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 breakfast. 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.
At this time, when the staff employed to care in hospitals and care homes have been much in the news, the family carer has once again slipped through the net. Little help or advice has been offered through official channels. While I applaud my local social services for keeping in twice-weekly contact with my son to check that he was okay during the COVID crisis, it took months before I was contacted about emergency supplies of PPE… and then the body concerned managed to release the email address of every registered carer in the area…
Add to that the gratitude the country has, quite rightly, shown to the NHS and frontline workers, and the family carers, who have also worked every day throughout the crisis, may well feel invisible.
At some point, the number-pushers of Whitehall realised 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 dramatically too. 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. My son’s assessment by social services actually states that I am likely to be with him, on average, seven hours a day, seven days a week. 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 necessary time waiting around between approved jobs or the many other things that must be done and which are not covered. The ‘employed’ status, however, effectively excludes carers from other help for which they might have been eligible, while 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 life outside caring comes out of what should be leisure time 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 often 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. At ten, I learned to be a big sister as my mother went through what I now imagine was post-natal depression. We later 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 both 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 took fifty years before I was informed that I could do manual handling training and a first aid course if I wished. I had already done both through mainstream employers, but I am pretty sure it would have helped all those 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 severe and prolonged financial hardship. There is also a sense of hope-lessness. There will be no promotion, no matter how hard you work. No bonus, no change in your ‘duties’…unless the condition of the person you care for gets worse and the change that comes is grief. And, when death brings the end of a family carer’s role, they are left feeling utterly lost, for all parts of their world have changed and normality is cut from beneath their feet.
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 of love 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 yourself.
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 and they can be killers. 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.
Sue Vincent's Daily Echo 
You’re absolutely right, the care giver is often the last person people think about or ask about.
A gentle reminder to us all.
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A huge percentage of us will either become a carer or need one at some point in our lives… we need to know what that entails.
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That is so.
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I think these days, my son is OUR carer and it is a very strange feeling to have this turnaround. If he weren’t helping us, we’d probably be long since sick. And he gets NOTHING for what he does. in this country, family carers are never paid at all. They do it out of love, but it’s hard to live without a bit of money, too.
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That’s the one good thing about this particular system here… if the need is deemed great enough, and you don’t live with the person who needs the care, a carer can be employed, so that there is enough time to do what is needed. I certainly couldn’t look after Nick and hold a regular job too… there are not enough hours in the day or enough energy left by the time I’m done there.
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Funny thing, not recognising the term. My wife has been caring for her mother in some capacity or other since her father died in 2004. In the last year and a half we have shared the increased role with her brother that sees us averaging about 6 hours a day between us three. Having this family group gives us room for breaks and some mutual self counselling but it is wearisome and restrictive. We’re fortunate, that between us we can find both the time and aren’t financially disadvantaged. We should look into things like manual handling as falls are regular and difficult for linda to manage. Thank you for this, it’s food for thought.
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So many people who are caring for family members never apply the term to what they are doing…it is just what you do when you love someone.
It can be hard when there is no-one else there to listen, and those outside the situation see only that you ‘should’ take a break/say no/walk away… it isn’t that simple when your heart is part of the equation.
Your local carers’ organisation will probably offer courses in manual handling and first aid and they are worth looking into as spines can only take so much.
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Thank you so much Sue for describing your carer’s demanding life. I think it is thorough and informative. Very good.. Thanks
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So much more could be said, David, It is both the most rewarding and often the most difficult of ‘jobs’.
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Reblogged this on Chris The Story Reading Ape's Blog and commented:
An important post by Sue …
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Thank you for sharing this one, Chris xx
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My pleasure, Sue – I’m filled with admiration for you 🤗❤️🤗
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I have it easy compared to many carers, Chris. It is always the children that worry me the most. xx
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Bravo to you and all the carers in the world! I have so much respect for all you do. I´m glad there is a system in which you get paid for what you do, although I´m sure you put in many more hours than you are paid for. An enlightening post. Thanks.
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The system permits those who would need to earns living elsewhere to survive and still ‘be there’. It is a big step in the right direction… but it does have its drawbacks.
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As Anita and I get older, I often wonder who will need a full time carer first… I just hope it isn’t me!
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The way my back is misbehaving these days, I’m not holding out a lot of hope myself 😉
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I’ve said it before, Sue. You work far too hard!
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You do what you have to ( and you have no room to talk 😉 ) x
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Not so much these days, Sue, but the spirit is still willing even if these old bones are complaining!
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Mine complain a lot too these days …
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To the best of my knowledge there is no support, financial or otherwise, for family carers in Canada. For that matter there is barely financial support for “professional” carers — which you may have read about due the scandalous number of COVID deaths in nursing homes and long term care facilities in Canada. I’ve had my own experience with my mom and to say the system needs an overhaul is an understatement of gigantic proportions.
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It hasn’t been much better here, Fransi…and although we have taken a few steps in a better direction over recent years, there is a huge amount still needs to be done.
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In so many areas 😪 anyway, take care of yourself Sue. You can’t help your son if you get sick.
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I think he has realised that, Fransi… he bought me ‘senior’ vitamins to help keep me well 😉
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Vitamins are good but you also need some rest.
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That would be nice too.
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Reblogged this on The Magical World of G. Michael Vasey and commented:
Superb article by Sue worthy of going viral – but it won’t…. This is a real problem and people don’t like real problems… nor the politicians.
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Reblogged this on cabbagesandkings524 and commented:
Sue Vincent on being a carer
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Let me offer my applause to you and all carers. Thank you also for making me aware of how challenging such a role can be. I wish you and all other carers the best as you soldier on.
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A lovely post Sue, and I second Jim above. Too many too often slip through the net.
Keep safe and well.
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Way too many, I’m afraid…and many don’t even realise there is a net there… insufficient though it is.
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I’ll spare you the rant about all the ways this post applies to me, and the complete and utter lack of support that is my experience. Instead I’m sending you a virtual coffee and big hug from across the pond and giving you my heartfelt thanks, both for your work and for sharing this post! Thank you, Sue!
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Coffee and hugs are always welcome, Crystal 🙂
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you’ve summed it up perfectly, i imagine. the most difficult and most rewarding
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It is both of those 🙂
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This is an excellent post, Sue.
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Thanks, Mary. It is neither an easy subject nor an easy role, as you well know.
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Reblogged this on Stuart France.
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❤ ❤
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Thanks for saying what needs to be said Sue. Being a carer, even for a short time, even with family and friends to pitch in, is an all-consuming job where your own needs vanish. It is not even considered “real” work in most cases. What is more important–moving money around or meeting the needs of those who require help? Well, we know how our political leaders would vote. (K)
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This is the kind of area where politics should not even be an issue…but sadly, it is just this type of thing that is often used as political leverage.
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You have a support network there, right? Not just us (absolutely fabulous and wonderful) bunch on this side of the computer screen, but real, boots-on-the-ground support people?
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Er… no. Not closer than two hundred miles away, anyway 😉
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😦
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Reblogged this on Mary Smith's Place.
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Going to spread your message to Canada. Great post of acknowledgement Sue. I hear you. ❤
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Thank you, Debby ❤
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❤
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Great posting, Sue!Thank you for this. We really have to care for our carers too. We need a equal pay day for them too. Michael
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That would be nice, Michael.
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This is an interesting peep into the life of a carer in the UK, Sue.
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It barely skims te surface, Robbie, as you can imagine.
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Saw this feaured on Mary’s blog. It is an important article, and i have shared it on Twitter too. When I joined the London Ambulance Service, I was staggered to see how many people cared for family members in their own homes. At that time (1979) they were rarely paid or recognised for what they did. Many of them (like you once) were small children, coping magnificently with juggling schooling and personal care for other family members.
In later life, I tried to help care for my elderly mother, but 12 hour shifts and travelling across London made it all but impossible. So I paid someone else to do it on the days when I could not.
Thanks for highlighting this ‘undercover’ issue, Sue.
Best wishes, Pete.
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Thank you, Pete. The children have always concerned me. Knowing from the sharp end what it can entail, it beggars belief that so many still slip through the net, often because they are too loyal to those they care for to speak out…or too afraid that their families will be split if they do.
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Thank you for raising awareness of care givers need for support. My mother was a care giver for my dad for seven years, and even with a lot of support, it was very, very hard on her.
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Most of our lives will be touched by the need for care at some point… yet until it happens, we don’t often think about what it entails.
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That was definitely my mother’s experience. She had a rough time adapting, but she once she did, she gave my dad a quality of life no one else could have given him in his condition.
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That is the beauty of having a family carer. I know that anyone could do the practical tasks of my son’s care…but as his memory was affected, I can unlock the missing bits of his life in a way no-one else could.
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That was the case with my dad as well. What surprised me was how much my mother had to advocate for him with the doctors. If she hadn’t, he would have been stuck in a corner in a nursing home. It made me wonder about all the people who don’t have as fierce an advocate.
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Same here. My son needs a lot of help, but would have been put into care had we not fought his corner. Considering that what he has done and achieved over the past few years broke an awful lot of health and safety ‘rules’, I wonder if he would have simply given up long gago in that situation.
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A sobering and emotive post, Sue.
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Thank you. It is something that can touch any of our lives.
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Of course. And it touches many, in one way or another.
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Indeed it does.
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I must have missed a memo, I didn’t hear we were being called Personal Assistants now. Don’t tell my partner, I’m his carer. The demands on me vary as he has MS, perforated spinal disks and polycythemia. Probably not a patch on caring for a special needs child though.
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If you and your partner live together, Jaq, you have probably not had your title changed 😉 Then again, you also probably get little or no help either. The first couple of years, after being released from hospital after the stabbing, my son lived with me… and I know how difficult that can be. These days, at least I get to go home… even though the phone is never off 😉
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Stabbing! How awful!
Yes, my partner and I live together so I’m on hand when his back gives out or he had dizzy spells, etc. He spends part time in a wheelchair and I do all the cooking. And you’re right, I get no help from anywhere. Just a little money from Carer’s Allowance. At least I count as ‘working’ for my pension, in case my writing doesn’t make me rich by the time the Tories decide I’m entitled to one. 😉
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I started out in that situation with my son (he was stabbed through the brain in a random attack several years ago, leaving him in a bad way). The pension credit is the only decent thing about Carer’s Allowance…otherwise, it is a joke.
I remember having to prove how many hours care Nick needed before I could qualify for that…and how those necessary hours were immediately halved when he moved out and we went to the Direct Payments scheme. Ludicrous.
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I’m so sorry for what happened to your son. As a mother myself, I can imagine how wrenching that must be.
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At the time, it was horrific. There really aren’t words for it. But although he will never fully regain his memory, sight or mobility, he has done extraordinary things 🙂 https://scvincent.com/2020/03/19/anything-is-possible-2/
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Family carers IMHO have the greatest challenge as it impacts them personally with the patient. All carers though are superheroes 🦸♂️🦸♀️
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I agree, and the emotional impact of becoming a career for someone you love can be devastating and that is seldom appreciated or addressed.
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❤️❤️
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