Janet Malcolm

Brain injuries can change many lives in an instant, often irreversibly altering family and relationship dynamics.

Caring for someone with a brain injury can often be a lonely and frustrating experience, particularly if you do not have support networks in place.

To mark Carers Week (12-18 June), here we share a day in the life of a carer – with full recognition of the differing experiences of carers across the UK.

When former fireman Andy Malcolm had a stroke in 2014, his life and the life of his wife Janet were changed forever.

After 49 years of marriage, Janet was suddenly no longer just Andy’s wife, but also his full time carer.

Andy was left with paralysis of his left side and aphasia, which continues to make communication between the couple a challenge.

The couple attend Edinburgh Headway where they meet other carers, allowing Janet to benefit from friendships and mutual support, which goes some way to tackling the isolation carers often feel.

In 2016, Janet was a finalist in the Carer of the Year category of the Headway Annual Awards.

8am

I get myself and Andy up and ready. He has refused to get out of bed a couple of times recently, so today I’m pleased. He goes for his shower, holds out the shampoo bottle and I have to go and squeeze it for him because he forgets how to. He dries himself then I dry his back because he forgets to do that too. I dress him but he can do his own hair and clean his teeth.

10am

Andy has been poorly for the past fortnight and in that time I haven’t spoken to a single soul. He doesn’t have much speech so I feel very isolated. Before, I had the freedom to put on a coat and go anywhere. But when you’re a carer you’ve got somebody to look after, you don’t have the freedom to have a life of your own. You don’t have anyone to talk to because you don’t go out of the house and see anybody. You go shopping and hold up the queue speaking to the person at the till just to have someone to talk to.

He needs to be independent, but it’s very difficult to allow him to make mistakes.

11.30am

Andy and I go out for a walk; he uses his mobility scooter. It took me three months to teach him to use it but now he can go out on it alone. I don’t have to run after him to teach him how to cross the road anymore. He needs to be independent, but it’s very difficult to allow him to make mistakes. I’m not happy about it but if something happens, it happens. In a way, it’s like having a child again.

12pm

I’ve messaged my friend asking if she would like to go for coffee next week. Last time we arranged to meet we were getting ready and Andy decided he wasn’t going. This happens all the time, but he won’t tell me why. Sometimes our friends are sitting in the restaurant waiting. The more it happens, the less people invite us. We’re at the stage now where people don’t invite us.

2pm

Andy used to be a very active person and over the past three years I’ve tried to get him involved in lots of activities that have all failed miserably. But at long last, he’s started bowls! He was invited to join a bowls group with other disabled people and he’s been going to indoor lessons over winter. It’s not on the doorstop but I don’t care! His coach just called to say he thinks Andy can hold his own with others. There’s another chap in the same position as Andy and he’s going to go with him. It’s taken months to get to this stage but if you keep working at it and talking to people you find ways.

I felt so isolated, so at sea, I didn’t know where to turn.

5pm

We go to the Edinburgh Headway supper club, which is held once a month. I didn’t used to go to any clubs; I’m not one to join in. But I felt so isolated, so at sea, I didn’t know where to turn. Getting it out of your system is the best thing. If you meet up with ordinary friends they say ‘I feel so sorry for you’. That’s not what you want; you want friends to support you and come up with ideas and make your life and your husband’s life as good as possible. You learn things from other carers about how they cope. That’s what I get at Headway.

9pm

Tomorrow we’ll be going to the cinema with some friends so I call them to make arrangements. Every week there’s a senior screen for pensioners. We go on the bus instead of driving because there may come a day when I can’t drive so Andy needs to be used to travelling on the bus. We aim to arrive at about 10.15am and have a cup of tea and biscuits. I used to go before Andy’s brain injury but now he comes with me and it’s great. Everybody is so friendly, they always come up to say hello.

10pm

Once I have helped Andy get into bed, I go downstairs and use the last hour of the day to relax and recharge my batteries. I do this by watching some television or playing a game on my laptop. If I don’t take this time for myself, I find I cannot get to sleep and thoughts just race through my mind. Once I feel relaxed enough, I go to bed, ready to start all over again.

If you are caring for someone with a brain injury and would like support, visit the carers section of the Headway website or contact our helpline.