A GUEST POST BY LEANNE TERVITT.
My daughter and I have been carers for 13 years now. My mum got sick in 2010. She was born with an autoimmune condition called PBC which attacked her liver. It didn’t start to affect her until around 2010 when severe itch and fatigue knocked her for six. Mum attended the Royal Infirmary of Edinburgh, where it was found that the PBC had caused lesions in her liver and she required chemo before she was listed for transplant.
Her 1st transplant was in July 2011, a split liver that she shared with a child who also needed a liver transplant. This liver went into rejection, and she was again listed for transplant. In January 2014 she received her 2nd liver which is still going strong today. However, she did have acute rejection and infections which meant she was in the Royal for about 9 months of 2014.
As I worked, my daughter was doing most of the care, but her carers allowance was stopped in that time. Even though she was driving a 70 mile round trip most days, even though she was doing all mums washing. Even though she was running my mums house and mine too and keeping everything going.
That 9 months saw all my savings disappear. Parking at an average of a fiver a day, petrol at around a tenner a day, and as I was doing 12 hour shifts, then visiting the Royal (I’m in Fife), we were eating from canteens and takeaways. Costing an extra 400 quid a month at least.
Chips on rolls were a staple diet in those months. My daughter couldn’t start her own career as I had to work to pay the mortgage, so she provided the care those early years, which will affect her pension in the future.
I attended a hope over fear event in Penicuik around that time as it was near the hospital and I also remember being her proxy in the referendum, obviously voting yes! We were desperate for independence. We knew life should be easier than it was.
Mum recovered from this stint in hospital and eventually got home, although she was always dogged by serious infections and many trips to the hospital, which affected her fitness every single time, and its so hard to regain that fitness when she was back in just a few weeks or months later.
In 2016 she needed a kidney and I had a spare so I climbed Munros to lose weight (five stones in 10 months), while she had dialysis to keep her alive, and I donated my kidney in Dec. 2016 saving the NHS a wee fortune.
Her liver and kidney are doing great to this day, although again, infections are sudden and severe due to the immunosuppression she takes, and she has had sepsis many times and has been sedated and ventilated in intensive care.
I gave up work in 2020 when covid hit. The airport was not a safe place to be as my mum and I lived together by then to make the caring easier.
Carers allowance was around £67 a week at that time and its taken off Universal Credit. I was living on less than £500 a month, for what is, at times, a 24 hours a day, 7 days a week shift, often staying up through the night listening for signs of trouble. Its knowing the signs of sepsis. Its knowing what BP, Heart rate, O2, resp. rate and temp should be. Its telling the paramedics dates of all surgeries, hospital visits and medication list. Its telling the docs at the hospital what meds she needs, what meds to take her off, what meds to double. I’ve lost count of the 999 calls I’ve made.
Schemes are full of carers. We suffer worse health, both mental and physical. Addictions. Poor housing. Poor nutrition.Theres pensioners looking after their adult children
Husbands looking after wives and vice versa. Theres sick folk having to look after sicker folk.
Working isn’t an option for most as the care doesn’t always fit a routine. Financially, working isn’t an option either as you are extremely limited as to what hours, and what wage you can get before your Carers and UC is reduced to nothing, even though the full on caring is still happening. We also have shit pensions or no pensions, adding to the worry ahead.
Its hard at times. Mentally and physically. It can and does push people to breaking point. It takes its toll.
I recently walked away from a well paid job as I faced too many barriers. Working full-time is very difficult when you’re still a full-time carer too. Something has to give and as I didn’t feel supported at work and was completely stressed. I jacked in £44k a year to go back to £500 quid a month. My family’s health and my health will always come 1st.
Albas policy of a living wage for carers would mean I, and all the others could get by. I don’t spend money. I don’t go out. I don’t get hairdos or fancy clothes. I haven’t had a holiday in years. I just want to be able to manage the bills and be able to properly care for my mum. Is that too much to ask?
Us carers get a raw deal. Not just in schemes but in every demographic. It’s mental and physical work and stress, it’s learning about conditions and knowing how to deal with emergencies, its doing observations every 3 hours when they’re not feeling great. We should not have financial stress added on too!
Carers save the Government an absolute fortune, and we get very little for our efforts, which at times are extremely difficult.
So hats off to all you unpaid carers out there, your stories may differ from mine, but ill bet the worry and the stress are the same. We deserve so much more.
I understand where you are coming from Leanne.
I too walked away from a decent job to look after a relative’
I’m now caring full time for nothing. If I claim carer’s allowance the money will be taken from the person I look after. Because I have a small works pension of around £50 per week, any extra I get will affect my Housing Benefit and Council tax allowance so the carer’s allowance would be worth less to me than it is to my “caree”.
I don’t claim UC because I’m worried that they will make me claim carer’s allowance and, if I claim to be working any less than the full time required, that they will make me look for work – that would not be possible because I’m actually on call for my relative 24/7.
I applied to the charity that supports single women in Scotland over the age of 50 and they make up my money by a further £120 per month – thankfully this does not affect my benefit.
The person I care for and I came to an aggreement that I would eat and do my washing/use the internet at their house and save using electricity at my own place – that is my payment for caring.
Although he claims PIP for every day care he gets nothing for mobility, yet he is unable to walk far and requires me to take him everywhere he needs to go (medical appointments) – he does pay for the petrol. By the time Covid lockdown was by with he hadn’t left the house for five years because I had no transport. I was only fortunate to acquire a car through another’s misfortune – another relative who had to give up driving due to poor eyesight pased on their car to me, free of charge (although the annual MOT, insurance and petrol are a drain on finances).He still doesn’t really go out, except for medical appointments (and it is progress that he does that).
Thankfully he seems to be improving – at least on what he has been like over the past year when substance abuse almost killed him and left him in an almost alzheimer like state.
The GP said that I should walk away – but how do you do that to another human being?
In another 481 days I will receive my delayed state pension – currently forecast to be worth around £207 per week. I’ve calculated that, after deductions and together with my works pension I will be approximately £85 per week better off – this because I will just fall into the lowest tax bracket and will have to pay some of my rent and council tax.
Like you I don’t go for hairdos or buy new clothes – hand me downs are fine for someone who spends a lot of time cleaning up sick and sputum. Thankfully I’ve never been asmoker or a drinker so haven’t had to try to give up an addiction in order to keep my head above water. I manage on what I have but it is a struggle sometimes and I do get resentful – especially of those who think claiming Housing benefit and CT releif is “scrounging”.
It makes my blood boil to hear the narrative that the poor are scroungers and that the country is in ruins because of our “greed”.
One look at Alan Sugar and the like and the desire of all the elites to contribute zero in taxes – as well as storing thei money offshore and not feeding it into the economy – should tell everyone who the real drain on society is.
Unfortunately people read no further than headlines and the MSM really love to poor bash.
I’m just waiting for the return of the Victorian poorhouses.
At the next election I shall be disenfranchised – unless one, any one, of the parties who really stand for Scottish Indpendence put up a candidate. I feel let down by both Labour and by the SNP who both promise so much and deliver nothing. People seem to be getting excited about the prospect of a Labour Gvt at WM – under Sir Kid Starver I can’t honestly see there being any difference. At least with the Tories you expect them to be cheating, lying, corrupt b*****ds.
Same here. Im also on call 24/7. Due to my mums immunosuppression she can, and does, go from absolutely fine, to ICU in the space of a few hours. I worry so much about money, but if I worked then I’d worry so much about my mum. My last employers weren’t exactly supportive of my situation either, employers just wouldn’t want me as I have to explain that there’s times I need to leave urgently. My carers allowance, which is a pittance, is pointless as its taken from my universal credit, so aye, im working for nothing. Its also based on a 35 hour week when it so much more. Its not just the caring is it, its the responsibility. Theres thousands like us, and we don’t look after ourselves so well do we? I know a few quite sick people, looking after folk who are sicker. Theyre treating us like shit, for saving them an absolute fortune. I understand every word you say here and I send my love. Its no easy x
Thanks for commenting. We are treated so badly aren’t we. We save governments a fortune. And yes i totally understand. Any carers allowance I get is taken from my UC. Working for nothing for what is way more than a full time job. Like you said, im on call 24/7, sometimes staying awake all night to listen out for anything going wrong. I worry about money, but then when working I worried about not being home. Employers aren’t exactly supportive when you say that sometimes you have to leave urgently.
A wee bit appreciation for what we do wouldnt go amiss, considering how much money we must be saving governmnets. A living wage surely isn’t asking much. Thank you and take care
“Us carers get a raw deal” is the understatement of the year. Time after time, politician after politician, government after government utter the same meaningless rhetoric about how much unpaid carers are valued and how much they save the country by their “sacrifice”.
Of course, the most popular time for them to take down that phrase from the shelf, dust it off and wave it at the people is immediately prior to an election and if we are very lucky, once elected, they may even throw a few crumbs our way as if that is gong to make any real difference to our lives. I don’t complain because I have to care for someone, that just what you do for family. However, to have to listen to the false platitudes time after time with no material difference to our financial circumstances or the support we receive from the broken social care system is galling in the extreme.
The social care system is finance-driven rather than needs driven and the eligibility criteria continues to ensure that only the most critical of cases receives support. If we had received appropriate support much earlier, perhaps our situation would not have become critical!
Since they began to keep records, disabled people and families who have a disabled person have been at the bottom of the financial ladder and despite, programmes, initiatives, policies and legislation, nothing has changed. Now we are supposed to be enthused about a new National Care Service but unless there is fundamental root and branch change from the little empires that social care directors build for themselves, little change is likely to happen. For example, social care recipients have known for decades that accountability in the social care system in Scotland is an absolute joke. The Report following the Adult Social Care Review (The Feeley Report) had some great Recommendations one of which was a National Care Service with a new system of improved accountability, but as fully expected, on the day that the Report was published CoSLA and the Unions had their objections also published.
Despite all the brave words from the Scottish Government about not backing down re accountability what happened? They backed down over accountability!
Aye it is an understatement isn’t it. Why are we overlooked? The benefits system is a joke, and all of us on benefits do not get what we need to survive, but we are also saving them a fortune. Because we have to. Our own health suffers. We have no private pensions. Its a round the clock job with no pay, as anything I get in carers is deducted from my UC. Thanks for commenting, im away to look up those reports you mention.