Parenting · Politics · Special Needs

Is this early enough for you Taoiseach?

Good morning Taoiseach, its a few minutes after 9 am and its an average week day in our house which means that I’ve been up since 6.30 am.  I’m not sure if I’m the kind of person you had in mind when you said during your campaign to become leader of Fine Gael that you wanted to lead a party for people who get up early in the morning but here’s what I did this morning after I got up early.  (Well, 6.30 am is early as far as I’m concerned)

So the alarm went off and up I got, gathered my clothes and crept downstairs clutching the video monitor that sits by our bed.  We have a video monitor because our 10 year daughter has epilepsy and sometimes – thankfully not often – has seizures during the night.  You’re a medical doctor, so you should have some idea of how scary epilepsy can be.

You see Dr Varadkar, that little person is why I get up at 6.30 am on weekdays.  She has significant physical and intellectual disabilities and she attends special school.  We live in the north of the constituency of Meath West and our daughter has to travel to Navan in the middle of that constituency to go to school.  I’m talking in terms of constituency rather than counties or towns because I get the feeling that like most politicians you are more interested in votes than voters.  Her school bus collects her here at home at 7.45 am and then travels around collecting other pupils for the two special schools in Navan before she gets to school a little after 9 am – about the same time I started writing this post to you.  The journey door to door is 26 miles which should only take around 35 minutes but because we choose to send her on the bus it takes 1 hour and 15 minutes.  She’s only 10 and she’s been doing this since she was 5.  You might wonder why don’t I drive her in?  Yes, I could.  But Navan is already choked with traffic in the mornings and if I and the approximately 70 other parents whose children attend her school and travel in by bus all drove our children to school, can you imagine the chaos?  Never mind the extra traffic pollution.

But I digress, sorry for that Mr Varadkar but like every other carer my mind is constantly running trying to keep on top of everything.  Appointments, therapy sessions, equipment, etc etc etc.  Where was I?  Oh yes, what I did after I got up at 6.30 am.  Well I came downstairs, took a load of washing out of the machine and put another one on so it would be finished before the cheaper night rate electricity finished.  Every cent counts.  Stuck the first one in the dryer because it was raining here.  Then prepared some food for my daughter to take to school because she was quite ill earlier this year and her appetite is still not great so sometimes she won’t eat the dinner she gets at school.    Got her breakfast ready and swallowed down a quick bowl of cereal myself before heading back upstairs to waken her at 7 am.  She’s only 10 and she needs her sleep so that’s why I don’t get her up earlier.

I was tired last night so I had forgotten to leave her school uniform ready on the chair in her bedroom.  It only takes a minute to get it out of the chest of drawers but every second counts here in the mornings.  So grab the clean (at least I managed that bit!) uniform and wake her up.  She’s very wobbly first thing in the morning because her neurological condition (apart from the epilepsy) affects her balance and its especially bad when she wakes.  So while she’s waking up and starting to chat to me I leave her lying on the bed, take off her pyjamas, change her nappy and put on her trousers, socks, DAFO’s (splints for her feet) and shoes.  Then I help her sit up and change her vest then put her polo shirt and sweatshirt on.  Yay, she’s dressed and its only 7.15 am.  Then lift her from the bed and carry her downstairs.  She can get downstairs on her bum with help but she’s too wobbly first thing to do this, so I carry her.  By the way I’m only 5ft 2.

Into the kitchen and put her into the special chair we bought for her so she can sit comfortably at the table and eat with us.  Her breakfast is ready but first she has to have the two epilepsy medications she has in the morning.  She doesn’t really like taking them but she is a good kid and she swallows them without complaint.  She tucks into her breakfast.  While she’s eating I write a note to her teacher in her communication book because she only has about 70 words and a few phrases, none of which are expressive language, so this is how the teacher and I let each other know anything that’s going on with her and what she did at school each day.  She can’t tell me herself you see.

Its now about 7.30 and while she’s still eating – she’s a slow eater – I gather hair band, brush, hairslides, toothpaste, toothbrush, flannel and get ready to spruce her up.  She’s not able to do anything of this for herself but it all has to be done.  Like most 10 year olds she’s not keen on face and hand washing but we get through it with minimal grumbling.  All the while I’m chatting to her using repetitive phrases and words about school and the people she will see there as this is a big part of how she learns.  So there’s a bit of speech and language therapy thrown in early for good measure.

7.43 and the bus isn’t here yet – phew I’m ahead – help her walk to her wheelchair and climb into it.  Put her coat on, make sure she has everything in her schoolbag for the day and then the bus pulls up.  Grab a marker pen and a piece of paper that she likes to hold in her little hands while travelling for 1 hour 15 minutes to school.  Wheel her out to the  bus, have a quick word with the bus escort so they know what kind of form she’s in today.  Kiss my most precious girl goodbye and wave her off.  Its 7.48 and I’ve been up for over an hour.

Back in the house grab my phone, headphones, rain jacket, hi-vis vest and key and head out the door for a 5km walk.  I don’t especially enjoy it so I listen to podcasts on my way round to alleviate the monotony.  I need to take regular exercise because I’m overweight (many carers tend to be, we comfort eat you see) and my back isn’t great from lifting my daughter over the years.  I can’t afford to join a gym and walking is free.  Maybe one day I’ll get fit enough to join you for a 5km jog in the Park?

While I’m pounding the paths around Oldcastle I’m thinking about a tweet you posted a couple of days ago.  You see, that comment about people who get up early annoyed me. Actually more than that, it felt insulting to people like me who have to get up early to do the unpaid, unappreciated, unvalued work of being a carer.  I’ve tweeted about it a few times but when you put something like this up it really feels like you are just taking the piss not to put too fine a point on it.

People who get up early

 

 

Special thanks to @kloczbyjos in Glanmire for this thoughtful gift. New small craft business supported by Local Enterprise Office pic.twitter.com/JcDE2eALXj

I’m not sure if you were being facetious or if the people in Glanmire were but its clear to me and other carers like me that this State, of which you are Taoiseach, that our WORK (and it is work) is not taken seriously.

I’m up since 6.30 am Leo.  I’m tired already and its only 10.15.  Its a mental tiredness that comes from being a carer, from the never ending round of appointments, therapies, from wondering if she’s ok at school today, if she’s had any absence seizures.  It comes from fighting for equipment, for school transport, for better services generally, from trying to help other parents who aren’t as far into this life as we are.  It comes from knowing that this will not stop.  It comes from knowing that the Irish State of which I am a proud citizen does not care about carers. And that’s a very hard place to be.

What time did you get up today Taoiseach?

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Parenting · Politics · Special Needs

Minimum wage to go up but not if you’re a carer

Today (July 18th) our Cabinet welcomed a proposal based on a recommendation from the Low Pay Commission to increase the national minimum wage by 30c per hour from January 2018. It is believed that around 120,000 workers will benefit from this increase. This is very welcome news. But what of those in our society like me who work yet are not employed, who are deemed unavailable for employment yet have to work to receive any benefits, who work long hours with no training and immense stress yet have no rights with regard to our work? I am talking about carers.

Yes, carers. Those ‘selfless heroes’, those people who give up their careers (or at the very least put them on hold) to care for a loved one, those people who save the State an untold sum every year, those people who administer medication daily, who sometimes have to literally save a life. Those people receive in Carer’s Allowance at the most €209 per week (if they are aged under 66 and caring for one person). Yes you read that correctly, €209 PER WEEK. For a 39 hour week (the average full-time working week) that is €5.35 per hour. The minimum wage before the proposed increase is €9.25 per hour.

However, no carers work just 39 hours per week. On the Census form this year I stated that I provide care to my daughter for 168 hours per week. (That’s 24/7) You might quibble about this – what about when she is asleep? Yes, but I’m still keeping an eye on the video monitor in case of a seizure. What about when she’s in school or in respite? Yes I do indeed get a break then, but I’m still on call. At any time while she’s away I can get a call telling me she’s had a seizure, or is unwell in some way. Even if no such call comes (and thankfully they are fairly rare), I spend a sizeable portion of that time sourcing equipment for her, reading up on her condition (the carer’s version of Continuing Professional Development?), dealing with what seems like a never-ending stream of paperwork…….. you get the picture.

So if a carer gets the full amount of Carer’s Allowance (€209) for a 168 hour week, that’s €1.24 per hour. Yet not all carers get the full amount because its means-tested. In my case, I get €66.40 per week. Based on my self-defined hours of 168, that means I get 39c per hour. I personally know a number of carers whose means are such that they do not receive any Carer’s Allowance. That means they either have independent means deemed sufficient to support themselves, the person they care and any others who might live with them, OR the State has decided that their partner or spouse has sufficient income to support them. This renders the carer financially dependent on their spouse. I resent that the State forces me into a financially subordinate position.

I don’t know how many people are in receipt of Carer’s Allowance, so therefore I don’t know exactly how much it would cost the State to increase Carer’s Allowance by 30c per hour, the same amount as the minimum wage is to be increased by. I do know that being continually forgotten by the State (apart from during Carer’s Week when they can’t tell us enough times how great we are) adds to the very high stress levels that carers experience. None of us asked for this job. None of us want this job. But we do it, every day, week in week out and we will continue to do so. We do it because we have no choice. We do it out of love. But that does not give the State the right to ignore us and pay us a pittance.

Parenting · Politics · Special Needs

As a carer I hate

A month ago I was having an especially bad day and in a need to vent but with a thousand other things all demanding my attention and/or headspace at the time, I couldn’t sit down at my laptop to let it all out. So I tweeted a list of things that were in my mind at the time, one after the other, it took me maybe 20 minutes. The lovely Candi over at oftencalledcathy put them together in a meme for me and encouraged me to elaborate so here goes.

Being told by well-meaning people to ask for better services (like just asking will make them appear)
An example of this, from my experience, is “why don’t you just ask for more respite?” Gee, that has never occurred to me before! Never mind the fact that so many services are stretched to breaking point. Never mind the fact that our respite service caters for over 70 families and is not open 365 days a year and tries to group the children attending together in terms of age and ability. Add to that the fact that they cannot have too many wheelchair users at the same time (fire regulations etc.) and our daughter is a wheelchair user. Also, I know many of the other families who use the service and I know how desperately they need a break too. But hey, yeah sure I’ll ask. This kind of comment doesn’t help.

Being asked why I get Carer’s Allowance when “you’d be at home minding the child anyway”
Oh where to even begin with this one which I’ve had aimed at me online many times. Caring for a child with disabilities is so much more than just ‘minding the child’. Its doing physio, speech & language therapy, occupational therapy, attending numerous appointments, administering medications, dressing, feeding , toileting a child who cannot do this for herself yet but is way older and bigger than most children who need that kind of help. Actually, I’m not going to dignify this one with a response any more. Jog on.

That it makes me financially dependent on my spouse
I’m struggling to find the words to describe how this makes me feel. Its not a bone of contention between us, but its not a position I ever wanted or intended to find myself in.

Being referred to as brave or selfless or a hero. Meaningless platitudes or to put it another way, bullshit
I know that one’s going to annoy some of you. Well, just stop and think why you might say that to a person like me. Is it going to help them in their caring role? No. Will it make them feel better? For some, maybe. It doesn’t for me. Does it make YOU feel better when faced with a scenario/life that you could never envisage or imagine having to live? Ah now maybe we are getting somewhere. You see, and again this is just my opinion, none of us family carers chose this role. That doesn’t make me a hero. I have no choice but to do this. But by telling yourself and me that I or others like me are brave, does it make you feel a little bit better that you’ve said something nice and encouraging to the carer? If you really want to make me feel better or cope better do something practical. Or something political. Keep reading.

Not being taken seriously by the State
If we and the work we do as family carers were taken seriously by the State we’d be better paid (see next point) and we wouldn’t be expected to work in the conditions we work in. We’d get full pension rights (another thing that causes me stress about my financial dependency), and automatic medical cards. No, carers don’t automatically get them, so anytime I need to see my GP its €40. There have been times when I’ve not gone to the GP although I probably should have.

If all the family carers in the State went on strike the country would collapse. If we all stopped doing what we do, the caring, the feeding, the lifting, the administering of medication, the physio, the therapies, the researching of new equipment and ideas to help your child achieve their fullest potential, the lobbying of politicians and State bodies, the toileting and all the other things we do and left our loved ones at A&E’s, respite centres and schools around the State, then our over-stretched services would disintegrate completely. But we won’t of course because we love our children and those we care for. And I really mean that, we do love them with every fibre of our beings. The State knows that and it knows we will never down tools and this allows it to abdicate their duty of care to its citizens.

That the Carer’s Allowance is means tested. I get €66 per week or just over 39c per hour
Being a family carer is not a 9-5 job. Its 365 24/7, because even when she is at school or in respite or asleep, I’m on call. I’m trying to make our house more suitable for her to live in as she gets bigger (and we get older). I’m reading up on different medications and therapies, and wondering if they will work better for her. I’m attending workshops and information sessions on various disability issues. And for all of this I get 39c per hour. Its means tested which means that my husband’s income is assessed as are our outgoings. You sometimes hear politicians defending the rate of Carer’s Allowance and pointing out that its €209 per week. Yes it is, IF you get the top rate but many of us don’t yet we do the same work. Is this an equal pay issue I wonder? There are also a large number of family carers who – because of the means test – do not receive ANY Carer’s Allowance. How is this ok? (If you’ve spotted a difference between the amount I get and the amount on the meme above, we got a €5 per week pay raise last month after the meme was made.)

Feeling that I have to justify myself and the work I do. And it IS work, done out of love yes, but still work
And I’ve just realised that this blog post is doing just that……

That we carers have to share our private family lives on national media to get help
I’ve done this a bit myself, not in any great detail. But how is it ok that the mum of a profoundly disabled child had to go on TV last month and talk in quite intimate detail about the realities of caring for her son in order that she can raise the issue of home support services? I watched it out of solidarity and was interested to see the amount of people on Twitter saying how terrible it was (yes, it is) and how sorry they felt for her. But I didn’t see anyone questioning was it ok that she had to go on national TV and say this stuff. What does this say about our society that we don’t have a problem with people being almost forced to forgo all sense of privacy and dignity in order to fight for services? I don’t have the answers, but it makes me really uncomfortable.

That I have to worry NOW about services for my daughter when she becomes an adult which is not for over 8 years
She will be 10 this summer and I’ve attended a few workshops and information sessions on adult services over the last year or so. I didn’t really think anything of it until a friend asked me what was this next meeting about and I explained it was about adult day services for people with intellectual disabilities in Meath (where we live). She looked at me with a mixture of shock and disbelief and said “why are you going to that when she’s only 9?” And you know what, that really hit home. Over the last ten years I’d gotten so used to having to research and investigate what services are out there that I no longer gave it a second thought. But I should not have to be thinking about this now, I should be enjoying her childhood, secure in the knowledge that there will be appropriate day services and respite services available for her when she leaves school. In 2025. But I’m not and that’s why I have to go to these meetings now so I can prepare myself.

That its very difficult for us to get out & march yet very few march with us
Its great to see people marching in huge numbers for issues that matter. Its heartening and reassures me that in this new post-Brexit, Trumperica dystopia we seem to be falling into that so many people still get riled up. But please, if you are reading this post or seeing things on TV or in papers about disability rights and carers’ rights, please join us next time. And ask your elected representatives why there aren’t enough respite homes or adult day services, or why carers get such an insulting amount of money …….. the list is endless. Because disability is not necessarily something a person is born with. People acquire disabilities every day. The 2011 census showed that 13% of the population of the State were living with a disability. That’s over half a million people. There are about 4.5 million people in this State, so the chances are you know someone with a disability or at least one of their close family members. Just think about that the next time you see something about disability online or on TV and you cluck your tongue and say “ah that’s terrible”. Next time, do something about it.

Advice lists of the things I should do to look after myself yet no one considers lack of time or money to do them
I’ve been tagged in loads of these. Generally the advice is to exercise more, eat better, make time to meditate or similar, develop interests and hobbies outside your caring role, make sure to spend quality time with your partner and have time with your friends. These all require time, in some cases money, and a support network. Not all carers have those.

Watching other carers in crisis and feeling so completely powerless to help
Its heartbreaking. And its frightening because I can never shake off the feeling that one day it could be me.

That I get no training in manual handling yet am allowed/expected to do untold irreparable damage to myself every day
That seems to surprise an awful lot of people, well in my acquaintance anyway. “What, you mean you’ve never had any training?” Training? Training on how to lift my daughter who has disabilities? No. Training on how to lift and manage her physical needs so I don’t hurt my back? Nope. So, no, as far as I can make out, family carers like me don’t get any training in how to care for our loved ones. Just think about that for a minute. My daughter will be ten years old in a few months. She is very slight for her age but has long legs (inherited from her Daddy). I’m 5ft 2in and carrying a few extra stone yet I am allowed, expected even, to lift and manoeuvre her in such a way that means I am doing untold and irreparable damage to my back and joints. In her school and respite service she attends, both of which she adores, there is absolutely no way this would ever happen. No way would one member of staff be allowed or expected to lift her in this manner, both for health and safety and child protection reasons. Yet I’m expected to.

The mental strain of it all. I don’t like the person I am at times
I’ve always been hot-tempered, fond of an argument and unafraid to voice my opinions. But I’m increasingly becoming less tolerant of bullshit and timewasters and I’m snappy at those I love. I’m mentally tired most of the time and that takes a physical toll too.

That I’m expected by some people to accept this is all part of some deity’s plan. Really?

If you want to believe that some deity made a decision to damage my beautiful little girl’s brain in order to meet some part of a bigger plan that’s up to you. I don’t believe that and I find the concept of a deity that would do that frankly quite terrifying. And for anyone reading this who doesn’t accept that some people think that, just ask yourself what other interpretation we can put on the words “ah sure he knows what he’s doing.” Or “everything happens for a reason.” I can’t see a reason why any supreme being would damage the brain of the most wonderful precious little girl ever. And if you think you know a reason why, keep it to yourself please. Your belief system is not mine and just because my daughter has disabilities, that does not entitle you to push them onto us.

That when we get respite some people tell us to go away for a few days when sometimes we just need to rest
“You should go away for a few days, put your feet up.” We’d LOVE to, sometimes. But that costs money and energy. (Booking, packing, travelling) Respite is more usually on weeknights and my husband has to go to work the next day so its not really an option. And sometimes we just want to chill in our own home, or catch up with some DIY or gardening or other stuff. So please, lose the slightly disapproving look and the “but you should be doing xyz” its our time, let us spend it how we choose.

That my child’s school is 26 miles away so even in an emergency its 45 mins to get there adding to stress
Just imagine you’ve had a call from the school, your child is ill/had an accident and they need you there ASAP. Your stress levels soar, its part of being a parent. Then imagine you have to drive three-quarters of an hour (because with the traffic that’s what it takes) until you see for yourself. Most parents thankfully don’t have to face this, but if your child attends a special school there’s a good chance your child (who can have really quite high care needs and in some cases can be medically fragile) will be that far away from you for a few hours each day. Just think about that would make you feel.

That I rely too heavily on food to cope even though I know it just exacerbates things
Caitlin Moran called overeating ‘the addiction choice of carers’, I think she’s on to something. When life is this stressful, anything that gives momentary pleasure or relief is irresistible. Food is so easy to use as it enables us to carry on with everyday life, in a way that severe addiction to drugs or alcohol can’t. And knowing that its making me feel worse doesn’t mean I can easily stop.

The knowledge that this will only stop when I die or if my child predeceases me. Knowing there’s no end to this
I can’t add anything to this. Its overwhelming so I try not to think about this.

That I can so easily type this out without having to think too hard
Its probably only the tip of the iceberg….