Who cares about the carer?

It’s been a challenging week with our household coming down with yet another bug, this time flooring all three of us.  The sickness in our home seems to follow a particular pattern: I am the bug-magnet and pass it onto Freya. Sometimes, but not frequently, us ladies manage to infect daddy too, creating a full house arrest and awfully much snot.

Freya’s managed well, but is knackered by the illness. She seems her happiest sleeping on my chest connected on the wet circuit of her ventilator and consequently I am stuck in her bedroom for hours and hours watching yoga documentaries and feeding her slowly with a syringe.

I struggle with these episodes of house arrest and having to maintain constant high levels of alertness. We’ve had to cancel all our social engagements, which makes me feel isolated. I’m outdoorsy kind of girl and being stuck indoors affects my mood.  I’ve been sleeping badly with Freya’s alarms beeping all night and my mind refusing to properly let go in case I am needed for an emergency. Where I know (and, sadly, am frequently reminded) that for kids like Freya any cold can result in long intensive care stays, or even worse, underlying anxieties and fears I have about precarious nature of our little lady raise their ugly heads and I struggle to silence them. In short, when our house gets hit by illness the stress levels hit the roof.

Not feeling well myself, I started thinking about definite nature of our own strength and resources. Whereas I tend to be in generally good health is the stress of our lives getting to me? I eat well, I try to exercise and practice yoga regularly and I am trying to make more time for myself. Comparing our lives with how things were a year ago I can see progress – all of us are less housebound and slowly, slowly we are gaining some of that independence we lost with realisation of the extent of complexities of Freya’s condition. But is it enough? Where we all agree that parent carer self care is vital for families like ours to function, if the tools for this are not provided are we burdening the already overstreched parents with yet another thing on their to do list, creating more stress? Who cares about the carer?

Family? Friends? Yes, those fortunate enough (we are lucky in this respect to have some amazing people in our lives). But in theory, the government has a statutory duty to ensure and monitor the well-being of those who act as carers to their family members.  This falls onto Local Authorities, who must ensure carer’s needs assessed and are being met: “The aim of a carer’s assessment is to give you a chance to tell social services about the things that could make looking after your child easier for you. This may result in getting services to meet your own assessed needs. A carer’s assessment focuses on you as a parent and your needs, your wellbeing, health and safety issues and important commitments such as relationships, education and employment.”  See https://www.contact.org.uk/advice-and-support/education-health-social-care/social-care/carers-assessments/

This provision is often ignored by local authorities and many of the parents who I speak to have even heard of it.  The reality caused by cuts to the services and unwillingness to meet legal duties at local government level can lead to a situation where parents are simply not allowed ever to leave their child – not even when trained carers are present. Carers assessment – where done it properly – can hold a key to providing parents like us very needed help to occasionally remove themselves from their caring duties and do something just for themselves.

So what can you ask for? Co-incidentally, after months of pushing for it – and for the very first time since Freya was born – we had ours done last week.  We asked for residential respite for Freya in a children’s hospice so that us parents could sometimes go away for the weekend. We asked for two evenings a month that we could go out to the cinema or for a meal, just the two of us. And I put down a marker recording my hope to return to work at some point – something that is completely impossible with our current care arrangements for Freya but something that the Local Authority is under a positive duty to help me with.

And the outcome? Somewhere waaaaaaaaay down the line. The social worker who came around at least made all the right noises and expressed some deeper understanding of the difficulties that families like ours face by agreeing that we needed some time off. Whether it leads to anything I’m not sure. But it was refreshing feeling like I was listened to  after months of being subjected to brain farts of Haringey CCG officials telling me that I was being unreasonable expecting to ever be allowed to leave the house without a toddler in tow to questioning why I wanted to have trained people looking after Freya as if I looked after her during the day, I might as well have same degree of responsibility also at night.

Are you a parent of a chronically sick or disabled child or do you look after a loved one? Ask for a carer’s assessment from your local social services – the website above gives you all the details. Think what would help you in your day-to-day life and ask for it. Whatever anyone says wanting to take an occasional break from caring for your child does not make you a bad parent. It makes you a human being.

P.S. We wish you all a very Merry Christmas and happy 2018! Our Christmas preparations have been side tracked by this winter bug but we hope all be recovered to enjoy some fun times with our friends and family in the coming weeks. We hope you all have a peaceful, drama free and love filled holiday season.

P.P.S I am preparing to blog about what it is like living with a child with a tracheostomy in different countries. I have already received some feedback from couple of international mommas, but would be interested to hear from others. If you have a child with a tracheostomy and would like to share your story please give me a shout!

4 thoughts on “Who cares about the carer? Leave a comment

  1. Hi Just read this post. I am a mum to a 14 year old boy who has just been decannulated after having a tracheostomy for the past 13 years. His trache was for ventilator support and then bipap. We are based in New Zealand and I have had to fight so hard for supports for our family and still and I am amazed at the differences each family gets based on where they live and how hard they advocate or research. Please contact me if you would lime to hear from someone who has been travelling this path for sometime now. Thanks


    1. Hi Cherie, thank you so much for your lovely comment! I just saw it! I am actually writing a blog entry on how care of trachy kids differs in different countries. Could I send you some questions? It would be so interesting to hear how things work on that side of the world!


  2. Hi Absolutely!! I would love to do this, it is one of the topics close to my heart as I wonder how less resilient mums make their way through what we have. I like to think I am a pretty strong and independent women, with strong relationships in place, but sometimes this can mean others don’t see how much you are hurting. I have read quite a bit of research on this topic and would love to make a difference for others who face journeys similar to ours in the future. The differences are unbelievable, even here in NZ and Australia. Cheers Cherie


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