Waker upper, dresser, breakfast maker, medicine giver, brew maker, employee, role juggler, house tidier, listener, dedicated driver, problem solver, sleep sacrificer, night watch person. This list could go on and on.
These roles define just some of a carers duties in a typical day. You’ll notice I used a Beatles song as the title of this blog, other songs of theirs that could’ve be used are ‘Eight Days a Week’, ‘Day Tripper’, ‘Fixing a Hole’, ‘Getting Better’, ‘Good Morning Good Morning’, ‘A Hard Day’s Night’, ‘Help’… You get where I’m coming from!
This week is Carers Week, an annual campaign to raise awareness of caring, to highlight the challenges unpaid carers face and to recognise the contribution they make to families and communities throughout the UK. It also helps people who don’t think of themselves as having caring responsibilities to identify as carers and access much needed support.
This years theme is to Make Caring Visible and Valued.
Who is a carer?
A carer is someone who provides unpaid care and support to a family member or friend who has a disability, illness, mental health condition, or who needs extra help as they grow older. It isn’t someone who volunteers or is employed to provide support.
For those of you that may not have read my blogs before our son, Alfie was diagnosed with Duchenne Muscular Dystrophy, a progressive muscle wasting disease in 2018 at the age of 3. It’s a life limiting illness that has no cure. Some people may think the term life limiting means that Alfie may not get a regular 9-5 job or he may be limited in the things he can do when he gets older. The harsh reality and one that we as parents we carry with us every second of every day is that life limiting means that person is expected to die prematurely. We’ll help him every step of the way to achieve the unachieveable that’s for sure and he is very resilient so that will stand him in good stead in the years to come.
As both myself and my wife, Louise are carers for Alfie, I thought I’d share a snippet of a typical day in our lives as his carers.
Alfie’s an early bird. He’s always up with the lark! For instance, a couple of weeks ago he was wide awake on three consecutive school days at 4.30am, 5.10am and 5.00am. Once he’s up, he’s up there is no going back! He’s not naughty or having a meltdown. He’s simply just looking forward to the day ahead, which is great and something we wouldn’t change but just not great at that time in the morning (or should I say in the middle of the night!!)
Our 8 year daughter, Mila-Rose is a little worrier. She gets very upset leaving us in the morning due to separation anxiety. Something which has escalated recently due to shielding during the first lockdown and homeschooling during the winter lockdown. She often doesn’t go to sleep until 9/10pm so in the mornings she’s that tired we end bearing the brunt of her grumpiness!! Sometimes it’s simply a big Mummy/Daddy cuddle that can fix the problem but other times it’s tears until the drop off at school. Thought: Maybe that’s why I have tinnitus – another problem that drives you insane!!!
From reading the above you can see that the mornings don’t start off that straight forward and generally that’s 5 days a week! We’ll generally get the kids dressed first then they’ll have their breakfast which follows with Alfie having his daily meds (10mg Prednisolone). We’re out the door by 8.30am on the school run. Once they’re dropped off at school, Louise will drop me off at work. Now most people would use this as a time to switch off and go into work mode. When you’re a carer and also the main breadwinner that’s not really possible. You never really switch off, you’re either worrying if they’re both ok at school, if your wife is ok or you’re worrying about the next pending hospital appointment. Somedays, I’ll suddenly find myself trying to remember if I gave Alfie his medication.
I didn’t but Louise did, I’d think to myself? Better call her to check! It’s simply that you have that many things going around your head that you can doubt whether or not you’ve done something. Throw in a problem at work and you feel like you’re going to have a nervous breakdown there and then. It could only be the slightest work issue but sometimes it can be just enough to tip you right over the edge but somehow you manage to battle through it albeit with difficulty.
Louise works Tuesdays and Thursdays so on those days I’ll leave work at 2.45pm to scurry across to pick them both up from school. Add in another stress if you get stuck in traffic! Alfie can get fixated on things and if he gets it into his head that he wants to go somewhere after school we have a battle on our hands just to get him in the car. He’s a stubborn little monkey at times and if this scenario arises it can take up to half an hour to get him in his car seat! Once they’re picked up, it’s off home to get them changed, give them their tea before we’ll go back out again to pick Louise up from work at 5.30pm.
We’re home for just before 6pm then the bedtime routine starts. Bath time, PJ’s on, reading time, physio stretches for Alfie then they’ll both have some milk. Alfie wears night splints to help stretch his muscles whilst he’s sleeping so we’ll put those on and get him settled. He usually goes to bed at around 7.30pm and generally because he’s been up for so long he’s usually out like a light! Sometimes that also happens to myself or Louise when we’re lying with him! Wake up at 11pm not knowing what day it is!! Alfie did go through a period where he would have a meltdown for 1-2 hours at bedtime but this has now stopped as he takes melatonin, a supplement that quite a lot of boys with Duchenne take to help them settle at night.
Mila-Rose however is just waking up! We’ll take her up around 8pm but we’ll have frequent living room visits from her after that saying she can’t sleep or to give us another goodnight kiss! She just needs a bit of reassurance now and again that everything is going to be alright. This then means if we’ve not managed to grab something to eat earlier then we’ll be dining sometimes as late as 9.30pm. A quick fix meal and as you shovel it down quickly (indegestion to follow no doubt!) you realise you’re not quite eating as healthily as you’d like to be.
So as well as our caring role, we’re holding down our jobs whilst never really switching off. Occasionally we just want a bit of an evening to ourselves maybe to get stuck into a boxset without falling asleep and waking up on the couch at stupid o’clock! The knock on effect of this typical day is that we’re absolutely knackered by the middle of the week! Both physically and mentally. It feels like our days are lived at a 100mph pace. Some days it really is a struggle to get out of bed and motivate yourself.
I’m not writing this because I want your pity or for you to feel sorry for us. We never ever thought we’d ever be carers, especially for one of our own children. You don’t choose to be an unpaid carer, life chooses you. We’re very lucky as we have fantastic family support to give us that little bit of respite. Other carers are not so lucky, they have it much much tougher and could be caring for someone round the clock – day in, day out. No respite and sometimes no one to talk too. Imagine how lonely and isolating that would be? Throw in the pandemic situation and a carer could be simply cut off from society.
Local Carers Centre
We are registered with Wigan and Leigh Carers Centre who provide fantastic support for carers. They host lots of events and activities for the young and the old but unfortunately for me these mainly take part in the daytime so I’m unable to attend due to being at work. At the Centre, they support both young and adult carers to recognise their own needs, have their voices heard, help with their physical and mental wellbeing and ensure they are fully understood, valued and supported in their caring role. As well as supporting us on numerous occasions they also helped to get us registered with our GP’s as carers and we were told that we would get an annual health check.
I recently had my Carers Health Assessment over the phone with the Nurse from my local GP. It lasted all of two minutes! I was asked the following questions…
Did I Drink?
Did I Smoke?
Did I have a Blood Pressure machine?
No questions were asked about my wellbeing, my mental health or if our family required any support or direction. Personally, I think Carers deserve more time than a couple of minutes on the telephone, the support has to be available from every angle possible in order to gain an insight to the Carers needs.
I feel that it’s also vitally important to know how the health and wellbeing is of the Carer. The carer is often the most important, if they aren’t 100% then how can they fully carry out their duties for the person they’re caring for?
We’ve had our battles in the last three years, we tried to get a social worker on board to help us manage our caseload but she just said you’ve pretty much covered everything yourself and there is not much more I can do for you at this time!! Luckily, we’re proactive in getting the right support at the time that it’s needed but sometimes not without a fight. We had a 2 year battle to get an EHC Plan for Alfie, we’ve had to decide whether to put him on daily steroids or 10 days on, 10 days off steroid treatment, we’ve had adaptations done to our home but have had to fight to get it the way we wanted it to be. We are trying to build the best future for our family but some carers simply won’t have the time or the energy to manage these things to get the support they require.
Caring however is also hugely rewarding and I do believe it has made us better people. What we have been through in the last 3/4 years has certainly made us stronger, I now always refer to the term, “You never know how strong you are until being strong is the only choice you have.” Being a carer can also have an impact on other aspects of your life ie. your marriage – you’re not always on the same page in terms of decision making and that can bring added strain. We may look like we’re always coping and going about our everyday duties with a smile on our face but the cracks are there. They’re always there. At times, you simply just wish you could have a ‘normal day’. A day without something to juggle or spinning round in your mind. You lie in bed at night wondering if you’ve made the right choice or the right decision, for instance in regards about Alfie’s medication. You’re constantly questioning yourself.
We’re constantly told to take care of our health and wellbeing but it can be hard to find the time to meet your own needs. Sometimes we struggle to sleep well or find time to exercise. Managing our stress levels is also a struggle, you find yourself shutting down and a simple problem can escalate into what feels like a big problem. Then something else will be thrown into the mix and they just pile up.
You can also feel lonely or isolated as a carer, especially as some people might not realise just how tough it can be. They can say that they understand and you know you’ll always have their support but until you’ve lived it 24/7, 7 days a week then only then would they realise what you’re experiencing.
If you’re a family member, a friend, an employer, a colleague of someone you know who has caring duties, why not just simply ask them if they’re ok and if they’re getting the right support. Maybe they just need a listening ear or someone to talk to about their life away from their carers role. The smallest things can sometimes make the biggest difference.
It could just help to make them visible and most importantly, feel valued.
Well done to every single carer out there. You’re doing an amazing job!