Guest blog

“We are lucky..” The 91 year old carer

A letter from my indomitable friend Sarah, who is a fulltime carer – at 91 – to her 92 year old partner of half a lifetime, is full of cheer and optimism:

The situation here is much the same but with improvement – I can now read to X from ‘The Irish Times,’ ‘New York Review of Books’ and from novels, Parks, Tobin, Ford, Stroud, Sebastian Barry…

I attribute this improvement in X to: being in her own home; routine; kindness of friends, and carers. X is now 92 (I am 91!) – We’ve been together for 46 years. I am chief (of course) carer. I rise at 6.30 am, get myself going (breakfast/shower). At 9am the morning carer comes, sets X’s  breakfast, shower etc. Then I drive us to buy newspaper and to a local beach, hill…. The morning carer is paid for by the Health System (1 3/4 hours). The rest of the day (lunch/dinner) I officiate. We pay a carer to get X to bed. Our carers are very kind and good and competent. We are lucky..

O to to have such posititivity and indomitability. I am overcome with respect and admiration

Guest post: “I’ve lost £100,000 in earnings in two years of caring” – and ‘Outraged’ has also lost her life..

Outraged writes:  “My life before caring was bliss.  I worked in Ireland, in the public sector and was outraged at the austerity measures being imposed on public sector workers.

I didn’t know I was born.

I moved back to the UK two years ago when my mum was diagnosed with a brain tumour.  She had worked fulltime but was also a carer for my sister who has cerebral palsy.   I now look after both of them as they are very physically disabled and thus very physically dependent.

The support family carers can get from the state is abysmal. It is also means-tested.  I am expected to fund respite care top-ups on a carer’s allowance.  Bear in mind the allowance is £61 per week regardless of how many people you care for, and tops-up range from £50-£200+ per week.

I cannot work – no employer wants someone who can’t be flexible, who has to leave work regularly or can’t stay back because of myriad hospital appointments, blocked catheters, toilet calls, or most frequently of all – to pick up the personal care tasks that care agencies won’t do…or more usually don’t do safely.  I have to supervise carers, or  else they would mobilise my mum unsafely -sinks are washing aids, not standing aids!  -they don’t change their gloves (they don’t pay for this PPE unlike me) – I’ve stopped carers from taking stuff from my fridge because they had my sister’s faeces on their gloves; -they leave our front door ajar ALL THE TIME.

The state pays £400/week to these agencies for providing 33.25 hours of care.  I get £61/week Carers Allowance for 118 hours.

The red tape is endless… disability allowance, carers allowance, personal independence payments contracts, housing benefit, means tested assessments for housing support services, care in the community services, pensions credit, support with health costs, carers leave application to my employer. These are reviewed annually.

On a daily basis I am to my carees:-  *  Nurse,  *  physio, *  PA, *  secretary, *  social services advocate, *  chef, *  cleaner, *  chauffeur, *  personal shopper, *  limb-mover,*   pharmacist, *  debt manager, *  banker.  I feel like I do so much more, I am that tired.

I’ve lost circa £100,000 in earnings in two years of caring.  For this the state offers me £60/week.  No pension, no sick pay, no holidays and if my carees go into hospital or respite care then I lose that £60 too.

My work and friends are in Ireland, my partner is in Ireland, my home is in Ireland but I’m here.  I’m only 34, I want to have kids, I want my life back.  But that will only happen when they die, and then it’ll be too late.

3 in 5 of us will be carers at some point in our lives, and that figure will likely grow as life expectancy exceeds life quality.

I say to all you non-carers who happen to be reading:  enjoy your life whilst you have it, the state will not permit you a life as a carer.In fact, if it could means-test my nostalgia it probably would.

Carer With Attitude says:

If you are altruistic and want look after those you love, and save the NHS and Social Care departments  from having to pay the going hourly rate for paid care (in this case £12 for every daylight hour), should the state really expect you to  give up your life, your career, your future, your family,  as well?

Seems so.

Yet MPs (every single one of whom have failed to help the family carers they all represent)  tell us they are being altruistic to live on that teeny weeny little £67k  they get  as basic salary (plus generous expenses to cover the costs of running an office.. staff..somewhere to live..ok several places to live.. travelling ..silk cushions.. duck houses… moats.. moles…You know how it goes) And they seem to be allowed extraordinary licence in their expenses claims. AND many get seeming immunity from prosecution, censure or  dismissal when they go beyond licence to downright fraud.  

Iain Duncan Smith thinks that  £61 a week Carers Allowance is generous recompense for Outraged’s  altruism and hard work. He also thinks £39 is a reasonable amount for himself to try and claim for a single breakfast* to line his lardy, smug and self-entitled tum.  Think about that for a moment.

I wonder how many years Outraged has spent getting qualified?  WIkipedia points up Duncan Smith’s qualifications as pitifully thin when the truth was told.   Wouldn’t the world run better if  the Ian Duncan Smith  ‘learned on the job’ for a while, as fulltime carer discovering for himself the realities of working round the clock without acknowledgement or comfort whilst trying to survive on £60 a week?  Thus allowing Outraged to fulfil her considerable potential through the career and life she would like to lead?    Answers please!

The next Carers Virtual Strike will be on 21 November 2014.

*his claim was submitted – but, thank goodness, not accepted.

Carer Fatigue – It’s different for me (but it’s still hard)

Today’s guest blog is from Rob G (@Simplicitly on Twitter) –  fulltime carer for his wife who has Secondary Progressive MS

 It takes time to care, it takes energy to care, it takes time and energy to make up for the time and energy you’ve exerted caring. This is often nothing compared to the energy the person you cares for has to exert, and the pain and privations they have to go through while you’re caring for them

It takes time to care, it takes energy to care, it takes time and energy to make up for the time and energy you’ve exerted caring. This is often nothing compared to the energy the person you cares for has to exert, and the pain and privations they have to go through while you’re caring for them

A lot of stories about family carers are of people who have been dropped unexpectedly into frightening and difficult circumstances. Becoming a carer can really can happen to anyone. In a situation like mine it’s only natural to feel a sense of relief that you don’t have to deal with some of the problems that other people do. This feeling doesn’t go away just because you have more problems than some other people do.

How is it different for me?

chose to become a carer. When I met my wife, she’d been diagnosed with Relapsing-Remitting MS for a couple of years. (It has since progressed to Secondary Progressive MS). She sat me down with an A5 red binder containing lots of information about the possible courses of the disease. MS doesn’t have an established pathology that applies to everyone who has it. It just does its own thing, on an individual basis. Nevertheless, there was a lot of information about the different forms. Relapsing-Remitting MS (where you get worse and can get better) can change to Secondary Progressive’ MS (where you have periods where you get worse and others where you plateau). It also detailed how MS can also be ‘Primary Progressive’, where you get worse, and carry on getting worse as a general rule, without as much opportunity for much stability or improvement in your condition. I should point out that none of what I just said is set in stone, it really can be different for anyone who has it.

So, I was ostensibly given the chance to walk away from a life as a carer. If you can put aside your feelings for someone, and place some of your own needs ahead of theirs, there’s a choice for people as lucky as I was to be given one. I understand why anyone would make this choice. However, even now, when my carer role excludes me from being reliable enough to have time to have a ‘proper job’, I wouldn’t have it any other way.

That doesn’t mean I don’t need help.

As anyone who is a carer will know, the last person you look after is yourself. It’s not about being some kind of selfless superhero, it’s pretty tedious personal prioritising. The roles you end up doing are too important for you to balance your own needs against them. Academic hierarchies of need are thrown out of the window when you’ve got to clean stuff up and sort stuff out and care. It takes time to care, it takes energy to care, it takes time and energy to make up for the time and energy you’ve exerted caring. This is, however,  often nothing compared to the energy the person you cares for has to exert, and the pain and privations they have to go through while you’re caring for them, so it’s easy, perhaps even natural to put yourself second.

It also doesn’t mean I won’t keep complaining. Carers are dealt a doubly bad hand. We don’t want the compassion that should be reserved for the people we’re caring for, we just want to not be taken for granted. However we’ve arrived at our roles as carers, or more accurately, our jobs as carers, we’ve all got the ability to walk away. The £119 billion pounds that we save the economy every year – the value of the entire welfare budget, doubled – isn’t our priority. But if you keep pushing further local government cuts and welfare reforms upon us, at some point we’ll break. And the cost of breaking us will be higher than any non-carer can recognise!

I chose to be a carer, I chose this life, but I’m no less bound to it than the people who have been thrust into it unsuspectingly. 

Carers have to fight for every bit of  the help they get. There are charities and a care minister and a duty for local services to help carers, but in the face of continuing political apathy on our behalf and indistinct ‘cuts’ to local services cutting closest to services for adult and child social care, it’s getting worse for carers, and the people they look after, not better.

That’s before we even consider the NHS, and what has happened to the Better Care Fund.

Does what Rob says  chime with you? Sign up to the Carers Virtual Strike and show the world the true cost of care!