Hospice time we receive is limited

There is very much a theme about the role of carers going on in blog land this weekend with two fellow bloggers inviting posts to highlight life as a carer.  The timing was great for me as this weekend I’m on my own, Andy is away working in the States and I am at home with all four children.

This is hard work.   Today I have changed 7 stoma bags, 1 catheter, I have given two intravenous medications, disconnected an intravenous drip, put a new drip up, administered countless enteral drugs, carried my daughter upstairs in order to bath her and then carried her downstairs to her bedroom and the list goes on…Factor into this the needs of the three other children then preparing meals, laundry, shopping, homework, there is very little time left for me.  I survive on coffee and chocolate and the children’s left overs.  It’s why I go running, it actually gives me a break and I’m itching to get out running this weekend but can’t because I’m on my own and Daisy cannot be left with anyone other than a trained carer, and that’s only when she doesn’t have her TPN running (when her drip is connected she can only be left with Andy or I or a qualified nurse).

I received a letter this week from the Department of Work and Pensions – I was overjoyed to learn that there has been a rise in Carers Benefit, I am now going to get £55 per week to do what I do.  Appparantly I can earn up to £100 a week without this payment being affected. However as all my waking hours and many of my non waking ones are taken up with caring or the paperwork and admin that goes with caring (those stoma bags and catheters won’t order themselves, nor will those forms be filled in by anyone other than me or the laundry get done or appointments get arranged and attended…)  the chances of me doing any sort of paid work, meaningful or otherwise are out of the window.

I do it because I am my children’s mother, I didn’t anticipate the extras that would come with  the job of parenting, namely the additional needs not in the standard mother job description.  I didn’t expect to be still changing nappies 7 years after giving birth to my last child or carrying her up and down stairs to bathe her.   I didn’t know that while I have one that can’t eat I would have one with unique food requirements which means that I can feel like a short order chef on occasions. I didn’t anticpate the ongoing broken nights or the impact of teenage hormones on a boy with aspergers.  But that is the package that I have , the one that makes our family. Yes it’s not in the job description and it wasn’t in the plan but this is how it is.

What I hate however is the lack of value placed on my role, I’m not just a stay at home mum, I’m a healthcare professional, I’m a psychiatrist, I’m a teacher,  I’m a physiotherapist, I’m a dietitian, I’m a nurse specialist, I’m a pharmacist – I have unique skills which are keeping my youngest daughter out of hospital and safe and keeping my oldest son on the straight and narrow.  I am saving the taxpayer money, so is it too much to ask for a break occasionally?

Every council has a short breaks service for carers, it all looks very good on the website, ticks lots of boxes, but I checked out our council short breaks service this week to see what it would offer me.  There are no short breaks for families like ours, there is a respite centre but this is not for children with medical needs or high functioning autism and certainly not for a child on TPN, there is short term weekend foster care in a family setting but Daisy has a family and there is no way our medical team (or us) would allow a non medical person to manage any of Daisy’s care.  Which as always brings us back to our hospice, without them we would not get any break – our nearest family members are 300 miles away so the hospice support is our family.

But hospice time we receive is limited, we only get 15 nights a year to use either as day visits or overnight stays or visits in the home, and we didn’t have any spare nights available for this weekend, so I’m relying on the children to co-operate and help out and we’ll plod on like we always do.

I wrote a blog post in January last year about whether David Cameron would keep his promises to carers (http://suburbansuperwoman.blogspot.co.uk/2011/01/i-had-phone-call-at-11pm-last-night.html) and to be honest nothing has changed, if anything it’s got worse, the mantra from the professionals continues to be that there is no money.  However my experience is that there is no joined up thinking, there is no team around the child.  Instead there is bickering between the teams and organisations who are supposed to help on who should fund what.

I must take my hat off to our social services team, they are funding more for Daisy than they should given her complex medical needs, and the raspberry goes to our Primary Care Trust (Healthcare authority) who constantly try and get away from paying for anything and cutting what they have to pay.  In the meantime we are stuck in the middle of it all , trying not to upset too many people incase they are the ones who are going to make decisions on our care and support package.

This is the life we have chosen, we all have choices, even when it comes to whether or not we care for our sick or disabled child, but I just can’t help thinking that an employer would not expect a member of staff to work the hours carers work, take the risks, do the lifting and carrying, multitask as much as we do.

I wonder if anyone has thought to challenge the government on whether, by not providing and funding appropriate breaks and respite they are breaking the working time directive http://en.wikipedia.org/wiki/Working_Time_Directive.

I’d love to test it out, but frankly, I’m just too knackered!

http://suburbansuperwoman.blogspot.co.uk