I don’t think we ever plan to take on the role of ‘carer’. When my son was born, I became his Mum, his care provider, the feeder and the security blanket. I thought nothing of cuddling him to sleep as that was his preference, and with everything he’d been through, he deserved to feel safe. So I’m a carer.
When Being a Mum Became a Little Bit More
I can’t remember when it changed, maybe around five years old came the question. ‘Are you his main carer?’ I am an unpaid carer who looks after my son, who has additional needs. I am not alone in this as my husband is his primary carer now. Being a carer full time, part-time, occasionally puts enormous pressure on our lives as individuals, as a couple and as parents. I carry around a great deal of guilt, should I be at home more, should I be working more, should I be spending more time helping him with his needs, should I be attending every course, workshop and coffee morning just to feel like I’m not alone because the one thing I’ve learnt it’s lonely being a carer or a caring team. You rely on each other a lot and only keep it within the family unit extended or otherwise. I also had this guilt of having to work, it’s a catch-22. I work to support my family but at the same time I need to support my family, so if flexible working helps then it’s what we have to do.
Who Wants To Spend Time With Us?
Honestly, who wants to spend any time with us! Yes, a day at the beach sounds fantastic until Thomas decides to have a meltdown, eat sand, not want to stay still for five minutes and that day suddenly becomes an hour or he decides that he’s not quite in the mood for the zoo so throws his body to the floor in front of the gorilla enclosure. It’s not that we don’t want Thomas to experience these things, but our lives are so much different. It’s also hard to watch your friends child running around a park, doing normal things. We shouldn’t judge the ‘normal’, but we all do it. As much as friends or family say they get it. It’s hard unless you live it!
What’s A Night Out?
I can’t remember the last night out I had! Like honestly, I think it was some time back in 2018 (I’m not even joking), 61% of carers have suffered ill health physical or mentally due to their caring responsibilities. I still shrug when people ask ‘but you get help, right?’ I’m not exactly sure what people expect me to say ‘that I have a full time paid nanny’ that we get thousands of pounds a year to fund the non-existent respite spaces. This post is by no means a whinge or self-pity but how many people take for granted that their grandparent does sleepovers, that holiday clubs are around the corner. We get four-holiday sessions! Yes, four whole days that have to be spread across six weeks! That’s on a first-come basis, and when your child relies on the routine of school, the six weeks holidays are a battle at times.
Hints and Tips
If you are a carer yourself, are new to the responsibility, or you have been doing it for years without noticing I wanted to share a few tips on how to cope, whether you look after your child, a family member or it’s part of your job.
- Stress & Worry – Everyone is guilty of stressing and worrying its part of human nature, but it can triple with caring responsibilities. My phone is continuously within my sight just in case school phone. You may find it difficult to switch off from your caring role, especially at night. It can be easier said than done but take time for you, even if just five minutes you sit down and do something you enjoy whether it be catching up on your favourite programme or reading the new bestseller if you zone out for just five minutes it can have a positive impact on your health.
- Money – The financial burden of caring for someone is sometimes a cross between putting petrol in your car to get to work or feeding your family! I have had cereal for dinner on many occasions. As a family, I work 15 hours a week across three days. My husband is full-time carer first and a self-employed designer, but we still earn way under the lower-earning limit of £16k, so we rely on working and child tax credits and carers benefits. We are in debt and have been for many years, maxed out credit cards, loans, overdrafts. We are slowly getting ourselves back on track. My suggestion would you draw up a monthly budget, if you are in the red, try and see if you could lower any outgoings. I spend my life on websites like Turn2us and Entitledto to know if we could be entitled to more it is also helpful to see how Universal Credit will affect you. Then there are useful sites like Money Saving Expert and The Money Advice Service who can help save you money.
- Physical Health Problems – We’ve all been there. Even as parents, our needs come after the rest of the family but what happens if due to your avoidance that you suddenly couldn’t care for your loved ones. My back has been playing up for years, and I avoided it until it was so bad last year that I could barely move! I remember at the time just feeling down, tired and with no energy. Please don’t suffer alone, approach your GP for the support!
- Anxiety & Depression – It’s not like you wake up one morning and feel down or low or depressed. From personal experience, it sneaks up on you. I remember having a bad day and just wanting to stay at home under my duvet, so I did. That was when I realised the low days were pretty constant. I suffered alone for a long time; I didn’t want to ‘bother’ anyone with my feelings or problems. Then one day, it felt like hitting a wall. I didn’t want to live my life anymore. Now, I’m not saying I wanted to commit suicide (that’s not me); however, I hated my life. I tried to run away, get on an aeroplane and not be me for a while. Thankfully I didn’t. Instead, I spoke to my GP, who took it all very seriously. I still get moments of extreme anxiety, over silly things like attending job interviews, I’ll be honest and say last year I cancelled three meetings due to my anxiety. Never feel alone, there are professionals out there, who don’t judge, don’t make you feel stupid; it is their job to give you what you need! It’s hitting the news so often these days of teenagers as young as 13 taking their own lives because no one is listening! I was very good at masking how I was feeling; chatty little me was so used to doing it that it was second nature but hitting that wall was a wake-up call. Please don’t suffer in silence!
- Social Isolation – I have always been a sociable person, coffee date, shopping, anything to get me out of the house. But there is the other side of being a carer when you feel guilty for having a life. My husband isn’t a great one for ‘going’ out. So I often feel guilty when I do. However, I had learnt that my anxiety and depression was at its peak when I wasn’t going out, and I wasn’t enjoying work. But I’ve learnt in the last year to say ‘yes’ to experiences. My son is at a special school, a group of parents, I can connect with as we all have the same level of sleep deprivation, the same issues of doing normal things. Suddenly, a group I could have a coffee with and not feel like I was alone. I guess the point I’m trying to make is. When was the last time you checked to see if your friend was okay? Have you asked them out for a coffee? I’m not just talking about friends who are carers! This counts for everyone!
This post today was inspired by the charity Mind. They are a charity who believe no-one should have to face a mental health problem alone. If you would like to know more about the charity and how it could help you or a loved one, please click on the link above.
So…I’m still a Mum who just happens to care for a hyperactive boy with cerebral palsy, epilepsy and learning difficulties.