The inconvenient walking dead…  #COVID #cancer #carers

image of cartoon angry bird injured

Artwork by deviantART artist Scooterek

I am not a happy bunny, more of an angry bird, and I am going to say so, regardless of how much subtle and not-so-subtle pressure has been applied in various areas to encourage us all to be nice, obedient, quiet bunnies. Given the short space of time I apparently have left to live, my right to freedom of speech is one I feel I should exercise…and even the government encourages us to exercise, after all…

Some of you know the background to what I want to highlight and I apologise for repeating myself. For those who are not regular readers… let me fill you in on the story so far… and if I tell it in some detail, it is because unless you have been or know a carer, you are probably unaware of all that entails. And because, even here, I cannot give full voice to the morass you have to wade through when you are given a terminal diagnosis… But I do have a point or two to make.

I am a carer. It wasn’t a career choice, I ditched my career, one that had taken me higher up the ladder than I had ever expected, to be my son’s carer when he was stabbed through the brain in an unprovoked attack and left for dead in an alley.  That was in 2009. After weeks in a coma, and against all odds, he made a wonderful recovery, but was left needing  full-time care at that point. For six months, I drove between one and two hundred miles every single day to be at his bedside. When they released him from hospital, it was into my care and my bedroom… I slept on the living room floor for six months until I could manage to get a sofa-bed and spent the rest of his stay on that.

At that point, Nick was making excellent progress. He earned every bit, and we were both working eighteen hours a day… he to recover, me to both help him and look after the rest of the family too.  Because he lived with me, my income was low… if I remember rightly, I had to prove he needed a minimum of forty-five hours a week active care to get the £55 carers allowance. When Nick was finally able to get a home of his own, I was then able to be his ‘personal assistant’… a fancy name for carer… but they proved he only ‘needed’ twenty-seven hours help per week, even though at that time, I was there every day for between eight and ten hours or more. Apparently, freelancers can earn over twice the amount per hour that PAs are paid… although it took years to find that out, that’s the kind of maths all carers end up facing and living with because family carers, although they have to eat, still do it for love. Many family carers might even be better off being officially unemployed but thousands remain unpaid and unsupported altogether, slipping through the holes in a safety net they do not even know exists and which no-one has thought to close.

For example, when COVID first reared its head and concessions were made for care home workers and healthcare staff, all you had to do was show your official ID to access them. That is not something a family carer will have, although we will do the same work…  as well as a good many things that health and safety would forbid a formally employed assistant to do. I generally do the job I am paid for…then do the rest as ‘Mum stuff’.

You can’t complain too much (and this has happened to me when I raised an issue) because to do so would “trigger a full review” and the person you care for will “get even less care” as the hours are reduced… Except they won’t. Because you are already working twice the hours you are being paid for, seven days a week, doing all kinds of jobs you are not being paid for… and they know full well that you will go on doing so. “We rely on that,” said one, now-retired social worker who found parts of the system disgraceful.

I am not complaining. I would rather have my son here to care for than not have him here at all. But that does not make the system fair. And anyway, another four years and I could retire… just go back to being Mum again and enjoy some time adventuring in the ancient and sacred sites or our country. Except…

Last September… 2020… I was supposed to be going on holiday after joining the Silent Eye’s autumn workshop and taking the first break that year thanks to the restrictions put in place because of the pandemic. On the morning I was due to leave, with the car all packed for the journey, my doctor called with the results of a routine scan.  He advised me not to go anywhere as things did not look good. He had already told me that my spine was shot, with not only the discs worn to wafers, but the joints themselves badly eroded… the pain had been keeping me awake for months. At first, I thought that was what he was referring to… but no, they had found something that looked like a tumour. He was referring me to the hospital under the ‘two week rule’. And I knew what that meant…

(To be continued tomorrow)

About Sue Vincent

Sue Vincent is a Yorkshire-born writer and one of the Directors of The Silent Eye, a modern Mystery School. She writes alone and with Stuart France, exploring ancient myths, the mysterious landscape of Albion and the inner journey of the soul. Find out more at France and Vincent. 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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168 Responses to The inconvenient walking dead…  #COVID #cancer #carers

  1. petespringerauthor says:

    As one of your more recent followers, I was not familiar with any part of this story, Sue. As a fellow human and parent, I am so sorry for you and your son.

    Liked by 2 people

  2. Sadje says:

    The physical and emotional cost of looking after a loved one is tremendous and often goes unrewarded and taken for granted.

    Liked by 2 people

  3. I learned about the unfair system of caring through you and Nick’s story, Sue. I still don’t know how you coped then and especially now. Late last year, I became a fulltime carer too, willingly, I might add but impossible to manage to any degree of efficiency.
    So unfair that your role has been reversed, I wonder who cares for you these days?

    Liked by 1 person

  4. It’s a system that relies on ‘mother’, the unpaid dogsbody. Mothers are supposed to care. Women in general are supposed to be carers. It’s genetic, how we’re programmed, and we ask to be paid for it? That’s like men asking to be paid for brawling outside pubs or on football terraces innit?

    Liked by 1 person

  5. Katherine Joe says:

    I am sorry for you and for your son. You are strong and great human being. We need more of you in this world.

    Like

  6. The system is all wrong Sue, carers can also be kids juggling school and heaven knows what else.
    I am privileged to know you, admire you tremendously, and share in your anger.

    Like

  7. Sue, you are indomitable, yet the system is so biased towards saving money it’s scary. Selective blindness. I learned this the hard way and Big Pharma drive a lot of the imbalance too. Wrapping you, Nick and all your family in much <3. Xx

    Liked by 1 person

  8. I agree about the unfairness of the system. My hubby isn’t paid nearly enough for all he does to help me, and yet they don’t care, because he’s my husband so of course he’ll do it all anyway. Well, yes, he will. Just like you’ll do everything for your son anyway. But that’s totally not the point.

    Like

    • Sue Vincent says:

      No, that is absolutely not the point…and if you do not need to worry about where the next meal is coming from, many carers could probaby stave off depression and anxiety a lot easier…

      Like

  9. noelleg44 says:

    Family ‘carers’ here in the US face the same dismal prospects with regard to pay and support. Some union tried to unionize them a few years ago, so they could take more of their pitiful pay. If anything, your story, Sue, shows the indomitable the human spirit. You’ve got it in spades!

    Like

  10. We have the same troubles in the US with caring for caregivers and valuing their work. I’m so sorry that you’ve had such a difficult time with the “system”, Sue. Nick was lucky to have such a loving mom. I hope that you are lovingly cared for as you make your own healthcare journey. ❤

    Like

  11. Having last year had only a taste of what being a carer entails, and reaching a point where I did actually check what state benefits I might be entitled to (nothing, since I couldn’t justify clocking up enough hours – even though it would have been impractical to get a job with the time left available to do so!), has really rammed home to me just how undervalued family carers are. The irony (and this government in particular is filled with all kinds of irony) is that, if even half of all such carers relinquished their responsibilities, the UK’s care system would grind to a halt. They rely on our sense of responsibility (and guilt) to keep us in our places. Fortunately for me, at this point in time I don’t need the money – but that won’t last forever. I’ve always been so impressed at your dedication and commitment, Sue, but even more so with my recent experiences under my belt. You’re quite right to have a rant.

    Like

    • Sue Vincent says:

      Wait till you see what set me off, Graeme!
      It wouldn’t even take that many to relinquish their posts, but most are too tired and stressed to even think of doing anything coordinated, especially as it would put their loved ones at risk… and yes, they do count on that. Slave labour?

      Liked by 1 person

  12. Widdershins says:

    Will stay tuned for tomorrow’s reveal 🙂 … would it help if all your readers/followers came over there and punched some faces? … given all the gaping chasms in our society Covid-19 has torn the scab off of, we’ll be punching a who lot of faces!
    Big hugs, m’dear.

    Like

    • Sue Vincent says:

      I may not get there for tomorrow…it may be the next day. I have a lot that needs saying. I think it would probably help more if more people could get together and state their opinions in a concerted manner… but that won’t happen while they are exhaisted and anxious.

      Liked by 1 person

  13. Mary Smith says:

    A strong start, Sue. You are so good at marshalling your thoughts and setting things out clearly – looking forward to your next instalments. On the subject of more people getting together to state their opinions, I noticed when I was caring for Dad that on those occasions when family carers did meet up they did so for the emotional support, the sharing of stories, of feeling they weren’t alone – but they were too exhausted and stressed to even begin to think about how to make anything change.

    Like

  14. I didn’t want to press ‘like’ I know a bit of what it’s like to be a carer, and we lost my mum to bone cancer. The whole system relies on the kindness of families and friends. The state doesn’t care much anymore. Cuts are hidden, but they are still happening. Sending gentle hugs your way x

    Like

  15. gmvasey says:

    Reblogged this on The Magical World of G. Michael Vasey and commented:
    I think in all honesty this should be mandatory reading… and let me tell you something, Sue is still being restrained and unselfish in the telling of this story. This is the world we live in. We NEED to change it.

    Liked by 1 person

  16. memadtwo says:

    Anything considered women’s work is undervalued. Home health care aides and nursing home assistants not to mention child care workers make barely enough to live on, so it’s not surprising that family caregivers are expected to do it for free. We need governments that support the health and welfare of everyone, and that acknowledge that caregiving is hard, valuable, and necessary work and deserves fair compensation. (K)

    Like

  17. dgkaye says:

    Least rewards for caregivers Sue. I hope that changes in our new world too. Blessings ❤

    Like

  18. Reblogged this on Musings on Life & Experience and commented:
    Inconvenient Walking Dead, Part I by Sue Vincent

    Liked by 1 person

  19. willowdot21 says:

    The world and the system is totally mad …all ruled by money those that need help the most struggle the most. I cannot understand why when you have so much on your plate life throws another curve ball. Shout away Sue you are justified, the system stinks. 💜💜

    Like

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  21. Jim Borden says:

    your son is lucky you were there for him…

    Like

  22. Jennie says:

    I think your voice is strong and absolutely right. Your story needs to be told and heard.

    Like

  23. TamrahJo says:

    I’m not currently a ‘carer’ unless you count feeding my four-legged, and cooking/doing laundry for grown son so he can travel to work essential position near 80 hours/week – :). But I have been – – I have done the job family can no longer do, in nursing homes, long ago – – I have been a freelancer to do housework, shopping, cooking, companionship, ensure medical things are kept an eye on and chauffeur, many, many times in my life – – sometimes I got paid – sometimes, my own life fell apart financially but still had to be done for a loved one – and through it all? “We can pay a total stranger who comes and goes at their needs, not the ill one’s needs, and the insurance, or our ‘benefits’ we worked a lifetime for will pay it, but if family does it? Or a neighbor? No GO!” – – So you have every right to be upset and I, will work my way through the rest of the ‘parts of the story’ but I’m right there with you, sister! Everyday people, who love and care for their family, friends, neighbors are the ones that make up the true ‘care is needed, now” network – and the only way national budget deficits and shortfall’s don’t look worse than they are is because – of – (I’ve seen it attributed to Mother Theresa – unknown if true). ““We the willing, led by the unknowing, are doing the impossible for the ungrateful. We have done so much, with so little, for so long, we are now qualified to do anything, with nothing.” that said those I cared for and their family members were never ungrateful – but the massive amounts of $$ I saved insurance companies, understaffed government services and the average working tax payer? None of them care – they just whine about how much they pay, how high costs have gone, why they need ‘more’ – – LOL. Obviously, they have learned how to do ‘anything’ with nothing – – :D.

    Like

    • Sue Vincent says:

      Yes, although the systems differ, they are the same at the heart… those who will do it for love will be left at the bottom of the heap. Especially by those making money from what they are doing for free. Sad…but that’s how it goes..

      Liked by 1 person

      • TamrahJo says:

        I’m working on my “Ode to Sue” – Because, I have now read all 3 posts, and need to read some in between, just to get caught up, somewhat – and well – – I can’t be there to cook, clean, care for you – or hug you – but, no matter how it plays out for me and thee (I have updated my DNR and already told my son if I suspect I have COVID and it’s getting worse, I hope I can make it to the cemetery and lay down on top of the plot I purchased to ‘plan for the worst” after my stroke in 2011 – ). I don’t know how it’s all gonna turn out for anyone, but no doubt, this year’s ‘events’ on so many levels has really highlighted all the ways we ‘say who we are’ and yet, how we ‘don’t do what we said we meant, collectively, in budgets or policies…” – – that said, no matter what – for me or thee, I shall always, always cherish the part of you and your family/journey you chose to share that I could share in – the comment threads we ‘chatted’ back and forth on and well – I don’t see how I could have done different, if I knew how long I would live forward, but, I would have been more tempted to go in debt/bankrupt to travel over and walk in the bluebells with you or the moors, etc., had I know – but we both know hindsight is 20/20 and if I had done so, I most likely wouldn’t have a house, computer and internet just now to send this missive – so there ya go – :D. Love you and you made a profound difference in my life (and sorry if embarassing at raw emotion, but I can’t be there to give you a hug from a ‘stranger from Amercia’ – LOL

        Like

  24. Dalo 2013 says:

    You are an inspiration to mothers everywhere, the effort and emotional cost of looking after a loved one would be extremely draining, and as many comments have said it often goes unrewarded ~ but you note that it is done for love. It makes me thing of the sacrifices my mother, and mothers around the world, endure for their children and those they love…and then when circumstances that you have endured come into play, it is hard not to get angry. To understand how society and the government/caregiving industry takes this for granted is heartbreaking.

    Like

    • Sue Vincent says:

      There are so many millions of people in that situation, just in this cuntry alone. Countless millions worldwide who are taken for granted by the authorities that could help and relieve the pressure. Most of the time, such help is left in the hands of charities… and yes, it does make me angry to see good people go under for lack of a little support and appreciation from official channels.

      Like

  25. Hi Sue, I can well imagine that when it comes to carers, the system does rely on love to a large extent when it comes to the care of individuals who have families. It is the same everywhere in the world. I have been wondering what the situation will be for Nick going forward, especially since I know he is moving. I think of you both often.

    Like

  26. Anne Goodwin says:

    Way behind the curve with this, Sue, and so sorry about your tough situation made tougher. I dithered over the LIKE button, but I’m liking your anger.

    Like

    • Sue Vincent says:

      Thanks, Anne. I’m lucky enough to still be here to be angry for a while, I hope and have been fortunate to be ’employed’ as my son’s carer for a while, which not only protects him, but allowed me to do what needed to be done for him and still eat. … But that was not always the case… and it has always made me see red that the unpaid carers who often have to hold down a job, hold together a family and then do another full-time caring role for love and need on top of all that, simply get pushed aside.

      Liked by 1 person

  27. Chel Owens says:

    I am so very sorry, Sue. That system of carer pay needs to change! Further, I offer my sympathy regarding your cancer discovery. What a terrible way to start a vacation, eh?

    Like

    • Sue Vincent says:

      It put an end to the holiday before it began… oh well, at least I am still here to moan about that 😀
      And, hopefully, to highlight some of the problems faced by family carers, who always seem to get the short end of he stick somehow…

      Liked by 1 person

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  33. Aw Sue. After everything, now this. I’m so sorry. 😔

    Like

  34. Gosh life can be one big hit after another. Family carers is a tough role. A great role but tough. I have been on and off carer of my mum. When she has needed me. But now she needs me more. And I am completely unpaid. I haven’t applied for any allowances as I feel nervous and don’t think we full qualify.

    I just want to express a big hug to you. Coming over to your blog through Robbie’s recent post about the Rodeo.

    Like

  35. ellenbest24 says:

    I wanted to press hate, I don’t know how you press a like button when you loath the punchline. The twist at the end; or near the end, is usually the last step on the climb; delivering elation. Just when you are too exhausted to lift your leg, plant that boot a final time …. it all changes. Not because the climb will be over, but because of the twist. In this case a twist that any writer would be pleased to have thought up. One of those smack you in the maw twists that is talked about applauded for years to come. This one does not hold that power. This one is not liked.

    Like

    • Sue Vincent says:

      I found that phone call a tad melodramatic, I have to say… a bit ‘too’ perfectly timed! Another half an hour and I would have been on the road, phone switched off, and had a couple of weeks to play… except, I would have collapsed a few days later and possibly not have made it, so it turned out well in the end and I’m still here to laugh at living that particular writerly cliche… 🙂

      Like

  36. Gwen M. Plano says:

    Sue, your life journey and courage touch me deeply. I’m in treatment for breast cancer. I try to forget about it but it lurks through side effects and limitations. Three other family members are dealing with the same. We’ve become a support group, an inner circle of sisters who share one medical hurdle after another. Your extended family is your readership. We all love you. Your heart-driven approach to life, your ability to call it as it is, and your fighting and noble spirit guide us all. Thank you for being beautiful YOU. 💗

    Like

    • Sue Vincent says:

      I thinkof you every day, Gwen, since I learned about your own journey… really not an easy one. I am glad you have others with whom you can share it…thoughI wish they were not going through it too… it is not something I would wish on anyone. ❤

      Like

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  40. I’ve visited your blog a couple of times in the past but was not aware of all the details. Thanks for sharing. When you’re a carer, you feel like you don’t have time to take care of yourself. Or, at least I did. Whenever something appeared to be wrong with me, I got that much more frustrated. I can only imagine how you must be feeling with all of that on your plate.

    Is there someone else that can invest more time into your son’s care so that you can take care of yourself?

    Like

    • Sue Vincent says:

      Thank you, Sam. My son is being well looked after at the moment by an employed carer who brings a bit of sunshine with her and can cook like a chef 🙂
      I agree, you come the bottom of the list aas a carer, in your own eyes…and any illness becomes just an annoyance. That didn’t wotk out too well this time 😉

      Liked by 1 person

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  42. I’m one of the fortunate ones in that I’ve followed your blog for several years, read your posts about your amazing son, and your caring of him, and your relationship, as well as your insightful blogs about our spirits and the spiritual realm, and then of course, your pets. You do an excellent job of siphoning all this down to this post, and the next one, of what you’re going through, and all the emotions that follow. As always, I send you hugs and love, Sue.

    Like

  43. I think the care system is problematic worldwide, Sue. It was good of you to bring this to the attention of a wider audience and hopefully bring about changes. When my son-in-law’s mother was prescribed hospice at home after a terminal brain cancer four years ago, he drove 250 miles from his home back to his mom’s home and not leaving her sight for the following seven months. Fortunately, he was able to work for his company remotely and cared for his mom full time. He is the only child. My daughter drove there every weekend to be with him all those months. I can’t imagine if he had to stay in his office.
    As hard as it is, I appreciated you sharing what you and your son are going through. You’re in my thoughts and my heart! Will follow your next post.

    Like

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  48. Marsha says:

    Sue, you have every right to be an angry bird or bunny, or whatever. What a sad situation you find yourself in. I am sure you feel overwhelmed. I did at times with both my husband and my mother, and I had more help. My husband was able to meet his own needs until four days before he died. I didn’t have time to even prepare, but it was an answer to prayer. My mother, on the other hand was on dialysis for eight years. Even so with family, friends, doctors that became closer than family, and home health care, we had it covered. Nonetheless, there were hours of tears. My heart bursts for you. I wish there was a better diagnosis. Have you met my blogging friend Abigail Johnston? She has Stage 4 breast cancer is is a advocate for people with cancer. You might get some comfort from her blog. https://nohalfmeasures.blog/2021/01/28/medical-update-2nd-of-2021/ So take heart as best you can, knowing that you have friends around the world. Lots of love and prayers, Sue.

    Liked by 1 person

    • Sue Vincent says:

      Carers give everything to those they love.. I too lost my partner unexpectedly after a long battle with cancer, many years ago now, and I was already caring for a great-grandparent in my teens. Thanks, Marsha. The continuation of this piece, I hope, shows I am not writing as much from a personal perspective as it might seem, rather that I am as angry as I have been for a long time at how unfairly family carers are treated by ‘the system’ in this and many other so-called civilised countries, where officialdom takes love for granted and uses it as a commodity and where emotional blackmail can be seen as acceptable.

      Liked by 2 people

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  52. Rowena says:

    Sue, I’m so sorry to hear about your diagnosis. I have interstitial lung disease as a complication from my autoimmune disease and have had some close calls. It’s scary stuff, especially when you care for Nick. I’ll be thinking of you.
    Love,
    Rowena

    Like

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  57. Oh, Sue. You and your son have been through so much. And yet you’ve managed to shine a bright light to inspire and encourage others all these years. You’re a champion.

    Like

  58. suespitulnik says:

    Reblogged this on Sue Spitulnik and commented:
    Take a minute to get to know Sue Vincent and why there is a Rodeo happening in her honor.

    Liked by 1 person

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