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)
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.
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We have bad patches, Pete, but on the whole, he and we have learned so muc and so much of what he has achieved since the attack has done goood for so many… any regrets are double edged. This pictures on this piece tell some of that 🙂 https://scvincent.com/2019/07/04/breaking-barriers/
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It is moments like these when I realize how bad my memory has gotten. I now remember reading about your son’s senseless attack and all of the things he accomplished in the interim. The power of the human spirit lives on.
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There are so many stories on WordPress, it is hard to keep track of them all until they become part of something more personal.
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The physical and emotional cost of looking after a loved one is tremendous and often goes unrewarded and taken for granted.
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It is and it does… but that is no excuse when it comes to governments who know just how much money family carers save them.
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The government policies in Uk just suck!
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I would have to agree that many of them do…
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But health policies in USA aren’t much better either. Over here in Pakistan we are on our own as far is health care is concerned. But visiting the doctor is not that expensive neither are the meds. So I think we are better off in a third world country.
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In many ways, you may well be right, Sadje. Although I know I could not afford the tretments that mean I am still here.
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These treatments are expensive no doubt. I wish you all the best my friend
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Each dose of one of the medications costs almost my yearly salary.
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I have found that the cost of medicines in first world countries is more than double that what is here.
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Pharmaceutical companies make a lot of money from misery… which I find rather immoral.
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It is immoral and cruel
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Indeed.
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👍
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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?
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I am well cared for, when I need it, Jaye. Bossed and bullied, even 🙂
In the early days of caring for Nick, eBay was my ‘best friend’ and I sold everything I had of value to keep us afloat. But complete strangers stepped in to help too… it was a humbling and yet beautiful experience and we could not have managed without that help.
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I’m glad you have help, Sue, now and in the past…
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I am very grateful for that help, Jaye.
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I am reminded of how I felt when I was in your shoes a few years back… very glad of the support I received, from some of the most unlikely places too…
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Yes, that is often the way… and the help is not always visible and practical… just the support that comes at the right time.
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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?
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I think that is pretty much the mentality behind how these systems are put together. Save a few bob for the traesury too. But for once, it isn’t the way the system is funded that has me riled. But it does show clearly how little family carers are valued… I’ll get there when I’ve finished the background.
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When it’s men doing the caring we never hear the end of it. I know it happens and will happen more and more as life expectancies increase, and that might be one reason that change will come.
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I can’t agree with you on that one. Because of the work I have done over the years, I have seen so many male carers just quietly and lovingly getting on with it. And I am also being looked after by a quiet male presence.
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I have only a very limited experience of it here. Most of the old people go into homes or have a nurse come in. The few couples I’ve known where one has been the carer the men have complained bitterly that it’s not their job to be looking after a wife. But it’s a generational thing. Soon that attitude will be dead.
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It may be cultural too.
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Probably. The French are very conservative in many ways.
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Surprisingly so sometimes.
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Good at revolutions, bad at enforcing their ideals.
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We could still learn a thing ot two about making our voicess heard.
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We’ve rather let it slip, haven’t we?
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Just a tad…
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I am sorry for you and for your son. You are strong and great human being. We need more of you in this world.
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Thank you… the experience has taught us a reat deal.
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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.
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Children from very young ages have to deal with situations even adults cannot cope with. Speaing from personal experience, I had to dealwith suicide atempts from before I was ten, was giving enemas to my great grandmother and dressing her by age thirteen… and spending 20 years of my adult life managing a family, working and caringwas easier.
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Hard times Sue ❤
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It had been going on a long time …
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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
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Oh I know about how much Big Pharma are raking in… but as we need their products (they are the only reason I am still alive!) what can we do?
The sickening thing here is that unpaid family carers actually save the government more than the total cost of the NHS in a normal year….and yet remian unpaid. You can see why when you look at the maths…
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Yes, Sue. We are unpaid and as you say. we do it out of love and wouldn’t have it any other way. It saves the system a huge amount…
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The cost of the entire NHS most years…
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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.
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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…
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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!
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All carers need support. I’m on the opposite end of the equation at present, as you know, and I am very aware how difficult this can be…
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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. ❤
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Nick and my menfolk are all looking after me well ❤
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I’m not the least bit surprised
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🙂
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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.
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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?
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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.
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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.
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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.
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And I think the authorities take that into account and rely on that exhaustion. Imagine what a voice we would have if we could all speak as one…
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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
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The cuts are, as you say, happening in an area already stressed to the limit. More, not less help is needed for carers.
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Agreed x if only we could make government listen xx
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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.
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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)
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I agree… a hangover from previous gnerations and attitudes that still needs to be addressed.
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Least rewards for caregivers Sue. I hope that changes in our new world too. Blessings ❤
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And yet, in so many other ways, it is the most rewarding of ‘careers’ as you know so well, Debby ❤
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I surely do Sue ❤
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❤
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Reblogged this on Musings on Life & Experience and commented:
Inconvenient Walking Dead, Part I by Sue Vincent
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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. 💜💜
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If there are still ‘curve balls’ coming, they are doing so because I still have a lot to learn 🙂 x
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Hopefully they are gentle curve balls.💜
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My hands are a bit full for catching many more 😉
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Excellent 👌
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Pingback: Courage: Grace under pressure. #DonaldTrump or @SCVincent ? #POTUS #Cancer | Barb Taub
your son is lucky you were there for him…
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I’m lucky he came back to bug me a sa son should too 🙂
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🙂
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I think your voice is strong and absolutely right. Your story needs to be told and heard.
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I think it helps knowing that this isn’t about one person, but about everyone who is being scarred by the way this crisis has been handled and frequently mishandled, Jennie, from the children learning not to hug to those at the end of life and dying alone.
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I think you’re right, it’s about so many people in different ways.
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I cannot imagine anyone on whom there has not ben some impact.
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True!
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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.
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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..
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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
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You’re no stranger, just a friend yet to be met. And hugs are always welcome from friends…’rules’ or no. xx
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I try not to barge in though I often due – but will get better at focusing and sending you ‘universal white light’ hugs – hoping you feel them – cuz ya know? Despite it all, I still believe in magic…. 😀
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So do I… and miracles too 🙂
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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.
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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.
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