Happy Carer’s Week to all my fellow carers – it’s our week.
Though we say Happy Carers Week, sadly, we won’t get a badge, balloon or pay rise but we will at least get some recognition in the media of just how hard it is to care whether that is on a professional basis or for members of your own family. I have done both and I tell you it’s the hardest role in the world.
Not that any of us will of course moan about this new role – indeed most of us who have had children or partners that have fallen ill take to caring not out of choice necessarily but out of necessity. We don’t talk about how difficult it can be often enough. Society doesn’t let us – if you have given birth to a child who is disabled, we live in the land of the grateful – a bit frightened to moan that taking care of little ‘Jimmy’ is totally exhausting but we know so many of his little friends are no longer with us who would delight getting up twenty times a night to sort out their feeds, bottoms and soothe them that we are rather frightened to admit that sometimes its hard. That’s why we have carers week.
I have been a heart mum now for 22 years and I am forever grateful – today another 12 people in this country will hear those fateful words ‘I am sorry but there is something wrong with your child’s heart’ and if you add that to those who will realise that perhaps something is not right with their child there are quite a few of us out there. So, in celebration of those parents out there joining our ranks – here are a few things I have learnt from my journey as a carer along the way.
Being grateful all the time, exhausting.
Yes, its fine to be grateful particularly if your child has a life-limiting condition that they are still with you but it doesn’t mean that its not pooh! (Other more adult words are available). It is okay to sometimes admit that it’s hard. You don’t love them any less.
Find yourself a team.
A lot of the internet support groups can be wonderful for this. Especially when its 11pm and your child is doing something unexpected – most of them will tell you to call 111 when you need to – and although they are not medical, having someone tell you that your own instincts are to be trusted is just what you need. You don’t need to meet these people in real life but if you let them they will become your closest friends and allies. I don’t know where I would be without mine. They are my dearest friends and I have only met half of them in real life. You may find a connection using the hashtag #Carers Week or perhaps there are ways to meet out carers via the National Carers Week Website
If you are religious – pray if you are not – send positive thoughts.
If someone is having a tough time and they have written something on social media answer them with more than a heart. (Personally, I dislike the hearts) I have a friend that I deliberately wind up by sending her the odd heart because I know she feels the same way that I do. A quick few words on a post makes all the difference, it’s the human connection. Being a carer can be lonely – finding time to have real, physical relationships might not be possible, online friends however only take a few moments a day but can make an awful lot of difference to the way you feel – particularly if you make meaningful connections with happy, positive, funny ones.
If you like poetry ‘welcome to Amsterdam ‘is a must.
It’s part of the initiation into the secret society of parent carer – someone will eventually send you this beautiful poem. Again, not too keen on it myself, mainly because when I entered this world I was at least on the shores of Sardinia before being sent back to Holland where I rapidly found that the beer was too weak, the clogs were too small and the cheese just had holes in. It took me a year of ugly sobbing each night wondering ‘why me’ before I saw any tulips.
Getting your finances right takes time.
If you child is not like other children – consider making a claim for disability living allowance. DLA is a wonder pass to all sorts of other things. Check your benefits on a calculator often when things change – every penny counts, particularly if you must stay at home. If your child has a life limiting condition, you might also want to look at the different charities that offer dream holidays – but get the timing right on these. I know lots of people who had their ‘dreams too soon’ and would rather have gone somewhere when the child was older. We can help with these aspects and put you on the right path, don’t wait, get in touch.
Anger is not a useless emotion if you use it right.
Alas you will ‘grow what you need’ when it comes to your child. I was the meekest, mildest person before my son was born who literally wouldn’t argue with anyone. However, there are a lot of issues with a medically complex child and a lot of people are quite happy to let that child ‘ride’ or not do everything that the child needs. You do get angry, channel it isn’t something productive when you need to. You are going to have to fight sometimes for their rights. If you need help with some of these things, we can help at Citizens Advice East Devon.
Do something for you?
If spa days are not your thing, why not do something productive? Like volunteering? Like animals, go and spend some time at the local shelter petting cats, like kids? Go and volunteer to listen to readers at the local school. Spend time being yourself rather than just someone’s Mum. I came and volunteered at the Citizens Advice East Devon for purely selfish reasons, I knew how difficult it was getting through the minefield and mazes of benefits and school etc with my children and wanted to help others. but also I wanted to be reminded that there were other people in the world finding their journey a bit tricky in places as well. It was the making of me. It might be for you? Click here to go to our volunteering page or here to read some testimonials of our current volunteers.
There are plenty of single parents on hospital wards.
Protect your relationships if you can. Talk lots, act less. Don’t go to bed on an argument. If you have money worries get help as early as you can (you can even get help from us before you miss the first payment). There is no shame in admitting that you can’t do it all. We have lots of ways that you can contact us and we will be there for you. Our debt team don’t care about your little amazon habit or the fact that sometimes you have a little flutter to take your mind off your worries when there is an appointment coming up. It isn’t our role to judge, just help. Talking to us might just help save your relationship and if it doesn’t we can help you split amicably as well so that is one less thing to worry about.
Don’t cry for too long.
If life is a rollercoaster – when you’re down it’s easy to get into depths of despair and stay there. If you do find yourself here – go and see your GP for help. There is lots they can do. I allow one hour to wallow a day and I set an alarm to go off when it has finished. Sometimes, getting up might be your proudest achievement so go make your bed then you’ve done something. Remember, one wrong day doesn’t make a week, recovery is never linear. When it gets too much and you can’t cope thinking about tomorrow, take a breath to the next hour.
Why me? Why not me?
Quite often these thoughts creep into the mind of the newly diagnosed. Statistically if someone has a 1 in whatever chance of getting something – someone must be the 1. Take the lottery we all hope to be the one who wins even though the odds are millions to one. Just like some win the lottery, some will be that one to get diagnosed with something life changing.
Changing your mindset to why not me? Really helps and if you have days that are your nemesis because you remember the difficult things that happened on that day – this was the day that my child had surgery and was ill – again instead of thinking of this as the day your child nearly died .. it is the day your child lived – really helps. You are still going to have your odd moment when thoughts of ‘is this the last’ creep into your head. That glass of wine or cigarette before a positive test did not do this to your child – its just statistics. And even if it was caused by your behaviour – forgive yourself, your life is not a punishment.
If you can, pop over to the National Carers Week website, it’s full of helpful information & resources.
So again, Happy Carers Week. Take a moment for yourself and acknowledge how amazing you are.
♥ We Care Because You Matter ♥