Health and care: My life as an anonymous carer

A Husband for a Carer

Hello, my name is Simon and I am a carer. 31st May, 2005. That’s my carer date. At the time of writing this, I have been caring for my wife, who has progressive MS, for just short of nine years.

I’ve worked on market stalls, in factories, I’ve been a postman and a civil servant, but I can say, without a doubt, that being a carer is the hardest job I have ever done. For me, it’s relentless graft. There is little, if any, respite during the day. I have to laugh at the notion that what I do is ‘informal care’. Because it feels bloody formal to me. Every care assessment my wife has had treats me as the ‘second carer’. Yet my name is the one my wife calls out when she needs something, when she’s in difficulty. I’m the one who gets up at 3am to deal with her pain, or if she bypasses her catheter. Then get up again at 8.30am for a ‘normal’, full day’s caring.

I write a blog – occasionally – when time allows and the inclination strikes. I keep it anonymous for a few reasons. Primarily, to try and protect my wife as a vulnerable person while allowing me an outlet.

But lately, the attitude of the coalition government and their media supporters toward disabled people – and by extension, carers – has vindicated my decision to write anonymously. Discrimination against disabled people seems to be acceptable to an increasingly significant section of society. I’ve no intention of exposing my wife to the dark heart of the internet troll.

Anonymity also allows me to write about very personal things that I might not want to divulge to people I know. Issues like the effect that caring has had on my mental health. It’s embarrassing to admit that the stress of being a carer has driven you to breakdown. It’s embarrassing to admit you have to take medication every day just to get by.

Government policy in this area must account for the fact that the needs of carers are inextricably linked to the needs of the disabled person they care for. Things have improved but, to me, there is a long way to go until carers are given their proper due.

My first carer’s assessments were done by a charity on behalf of a local council, not by a trained social worker with in-depth knowledge of the social care system and the budgets allocated by their council. It wasn’t until we moved to where we live now that I was offered respite on a regular basis. By this time, I was very close to what Hugh Marriott describes in The Selfish Pig’s Guide to Caring as ‘burnout’.

But a good government can help stop carers from burning out. Just as a disabled person should have continuously assessed, holistic health and social care, a carer needs something similar. We need help. It’s a myth that a carer’s stress can be ‘cured’ by having an assessment of their needs. It’s not much good having an assessment if there’s no practical help available at the end of it. Good social work for carers means that practical help is there and properly funded. Caring is a chronic condition that has to be managed continually for as long as you are a carer.

You can try to beat this by throwing money at the problem but when we read the news, we see the headlines that tell us that budgets are frozen or cut. With ever-decreasing funding for both health and social care provision for the disabled, who will meet the shortfall in need at the most basic level – the level of the individual who requires help? It’ll fall to ‘informal’ carers. All six million of us – 10 per cent of the total UK population.

The fiscal worth of carers to the UK is often kicked around during awareness campaigns. The last figure I saw was that carers save the UK £119bn per year. What we do is vital – both to those we care for and to the nation as a whole. We urgently need properly funded respite and assistance. Don’t condemn us to being anonymous.

3 Comments:

  1. Anne

    Hi Simon,

    I totally understand what you are saying and well done to you for speaking out. I am sorry that you have had such a bad time and hope the Government do something about this ridiculous situation. Carers are saving the Government millions, if not billions of pounds and what do they get in return? It’s a joke!!

    I had been caring for my elderly and disabled mother for 3 years and I gave up my job and moved in with her so that so could live in her own house for as long as possible. I learnt so much from the experience and would love to help other carer’s who have found themselves in the same situation.

    Being a sociable person, I found the isolation was probably the most difficult part, but I found ways of dealing with it without going insane.

    Now mum is in a Nursing Home as her frailness and disabilities became too difficult for me to manage and having more people around her was also an integral part of her move. How do carer’s pick themselves up after caring for someone for so long? I’m now looking for a job where I can use my experience and help other people.

    Wishing you all the very best and just remember you are doing a wonderful job even if you feel invisible half the time, as I know I did.

    Reply
  2. Stacey Murphy

    Hello, first of all I’d like to say I apoligise for your hardships and I appreciate how honest you are in the way you have been treated. I think it’s exceptionally hard to be a carer for a loved one, I can relate.

    I’m in association with Carers Unite. A Social Network for carers ‘only’ that will be launched in the New Year. Two years ago my dad had three strokes within a week at the age of 52. I became his full carer whilst my mum worked full-time to keep our house. I am setting up a social website for carers, studying my Masters in Education and caring for my dad.

    This site will have – dis-counted caring products, online book service, private messaging service for counseling, personal profiles, video and photo album online and status updates from carers, relationship and dating app – so you can find someone in the same situation as you, friendship apps – again find someone who is in the same boat, job board – offering money for tasks online, actual caring jobs for professionals, making money at home, financial and career advice, training possibilities, buy, sell and trade options with other carers, fundraising opportunities, events – getting you out meeting new people and local nightlife, referring you to right places for advice like Carers Trust and Carers UK etc… I have also written a children’s book called David’s Family – explaining to children about serious illnesses, the next one is Jenny’s Sister dealing with the tragedy that is cancer – you can find them here if you would like to take a look – http://www.carersunitebooks.com

    I have just started a blog all about what happened to me and my family and how I am trying to help other people who had similar experiences as I did at: http://www.carersunite.com/blog

    I would really really appreciate it if you could take the time to link to my blog and I can do the same for you.

    Thank you, for any help you can give me.

    p.s people keep kicking you down, it takes a greater person to keep getting back up.

    Stacey x

    Reply
  3. Jon

    Best of luck and thanks for sticking your head above the parapet.

    The lack of any comment on your post is very revealing. I am sure that I am not the only one who thinks ‘Does anyone care about Carers?’.

    The insanity of the present system is beyond belief (unless you have personally experienced it).

    The prejudice against male Carers is endemic in the system and needs rectifying. In a recent survey by Carers UK it was ‘discovered’ that 45% of Carers are men.

    I have been a Carer since I was old enough to ‘fetch Dad XXXX’ and am now almost 60. I have provided care for up to 3 Disabled People without any help from Social Services. I now only care for my wife, my parents having died.

    The insanity of the system includes having my own disability benefits reduced (despite numerous medical reports) by a tribunal BECAUSE I was a Carer. No respect for the pain and effort it took to provide care just disbelief that someone would willingly suffer to care for their family.

    The comparison that I usually give is with Junior Doctors being ‘on call’ for days resulting in a change in the NHS preventing such ‘abuse’. I have been soley responsible for the care and wellbeing of Disabled People, without any (provided) training whatsoever for over 10 years.

    You have to laugh or you’d cry?

    All the best and don’t let the b’s grind you down!

    Jon

    P.S. Society does things to Carers so that Society doesn’t have to care.

    Reply
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