Sally’s Story: Who’s caring for carers?

There are an estimated seven million carers in the UK and research suggests that as many as three in five people will take on the position at some point in their lives. This can often happen completely out of the blue, as Sally found. Many carers will experience carer depression, usually as a result of […]

Sally’s Story: Who’s caring for carers?

By The Mind Map/ Sally Aquire

There are an estimated seven million carers in the UK and research suggests that as many as three in five people will take on the position at some point in their lives. This can often happen completely out of the blue, as Sally found.

Many carers will experience carer depression, usually as a result of ongoing anxiety and stress linked to their duties. Being constantly “on call” can take a big toll on both mind and body. With so much attention focused on someone else’s needs, it’s perhaps inevitable that many carers struggle with their mental health. If you’re already struggling mentally, the responsibilities can exaggerate a condition. We spoke to mental health writer Sally Aquire about her experiences in the role…

Tell us a little bit about how you become a carer … 
My dad and I became full time carers overnight after a sudden stroke left my mum bed bound and immobile.

After seven weeks in hospital, her recovery was slow but there were some encouraging signs. She had learnt to talk and swallow again but was still paralysed down one side of her body and unable to do a lot of day-to-day tasks. She couldn’t feed herself very well, obviously wasn’t able to dress herself, get in the shower or get to the toilet, for example.

Because she has never been able to move around and get upstairs, we’ve turned one of the downstairs rooms into a makeshift bedroom with a hospital style bed taking up most of the space.

What type of practical support have you received to help you out?
From the day after she came from hospital, we have had support from care workers who initially came several times per day to help out with washing, dressing and toileting. A couple of years on, this has dropped down to just the one visit per day for washing and dressing. The other visits didn’t quite work out as, with the best intentions in the world, you can’t guarantee that calls to nature will coincide with when they arrive! And they very rarely did. After around a year, it was decided that the other visits would be dropped and only the morning call would remain.

We also had some great support from The Stroke Association, who would come out to us and help us with lots of different things. They supported us with applications to get a Blue Badge and an Attendance Allowance. Having worked with so many other stroke survivors and their families, they were really helpful from an emotional perspective, too.

We’ve also had practical support from physiotherapists, who have worked hard in trying to get her more mobility and independence.

“Spending time on yourself might feel selfish and can make you feel guilty, but you can burn out very quickly in the role otherwise”

How has the situation affected your mental health? 
In the early days, there was the stress and worry about what would happen in the immediate aftermath of the stroke and how it would affect the future.

Since then, it’s been more of an ongoing type of stress. I’ve had anxiety since I was in my late teens and have never handled lots of stress very well, so it was probably inevitable that caring would affect my mental health.

As well as the day-to-day stress of having someone so dependent on you, there is also the anxiety about the person you’re caring for, which is there most of the time.

It grinds you down mentally and can turn physical. Aches and pains are par for the course, mostly due to the hands-on side of caring for someone who is bed bound. Feeling very tired and run down has also been part of the average day. You feel as though you have to be strong, though, even if you don’t feel like it most days.

What about nights, do you manage to switch off of an evening?
Sleep is a big problem. With so many thoughts and worries going through your mind, it’s difficult to get a good night’s rest. Obviously that impacts the next day. I resisted going on any kind of medication for ages as I didn’t want to be feeling spaced out when I was in my caring role but in the end, lack of sleep makes you feel pretty zombie-like anyway! At the moment, I feel like I could sleep for weeks, given half the chance.

Over time, I’ve learnt that I have to step back and take a bit of time for myself, even if that’s only five minutes of meditation or going for a walk. There can be a sense of guilt involved when you do spend time on yourself but it’s something you have to push past, for your own sanity if nothing else!

It’s also fairly common for other people to have no real idea of what is involved in being a carer, unless they have any personal experience of it. I found myself feeling envious of people who seemed to have a “normal”, carefree life and that tends to add to the social isolation.

What advice would you give to other carers? 
Based on my own experiences, my advice would be to get as much help and support as you can, especially for the mental health side of things.

Becoming a carer involves a big change in lifestyle and it really helps if you have an understanding GP who is aware of your situation and how it’s affecting you.

Spending time on yourself might feel selfish and can make you feel guilty, but you can burn out very quickly in the role otherwise.

Of course, you want to do the best you can for the person you’re caring for because they mean so much to you but at the same time, you need to find a balance and look out for yourself, too.

Staying upbeat can also help, even if you don’t feel at all positive! Trying to find something positive from your day has been shown to improve both mental and physical health. As a carer, there are bound to be lots of things that you have had success with in the average day and challenges that you have dealt with successfully. Hold onto these, however small they are and use them to remind yourself of how capable you are. This can help a lot on the bad days, when you feel that everything is getting on top of you and you doubt your ability as a carer.

More advice for carers: https://www.carersuk.org

Follow Sally on Twitter Here

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