that long ago that family members were simply looked after, because that is what families did.

      Liked by 1 person

  6. Sue, I reblogged this post on Pen and Paper. Great writing!

    Like

  7. Patty says:

    Reblogged this on Campbells World.

    Liked by 1 person

  8. bobcabkings says:

    Been there, done that – My father had dementia. Sometimes we just do what must be done in the name of love and duty, and count the cost later if at all.

    Liked by 1 person

  9. franklparker says:

    I was not aware of this new way of ‘rewarding’ carers. I’m curious about how the person being cared for, becoming the ’employer’ of the carer, secures the means to pay for the carer’s ‘services’. Presumably the state reimburses him/her. How is this advantageous as compared to the previous system in which the state paid the carer a ‘carer’s allowance’?

    Like

    • Sue Vincent says:

      The person needing care is assessed, minute by minute, for their needs, and a care-budget is agreed. This is funded by the state, and via contributions from the person needing care… but the state is not the employer; that is the role of the person needing care, who must also have employers liability insurance and handle the payroll. It is a complicated system and causes a good deal of stress and worry to the person in need of care.

      If the carer lives with the person for whom they care, that does not apply, but they may be entitled to help via benefits, if the assessment agress that they care for sufficient hours every week.

      The most ludicrous situation arose when my son moved into his own home. In order to get any help when he lived with me, I had to PROVE that I cared for him for over 45 hours every week. As soon as he moved out… still needing the same amount of care, plus the running of his home and all that goes with it, the assessment decided he only needed 27 hours of care a week…and that is all they pay for. I work seven days a week, and up to sixty hours. But, I’m his mother… what else would I do?

      Liked by 1 person

  10. For some reason I’m not able to ‘like’ this – but I do. Very much so. I’ve been a carer for my son and, at a distance, for my mother, and it’s the lack of sleep that’s as wearing as the physical and emotional challenges. Thanks for bringing a really common issue to the surface and perhaps creating more of an awareness amongst conventional employers.

    Liked by 1 person

  11. scifihammy says:

    Your post is quite an eye-opener. I did not realise all this about being a carer. It must be incredibly hard at times and I am sure support would be so welcome, or, as you say, even someone to talk to.

    Like

  12. So thoughtful and supportive, Sue. I think caring used to be “easier” when humans lived more communally with extended family nearby and often in the same home. That interdependence has lessened in our modern cultures, and when it comes to supporting others through illness, parenting, and old age, the isolation is a loss for all. Your suggestion to pay attention, acknowledge, and lend a hand to carers is something we all can do. ❤

    Like

  13. Reblogged this on Judith Barrow and commented:
    Something we all need to care about.

    Liked by 1 person

  14. Having had two aunts with dementia live with us for some years (for twelve of those we were four generations under one roof – and it taught our children patience and understanding) I can empathise with so much of this, Sue. What never occurred to me at the time was that, while I cared for my two elderly relatives (unpaid), my husband was, in the background, caring for me. Thank you for this post. .

    Liked by 1 person

    • Sue Vincent says:

      We managed three generations…and I know it is not always easy. But we didn’t even think of it then as being ‘carers’…and there was little or no support, apart from within the family. But yes, that matters too… hugely. xx

      Liked by 1 person

  15. rivrvlogr says:

    Kudos to you, Sue, for all you do.

    Like

  16. RhScribbles says:

    Thank you for sharing your story. It helped me realize that my husband and I are joint carers for our 98 year old aunt who lives with us. She doesn’t require much caring except as a chauffeur. She is amazing and we are lucky.

    Keep caring for yourself!! ❤️

    Like

  17. A very interesting read, Sue. In South Africa, there are thousands of children whose parents have died of aids and other illnesses who care for their younger siblings. They get no governmental help at all. There are 19 million government grants paid in SA from the taxes earned from a dwindling 6 million people tax base.

    Liked by 1 person

    • Sue Vincent says:

      I know… and that situation is appalling. Especially when there are simply not the funds available to address the need. Children have a hard enough time growing up, without having to be providers and parents too.

      Liked by 2 people

    • Those are horrifying stats. We made a film once on the ‘rent a child’ where people went in to register for benefits – noticed by officials as the children from ‘different’ families all had the same clothes. Also met older siblings caring for their younger siblings, so brave and so dedicated it was hard not to cry.

      Liked by 2 people

  18. Great information Sue. Thank God for all of the carers.

    Like

  19. Mary Smith says:

    Very well said, Sue.

    Like

  20. Another excellent post Sue. My sister was my mother’s carer, and we would gladly have taken over the role had Mum wanted to come and live with us. However, she was comfortable and stable where she was, had friends and family nearby, a good GP and it would have been wrong for us to push the point and take her away from that familiarity.
    There are people in the blogging community who are carers and finding it difficult. I feel for them and offer my support, even if it is only the written word. Our government have no concerns for the additional stress and strain their policies inflict. Just numbers and finding a way to cut the social bill.

    Like

    • Sue Vincent says:

      Thanks, Di. I have no doubt you were there as support too.
      I know a good many who are carers in this corner of the community…many would not even think of themselves as being carers… they just do what they do for love and in response to need. The system is not set up to catch them when they too are in need… and everything that might help is a fight for which any caregivers simply do not have the energy at the end of the day.

      Liked by 2 people

  21. Don’t you sometimes yearn for your own carer? I kdnow I’m actually not very good at being cared for. it’s unaccustomed, but sometimes, it’s not a choice. I actually have to learn to be more gracious when I need care. I tend to get snippy because I don’t know how to be on the other side.

    Like

  22. Eliza Waters says:

    Awareness and support for carers is growing here, but not many are paid. Our health system is pretty messed up and is a political nightmare. I admire the work you do, the core of it is Love.

    Like

  23. Suzanne says:

    Sounds like the UK system is as broken as the Australian one. Both my daughters are carers for children with special needs. One gets a carer’s allowance from the government, the other one does not. Granted the carer’s allowance is paid to my daughter for looking after her extremely autistic son. My other daughter cares for a young child with severe speech disabilities, anxiety and other, mostly undiagnosed, conditions. The worst part about this situation is that the government sees her son’s speech difficulties as being something that only affects small children. All his therapies will stop when he turns 7.
    The welfare system is unjust. I hope you find the support you need.

    Like

  24. willowdot21 says:

    Thank you Sue for this wonderful insight. I agree that most carers have to struggle and face mental and physical hardship. In this day and age there should be more help available.
    My husband cared for me after I broke my back , both times, the first time we had children at home and he was working. I can testify to how difficult the forms for help are having had to wrestle with them . Luckily I am better than I was and we don’t need help and I don’t need a carer… I am lucky.
    Mum sister is coping with a husband with dementia and I can only help from a distance but I do my best.
    This is a great article Sue. Well done you , you are a caring and helpful person. 💜

    Like

  25. willowdot21 says:

    Reblogged this on willowdot21 and commented:
    An eye opener of a post from Sue Vincent

    Liked by 1 person

  26. Reblogged this on Smorgasbord Blog Magazine and commented:
    Most of us at some point in our lives will care for someone in our family who requires additional help. When I was caring for my mother I did not claim carer’s allowance as it would have affected any money that I earned as a nutritional therapist and when my husband joined me for the last 18 months to help out, they wanted to know what he earned too.. All for £54 a week.. for a 24/7 job.. As Sue shares, the government are now classifying the role as employment and if you read the post you will see that this is not altruism but part of a number fudging exercise. We do it because of love and loyalty…and for the dignity of those we love.. not for financial reward… however… we need to be financially secure to be able to do the job. Please head over and read if you are a carer or for future guidance.. thanks Sally

    Liked by 1 person

  27. Excellent advice. Having both been the carer and the one cared for, I endorse your advice.

    Like

  28. Jennie says:

    This is wonderful, Sue. I can only imagine the number of carers that need the help and advice you have given. I think this situation will continue to grow as the population of baby boomers (do you use that term?) grow. On your personal note, being a carer at such a young age is both sad and wonderful. You are a rock with a heart.

    Like

  29. dgkaye says:

    I’ve been on both sides of the spectrum Sue, and I care for my aging husband. Your post was heartfelt and succinct. And great tips to seek out a little help and understanding for the caregiver. Often we don’t think of ourselves as caregivers so we just soldier on without asking anyone else for a helping hand. Everyone can use a helping hand at one time or another. ❤ xxx

    Like

  30. Deborah Jay says:

    I’ve been caring for both my parents for several years now (well, dad died last year, so now down to one), but because I earn too much from my own job (I’m self employed) I’m not entitled to any financial recompense. Frankly, that doesn’t bother me, as I always expected to do this – my family are, for the most part, long lived, dad was 98 when he died, mum is currently 98 going on 99.
    What DID surprise me was how concerned the doctor was, when I had to call her out in the middle of the night, about MY health, and the fact I had no respite – something that never even occurred to me.
    Lovely to know that some doctors are still really caring people, even though they are rushed off their feet – I’ve met so many that have just given up under the strain and are only interested in doing the minimum required.

    Like

  31. Pingback: Do you care? — Sue Vincent’s Daily Echo – Living My Life In 321

  32. Rae Longest says:

    Very helpful advice. Thanks!

    Like

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