Carers Week 2013

This week is Carers Week. In addition to raising awareness of the vital role that the staggering 6.5 million carers play in families and communities, this week encourages individuals to self-identify as carers in order that they can receive the practical and emotional support they might need to guide them through what is one of the most important, undervalued and demanding jobs (and yes it is work: hard work) we can do.

Since the birth of Mr Boo at 29 weeks last April I have been a carer. It still doesn’t feel right writing that. Caring is, after all something that we parents do. It’s on the list of necessary qualifications for the post of mother or father. Although as an aside, I think caring is still too often perceived as a gendered – i.e. feminine – trait, which is a disservice both to the women so often culturally expected to take on these roles whether they wish to or not and to the many men who are carers (as my grandfather was until my grandmother’s death) and for whom support seems so irrationally thin on the ground.

Of course I care for my disabled son, just as I care for his fighting fit older sister. But does that make me a carer? Back in January I was advised by a local Surestart Centre where I’d been attending a special needs baby group that I was and that I should register as such with my GP. I picked up the forms but couldn’t bring myself to fill them in. I left them out on the kitchen unit secretly hoping my partner would see them and an encourage me to complete them. Instead he said, ‘So that’s what we are now, is it? Carers. I thought we were parents.’

I totally understood and shared his suspicion of the label. Our son was under 1 at the time. Of course we had to do everything for him. Surely ‘carer’ was a more suitable label for others facing difficult, life-changing situations when typical family life is interrupted by accident, illness or injury, just as it did for my Mum when my grandmother was consumed by that most cruel of mental illnesses, dementia. Dementia eventually killed my Nan, just as I’m sure the strain of caring for her killed my beloved grandfather six months to the day before she died. The casualty list is even longer. Five years after my grandmother’s death, my mother is only just recovering physically and emotionally for this terrible period in her life.

By contrast, we were and are so very lucky. Boo’s challenges have been apparent from birth. They haven’t side-swiped us in quite the same way, although I still feel winded most of the time. For the moment, at least, and unlike so many other carers in the UK, we are able to spread the responsibility of our son’s care. My partner works; I recently (and with mixed emotions) returned to work. The two jobs enable us to pay for nursery for Boo for some of the week where others help us look after him. We are fortunate enough not to have to rely on carers’ allowance, although we know that might change.

The carer forms lay languishing for some time while I pondered what to do with them.  And then my own mental and physical health began to deteriorate quite rapidly. In addition to the depression and anxiety occasioned by dealing with Boo’s medical problems, I was suffering from constant, severe headaches and extreme exhaustion caused by Boo’s acute insomnia and the relentlessness of daily therapies and multiple medical appointments every week (sometimes every day). My back was, and still is, suffering from the strain of lugging around a 10kg+ baby who doesn’t bear his own weight voluntarily or consistently. It’s getting worse with every week that goes by. Bathing him has turned into an Olympic sport.

Who was I kidding? We were and we are carers. And the point of self-identifying as such, I belatedly realised, was that we are mentally and physically vulnerable as a consequence. We needed to be red flagged. Because when carers aren’t looked after, the consequences can be devastating.

Carers may need economic or legal advice, or even just the anecdotal wisdom of someone who has been there and done that. A person, for example, who can suggest you might try to bath your baby by putting an inflatable high chair insert into a laundry basket in the tub to help your groaning spine. Carers may need emotional support to overcome the crippling isolation that living so selflessly and intensely can make them feel. Other carers badly need respite, to recharge their metaphorical batteries, to rekindle all those relationships (with their partners, their other children, their friends) that of necessity get neglected in the hectic lives they lead, to remind themselves that they are individuals who are not solely defined by their relations to others.

Carers, in short, need caring for. More than that, carers deserve to be cared for by the communities they serve through their voluntary and often invisible labour. This may seem obvious, but sadly it’s not obvious enough that this doesn’t need saying now. Repeatedly. And very, very loudly!

As I can’t say enough, I am lucky. I am currently able to work. And exhausting though combining my domestic and professional responsibilities can be, work offers me collegiality, respite, a break. My paid work can involve long and antisocial hours and many would describe it as stressful. Let me tell you: it is a complete doddle compared to the work of carer. Because caring is work that really matters, that makes a big difference to individuals and to society as a whole. The stakes are unimaginably high and the rewards, though many and various, sometimes cannot completely compensate for the price paid by those who do the caring.

So this week, please do spare some time to think about the role that carers play in our society. In my experience of meeting many parents of disabled children over the past 12 months, carers warrant our utmost compassion but won’t want our pity. What they deserve in return for their selflessness is a commitment from us all to find practical and sustainable solutions to funding the support and services they and those they care for require.

It’s time to care for the carers.


8 thoughts on “Carers Week 2013

  1. Carol

    I came across you through a friend’s blog, (thank you Leoarna) and being a parent of a 10 wk early prem baby myself, of course, everything resonates in many of the things you have written before. My son is now almost 18 and I am grateful to whoever chooses our paths in life, that he has been far more fortunate health wise than your dear Mr Boo, and my heart and positive energies go out to you and your family whilst you care for, and parent, your little boy. His physical difficulties aside, he is still going to need you to be a parent, not just a carer, who gives him all the love that all true parents give their children. And the fact that you are utilising the support that is available to you, to work outside the home, will give you that time out to enable you to remember that you both still are his parents, and not just his carers. Your post also resonates on the other end of the spectrum now too for a friend who is taking over the role of carer for her 90 year old mother who is in early stage dementia but physically very healthy and who desperately doesn’t want to go into a home. She is also still being a parent to her 16 year old daughter, on her own being a single parent, and so she now has two difficult and challenging age ranges to look after and care for. Who helps her? What you said about us needing to spare a thought and to help find ways to help support people who look after their families in a loving environment is something we all need to be thinking about. Thank you for your great words, and sending a big hug to you and your family x x

    1. mrboosmum Post author

      Hello, Carol. So glad we are in touch. And I’m so glad your son has thrived. The premmie game is such a tough one and the outcomes can be so very different. What you said about me needing to be a parent as well as a carer to Mr Boo really resonates with me. At my lowest, a few months ago now, I felt so deeply resentful that I felt circumstances were turning me into a carer (an amateur physio, an amateur OT and so forth) rather than the Mum I so desperately wanted to be to both of my kids. I think I’m better able to reconcile the two things now, but it’s a work in progress, shall we say.

      I so feel for your friend. It was so hard for my Mum looking after my Nan. My sister and I tried to help and my Grandad clearly took on much more of the responsibility than any of us realised before he died. But it was just heartbreaking to watch and completely exhausting. Even though my Nan didn’t live with us and remained in her own home with help at various points in the day (when we finally managed to persuade people how bad things were) she would phone my Mum anything between 20 and 150 times a day to ask random things, to cry, scream or swear. We had to give her her medicine and then hide it to make sure she didn’t take it twice. In the end she starved herself to death. We couldn’t get her to eat a thing. It was just awful. My Mum is doing so much better now, 5 years on, but what she went through, what my Nan went through, what my Grandad went through, was just appalling. And we were grown up and had long since left home.

      Thanks again for reading the blog and your lovely comment. It means a lot!

  2. downssideup

    Wonderfully honest post. Mencap are doing a lot about respite at the moment, but without it, what do we become. I guess your work is a form of respite, as my bogging is for me. We need other dimensions to maintain our sanity.

    1. mrboosmum Post author

      Thanks, Hayley. It’s great to hear about Mencap”s work on respite. It matters so much, doesn’t it. Blogging (both writing and reading other people’s such as your own) is definitely respite for me too, and the best form of therapy I know..

  3. Looking for blue sky

    I was really uncomfortable about calling myself a carer, and didn’t start until my daughter was 13 and I finally had to give in and start using a hoist instead of lifting her. Up until then I could pretend in my head that she was just a very large toddler….

    1. mrboosmum Post author

      Goodness. 13! It’s so hard, isn’t it? But I am increasingly coming round to the view that it is necessary. We need to identify others and be able to identify ourselves as people doing a hard job who may (or may not) need extra support. Someone talked to me about hoists the other day, although it is still very early days. My partner’s back, in particular since he has an injury anyway, really suffers with carrying Boo already.

  4. skemperoony

    Another great post. I don’t blog but I do work part-time, and I value that job and the responsibility it brings so much. I am an adult who is in charge of decision making in the workplace, and it feels so wonderful.

    My daughter is 12, was 27 weeks prem and sustained a devastating brain injury as she was so tiny and unstable. As a result he has CP, epilepsy, VI, hydrocephalus, ADHD and challenging behaviours (yes, a child who uses a wheelchair and is unable to run around the room and hurl themselves off furniture can have ADHD!) The respite we have for our daughter from the most wonderful carer imaginable is a lifeline to us. So is the Mindfullness course I am currently doing at the local hospital, in a group with other parents of children with disabilities. And I can’t stress enough how much I value the friendship of other mums of children with special needs, the ones who don’t judge an totally ‘get’ the worries and stresses and exhaustion.

    Best wishes, Sarah


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