I always need to think what my mum can’t do.

Kenny is 36 years old; he has been caring for his mum (60) who has Huntington’s disease since he left university. Besides being his mum’s carer, Kenny holds down a demanding full-time job.

For a long time, I’ve dreamed of having a BMW 3-series. I’d saved up for a long time and I’d been keeping my eye out. But you know what, reality kicks in. I realized it would be too difficult for my mum to get in and out.

I always need to think what my mum can’t do. My life gets put on hold. We’re trapped in a bubble together. Everything [I need] comes second. I can be jealous sometimes. But there’s no point in being angry.

Working life

At the start of the pandemic, I’d been working for four and half years in the criminal justice system, in a very demanding role with a lot of time pressures. My [work life] was very regimented. I was on autopilot, putting on a suit, going to work. My senior colleagues know I am a carer. But it was very tough mentally and physically doing the job and being a carer too. At the end of a day’s work there’s no time for yourself [to reset]. Straightaway, you have to get this done, that done.

Even if I go out for a drink after work it can only ever be one drink. You can’t stay. You’re always thinking about the person you care for and what you need to do next.

When you’re doing something this demanding, eventually something has to give [unless] you are from Krypton. You’re under pressure the whole time.

In a typical day, I’ll get up at 7am, make breakfast, clean up, do online shopping before work. Pre-Covid my mum attended a day centre three times a week. But that was cancelled. I also used to take my mum to the gym. She could walk on the treadmill and we’d use the bikes.

I do everything for my mum. I’ve even dyed her hair. She likes to go shopping with me and choose the best deals. When you are spending 87% of your day at home, for her, it’s a way of having some control.

Lockdown

Caring can be a nightmare sometimes. Especially now when we’re spending so much time at home. When things aren’t going well, I’ve learnt to accept it’s the illness speaking, not my Mum. My mum has always been extremely strong, but it’s hard seeing her now and remembering how she was.

At the beginning of lockdown, when I was working from home, leading a Zoom meeting, my mum wanted my attention. She started banging on the door, playing music at full blast. I snapped completely. I knew I was in trouble and I couldn’t manage.

My employer was very understanding. I asked to be redeployed within my organization so I could continue to work and cope with my caring responsibilities

The future

I was very glad to step back, say, “hold on, where am I going.” You stop taking care of yourself, your fitness, relationships, career. You get trapped in a cycle. It becomes robotic. It never stops. Because you’ve got to do this.

I know I’ll get my [career] chance again. I’ve still got a long way I want to go. I’ve got lots of ambitions and lives to live. I always look at the big picture.

Getting support

My advice to carers? Don’t try to do it all alone. Leave the door open. Take the support that’s offered. I’m not professionally qualified.

There are days when I’ve been in a really  strained frame of mind. I’ve been in a dark place. Talking to Wendy [CSM Carers Needs Assessor] has really cheered me and helped change direction. I’m really grateful.

 I’d love to speak to other carers too.

Becoming a carer

My siblings were making plans, there was a mutual understanding. I didn’t pay that much attention. [when you start] you don’t know how much it’s going to impact your life.

It’s soul destroying sometimes. It’s the way it is. You’ve got to be flexible. Lots of families have been struggling in lockdown and haven’t been able to do it anymore. Some aspects have been easier for me.

Celebrating Christmas

My sister lives in France. Usually, we’d be going there. It’s a break for both us, but I don’t know what will happen this year.

All I want for Christmas?

To be left alone. To have a lie in until 11, drink a beer, order a pizza, play on my game console. Do whatever I wanted for one day

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